Pain Conditions

What is Cancer-Related Pain?

Pain is very common in patients with cancer, and can be disabling. At least half of people with cancer experience pain. For patients who have active cancer, the cancer itself can cause pain. The pain is often felt where the cancer is located, such as in the bones, the abdomen, or the brain. Alternatively, for patients with cancer who are undergoing treatment or who are survivors of cancer, the cancer treatments themselves can cause pain. For example, surgery and radiation therapy can cause long-term pain related to scar formation or nerve damage. Chemotherapy and targeted therapies can cause muscle and bone pain, as well as painful nerve damage in the hands and feet. Pain due to treatment can be either acute, primarily occurring near the time the treatment is administered, or can be chronic, lasting for months or years after treatment is complete. Chronic pain can negatively impact many aspects of a person’s life, including daily activities, relationships, work, and school. It is important to understand the etiology of the pain so that appropriate treatments can be used.

Symptoms

• Pain at the site of the tumor: Tumors can directly cause pain. You can also have pain at the site where the cancer used to be even after it has been removed, sometimes called “phantom pain”.
• Musculoskeletal pain: Pain in the bones, muscles, and joints can be due to multiple factors, including the cancer itself as well as acute and long-term effects of therapies.
• Nerve pain: Nerves can be damaged as a result of cancer or the treatment. Often the pain resulting from the nerve damage can be permanent.
• Mouth and skin pain: Treatments, primarily chemotherapy and radiation therapy, can cause painful mouth sores and skin rashes.
• Associated symptoms: Many patients with cancer-related pain can also experience other symptoms, including fatigue, sleep difficulties, anxiety, and depression.

What Causes Cancer-Related Pain?

Cancer-related pain can be due to multiple causes. First, cancer itself can cause pain by directly infiltrating nerves, bones, or the spinal cord, by weakening bones leading to fracture, by causing swelling in structures including the brain and liver, or by causing blockages in organs such as the bowel. In addition, cancer treatments can cause both acute and chronic pain. For example, chemotherapy drugs can cause painful numbness and tingling of the extremities, which can be permanent. Radiation therapy can cause damage to nerves and bones, which can lead to pain. Surgery can lead to swelling in the extremities, called lymphedema, which can be painful.

Diagnosis of Cancer-Related Pain

Imaging studies such as plain x-rays, CT scans, bone scans, and PET scans are frequently used to determine where cancers are located and if there are any associated findings, such as blockages or fractures. Occasionally MRI scans are used to evaluate patients with pain, especially to obtain more detail about potential effects of the cancer on the brain, the spinal cord, and groups of nerves.

Many chronic pain syndromes that occur following treatment, such as peripheral neuropathy and lymphedema, are generally diagnosed based on symptoms reported by patients or physical exam findings. Occasionally additional testing, such as electromyelograms, may be used.

Patients with advanced cancer are more likely to experience pain than patients with localized cancer. Younger patients are also more likely to report pain.

Who treats Cancer-Related Pain?

Cancer-related pain is generally treated by primary care doctors (family practice, internists) and cancer doctors (oncologists, surgeons). While these doctors often coordinate the care, optimal care often requires a team approach. This team might include the following specialists:

• Oncologists – physicians specializing in cancer treatment
• Surgical oncologists – physicians who do surgery for cancer
• Advanced practice providers (nurse practitioners, physician assistants) who specialize in cancer treatment and often work with oncologists
• Palliative care providers – physicians and advanced practice providers who specialize in managing pain and associated symptoms
• Physical and occupational therapists – healthcare professionals who provide therapy to patients to allow them to improve their functional status, especially in the setting of fractures and other joint injuries. Some of these providers specialize in management of lymphedema.
• Integrative health practitioners - specialists who use mindfulness and other positive behavioral approaches to improve pain symptoms, promote healing, and improve functional status and overall well-being

These healthcare providers work with patients with cancer-related pain to improve symptoms, overall well-being and quality of life. It is likely that you and your doctor will need to work together to identify the best combination of professional and self-care approaches that works for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of Cancer-Related Pain

The treatment/management of cancer-related pain can take many forms. We identify the various approaches below. You can follow the link to learn more details about each treatment/management strategy.

• Self-Care – Combining self-care with professionally led care can create an optimal approach to successful management of RA. There are many changes in your lifestyle that can help you to improve the symptoms of RA. If you are a smoker, it is important to stop smoking. It is also important to stay active. Regular exercise can strengthen muscles and help preserve joint motion and endurance. What you choose to focus on needs to be personalized to your specific situation. (The link above will take you to a description of the many self-management approaches others have found helpful). You may want to talk with your healthcare provider to identify the self-care approaches that would be best for you at the present time.
• Professional Care – The cornerstone of treatment for RA is medication to decrease inflammation in the joints. These medications include nonsteroidal anti-inflammatory drugs (NSAIDs), steroids, and disease-modifying antirheumatic drugs (DMARDs). DMARDs include conventional DMARDs (e.g., methotrexate, hydroxychloroquine, sulfasalazine, leflunomide), biologic DMARDs (e.g., tumor necrosis factor inhibitors, interleukin-6 receptor antagonists, selective T-cell co-stimulation blocker), and newer small-molecule DMARDs (e.g., tofacitinib, baricitinib, upadacitinib). In cases of long-standing disease, treatment may also include surgery, though this is becoming less common as effective medications for RA have been developed. Non-drug therapies include physical therapy and occupational therapy to relieve pain, maintain range of motion, and prevent contractures and deformities. Nutritionists may advise on strategies to lose weight and lower risk for cardiovascular disease, which is elevated among RA patients. Education and counseling may also be helpful in enabling you to control and cope with RA symptoms. Behavioral approaches include biofeedback and psychotherapy. The link above will take you to a description of many professionally led approaches to chronic pain management.

Additional Resources

• American Society of Clinical Oncology/Cancer.Net
• American Cancer Society
• National Cancer Institute
• Livestrong
• National Lymphedema Network

What is CRPS?

Complex Regional Pain Syndrome (CRPS; also called Reflex Sympathetic Dystrophy or causalgia) is a rare, disabling disease that is characterized by pain and a variety of other symptoms such as color or temperature changes at the painful site, swelling, neurological and muscle dysfunction, and disorders of the skin, nails, hair, bone and the immune system. The collection and number of these symptoms determines the diagnosis. It can be a serious illness and usually occurs in response to trauma such as severe sprain, bone fracture, crush injury or surgery. It may be disabling and can negatively impact many aspects of a person’s life, including daily activities, relationships, work or school.

It is classified as a rare disorder by the United States Food and Drug Administration. However, up to 200,000 individuals may experience this condition in the United States in any given year.

Diagnosis

Recently, a standard diagnostic criterion has been established, and this must be determined by a doctor skilled and experienced in the disorder. Any trained doctor can make the diagnosis if the criteria are followed, but often it takes a pain specialist to diagnose definitively. The diagnosis can be made in a doctor’s office without any special diagnostic tests. Early diagnosis is generally the key to better outcomes, however, diagnosing CRPS/RSD is not a simple matter and many patients may search for months (or even years) for a definitive diagnosis of CRPS. Lists of doctors who are experienced in the diagnosis and treatment of CRPS can be found on the patient advocacy group’s web site (the Reflex Sympathetic Dystrophy Syndrome Association of America (see references for a website link).

Diagnostic features of CRPS

• Pain that is described as deep, aching, cold, burning, and/or increased skin sensitivity
• An initiating injury or traumatic event, such as a sprain, fracture, surgery, etc., that should not cause such prolonged severe pain and where the pain does not subside with healing
• Pain (moderate-to-severe) associated with allodynia, that is, pain from something that should not cause pain, such as the touch of clothing or a shower
• Continuing pain (moderate-to-severe) associated with hyperalgesia (that is, heightened sensitivity to painful stimulation)
• Abnormal swelling in the affected part of the body
• Abnormal hair or nail growth
• Abnormal skin color changes
• Abnormal skin temperature, that is, the affected part is warmer or colder than the unaffected part
• Abnormal sweating of the affected area
• Limited range of motion, weakness, or other motor disorders such as paralysis or dystonia
• Symptoms and signs can wax and wane
• Can affect anyone, but is more common in women, with a recent increase in the number of children and adolescents who are diagnosed

The disease always starts in a limb, but can sometimes spread toward the center of the body. Very rarely the disease can spread to distant parts of the body, but this is usually due to changes in the brain as a response to severe pain. The pain is sometimes persistent and intense, and is often disruptive of many features of life, so sometimes patients may suffer from other disorders such as insomnia, depression and anxiety as a response to the pain and suffering.

Treatment

The persistent pain and disability associated with CRPS/RSD requires coordinated, patient-centered care by teams of different types of experienced professionals to achieve pain reduction/cessation and better function. Usually an experienced specialist is needed to coordinate these multiple therapies and types of medical professionals. Doctors that have this special training are often physiatrists (rehabilitation doctors), pain specialists, anesthesiologists or psychologists. The treatment goals are not only to relieve pain but to improve function and restore normal activities of daily living.

Important features of proper CRPS treatment are medications, physical therapy, occupational therapy and behavioral psychotherapy. Certain very specialized treatments such as biofeedback, mirror box therapy, etc. can help. In specific cases, nerve blocks, corrective surgery and rarely spinal cord stimulators may be needed if less invasive therapies are not beneficial.

Resources The Reflex Sympathetic Dystrophy Syndrome Association of America

What is Geriatric Pain?

If you are an older person experiencing persistent pain, you are not alone. Up to half of older adults experience bothersome chronic pain. Over time, pain can begin to have a negative impact on daily life. Some people may limit their activities, including social and leisure pursuits.

Having chronic pain may increase the risk of falling. It also increases anxiety about falls, which causes some older adults to become less active. Ask your doctor about ways you can improve your balance and prevent falls.

Risks and side effects from both over-the-counter and prescription pain medications increase with age. For this reason, your doctor will “start low and go slow” with pain medications, and closely monitor you to make sure you are not experiencing any negative effects. Non-medication approaches to managing pain are especially helpful for older adults, as these tend to be very safe.

Some older adults may be reluctant to report pain to their doctors because they believe pain is a natural part of aging. For others, sensory or cognitive impairments may get in the way of accurately reporting pain to healthcare providers. Special attention and support is needed to adequately assess and manage pain in the presence of these aging-related challenges.

Symptoms

• Musculoskeletal pain: Many older adults have pain in their muscles and joints — especially in their back, knees, and hips. The most common pain condition in older adults is osteoarthritis, which causes stiffness and pain in the affected joints.
• Nerve pain: Nerves can be damaged as a result of certain health conditions such as diabetes, herpes zoster (shingles), or stroke. This damage can cause a tingling, prickling, or burning sensation.
• Regardless of the type of pain, many older adults with pain also experience other symptoms, including fatigue, sleep difficulties, anxiety, and depression. You can improve these symptoms with a combination of self-care strategies and professional care, as described below.

What Causes Geriatric Pain?  

Chronic pain in older adults has many causes. Musculoskeletal conditions, such as arthritis, low back pain and osteoporosis-related fractures, are often linked to aging-related changes such as loss of bone minerals, reduced muscle mass, and wear and tear on joints over time.

Diabetes, vitamin B12 deficiency, and herpes zoster (shingles) are frequent causes of peripheral nerve damage, also called neuropathies, among older adults. Examples of central nervous system conditions in which nerves can be damaged include post-stroke pain and spinal cord injury.

Finally, pain may be present in the advanced stages of certain conditions that do not usually cause pain in earlier phases. These include congestive heart failure, chronic kidney disease, and chronic obstructive pulmonary disease.

Diagnosis of Geriatric Pain

To diagnose most pain conditions, doctors use information from various sources including medical history, physical exams, imaging studies such as x-rays and MRIs, and sometimes, blood tests or joint fluid samples. For some types of neuropathic pain (pain from the nerves), additional evaluations such as electrodiagnostic testing may be used.

Comprehensive geriatric assessments may be useful for some older adults who have chronic pain along with other health and functioning challenges. These assessments involve multiple healthcare practitioners working as a team. They are done to understand the functional ability, physical health, cognition and mental health, medications, and social and environmental circumstances of an older adult. A comprehensive geriatric pain assessment looks particularly at the impact of chronic pain on functioning, identifies beliefs about pain as well as treatment goals and expectations, and reviews comorbidities and drugs. Whether a geriatric assessment is pain-focused or more general, the information collected can guide the development of a tailored pain treatment plan that reflects patient expectations and goals.

Who treats Geriatric Pain?

Pain in older people is generally treated by primary care doctors (family practice, internists) and specialists in the conditions causing pain (neurologists, rheumatologists). While these doctors often coordinate care, optimal care requires a team approach. This team might include the following specialists:

• Geriatricians – physicians who specialize in the care of older adults.
• Advanced practice providers (nurse practitioners, physician assistants) who specialize in the care of older adults.
• Physical and occupational therapists – providers who offer therapy to patients to improve their functional status, especially when treating fractures and other joint injuries.
• Social workers – providers who work with patients to help them cope with changing health needs while also connecting them with community resources and support.
• Palliative care providers – physicians and advanced practice providers who specialize in managing pain and associated symptoms.
• Integrative health practitioners - specialists who use mindfulness and other positive behavioral approaches to improve pain symptoms, promote healing, and improve functional status and overall well-being.

These healthcare providers work with older patients to improve symptoms, overall well-being, and quality of life. It is likely that you and your doctor will need to work together to identify the best combination of professional and self-care approaches that works for you.  This plan will need to be reviewed and potentially changed over time as your needs shift.

Treatment of Geriatric Pain

The treatment/management of geriatric pain can take many forms. You can follow the links below to learn more details about each treatment/management strategy.

• Self-Care – Combining self-care with professionally led care can create an optimal approach to successful management of RA. There are many changes in your lifestyle that can help you to improve the symptoms of RA. If you are a smoker, it is important to stop smoking. It is also important to stay active. Regular exercise can strengthen muscles and help preserve joint motion and endurance. What you choose to focus on needs to be personalized to your specific situation. (The link above will take you to a description of the many self-management approaches others have found helpful). You may want to talk with your healthcare provider to identify the self-care approaches that would be best for you at the present time.
• Professional Care – The cornerstone of treatment for RA is medication to decrease inflammation in the joints. These medications include nonsteroidal anti-inflammatory drugs (NSAIDs), steroids, and disease-modifying antirheumatic drugs (DMARDs). DMARDs include conventional DMARDs (e.g., methotrexate, hydroxychloroquine, sulfasalazine, leflunomide), biologic DMARDs (e.g., tumor necrosis factor inhibitors, interleukin-6 receptor antagonists, selective T-cell co-stimulation blocker), and newer small-molecule DMARDs (e.g., tofacitinib, baricitinib, upadacitinib). In cases of long-standing disease, treatment may also include surgery, though this is becoming less common as effective medications for RA have been developed. Non-drug therapies include physical therapy and occupational therapy to relieve pain, maintain range of motion, and prevent contractures and deformities. Nutritionists may advise on strategies to lose weight and lower risk for cardiovascular disease, which is elevated among RA patients. Education and counseling may also be helpful in enabling you to control and cope with RA symptoms. Behavioral approaches include biofeedback and psychotherapy. The link above will take you to a description of many professionally led approaches to chronic pain management.

ADDITIONAL RESOURCES for Geriatric Pain

American Chronic Pain Association

Arthritis Foundation

U.S. National Library of Medicine

National Institute on Aging Go4Life program (Exercise for older adults)

What is Multiple Sclerosis?

Multiple Sclerosis (MS) is an autoimmune mediated condition of the central nervous system (the brain, spinal cord, and optic nerves). In people with MS, myelin, or the fatty cells that surround and insulate nerve cells, as well as the nerve cells themselves are damaged. This damage interrupts normal message transmission across cells. There are different subtypes of MS that are distinct in terms of disease course.

The types of MS are:

• Clinically Isolated Syndrome (CIS). CIS does not technically meet criteria for an MS diagnosis, but is the first episode of neurological symptoms that are typically characteristic of MS.
• Relapsing Remitting MS (RRMS). RRMS is the most common MS course and is characterized by distinct periods of worsened neurological symptoms (“exacerbations”) followed by periods of complete or partial recovery (“remission”)
• Secondary Progressive (SPMS) MS. SPMS initially follows a RRMS course which eventually transitions to a period where neurological symptoms worsen progressively over time.
• Primary Progressive MS (PPMS). PPMS is characterized by a progressive worsening of neurological symptoms and disability over time, with no initial period of RRMS.

How is MS diagnosed?

A definitive diagnosis of MS is typically made by a Neurologist through identification of damage to the central nervous system on a magnetic resonance image (MRI), observed as “lesions” indicative of myelin and/or nerve cell damage.

How many people have MS?

Current estimates indicate that approximately 1 million adults in the United States have MS. This new estimate, established in an innovative prevalence study published in 2019 in the journal Neurology, indicates about twice as many people with MS as previously suspected. It is not clear whether the rate of new cases of MS are increasing or whether the growing number of MS cases is due to population growth or better and more accurate diagnoses of the disease. Work is ongoing internationally to determine whether the rate of new MS cases is changing.

Common MS Symptoms

Different people with MS can present with very distinct symptom profiles; no two people with MS are exactly alike. However, there are a number of symptoms that are commonly experienced by people with MS.

• Motor symptoms, including problems walking and using one’s hands, are hallmark symptoms of MS
• Fatigue is one of the most commonly reported symptoms, with approximately 80% of people reporting clinically significant fatigue. Many people with MS report fatigue as their most prominent symptom.
• Muscle spasticity and muscle weakness, which can be experienced anywhere in the body, but often most noticed in the legs, are both common symptoms in MS. Spasticity, or feelings of stiffness of spasms can cause pain and fatigue. Muscle weakness is also often experienced in conjunction with physical fatigue.
• Pain is very common in MS and it is estimated that 55% of people have clinically significant pain. MS is related to specific types of pain, such as facial pain known as trigeminal neuralgia, head and spine pain called Lhermittes signal, and painful pressure around the torso often referred to as an “MS hug”.
• Numbness and tingling in the face, body, and extremities is often a first symptom of MS.
• Depressed mood is common in MS and approximately half of all people with MS will experience clinical depression at some point.
• Cognitive dysfunction, including problems with memory, attention, word finding, organization, multi-tasking, and decision making often progresses to the point of cognitive impairment over time and is a common reason that people stop working or driving a car.
• Visual problems result from lesions to the optic nerve and can range from mild visual impairments such as blurred vision and poor contrast or color detection to blindness. Eye pain can accompany changes in visual acuity.
• Bladder problems occur in about 80% of people with MS.
• Bowel problems, particularly constipation, are also common in MS.

Treatment of Multiple Sclerosis

There is currently no cure for MS. Standard of care includes disease modifying therapy (DMT) to slow the progression of the disease and treatments to manage the symptoms associated with MS. There are many new DMTs coming onto the market, adding ever increasing options for patients with MS to manage their disease.

Treatments of MS symptoms can take many forms.

• Self-management of MS symptoms can take many forms. Adoption of healthy sleep, physical activity, and eating behaviors have been shown to improve MS symptoms and functional outcomes.
• Medications may be used to address many symptoms of MS, including anxious and depressed mood, fatigue, pain, and sleep disorders

• Rehabilitation is typically focused on improving a person’s functioning, though it can also help with symptom relief. Members of the rehabilitation team include:

  • Physical therapists (PT) can address problems with mobility, balance, pain, fatigue, and muscle spasticity. Physical therapists can help people with MS develop exercise programs that are customized to a person’s level of physical ability, access to facilities, and interests. PTs can provide care aimed at improving multiple MS symptoms.
  • Occupational Therapists (OT) can be helpful in addressing problems related to fine motor function (hand functioning) and activities of daily living, such as basic self-care. An occupational therapist can provide practical solutions to optimize daily functioning and provide access to and training in the use of adaptive tools and technologies. OT care can also address MS symptoms such as fatigue and pain.
  • Speech and Language Pathologists (SLP) may be indicated for people who have troubles with speech and/or swallowing.
  • Rehabilitation Physicians/Physiatrists are doctors who can provide a comprehensive rehabilitation medicine assessment, provide treatments to improve functioning and treat symptoms, and refer to rehabilitation therapists.
  • Recreational Therapists (RT) can help a person with MS engage in recreational, leisure, and other valued activities by providing opportunities for recreation.
  • Vocational Therapists help people with MS maintain employment or engage in new employment.
  • Cognitive Rehabilitation, delivered by a psychologist, OT, or SLP, involves evaluation of cognitive functioning and treatments to address MS-related changes in a person’s thinking ability (memory, concentration, etc.).

• Behavioral Health/Psychological Care can be used to address struggles with mood, such as depression and anxiety, MS symptoms, such as pain and fatigue, as well as family and marital issues that can arise with an MS diagnosis.

ADDITIONAL RESOURCES

National Multiple Sclerosis Society

MS Society of Canada

My MS Toolkit

What is Osteoarthritis?

Osteoarthritis (OA), also known as degenerative joint disease, affects 10% of men and 13% of women in the U.S. About 4 in 10 people will develop OA in their lifetime. OA is a disease that damages the slippery covering on the ends of bones in joints (cartilage). When this cartilage is worn down or missing, bones in a joint will rub together (e.g., bone on bone) which can lead to stiffness and the perception of pain. OA occurs most often in older individuals with more men having it before the age of 45 and then more women having it after the age of 45. It is also more common if you are overweight or if you have a job that puts stress on your joints.

Symptoms

In the early stages of OA, joints tend to ache after particular activities such as exercise and physical forms of work. As the disease progresses, joint stiffness and pain may become more persistent, especially upon wakening or if you have been in the same position for a prolonged period of time.

The most common joints to be affected by OA include the following:

• Hands (e.g., ends of fingers and thumbs)
• Neck
• Lower back
• Knees
• Hips
• Spine

What Causes OA?

While not everyone gets OA as they age, it is the most common form of arthritis and stems from the degeneration of joints with wear and tear over time. In susceptible people, OA can be made worse by a number of factors that include the following:

• Being overweight
• Aging
• Previous joint injury or repetitive joint stress
• Abnormalities of the joints
• Genetic defects in how joint cartilage is formed

70% of individuals over the age of 65 will have x-ray evidence of joint deterioration - but not all of those people will experience symptoms. Injury and pain perception are not perfectly related as described in the “About pain” section of Pain Guide. For most, OA is classified as a nociceptive form of pain but for some individuals, there may be elements of nociplastic pain. Different approaches to treatment may need to be considered depending upon what mechanisms of pain are active.

Diagnosis of OA

There is no single test for OA so your doctor may gather information to support a diagnosis of OA using a combination of sources. These are briefly described below:

• Medical history – It is helpful to understand both your medical history and the histories of close family members. It is also helpful to know what medications you have or are taking and which ones offer benefits and which ones do not.
• Physical exam – a physical exam will help inform your doctor about your general health in addition to the problems you are experiencing with your joints.
• X-rays and MRIs – In order to understand how much damage has been sustained by a joint, your doctor may order an x-ray (to see cartilage loss, bone damage, and bone spurs) and/or an MRI (to see damage to connective tissues). While these images of your joints can inform about the degree of damage to the joint, they cannot indicate whether or not you will experience pain.
• Blood tests – while there is no blood test for OA, your doctor may order blood tests to rule out other causes of your symptoms
• Joint fluid samples – joint fluid samples can help identify the presence of infection or gout which may be associated with pain.

Who treats OA?

OA is often treated by family doctors, rheumatologists, or internists. While these doctors often coordinate the care, optimal care often requires a team approach. This team can include the following specialists:

• Rheumatologist – physicians specializing in arthritis and other diseases of the bones, joints, and muscles
• Physiatrists – physicians specifically trained in physical medicine and rehabilitation who often lead a team of medical professionals to optimize rehabilitation and long-term care
• Orthopaedists –physicians specializing in the treatment of bones and joints using surgery, casting, or braces
• Nurse educators – specialists who can educate about the condition and help develop or refine a personalized treatment plan
• Physical therapists – specialists trained in mobilizing muscles, bones, and joints through exercise, hands-on care, and patient education
• Occupational therapists – specialists trained in teaching ways to protect joints, conserve energy, engage more fully in activities of daily living, and patient education.
• Psychologists or social workers – specialists who can help initiate and maintain self-care approaches to pain management and who can help address social challenges associated with dealing with chronic pain
• Dietitians - specialists who teach about optimal diets and maintaining a healthy weight
• Acupuncturists - specialists who may influence pain perception, promote healing, and improve functional status by stimulating specific points on the body often by inserting needles into the skin
• Chiropractors – specialists that focus on neuromuscular disorders and who tend to offer treatment focused upon manual adjustment and /or manipulation of the spine
• Massage therapists – specialists offering pain relief by pressing and rubbing the muscles and soft tissues of the body

Most importantly however YOU need to be a member of the team. Much of OA management can be done at home, by you, and does not require seeing a doctor. The parts that you can do may require some changes in how you live your life. You will need to stick to this plan for better pain control.

It is likely that you and your doctor will need to team up to identify the best combination of professional and self-care approaches that work for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of OA

The treatment/management of OA can take many forms. We identify the various approaches below. You can follow the link to learn more details about each treatment/management strategy.

• Self-Care – There are many changes in your lifestyle that can help you to improve the symptoms of OA. What you choose to focus on needs to be personalized to your specific situation. (The link above will take you to a description of the many self-management approaches others have found helpful.) You may want to talk with your doctor to identify the self-care approaches that would be best for you at the present time.
• Professional Care – Combining self-care with professionally lead care can create an optimal approach to successful management of OA. The link above will take you to a description of the many professionally lead approaches to chronic pain management. For OA, the most common approaches include medications (e.g., over-the-counter pain relievers, nonsteroidal anti-inflammatory drugs (NSAIDS), corticosteroids, and hyaluronic acid substitutes), surgery (e.g., arthroscopic debridement, osteotomy, joint resurfacing, artificial joints), transcutaneous electrical nerve stimulation (TENS), massage, and acupuncture. In addition, exercise, weight control, heat and cold therapies, and nutritional supplements can also be helpful.

Additional Resources

• American College of Rheumatology
• National Institute of Arthritis and Musculoskeletal and Skin Diseases, (NIH)
• Arthritis Foundation
• Chronic Pain Research Alliance
• Chronic Pain and Fatigue Research Center (CPFRC)

What is chronic, non-cancer pediatric pain?

Pediatric chronic pain is a common problem, affecting 1.7 million children and adolescents, which is around 10–20% of youth living in the United States and costs almost $20 billion each year. Children and adolescents with chronic pain experience decreased academic, physical, and social functioning, as well as changes in sleep, mood, and anxiety. The most common forms of pain in youth include headaches, stomach aches, muscle/joint pain and back pain. While the pain may start in one location and stay there, it is common for children to report pain in multiple places in their body that may become persistent. The pattern of the pain becoming chronic is concerning to both the child and parents, creating substantial distress. Combined with the anticipated stressors of growing into adulthood, this can become quite overwhelming. This increased distress confers additional risk of falling behind in school due to increased absences, sleep disruption, exacerbation of depression and affective distress, along with disruption in family functioning. As a result, treatment is often most effective when an interdisciplinary team of providers gets involved to help manage the pain symptoms, helping the child to return to their normal activities and ensuring the focus stays on their continued development toward independent adulthood.

Symptoms

• Headaches: The most common forms of headaches in children are tension type and migraine headaches.
• Abdominal pain: Stomach pain can be caused by a variety of disorders called inflammatory bowel diseases, like Crohn’s or Ulcerative Colitis, or by chronic abdominal pain like Irritable Bowel Syndrome
• Musculoskeletal pain: Pain in the bones, muscles, and joints can be due to multiple factors, including rheumatologic disorders like arthritis, lupus or other inflammatory diseases, or sometimes due to unknown factors.
• Nerve pain: Nerves can be damaged as a result of illness, injury or surgery.
• Associated symptoms: Many patients with chronic pain also experience other symptoms, including fatigue, sleep difficulties, anxiety, and depression.

What causes Pediatric Pain?

It is recommended that children and adolescents with chronic pain are evaluated by their medical provider to ensure that any specific organic concerns are addressed, such as injuries, inflammatory conditions, or mechanical imbalances. However, often there is no known underlying cause for pediatric chronic pain. Some children are more vulnerable to developing chronic pain, such as those with a family history of chronic pain, high stress, or difficulty managing emotions. The presence of these concerns, however, does not always result in pain. Despite no known underlying cause, deconditioning due to lack of movement/exercise associated with pain can actually engender more pain.

Regardless of the etiology, any pain can be equally disabling and distressing. Therefore, a focus on managing symptoms and improving functioning for all children and adolescents with non-cancer, chronic pain is crucial.

Diagnosis of Pediatric Pain

An interdisciplinary evaluation for pediatric chronic pain will be tailored to the needs of the child, and may include:

• Physical exam
• Diagnostic tests
• Psychological evaluation
• Questionnaires
• Physical functioning examination

Who treats Pediatric Pain?

Pediatric pain is generally treated first by pediatricians and primary care doctors (e.g., family practice, internists) and many times by specialists depending upon where the pain is located (gastroenterologists, neurologists, rheumatologists or orthopedics). While these doctors often coordinate the care, optimal care often requires a team approach. This team might include the following specialists:

• Pediatricians
• Family practice physicians
• Anesthesiologists/PM&R physicians
• Palliative care providers – physicians and advanced practice providers who specialize in managing pain and associated symptoms
• Physical and occupational therapists – providers who provide therapy to patients to allow them to improve their functional status, especially in the setting of fractures and other joint injuries. Some of these providers specialize in the management of widespread body pain.
• Psychologists and Social Workers – providers who can address the behavioral and emotional impact of chronic pain on functioning
• Integrative health practitioners – specialists who use mindfulness and other positive behavioral approaches to improve pain symptoms, promote healing, and improve functional status and overall well-being

These healthcare providers work with patients with a wide variety of pain to improve symptoms, overall well-being and quality of life. It is likely that you and your doctor will need to work together to identify the best combination of professional and self-care approaches that works for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of Pediatric Pain

The treatment/management of pediatric pain can take many forms. We identify the various approaches below. You can follow the links to learn more details about each treatment/management strategy.

• Self-Care – There are many changes in your lifestyle that can help you to improve the symptoms of pediatric pain. What you choose to focus on needs to be personalized to your specific situation. The link above will take you to a description of the many self-management approaches others have found helpful. You may want to talk with your healthcare provider so as to identify the self-care approaches that would be best for you at the present time.
• Professional Care – Combining self-care with professionally lead care can create an optimal approach to successful management of pediatric pain. The link above will take you to a description of the many professionally lead approaches to chronic pain management. For pediatric pain,treatment can include a combination of medications, functional, and behavioral approaches, including physical therapy, acupuncture, massage, exercise, mindfulness, and cognitive behavioral therapy. You should talk with your physician about the different options for your situation. Professional support is often available for the child with pain as well as the parents who must provide care and support to the child.

Additional Resources

International Association for the Study of Pain

Pain Bytes

State-wide list of Pediatric Pain Clinics in North America

What is Rheumatoid Arthritis?

Rheumatoid arthritis (RA) is a chronic, systemic, inflammatory disease that affects approximately 1% of the US population. Women are affected more frequently than men. About 1 in 28 women will develop RA in their lifetime, compared to 1 in 59 men. The peak age of onset is between 50 and 75 years of age. RA is characterized by recurrent joint pain, swelling and stiffness, most frequently in the hands, wrists, and feet. Symptoms can fluctuate over time. There are periods when symptoms flare, as well as periods of remission when symptoms diminish or disappear. The exact cause of RA is not clear but likely involves a combination of increased genetic risk, plus exposure to high-risk environmental factors, such as cigarette smoke. The combination of genetic and environmental factors stimulates the immune system to produce antibodies that leads to inflammation in specific areas of the body, such as the small joints of the hands and feet. Pain due to joint inflammation can affect many areas of a person’s life including work, school, daily activities and relationships. While there is currently no known cure for RA, the symptoms of RA can be managed effectively.

Symptoms

The most common symptoms of RA are joint pain, swelling and stiffness. The symptoms usually start gradually and usually affect both sides of the body.

The most common joints affected by RA include the following:

• Hands (particularly the joints connecting the fingers to the rest of the hand and the joints in the middle of the fingers)
• Wrists
• Feet (particularly the joints connecting the toes to the rest of the feet)
• Ankles
• Elbows
• Knees

Other symptoms of RA can include:

• Fatigue
• Decreased grip strength
• Muscle weakness

What Causes RA?

RA likely occurs due to a combination of genetic and environmental factors that lead to activation of the immune system. It is thought that when the body is exposed to a substance, called an antigen, an immune response is induced, leading to antibody production in the soft tissue that lines the joint. This soft tissue is called the synovium. In the synovium, new blood vessels are formed, which enable immune cells in the blood to enter the joint space. Cells within the synovium also produce substances, called cytokines, which lead to an increase in inflammatory cells in the joint space. The inflamed synovium ultimately causes breakdown of cartilage and bone.

Established risk factors for RA include:

• Female sex
• Specific genes (e.g., HLA-DRB shared epitope, PTPN22)
• Cigarette smoking
• High levels of specific blood tests (e.g., rheumatoid factor, anti-cyclic citrullinated peptide)

Other factors that have been implicated as potential risk factors for RA include:

• Infections
• Silica exposure
• Obesity
• Posttraumatic stress disorder

Diagnosis of RA

The diagnosis of RA is considered in individuals who present with joint pain and swelling in multiple joints. Several factors may be considered when making the diagnosis:

• Medical history: Joint pain, joint swelling, stiffness in the morning lasting at least an hour
• Physical examination: Joint swelling and tenderness; decreased range of motion in joints
• Blood tests: Rheumatoid factor (RF), anti-cyclic citrullinated peptide (CCP) antibodies, tests to assess levels of inflammation in the body (e.g., erythrocyte sedimentation rate, C-reactive protein)
• Imaging studies: X-rays of affected joints, usually the hands, wrists and/or feet
• Joint fluid studies: Usually only done when there is some uncertainty regarding the diagnosis to rule out other causes of joint pain, such as infection or crystalline arthritis (e.g., gout, pseudogout)

Classification criteria for identifying RA patients for research studies have been developed and can help with the diagnosis of RA in the clinic. The 2010 American College of Rheumatology/European League Against Rheumatism classification criteria include an assessment of the number and site of involved joints, blood tests for RF and anti-CCP, blood tests for levels of inflammation in the body, and symptom duration of at least 6 weeks. However, patients do not need to meet all of the classification criteria in order to have a clinical diagnosis of RA.

Who treats RA?

It is preferable for RA to be treated by a rheumatologist, a doctor who focuses on arthritis and autoimmune conditions. However, in some areas where there are no or few rheumatologists, some primary care physicians may treat RA. In these cases, it is ideal to at least touch base with a rheumatologist from time to time, though the primary care physician may be more involved in routine care. Optimal care requires a team approach. Team members may include the following specialists:

• Rheumatologists: physicians specializing in arthritis and autoimmune conditions
• Advanced practice providers: nurse practitioners and physician assistants who specialize in rheumatologic conditions and often work with rheumatologists
• Orthopedists: physicians specializing in the treatment of bones and joints using surgery, casting, or braces
• Podiatrists: specialists in the diagnosis and management of conditions affecting the feet and ankles
• Physical therapists: specialists trained in mobilizing muscles, bones, and joints through exercise, hands-on care, and patient education
• Occupational therapists: specialists trained in teaching ways to protect joints, conserve energy, engage more fully in activities of daily living, and patient education
• Psychologists or social workers: specialists who can help initiate and maintain self-care approaches to pain management and who can help address social challenges associated with dealing with chronic pain
• Nutritionists: specialists who teach about optimal diets and maintaining a healthy weight
• Acupuncturists: specialists who may influence pain perception, promote healing, and improve functional status by stimulating specific points on the body often by inserting needles into the skin
• Massage therapists: specialists offering pain relief by pressing and rubbing the muscles and soft tissues of the body

Most importantly however YOU need to be a member of the team. Much of OA management can be done at home, by you, and does not require seeing a doctor. The parts that you can do may require some changes in how you live your life. You will need to stick to this plan for better pain control.

These healthcare providers work with patients with RA to improve symptoms, overall well-being, and quality of life. It is likely that you and your doctor will need to work together to identify the best combination of professional and self-care approaches that works for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of RA

The treatment/management of RA can take many forms. We identify the various approaches below. You can follow the link to learn more details about each treatment/management strategy.

• Self-Care – Combining self-care with professionally led care can create an optimal approach to successful management of RA. There are many changes in your lifestyle that can help you to improve the symptoms of RA. If you are a smoker, it is important to stop smoking. It is also important to stay active. Regular exercise can strengthen muscles and help preserve joint motion and endurance. What you choose to focus on needs to be personalized to your specific situation. (The link above will take you to a description of the many self-management approaches others have found helpful). You may want to talk with your healthcare provider to identify the self-care approaches that would be best for you at the present time.
• Professional Care – The cornerstone of treatment for RA is medication to decrease inflammation in the joints. These medications include nonsteroidal anti-inflammatory drugs (NSAIDs), steroids, and disease-modifying antirheumatic drugs (DMARDs). DMARDs include conventional DMARDs (e.g., methotrexate, hydroxychloroquine, sulfasalazine, leflunomide), biologic DMARDs (e.g., tumor necrosis factor inhibitors, interleukin-6 receptor antagonists, selective T-cell co-stimulation blocker), and newer small-molecule DMARDs (e.g., tofacitinib, baricitinib, upadacitinib). In cases of long-standing disease, treatment may also include surgery, though this is becoming less common as effective medications for RA have been developed. Non-drug therapies include physical therapy and occupational therapy to relieve pain, maintain range of motion, and prevent contractures and deformities. Nutritionists may advise on strategies to lose weight and lower risk for cardiovascular disease, which is elevated among RA patients. Education and counseling may also be helpful in enabling you to control and cope with RA symptoms. Behavioral approaches include biofeedback and psychotherapy. The link above will take you to a description of many professionally led approaches to chronic pain management.

Additional Resources

• American College of Rheumatology
• National Institute of Arthritis and Musculoskeletal and Skin Diseases, (NIH)
• Arthritis Foundation
• Chronic Pain Research Alliance
• Chronic Pain and Fatigue Research Center (CPFRC)

What is Sickle Cell Disease-Related Pain?

Pain is the hallmark complication of sickle cell disease (SCD). Pain in SCD is associated with several negative outcomes including reduced function, poor quality of life, anxiety, and depression. Most SCD pain occurs when the abnormally shaped red blood cells clot within blood vessels throughout the body. When red blood cells clot within blood vessels, a patient can experience an acute pain episode, often called a “pain crisis”. Pain crises are the most common reason patients with SCD go to the Emergency Department and are admitted to the hospital. In addition to pain crises, some patients with SCD experience chronic, daily pain. Chronic pain among patients with SCD can be difficult to treat and often requires a team-based approach to identify the etiology of the pain, associated symptoms, and the best treatment.

Symptoms

• Pain crisis: Acute episode of moderate to severe pain that often occurs in the arms, legs, shoulders, back, or chest. This pain may be described as sharp, stabbing or throbbing.
• Musculoskeletal pain: Patients with sickle cell disease may experience avascular necrosis which can cause mild to severe pain in the hip or shoulder joints.
• Chronic pain: Daily or recurring pain that lasts for three months or longer.
• Associated symptoms: In addition to pain, patients with SCD may experience other associated symptoms such as fatigue, anxiety, and depression.

What Causes Sickle Cell Disease-Related Pain?

Patients with SCD have genetic mutations that cause their red blood cells to be crescent moon shaped, stiff, and sticky. These altered red blood cells can clot, block blood flow, and cause acute pain or a pain crisis. Several factors may trigger a pain crisis or make it worse. Two examples of triggering factors are dehydration and cold weather.

Chronic pain can also occur among patients with SCD due to different causes. First, chronic pain can develop due to long-term damage. For example, avascular necrosis — death of bone tissue due to a temporary or permanent loss of blood supply to bones in large joints. This can occur in patients who experience recurrent pain crises. Chronic pain may also occur without any evidence of damage to the body. Patients with SCD pain should have a discussion with their provider to determine the best management and treatment approaches.

Diagnosis of Sickle Cell Disease-Related Pain?

The diagnosis of SCD pain often begins with a thorough health assessment and examination. Providers will ask patients about the location, intensity, and characteristics of the pain to determine the etiology of pain and the best course of treatment. If a provider suspects that a patient is experiencing chronic pain due to avascular necrosis, they may request MRIs, CT scans, or bone scans to confirm the diagnosis.

Who treats Sickle Cell Disease-Related Pain?

Patients with SCD are generally treated by hematologists (doctors who specialize in blood disorders). Patients may be referred to additional providers to manage the pain they experience:

• Hematologists – physicians who are trained to treat blood disorders
• Nurse practitioners or physician assistants – advanced practice providers who specialize in sickle cell disease
• Psychologists – specialists who help evaluate how pain impacts a patient’s mental health and overall wellbeing. These providers can assist patients in adopting positive behavioral practices that reduce the negative impact pain and associated symptoms have on daily life.
• Palliative care providers – physicians and advanced practice providers who specialize in managing pain and associated symptoms
• Physical and occupational therapists – movement experts who provide therapy to improve functional status and reduce pain.

Treatment of Sickle Cell Disease-Related Pain

The treatment and management of SCD pain is individualized based on the etiology of the pain. Patients who experience acute pain crises are often prescribed NSAIDs and opioids to manage mild to moderate pain at home. Patients are instructed to go to the Emergency Department for intravenous opioids and close monitoring if a pain crisis becomes severe and cannot be managed at home. Patients may be admitted to the hospital if their pain is not relieved. Patients who experience recurring pain crises may be prescribed hydroxyurea or chronic blood transfusions to reduce the amount of sickled red blood cells. Additional pain management (both self-management and professionally administered approaches) may be offered to patients experiencing chronic pain. Depending on the etiology of the pain, providers may prescribe antidepressants, anticonvulsants, physical therapy, or surgery. Patients experiencing chronic pain may also be encouraged to practice nonpharmacologic approaches to managing their pain like deep breathing, relaxation, meditation, and exercise.

ADDITIONAL RESOURCES

National Heart, Lung, and Blood Institute

Centers for Disease Control and Prevention

American Chronic Pain Association

St. Jude Children’s Research Hospital

What is Fibromyalgia?

Fibromyalgia (FM) affects approximately 10–20 million individuals in the U.S. FM is a chronic condition associated with widespread pain and tenderness along with other symptoms such as problems with sleep, memory, mood, and fatigue. Women tend to be more susceptible to fibromyalgia, usually in middle age (20 years–50 years), and there is some evidence to suggest that it may run in families. If you have fibromyalgia, the pain and fatigue can affect many areas of your life including work, daily activities, enjoyment of hobbies, and taking care of your family. Currently there is no known cure for fibromyalgia, but the symptoms of FM can be managed successfully.

Symptoms

• Pain and tenderness: The most common symptoms of FM are widespread pain and tenderness. These symptoms tend to be highly variable with some days being better than others. The location of pain may also change over time - people often describe FM as “whole body pain” since the pain and tenderness of FM is not confined to a single location within the body.
• Fatigue: The fatigue of FM is described as both physical fatigue and mental fatigue. Both types of fatigue are described as being more profound than “general tiredness”. People with FM are more easily fatigable and when fatigued, slower to recover. People with FM fatigue often consider the fatigue to be as problematic as the pain.
• Sleep Problems: Some individuals with FM may have difficulty falling asleep or staying asleep. Others may sleep through the night but upon wakening, feel unrefreshed as though they were unable to sleep at all.
• Cognitive and Memory Problems: Problems with thinking (also referred to as “Fibro-Fog”) can take many forms including: difficulty concentrating, difficulty remembering, difficulty finding the right words for objects or people, mental cloudiness, difficulty navigating, and sensing that thinking is slower than usual.
• Depression and Anxiety: While FM used to be misdiagnosed as a variant of depression, depression and anxiety often co-exist with FM. When present, anxiety and depression can make FM symptoms worse. The depressive symptoms and anxiety do not need to be at the level of a diagnosable disorder to influence pain perception. Simply experiencing the symptoms of FM will likely have a negative impact on mood which in turn can make other FM symptoms worse.
• Sensory Sensitivity: In addition to pain, individuals with FM tend to experience hypersensitivity to light, sound, touch, taste, odors, and medications. This means that for people with FM, sensations will become unpleasant at intensities that do not bother other people. For example, individuals with FM may feel chilled or overly warm at temperatures that seem normal to others, movies or concerts may seem uncomfortably loud, or common perfumes may seem noxious.
• Stiffness: Stiffness upon wakening is common for individuals with FM. Stiffness can also occur after sitting or standing or when there are changes in barometric pressure.
• Dryness of Eyes or Mouth: Some individuals with FM report excessively dry eyes and/or mouth even when tear production or saliva is normal.
• Chronic Overlapping Pain Conditions (COPCs): If you have FM, you may also have one or more of the other COPCs found on this page. It is thought that these conditions may share common underlying causes.

What Causes FM?

About half of people with FM can identify some triggering event that they suspect led to the onset of FM. Others however report that FM started spontaneously - for no apparent reason.

Normally we experience pain when there is some injury (e.g., a broken bone, cut, or fall). This represents the body’s pain processing mechanism working adaptively to protect us from harm.

FM is an example of a disorder where sensory information (both normal and threatening) gets amplified by the brain. Thus in the case of FM, the problem is not necessarily an injury but a problem in how the brain processes nociceptive information and produces pain. The underlying problem in FM is thought to be nociplastic pain or centrally augmented pain, a disorder of pain processing.

It should be noted that pain experienced in response to an injury is indistinguishable from pain associated with central augmentation. Both are “real” forms of pain and both can result in comparable levels of suffering. Many factors can contribute to central pain augmentation including genetics, infections, hormonal abnormalities, physical and/or psychological trauma, repetitive injuries, and sustained physical/psychological stress.

Diagnosis of FM

Currently there are no reliable laboratory tests, x-rays, or other objective tests for diagnosing FM (even though there are some tests that purport to do so). In part this is because the problem is not the result of an injury or disease, but how the brain produces the experience of pain. Often individuals with FM will have seen many doctors before receiving a diagnosis of FM because FM can mimic many other illnesses. It is important to note however that you can have FM in addition to having other illnesses.

In the U.S., a doctor familiar with FM will typically take a careful medical history, and then utilize the diagnostic criteria from the American College of Rheumatology (ACR) to make the diagnosis of FM. These criteria take into account the following elements:

• The areas of your body in which you feel pain and its duration (e.g., pain wide-spreadedness)
• The presence of additional symptoms (e.g., fatigue, sleep problems, cognitive problems)

Who treats FM?

FM is often treated by family doctors, rheumatologists, or internists. While these doctors often coordinate the care, optimal care often requires a team approach. This team might include the following specialists:

• Rheumatologist – physicians specializing in arthritis and other diseases of the bones, joints, and muscles
• Nurse educators – specialists who can educate about the condition and help develop or refine a personalized treatment plan
• Physical therapists – specialists trained in mobilizing muscles, bones, and joints through exercise, hands-on care, and patient education
• Occupational therapists – specialists trained in teaching ways to protect joints, conserve energy, engage more fully in activities of daily living, and patient education.
• Psychologists or social workers – specialists who can help initiate and maintain self-care approaches to pain management and who can help address social challenges associated with dealing with chronic pain
• Dietitians - specialists who teach about optimal diets and maintaining a healthy weight
• Acupuncturists - specialists who may influence pain perception, promote healing, and improve functional status by stimulating specific points on the body often by inserting needles into the skin

Most importantly however YOU need to be a member of the team. Much of FM management can be done at home, by you, and does not require seeing a doctor. The parts that you can do may require some changes in how you live your life. You will need to stick to this plan for better pain control.

It is likely that you and your doctor will need to team up to identify the best combination of professional and self-care approaches that work for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of FM

The treatment/management of FM can take many forms. We identify the various approaches below. You can follow the links to learn more about each treatment/management strategy.

• Self-Care – There are many changes in your lifestyle that can help you to improve the symptoms of FM. What you choose to focus on needs to be personalized to your specific situation. The link above will take you to a description of the many self-management approaches others have found helpful. You may want to talk with your doctor to identify the self-care approaches that would be best for you at the present time.
• Professional Care – Combining self-care with professionally lead care can create an optimal approach to successful management of FM. The link above will take you to a description of the many professionally lead approaches to chronic pain management. For FM, the most common approaches include medications (e.g., anti-depressant, and anti-seizure), cognitive-behavioral therapy, and aerobic exercise.

Additional Resources

• American College of Rheumatology
• National Institute of Arthritis and Musculoskeletal and Skin Diseases, (NIH)
• National Fibromyalgia Association (NFA)
• National Fibromyalgia Partnership, Inc.
• Chronic Pain Research Alliance
• Chronic Pain and Fatigue Research Center (CPFRC)

Some Additional Reading

• Dr. Daniel Clauw provides a mechanistic review of FM and its treatment.
• Overview of non-pharmacological interventions for FM
• Using the Internet to deliver pain interventions.

What is Low Back Pain?

If you have low back pain, you are not alone. Close to 80% of all adults experience low back pain at some point in their lifetime. It is the most common cause of job-related disability and a leading contributor to missed work. Studies have reported that more than a quarter of adults reported experiencing low back pain during the past 3 months. Men and women are equally affected by low back pain, which can range in intensity from a dull, constant ache to a sudden, sharp sensation that leaves the person debilitated. Pain can begin quickly as a result of an injury or it can develop over time from a variety of age-related changes to the spine. Sedentary lifestyles can also set the stage for low back pain. Most low back pain is acute, or short term, and lasts a few days to a few weeks. It usually resolves on its own with self-care and there is no continued loss of function. The majority of acute low back pain is mechanical in nature, meaning that there is a disturbance in the way the components of the back (the spine, muscles, intervertebral discs, and nerves) fit together and move.

Subacute low back pain is defined as pain that lasts between 4 and 12 weeks.

Chronic low back pain (CLBP) is defined as pain that persists for 12 weeks or longer, even after an initial injury or underlying cause of acute low back pain has been treated. About 20% of people with acute low back pain develop chronic low back pain with persistent symptoms at one year. In some cases, treatments can successfully relieve chronic low back pain, but in other cases pain persists despite medical and surgical treatment. The scale of the burden from low back pain has grown worse in recent years.

Symptoms

• Pain in the lower back or buttocks area that can be described as aching, shooting, or stabbing
• Limited flexibility and range of motion
• Inability to stand up straight
• Possible pain in the lower extremities
• Possible neurologic problems in the lower extremities including: painful tingling, numbness, or weakness

• Chronic Overlapping Pain Conditions (COPCs): If you have CLBP, you may also have one or more of the other COPCs. It is thought that these conditions may share common underlying causes. The COPCs are listed below and detailed descriptions of each one can be found by following the link.

  • Fibromyalgia (FM)
  • Irritable Bowel Syndrome (IBS)
  • Temporomandibular Joint Disorder (TMD)
  • Migraine Headache (MI)
  • Tension Type Headache (TTH)
  • Urologic Chronic Pelvic Pain Syndrome (e.g., Interstitial Cystitis) (UCPPS)
  • Endometriosis (ENDO)
  • Vulvodynia (VVD)
  • Chronic Fatigue Syndrome (CFS) (also sometimes called Myalgic Encephalomyelitis)

What Causes CLBP?

The vast majority of low back pain is mechanical in nature. In many cases, low back pain is associated with spondylosis, a term that refers to the general degeneration of the spine associated with normal wear and tear that occurs in the joints, discs, and bones of the spine as people get older. Some examples of mechanical causes of low back pain include:

• Sprains and strains account for most acute back pain. Sprains are caused by overstretching or tearing ligaments, and strains are tears in tendon or muscle. Both can occur from twisting or lifting something improperly, lifting something that is too heavy, or overstretching. Such movements may also trigger spasms in back muscles, which can also be painful.
• Intervertebral disc degeneration is one of the most common mechanical causes of low back pain, and it occurs when the usually rubbery discs lose integrity as a normal process of aging. In a healthy back, intervertebral discs provide height and allow bending, flexion, and torsion of the lower back. As the discs deteriorate, they lose their cushioning ability.
• Herniated or ruptured discs can occur when the intervertebral discs become compressed and bulge outward (herniation) or rupture, causing low back pain and possibly lower extremity pain.
• Radiculopathy is a condition caused by compression, inflammation and/or injury to a spinal nerve root. Pressure on the nerve root results in pain, numbness, or a tingling sensation that travels or radiates to other areas of the body that are served by that nerve. Radiculopathy may occur when spinal stenosis or a herniated or ruptured disc compresses the nerve root.
• Spondylolisthesis is a condition in which a vertebra of the lower spine slips out of place causing misalignment and can pinch the nerves exiting the spinal column.
• A traumatic injury, such as from motor vehicle accidents or playing sports, can injure tendons, ligaments or muscle resulting in low back pain.
• Spinal stenosis is a narrowing of the central spinal column that can put pressure on the spinal cord and nerves and result in pain or numbness with walking and over time leads to leg weakness and sensory loss.
• Skeletal irregularities include scoliosis, a curvature of the spine that does not usually cause pain until middle age; lordosis, an abnormally accentuated arch in the lower back; and other congenital anomalies of the spine.

Low back pain is rarely related to serious underlying conditions, but when these conditions do occur, they require immediate medical attention. Serious underlying conditions include:

• Infections are not a common cause of back pain. However, infections can cause pain when they involve the vertebrae (osteomyelitis) or the intervertebral discs (discitis).
• Tumors are a relatively rare cause of back pain. Occasionally, tumors originate from low back, but more often they appear a result of cancer that has spread from elsewhere in the body.
• Cauda equina syndrome is a serious but rare complication of a ruptured disc. It occurs when disc material is pushed into the spinal canal and compresses the bundle of lumbar and sacral nerve roots, causing loss of bladder and bowel control. Permanent neurological damage may result if this syndrome is untreated.
• Abdominal aortic aneurysms occur when the large blood vessel that supplies blood to the abdomen, pelvis, and legs becomes abnormally enlarged. Back pain can be a sign that the aneurysm is becoming larger and that the risk of rupture should be assessed.
• Kidney stones can cause sharp pain in the lower back, usually on one side.

Other underlying conditions that predispose people to low back pain include:

• Inflammatory diseases of the joints such as arthritis, including osteoarthritis and rheumatoid arthritis.
• Osteoporosis is a bone disease marked by a progressive decrease in bone density and strength, which can lead to painful fractures of the vertebrae.
• Fibromyalgia, a chronic pain syndrome involving widespread muscle pain and fatigue.

Risk Factors for CLBP

Beyond underlying diseases listed above, other risk factors may increase the risk for chronic low back pain, including:

• Age
• Fitness level
• Pregnancy
• Weight gain
• Genetics
• Occupational risk factors
• Mental health factors

Diagnosis of CLBP

A complete medical history and physical exam can usually identify any serious conditions that may be causing the pain. During the exam, a healthcare provider will ask about the onset, site, and severity of the pain; duration of symptoms and any limitations in movement; and history of previous episodes or any health conditions that might be related to the pain. Along with a thorough back examination, neurologic tests are conducted to determine the cause of pain and appropriate treatment. The cause of chronic lower back pain is often difficult to determine even after a thorough examination. Imaging and blood tests are not warranted in most cases. Under certain circumstances, however, imaging may be ordered to rule out specific causes of pain, including tumors and spinal stenosis.

Who treats CLBP?

CLBP is often treated by family doctors, internal medicine doctors, physical medicine & rehabilitation (PM&R) doctors, pain management doctors, neurologists, and orthopedic or neurosurgical surgeons. While these doctors often coordinate the care, optimal care often requires a team approach when low back pain becomes chronic. This team might include the following specialists:

• Pain Medicine specialists – Fellowship-trained practitioners (often with original training in anesthesiology, PM&R, or neurology) who are familiar with the anatomy of the spine and mechanisms of pain processing who can provide non-pharmacologic, pharmacologic, and interventional options for treatment of CLBP
• Spine surgeons – physicians specializing in the surgical treatment of spine conditions
• Nurse educators – specialists who can educate about the condition and help develop or refine a personalized treatment plan
• Physical therapists – specialists trained in mobilizing muscles, bones, and joints through exercise, hands-on care, and patient education
• Psychologists or social workers – specialists who can help initiate and maintain self-care approaches to pain management and who can help address social challenges associated with dealing with chronic pain
• Dietitians - specialists who teach about optimal diets and maintaining a healthy weight
• Acupuncturists - specialists who influence pain perception, promote healing, and improve functional status by stimulating specific points on the body often by inserting needles into the skin

Most importantly however YOU need to be a member of the team. Much of CLBP management can be done at home, by you, and does not require seeing a doctor. The parts that you can do may require some changes in how you live your life. You will need to stick to this plan for better pain control.

It is likely that you and your doctor will need to team up to identify the best combination of professional and self-care approaches that works for you. This plan will need to be reviewed and potentially revised over time as your needs shift. 


Treatment of CLBP

Treatment for low back pain generally depends on whether the pain is acute or chronic. In general, surgery is recommended only if there is evidence of worsening nerve damage and when diagnostic tests indicate structural changes for which corrective surgical procedures have been developed.

Conventionally used treatments:

• Hot or cold packs 
• Activity: Bed rest should be limited. Individuals should begin stretching exercises and resume normal daily activities as soon as possible, while avoiding movements that aggravate pain.
• Strengthening exercises: may be an effective way to speed recovery from chronic or subacute low back pain. Healthcare providers can provide a list of beneficial exercises that will help improve coordination and develop proper posture and muscle balance. Evidence supports short- and long-term benefits of yoga to ease chronic low back pain.
• Physical therapy programs to strengthen core muscle groups that support the low back, improve mobility and flexibility, and promote proper positioning and posture are often used in combinations with other interventions.
• Acupuncture is moderately effective for chronic low back pain. It involves the insertion of thin needles into precise points throughout the body. Some practitioners believe this process helps clear away blockages in the body’s life force known as Qi.
• Biofeedback involves the attachment of electrodes to the skin and the use of an electromyography machine that allows people to become aware of and self-regulate their breathing, muscle tension, heart rate, and skin temperature.
• Nerve block therapies aim to relieve chronic pain by blocking nerve conduction from specific areas of the body. Nerve block approaches range from injections of local anesthetics, botulinum toxin, or steroids into affected soft tissues or joints to more complex nerve root blocks and spinal cord stimulation. The success of a nerve block approach depends on the ability of a practitioner to locate and inject precisely the correct nerve. Chronic use of steroid injections may lead to increased functional impairment.
• Transcutaneous electrical nerve stimulation (TENS) involves wearing a battery-powered device with special electrode pads placed on the skin over the painful area that generate electrical impulses designed to block incoming pain signals from the peripheral nerves.

A wide range of medications are used to treat chronic low back pain. Some are available over the counter (OTC); others require a physician’s prescription. Certain drugs, even those available OTC, may be unsafe during pregnancy, may interact with other medications, cause side effects, or lead to serious adverse effects such as liver damage or gastrointestinal ulcers and bleeding. Consultation with a healthcare provider is advised before use. The following are the main types of medications used for chronic low back pain:

• Analgesic medications are those specifically designed to relieve pain. They include acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs), as well as prescription opioids. Opioids should only be used for a short period of time and under a physician’s supervision as they have significant side effects including constipation, cognitive dysfunction, tolerance, dependence, addiction and the possibility for overdose and death due to significant respiratory depression.
• Anticonvulsants such as gabapentin and pregabalin are drugs primarily used to treat seizures. They may be useful in treating people with radiculopathy and radicular pain.
• Antidepressants such as tricyclics and serotonin and norepinephrine reuptake inhibitors have been commonly prescribed for chronic low back pain.
• Topical therapies such as creams or sprays applied topically stimulate the nerves in the skin to provide feelings of warmth or cold in order to dull the sensation of pain.

Surgery

When other therapies fail, surgery may be considered an option to relieve pain caused by serious musculoskeletal injuries or nerve compression. It may be months following surgery before the patient is fully healed and recovered, and he or she may suffer permanent loss of flexibility. Surgical procedures are not always successful, and there is little evidence to show which surgical procedures work best for their particular indications. Patients considering surgical approaches should be fully informed of all related risks.

Self-Care

There are many changes one can make to improve the symptoms of CLBP.

• Stretch before exercise or other strenuous physical activity.
• Have good posture when standing or sitting.
• Sit in a chair with good lumbar support and proper position and height for the tasks (such as work).
• Wear comfortable, low-heeled, and supportive shoes.
• Don’t try to lift objects that are too heavy. Lift from the knees, pull the stomach muscles in, and keep the head down and in line with a straight back. When lifting, keep objects close to the body. Do not twist when lifting.
• Have proper nutrition and a healthy diet to reduce and prevent excessive weight gain.
• Quit smoking. Smoking decreases blood flow to the spine, which can facilitate spinal disc degeneration.
• Pacing activities, improving sleep, changing how you think about pain, acupressure, and meditation can all help with pain management. Consult the self-management section of PainGuide to identify lifestyle changes that you and your doctor think would be beneficial.

ADDITIONAL RESOURCES

American Society of Anesthesiology (ASA)

American Society of Regional Anesthesia and Pain Medicine (ASRA)

National Institute of Arthritis, Musculoskeletal, and Skin Diseases (NIAMS – NIH)

National Institute of Neurologic Disorders and Stroke (NINDS – NIH)

National Institute of Complimentary and Integrative Health (NCCIH – NIH)

Chronic Pain Research Alliance

Chronic Pain and Fatigue Research Center (CPFRC)

What is Temporomandibular Joint Disorder?

Temporomandibular Joint Disorder (TMD) also referred to as Temporomandibular Joint Syndrome (TMJ) affects approximately 35 million individuals in the U.S. It tends to occur in individuals between the ages of 20–40 and is more common in women than in men. There are two temporomandibular joints (one on either side of the head) that connect the jaw bone and the skull. This joint is quite complex as it allows for movement up/down, backward and forward, and side to side. Sometimes this joint can become injured or inflamed leading to pain. Sometimes the pain associated with TMD can be directly attributed a site of injury or inflammation (e.g., nociceptive pain) but in other cases the cause of pain is less obvious and may be driven by the central nervous system (e.g., nociplastic pain).

Symptoms

• Pain experienced in one or both temporomandibular joints
• Jaw clicking and popping
• Jaw locking
• Pain with chewing
• Ear pain/earaches
• Popping sounds in your ears
• Headaches
• Stiff or sore jaw muscles
• Pain in your temples
• Pain in your face or neck
• A change in how your teeth fit together

• Chronic Overlapping Pain Conditions (COPCs): If you have TMD, you may also have one or more of the other COPCs. It is thought that these conditions may share common underlying causes. The COPCs are listed below and detailed descriptions of each can be found by following the link.

  • Fibromyalgia (FM)
  • Low back pain
  • Urinary chronic pelvic pain syndrome
  • Irritable Bowel Syndrome (IBS)
  • Migraine and tension headache
  • Endometriosis (ENDO)
  • Vulvodynia (VVD)
  • Chronic Fatigue Syndrome (CFS) (also sometimes called Myalgic Encephalopathy)

What Causes TMD?

TMD is not fully understood but there appear to be multiple factors that contribute to TMD or that may be downstream results of having TMD. Potential contributors include the following:

• Misalignment or trauma to the jaw
• Teeth grinding
• Stress/anxiety
• Arthritis or other sources of inflammation
• Excessive gum chewing
• Sometimes a specific cause is not clear

Diagnosis of TMD

Currently there is no specific test to diagnose TMD. In the U.S., a doctor familiar with TMD will typically take a careful medical history, and then look for signs of inflammation or irritation in your jaw and muscles, listen for clicking and grinding noises, and test the ability of your jaw to move in all directions. Your doctor may also request an imaging study (e.g., x-ray, MRI) to help rule out other conditions that might be causing the problem (e.g., tooth pain).

Who treats TMD?

TMD is often treated by family doctors, dentists, oral and maxillofacial specialists, and otolaryngologists. While these doctors often coordinate the care, optimal care often requires a team approach when jaw pain becomes chronic. This team might include the following specialists:

• Dentists and oral and maxillofacial facial specialists – Dentally trained practitioners familiar with teeth and the jaw
• Otolaryngologists – physicians specializing in ear, nose, and throat
• Nurse educators – specialists who can educate about the condition and help develop or refine a personalized treatment plan
• Physical therapists – specialists trained in mobilizing muscles, bones, and joints through exercise, hands-on care, and patient education
• Occupational therapists – specialists trained in teaching ways to protect joints, conserve energy, engage more fully in activities of daily living, and patient education.
• Psychologists or social workers – specialists who can help initiate and maintain self-care approaches to pain management and who can help address social challenges associated with dealing with chronic pain
• Dietitians - specialists who teach about optimal diets and maintaining a healthy weight
• Acupuncturists - specialists who may influence pain perception, promote healing, and improve functional status by stimulating specific points on the body often by inserting needles into the skin

Most importantly however YOU need to be a member of the team. Much of TMD management can be done at home, by you, and does not require seeing a doctor. The parts that you can do may require some changes in how you live your life. You will need to stick to this plan for better pain control.

It is likely that you and your doctor will need to team up to identify the best combination of professional and self-care approaches that works for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of TMD

The treatment/management of TMD can take many forms. We identify the various approaches below. You can follow the link to learn more details about each treatment/management strategy.

Self-Care – There are many changes in your lifestyle that can help you to improve the symptoms of TMD. What you choose to focus on needs to be personalized to your specific situation. The link above will take you to a description of the many self-management approaches others have found helpful. You may want to talk with your doctor so as to identify the self-care approaches that would be best for you at the present time. Commonly, hot or cold packs on the joint, eating softer foods, avoiding gum chewing or nail biting, stress reduction/relaxation methods, and massage or stretching can be helpful. Professional-Care – Combining self-care with professionally lead care can create an optimal approach to successful management of TMD. The link above will take you to a description of the many professionally lead approaches to chronic pain management. For TMD, the most common approaches include medications (e.g., anti-depressant, anti-seizure, non-narcotic analgesics), cognitive-behavioral therapy/biofeedback, physical therapy including stretching and massage, acupuncture, injections, dental splints or mouth guards, and occasionally surgery. Talk with your healthcare provider so see which options might be best for you.

ADDITIONAL RESOURCES

The TMJ Association

Canadian Dental Association

American Dental Association

National Institute of Dental and Craniofacial Research (NIDCR – NIH)

Chronic Pain Research Alliance

Chronic Pain and Fatigue Research Center (CPFRC)

What is Interstitial Cystitis / Bladder Pain Syndrome?

Interstitial cystitis / bladder pain syndrome (IC/BPS) affects approximately 10 million individuals in the US. IC/BPS is characterized by chronic bladder pain or pressure, without a bladder infection or other clear cause for the symptoms. It is more common in women than in men, and most typically is diagnosed in the age range of 30–60. Many IC/BPS patients have symptoms for years prior to receiving a diagnosis because the symptoms are initially thought to be caused by bladder infections. A subset (about 10%) of patients with IC/BPS will have bladder lesions (Hunner’s lesions) which can be targeted for treatment. However, the majority of IC/BPS patients have no clear bladder abnormalities that can be identified with medical tests. The symptoms of IC/BPS are very similar to those of chronic prostatitis / chronic pelvic pain syndrome (CP/CPPS) in men. These two conditions (IC/BPS and CP/CPPS) are sometimes combined together and referred to as ‘Urologic Chronic Pelvic Pain Syndrome’ (UCPPS).

Symptoms

• Bladder pain: The hallmark symptom of IC/BPS is chronic pain that is caused by the bladder. This can be experienced as sharp pain or as more mild pressure/ discomfort. These symptoms are typically worsened as the bladder fills, and improved after urination.
• Urinary frequency: IC/BPS patients often have severe urinary frequency during the day and night, as urination helps to temporarily relieve the bladder pain. It is not uncommon for IC patients to have to urinate more than 20 times per day. This can be extremely disruptive to many areas of a person’s life, including work, family responsibilities, social activities and travel. If the urinary frequency occurs at night, this can cause severe fatigue due to lack of sleep.
• Symptom flares: Most IC/BPS patients have periods of time when their symptoms are mild, alternating with periods of time when the symptoms are more severe (‘flares’). It is not always clear why flares develop, but some patients find that certain foods (such as caffeinated beverages or spicy foods) or activities (such as sexual activity or bicycle riding) can cause flares.
• Pelvic floor dysfunction: Many IC/BPS patients develop muscle pain in the pelvic or vaginal region. This is thought to be caused by pelvic muscle tension/contractions which occur as a response to the chronic bladder pain.
• Depression and Anxiety: IC/BPS is not a psychological disorder, but depression and anxiety are common in people with chronic pain, and can interfere with the success of IC/BPS treatments.

• Chronic Overlapping Pain Conditions (COPCs): If you have IC/BPS, you may also have one or more of the other COPCs. It is thought that these conditions may share common underlying causes. The COPCs are listed below and detailed descriptions of each Pain Condition can be found above or below, on this page.

  • Fibromyalgia (FM)
  • Chronic low back pain (cLBP)
  • Temporomandibular Joint Disorder ((TMD)
  • Irritable Bowel Syndrome (IBS)
  • Migraine Headache (MI)
  • Tension Type Headache (TTH)
  • Endometriosis (ENDO)
  • Vulvodynia (VVD)
  • Chronic Fatigue Syndrome (CFS) (also sometimes called Myalgic Encephalomyelitis)

What Causes IC/BPS?

The cause of IC/BPS is not known. It is likely that IC/BPS symptoms are caused by different problems in different patients. There is some evidence that the protective layer of the bladder wall may be weakened in certain IC/BPS patients, resulting in the irritation of bladder nerves by toxins in the urine. Studies have also shown that many IC/BPS patients have abnormalities of pain processing, so that normal and abnormal sensations are abnormally amplified by the nerves and brain. Many factors can contribute to this, including genetics, infections, hormonal abnormalities, trauma (physical or psychological), repetitive injuries and sustained stress.

Diagnosis of IC/BPS

The first step in the diagnosis of IC/BPS is to check for a specific problem that could cause the symptoms, such as a bladder infection (urinary tract infection, UTI) or a bladder tumor. The initial test is a urinalysis to look for white blood cells and bacteria (possible infection) or red blood cells (possible tumor). If an infection is suspected, a urine culture can be performed in the lab to check for bacteria and to determine which antibiotic should be used. If blood is seen on the urinalysis, then a bladder scope (cystoscopy) should be done to look for a tumor or other cause.

Currently there are no specific laboratory tests, x-rays or other tests that can provide a diagnosis of IC/BPS. As a result, most patients with IC/BPS see many physicians prior to receiving a diagnosis. In patients with normal urine tests who have bladder pain that persists for weeks, the diagnosis of IC/BPS should be considered. Cystoscopy can be useful to evaluate for a specific cause for the symptoms, and to identify Hunner’s lesions (a subtype of IC/BPS). A pelvic examination can also be useful to identify the presence of bladder tenderness (which would support the diagnosis of IC/BPS).

Who Treats IC/BPS?

IC/BPS is often treated by primary care doctors (family practice, internists), gynecologists and urologists. While these doctors often coordinate the care, optimal care often requires a team approach. This team could include the following specialists:

• Urologists - physicians specializing in conditions affecting the genitourinary tract (bladder, kidneys, prostate, penis, testicles)
• Gynecologists – physicians specializing in conditions affecting the female reproductive organs (vagina, uterus, ovaries)
• Advanced practice providers (nurse practitioners, physician assistants) who specialize in urologic/gynecologic conditions and often work with urologists and gynecologists
• Anesthesiologists – physicians specializing in the treatment of pain by treating specific nerves
• Physical therapists – specialists trained in teaching ways to improve pain caused by pelvic muscle/joint abnormalities
• Nurse educators – specialists who can educate about IC/BPS and help to develop or refine a personalized treatment plan
• Psychologists – specialists who can help initiate and maintain self-care approaches to pain management

Each of these healthcare providers work with patients with IC/BPS to improve symptoms, overall well-being and quality of life. It is likely that you and your doctor will need to work together to identify the best combination of professional and self-care approaches that work for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of IC/BPS

The treatment/management of IC/BPS can take many forms. We identify the various approaches below. You can follow the link to learn more details about each treatment/management strategy.

• Self-Care – There are many changes in your lifestyle that can help you to improve the symptoms of IC/BPS. What you choose to focus on needs to be personalized to your specific situation. (The link above will take you to a description of the many self-management approaches others have found helpful. You may want to talk with your doctor so as to identify the self-care approaches that would be best for you at the present time).

• Professional Care – Combining self-care with professionally lead care can create an optimal approach to successful management of IC/BPS. The link above will take you to a description of the many professionally lead approaches to chronic pain management. For IC/BPS, the most common approaches include avoidance of factors that can aggravate the symptoms (such as certain foods/ beverages), behavioral therapies, pelvic muscle physical therapy, oral medications (bladder-specific medications as well as generalized pain treatments), and bladder instillations (placement of medication directly into the bladder through a catheter). In patients who have Hunner’s lesions, these can be treated directly by a urologist using a cystoscope. These approaches specific to IC are described next.

  • Bladder-specific Medications Pentosan polysulfate (Elmiron) is the only oral medication that is FDA-approved for the treatment of IC/BPS. The recommended usage is to help strengthen the protective lining of the bladder wall in order to prevent urine toxins from irritating the bladder and causing bladder pain. Some patients need to take this medication for 3–6 months before they notice any benefit. Pentosan polysulfate can rarely cause liver blood test abnormalities, but has not ever caused severe liver damage. It is common to check liver function (using blood tests) after taking this medication for 6 months. There have been a few reports of eye changes in patients who have taken pentosane polysulfate for many years, so some clinicians who prescribe this medication will have you see an eye doctor (ophthalmologist) either before or after the medication is prescribed.

  • Treatment of Hunner’s Lesions Approximately 10% of patients with IC/BPS will be found to have inflamed lesions in the bladder called Hunner’s lesions. These can be treated by either cauterizing (burning) the lesions or by injecting the lesions with a steroid solution. This is done in the operating room using a cystoscope (telescope that is passed into the bladder through the urethra). Treatment of Hunner’s lesions typically causes the bladder symptoms to greatly improve. However, it is common for the lesions to recur, so numerous treatments are typically required over time.
  • Bladder Instillations for IC/BPS Liquid medications can be placed directly into the bladder to help reduce symptoms of IC/BPS. This is most commonly done to help treat symptom flares. The typical treatment regimen is one instillation per week for 6 weeks. However, the treatments can be done more frequently. Some patients choose to do the instillations at home as maintenance therapy.

  Steps of Bladder Instillations:

  Step 1 Medication is drawn up into a syringe.

  Step 2 A lubricated catheter is inserted into the urethra until urine starts to drain. The bladder is emptied completely.

  Step 3 The syringe is attached to the end of the catheter and the medication is then pushed into the bladder via the catheter.

  Step 4 The catheter is removed. The medication should be kept in the bladder for at least 20 minutes prior to voiding. A variety of medications can be used. Often these are combined together. These medications include: Local Anesthetic medication (such as lidocaine or bupivacaine); Herparin; Bicarbonate; Steriod solution (such as solumedrol); Dimethylsulfoxide (DMSO); Antibiotics (such as gentamicin); Hyaluronic acid.

ADDITIONAL RESOURCES

American Urological Association

Urology Care Foundation

National Institute of Diabetes and Digestive and Kidney Diseases

Interstitial Cystitis Association

Interstitial Cystitis Network

American Urogynecologic Society

What is Irritable Bowel Syndrome?

Irritable bowel syndrome (IBS) has a worldwide prevalence of 11%. It is characterized by chronic and recurrent abdominal pain associated with alterations in stool form and/or frequency. It is one of the most common gastrointestinal (GI) conditions diagnosed in both primary care and specialty practice. IBS occurs in the context of a grossly and histologically normal GI tract, and thus, it has been referred to as a “functional” GI disorder. However, growing scientific evidence supports that IBS is a disorder of brain-gut interactions resulting in physiologic disturbances at the peripheral (gut-based) and central (brain, spinal cord) levels. It occurs in children and adults and is generally more common in women than men. Symptoms can fluctuate over time; there can be periods when symptoms flare up as well as periods of remission when they diminish or disappear. In some women, symptoms increase just prior to menses. IBS can affect many areas of a person’s life including work, school, daily activities and relationships. Although there is currently no known cure for IBS, the symptoms of IBS can be managed effectively.

Symptoms

• Abdominal Pain and Discomfort: The hallmark symptom of IBS is chronic or recurrent abdominal pain. This tends to be highly variable, with some days being better than others. The location of pain is typically in the lower abdomen but can occur in any part of the abdomen. It is associated with a change in bowel habits, such as diarrhea and/or constipation. The pain is usually relieved, but also can worsen, after having a bowel movement.
• Diarrhea and/or constipation: A change in bowel habits occurs and presents as diarrhea and/or constipation. Individuals with IBS may either have mostly diarrhea, mostly constipation, or both diarrhea and constipation (mixed pattern). The main bowel habit can change over time. For example, some individuals who suffer mainly from constipation (or diarrhea) may later experience a change to constipation alternating with diarrhea.
• Bloating (a sensation of fullness in the belly) is a common symptom in IBS. It is more commonly experienced in individuals with constipation or constipation alternating with diarrhea.
• Urgency (the need to use a restroom in a hurry) is a bothersome symptom generally associated with diarrhea or loose stools.
• Fatigue: Fatigue or tiredness can occur in some people with IBS. This may be associated with sleep difficulties or experienced during times of more severe abdominal pain or diarrhea.
• Sleep Problems: Some individuals with IBS may have difficulty falling asleep or staying asleep. Poor sleep has been associated with more bothersome GI symptoms.
• Anxiety and Depression: IBS can co-exist with anxiety and/or depression but more often in individuals with more severe symptoms. The depressive symptoms and anxiety do not need to be at the level of a diagnosable disorder to influence pain perception. Simply experiencing the symptoms of IBS will likely have a negative impact on mood which in turn can make other IBS symptoms worse.

• Chronic Overlapping Pain Conditions (COPCs): If you have IBS, you may also have one or more of the other COPCs. It is thought that these conditions may share common underlying causes. The COPCs are listed below and detailed descriptions of each can be found by following the link.

  • Fibromyalgia
  • Low back pain
  • Temporomandibular disorder
  • Urinary chronic pelvic pain syndrome
  • Migraine and tension headache
  • Endometriosis
  • Vulvodynia
  • Myalgic Encephalopathy / Chronic Fatigue Syndrome

What Causes IBS?

IBS is thought to be due to a disturbance in the communication between the brain and gut, which is known as the “brain-gut axis.” There is not a consensus on the underlying cause of this altered brain-gut axis, but IBS likely represents a combination of factors involving different mechanisms. These mechanisms include increased gut sensitivity and altered GI motility (contractions of the bowel), immune function, gut microbiome (bacteria in the gut), and central nervous system (brain and spinal cord) processing of gut sensations. These disturbances are thought to result in the symptoms of IBS.

Risk factors include a family history of IBS, prior GI infection, and stressful life events. Individuals who develop IBS symptoms following a prior gastroenteritis are considered to have post-infection IBS. Younger age, female gender, a more severe diarrhea illness, and having anxiety, depression or stressful life events at the time of the infection increases the risk of getting post-infection IBS.

A history of adverse life events experienced in childhood and adulthood (e.g., abuse, mental illness in the family) is associated with an increased risk of having IBS and more severe symptoms. Confiding in others at the time of the traumatic event can lower the risk of IBS. IBS symptoms can fluctuate over time. Symptom flares can be triggered by certain foods and stressors.

Diagnosis of IBS

Currently there are no reliable laboratory tests, x-rays, or other objective tests for diagnosing IBS (even though there are some tests that make such claims). Often individuals with IBS will have seen many doctors before receiving a diagnosis of IBS because IBS can mimic other conditions, such as celiac disease and inflammatory bowel disease (IBD). It is important to note however that you can have IBS in addition to having other medical conditions.

The diagnosis of IBS is based on symptoms. The key symptom of IBS is chronic or recurrent abdominal pain associated with altered bowel habits. The current criteria for diagnosis of IBS are the Rome IV criteria, which is a collection of the most common symptoms that typify this condition. This includes abdominal pain at least 1 day per week for three months that is associated with two of the following: 1) the pain is related to defecation, 2) the pain is associated with an increase or decrease in stool frequency, and/or 3) the pain is associated with the stools becoming harder or softer in form. The symptoms should have started at least 6 months ago. The next important step is to look for signs and symptoms that are suggestive of a condition other than IBS, such as IBD (i.e., Crohn’s disease or ulcerative colitis) or celiac disease. These signs and symptoms have been referred to as “alarm signs” or “red flags.” They include anemia and other abnormal blood tests, bloody stools, unexplained weight loss, fever, new onset of symptoms at the age of 50 or older, and family history of IBD, colon cancer or celiac disease. While the presence of these red flags may warrant a more comprehensive diagnostic evaluation, it often does not identify another condition that explains the symptoms of IBS.

Supportive symptoms that are not used for diagnosis include: abnormal stool frequency (> 3 bowel movements/day or < 3 bowel movements/week), abnormal stool form, excessive straining or urgency during defecation, feelings of incomplete evacuation, and mucus with bowel movements. IBS is sub-grouped by predominant bowel habit. Because stool form is the best predictor of predominant bowel habit in IBS, stool form determines whether a person has IBS with predominantly diarrhea (IBS-D; >25% of bowel movements are loose or watery and < 25% are hard and lumpy), IBS with predominantly constipation (IBS-C; >25% are hard and lumpy and <25% are loose or watery), IBS with mixed bowel habit pattern (IBS-M; >25% loose or watery stools and >25% hard and lumpy), or IBS unclassified (IBS-U; <25% loose or watery stools and <25% hard and lumpy stools).

Who treats IBS?

IBS is often treated by primary care doctors (family practice, internists) and gastroenterologists. While these doctors often coordinate the care, optimal care often requires a team approach. This team might include the following specialists:

• Gastroenterologists – physicians specializing in GI conditions
• Advanced practice providers (nurse practitioners, physician assistants) who specialize in GI conditions and often work with gastroenterologists
• Nurse educators – specialists who can educate about the condition and help develop or refine a personalized treatment plan
• GI health psychologists– specialists who can help initiate and maintain behavioral and self-care approaches to manage symptoms and who can help address psychosocial challenges associated with dealing with chronic abdominal pain, diarrhea and/or constipation and other symptoms
• GI dietitians - specialists who educate and provide guidance on diets that are effective in managing IBS symptoms and optimizing nutritional status
• Integrative health practitioners - specialists who use mindfulness and other positive behavioral approaches to improve IBS symptoms, promote healing, and improve functional status and overall well-being

These healthcare providers work with patients with IBS to improve symptoms, overall well-being and quality of life. It is likely that you and your doctor will need to work together to identify the best combination of professional and self-care approaches that works for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of IBS

The treatment/management of IBS can take many forms. We identify the various approaches below. You can follow the link to learn more details about each treatment/management strategy.

• Self-Care – There are many changes in your lifestyle that can help you to improve the symptoms of IBS. What you choose to focus on needs to be personalized to your specific situation. The link above will take you to a description of the many self-management approaches others have found helpful. You may want to talk with your healthcare provider so as to identify the self-care approaches that would be best for you at the present time.
• Professional Care – Combining self-care with professionally led care can create an optimal approach to successful management of IBS. The link above will take you to a description of the many professionally lead approaches to chronic pain management. For IBS, the cornerstone of treatment is education, reassurance, and a therapeutic provider-patient relationship. Dietary management, e.g. low FODMAP (fermentable oligo-, di-, mono-saccharides and polyols) diet, exercise and lifestyle changes can help reduce symptoms of IBS. Treatment is generally focused on the most bothersome or predominant symptoms. Medications approved to treat IBS-D include rifaximin (antibiotic), eluxadoline, and alosetron. Medications to treat IBS-C include lubiprostone, linaclotide, plecanatide, and tegaserod. However, over-the-counter remedies can relieve milder symptoms and include anti-diarrheal medication for IBS-D and laxatives for IBS-C. However, they may not relieve abdominal pain as the FDA approved medications for IBS do. Abdominal pain in IBS can also be relieved by antispasmodics and neuromodulators (e.g. antidepressants or neuromodulators). Behavioral approaches such as cognitive behavioral therapy, hypnotherapy, and mindfulness-based stress reduction have been shown to improve IBS symptoms.

ADDITIONAL RESOURCES

American Gastroenterological Association

American College of Gastroenterology

National Institute of Diabetes and Digestive and Kidney Diseases

International Foundation for Functional Gastrointestinal Disorders

Rome Foundation

American Neurogastroenterology and Motility Society

What are Migraines?

Migraine is a neurovascular brain disorder affecting about 13% of people. Migraines are more than just really bad headaches. They are a collection of neurological symptoms that include severe throbbing pain, often on one side of the head, and can include nausea, vomiting, dizziness, visual disturbances, tingling or numbness in the extremities or face, and sensitivity to light, sound, smell, and touch.

What causes Migraines?

The exact causes of migraines are still unknown. It used to be thought that the dilation and constriction of blood vessels in the head were the primary cause of migraine pain. Therefore, early medicine focused on the blood vessels. It is now believed that migraines are caused by nerve pathways and brain chemicals.

There is growing evidence that migraines are hereditary. Individuals with a family history of migraines are at increased risk of having migraines. This genetic tendency for migraines results in a brain that is extra sensitive to stimuli that triggers a series of neurological events, such as abnormal firing of neurons, altered blood flow, and changes in levels of neurochemicals. Triggers vary greatly by person and over time.

Potential triggers include:

• Foods: alcohol, caffeine, chocolate, nitrates (found in processed meats like hot dogs and deli meat), artificial sweeteners, and monosodium glutamate or MSG (found in processed foods, canned foods, or Asian foods)
• Lifestyle: eye strain (especially from staring at a computer or TV for long periods of time), fatigue or lack of sleep, stress, dehydration, lack of physical activity, smoking, physical posture (e.g. sleeping in an unusual position, or sitting at a desk for a long time)
• Infection: cold, flu, or sinus infections
• Environmental: weather changes, allergens, bright or flickering lights, high altitudes, strong odors, and tobacco smoke
• Hormone fluctuations from menstruation, ovulation, menopause, pregnancy, birth control pills, and hormone replacement therapy

Types of Migraines:

The two major types of migraine are migraine without aura and migraine with aura. Aura is defined as neurological changes that occur prior to head pain. Aura symptoms may serve as warning signs for a headache. Aura symptoms tend to grow or spread gradually, usually lasting a few minutes to one hour (see below for more information on aura).

Here are some of the sub-types of migraines:

Migraine without aura (“common migraine”)

• Symptoms include pulsing or throbbing pain most often on one side of the head, nausea, vomiting, light and sound sensitivity, and pain that is made worse by physical activity.
• Lacks the warning phases (prodrome and aura)

Migraine with aura (“complicated migraine”, or “classic or classical migraine”)

• Headache is preceded by aura symptoms
• Occurs in about 25% of people with migraines
• Aura involves sensory changes, such as seeing flashing lights, zig zag lights, numbness, or vertigo. Please see below for more information on aura.

Migraine without head pain (“typical aura without headache”)

• Also called a Silent or Acephalgic Migraine.
• Aura symptoms are present without headache.

Hemiplegic Migraine:

• This type of migraine feels more like a stroke.
• People with this migraine develop weakness on one side of the body.
• Other common symptoms include the sensation of “pins and needles”, visual aura, and loss of sensation on one side of the body.
• May not include severe head pain.

Retinal Migraine:

• Temporary loss of vision in one eye.
• Most common in women during childbearing years.
• The blindness can last for as short as one minute to as long as months.
• There is little understanding about retinal migraine but it may be a sign of a more serious issue.

Chronic Migraine:

• More than 15 days a month with migraine.
• Symptoms and their severity may vary greatly on any given day.

What are the Phases of Migraine?

Prodromal Phase:

• Occurs hours or 1–2 days before the onset of head pain

• Symptoms may include:

  • Fatigue
  • Nausea
  • Blurred vision
  • Difficulty concentrating
  • Neck stiffness
  • Sensitivity to light and/or sound
  • Excessive yawning
  • Paleness

Aura Phase (not always present):

• Symptoms last a few minutes to one hour.

• Symptoms vary and may include:

  • Visual:

  • Occurs in over 90% of patients with migraine with aura

  • Zig zag lines or lights

  • Spots of flickering light

  • Blurred vision

  • Body sensations:

  • Pins and needles

  • Numbness, often in the hands and face

  • Cognitive, speech, language:

  • Often, people feel like they are not thinking clearly

  • Less frequently, people describe difficulty with written and spoken words

    • This may be difficulty in understanding what others are saying, putting words together, and/or processing written words
    • Some people may have slurred or garbled speech

  • Vertigo (a feeling of being off balance and dizziness)

  • Tinnitus (ringing or buzzing in the ear)

Headache Phase:

• Typically, throbbing pain on one side of the head. However, people can have pain on both sides of the head and without throbbing.
• Other common symptoms include nausea, vomiting, and sensitivity to light and sound.
• Without treatment, the headache may continue for up to 72 hours.

Postdromal Phase:

• Postdromal symptoms may occur after the headache and last for up to 48 hours.
• Also called the “migraine hangover”.
• There is less understanding of the Postdromal Phase.

• Symptoms may include:

  • Fatigue
  • Elated mood
  • Depressed mood
  • Achiness
  • Mental fogginess
  • Acute pain after coughing and sudden movements

Diagnosis:

Migraine is diagnosed by taking a careful assessment of the symptoms, reviewing family history, conducting medical tests, and eliminating other possible causes of the headache. Testing may include imaging from CT or MRI. Use of a headache diary can be a helpful tool for diagnosis and to better understand the frequency and severity of attacks, triggers, and responses to treatments.

Who treats Migraines?

Migraines are often treated by primary care or family medicine physicians and neurologists. Mental health providers trained in pain and headache treatments are often included in treatment and focus on techniques for managing pain, increasing quality of life, improving lifestyle behaviors that trigger or worsen symptoms, and decreasing stress.

Treatment of Migraines:

Although there is no current cure for migraines, there are treatments that help with preventing and managing symptoms. There is ongoing research on new migraine treatments (see American Migraine Foundation for more information).

• Short-term medications, such as triptans (e.g. sumatriptan, almotriptan) are used at the onset of migraine to try to stop a migraine once it has started or to decrease the symptoms. They are not used to prevent migraine, and are generally not useful for other types of pain, unless it is associated with migraine headache.

• Preventative medication focuses on reducing migraine frequency and severity. Several types of medications are approved to prevent migraines, and they work in different ways:

  • Anticonvulsants, also used to prevent seizures, such as valproic acid (e.g. Depakote) or topiramate (e.g. Topamax)
  • Botulinum toxin (Botox): periodic injections into the face and scalp.
  • Beta-blockers, which relax blood vessels, such as propranolol (e.g. Inderal) or metoprolol (e.g. Lopressor)
  • Calcium-channel blockers, which reduce the constriction of blood vessels, such as verapamil (e.g. Verelan) or diltiazem (e.g. Cardizem)

• Opioids are not recommended as a treatment for migraine due to lack of efficacy for migraines, their side effects, potential for dependence, and possible overdose death.

• It is important to use medications only as directed and not overuse medicine as this might lead to overuse (medication rebound) headaches and unwanted side effects.

• Non-medication preventative treatments include:

  • Trigger avoidance
  • Cognitive behavioral therapy
  • Biofeedback
  • Mindfulness-based therapy
  • Relaxation techniques
  • Behavioral therapy
  • Anti-inflammatory diet

• There are many new treatments currently being studied for migraines. For example, Cefaly is a new non-drug and non-invasive treatment for migraines. Cefaly is a device that is temporarily placed on the forehead and sends micro-impulses to the trigeminal nerve to relieve pain and prevent future migraines.

ADDITIONAL RESOURCES

American Migraine Foundation

• https://americanmigrainefoundation.org/resource-library/what-type-of-headache-do-you-have/
• https://americanmigrainefoundation.org/resource-library/understanding-migrainethe-science-of-migraine-how-to-deal-with-postdrome/
• https://americanmigrainefoundation.org/resource-library/what-to-know-about-the-new-anti-cgrp-migraine-treatment-options/
• https://americanmigrainefoundation.org/resource-library/integrative-complementary-migraine-treatments/

Headache Classification Committee of the International Headache Society (HIS). 2013. The international classification of headache disorders, (beta version). Cephalalgia. 33:629–808. DOI: 10.¹¹⁷⁷⁄_{0333102413485658}

International Headache Society

What is endometriosis?

Endometriosis is estimated to affect about 10% of reproductive-age women worldwide. It is a condition where tissue similar to the inner lining of the uterus (endometrium) is found outside of the uterus. The most common location of endometriosis is in the pelvis around the uterus, ovaries and fallopian tubes. Less commonly, endometriosis can occur in the intestine, appendix, bladder, diaphragm or other locations within the body.

Endometriosis typically affects women during their reproductive years, meaning any time after the first menstrual period. While symptoms usually subside after menopause, endometriosis can rarely affect women during their menopausal years. Some women with endometriosis have little or no symptoms, while others experience pelvic pain and/or difficulty becoming pregnant. Symptoms can fluctuate over time; there can be periods when symptoms flare up as well as periods of remission when they diminish or disappear. In women who experience pelvic pain, symptoms usually increase in the few days prior to and during menses. Endometriosis can affect many areas of a person’s life including work, school, daily activities and relationships. While there is currently no known cure for endometriosis, the symptoms of endometriosis can usually be managed effectively.

Endometriosis is one of many different conditions that cause pelvic pain. Pelvic pain can be caused by a variety of conditions, including gynecologic and non-gynecologic causes. The most common gynecologic causes of painful periods and/or chronic pelvic pain include endometriosis, adenomyosis, uterine fibroids, primary dysmenorrhea, and pelvic inflammatory disease. Non-gynecologic causes of pelvic pain include irritable bowel syndrome, urologic pelvic pain syndrome (interstitial cystitis), pelvic floor muscle spasm, and pelvic neuropathies (e.g. pudendal neuralgia). While some people with pelvic pain have only one cause of pain, many have more than one cause. A healthcare provider with expertise in pelvic pain can help accurately determine the most likely causes of pelvic pain in an individual patient.

Symptoms: Some people with endometriosis have little or no symptoms at all. The most common symptom is pelvic pain, and this can be any combination of painful menstrual periods (dysmenorrhea), chronic pelvic pain, painful intercourse (dyspareunia), pain with bowel movements (dyschezia), or pain with urination (dysuria). Women with endometriosis are more likely to suffer from infertility and may also develop ovarian endometriosis cysts (referred to as chocolate cysts).

• Pelvic pain: The hallmark symptom of endometriosis is pelvic pain. Pelvic pain associated with endometriosis most often occurs around the time of the menstrual period (dysmenorrhea), but can also occur between menstrual periods (chronic pelvic pain), during or after sex (dyspareunia), with bowel movements (dychezia), and/or during urination (dysuria). Patients with endometriosis can experience only one type of pelvic pain, or any combination of pelvic pain symptoms. The frequency or severity of pain often does not correlate with the amount of endometriosis identified in the body. For example, some women with only a few, small endometriosis lesions experience severe daily pelvic pain and some women with extensive endometriosis throughout the pelvis organs experience little to no pain at all. The symptoms of pelvic pain can vary, with some days being better than others. The location of pain is typically in the lower abdomen and pelvis but can radiate to the lower back and upper thighs.
• Infertility: Endometriosis can make it more difficult to become pregnant. This might occur because endometriosis can cause scar tissue to develop, which can damage the ovaries or fallopian tubes. But, it may also decrease the healthy function of the ovaries or lining of the uterus, even if scar tissue is not present.
• Ovarian endometriomas (chocolate cysts): Some women with endometriosis can develop ovarian cysts containing endometriosis, which are called ovarian endometriomas. Endometriomas are filled with old blood which resemble chocolate syrup, which is why they are called chocolate cysts. Endometriomas can sometimes be felt on pelvic exam, but not always. They are usually seen on pelvic ultrasound.
• Bloating (a sensation of fullness in the belly) is a symptom experienced by some people with endometriosis. It is more commonly experienced in individuals with co-occurring irritable bowel syndrome (IBS), but is also reported in endometriosis patients without IBS.
• Fatigue: Fatigue is often described by people with endometriosis. This may be associated with sleep difficulties or experienced during times of more severe pelvic pain.
• Sleep Problems: Some individuals with endometriosis may have difficulty falling asleep or staying asleep. Poor sleep has been associated with more bothersome pain symptoms.
• Anxiety and Depression: Endometriosis can co-exist with anxiety and/or depression but more often in individuals with more severe symptoms. The depressive symptoms and anxiety do not need to be at the level of a diagnosable disorder to influence pain perception. Simply experiencing the symptoms of pelvic pain or infertility will likely have a negative impact on mood which in turn can make other pain symptoms worse.

• Chronic Overlapping Pain Conditions (COPCs): If you have endometriosis, you may also have one or more of the other COPCs. It is thought that these conditions may share common underlying causes. The COPCs are listed below and detailed descriptions of each can be found by following the links.

  • Fibromyalgia (FM)
  • Temporomandibular Joint Disorder (TMD)
  • Chronic Low Back Pain (cLBP)
  • Migraine and tension headache
  • Urologic Chronic Pelvic Pain Syndrome (e.g., Interstitial Cystitis) (UCPPS)
  • Vulvodynia (VVD)
  • Chronic Fatigue Syndrome (CFS) (also sometimes called Myalgic Encephalomyelitis)

What Causes Endometriosis?

Although the exact cause of endometriosis is not known, several theories have been proposed. The most commonly supported theory is one called Sampson’s theory of “retrograde menstruation.” This theory states that endometriosis develops when small amounts of endometrial tissues flow through the fallopian tubes into the pelvic cavity during a menstrual period and grow outside of the uterus. Although 90 percent of menstruating women have retrograde bleeding through the fallopian tubes, the 10 percent of women who develop endometriosis likely have additional genetic, immune, inflammatory and biochemical differences that promote implantation and growth of the retrograde menstrual tissue. Additional theories include transformation of peritoneal cells into endometrial-like cells, spread of endometrial cells through blood vessels or lymphatic systems, and surgical scar implantation. It is likely that different factors play a role in different patients with endometriosis.

Risk factors for endometriosis include having a family history of endometriosis, starting your period at an early age or going through menopause at an older age, short menstrual cycles (from start of one period to the next period), heavy periods that last longer than 7 days, and low body mass.

Diagnosis of Endometriosis

Laparoscopic surgery is the gold standard way to diagnose endometriosis and involves making small incisions in the abdomen, using a camera and surgical instruments to examine the pelvic organs, and then taking a surgical biopsy to confirm the diagnosis of endometriosis. If surgery is performed, the recommendation is to surgically remove all visible endometriosis lesions and not just biopsy one or a few areas of suspected disease.

However, all surgical procedures carry risk and waiting for a surgical confirmation can delay diagnosis and delay initiation of medical treatment, which is often just as effective as surgical treatment of endometriosis. Today, multiple medical societies and guidelines encourage beginning medical treatment for presumed endometriosis if a woman’s symptoms, physical exam, and imaging tests are suggestive of endometriosis, allowing more women to get timely treatment. However, there are situations in which surgical diagnosis and treatment is considered first line therapy. These include when a patient has an enlarging or complex (irregular) ovarian mass, clinical signs and symptoms of obstruction of the intestines or urinary tract, or when a patient has severe pain but does not wish to take hormonal medication because she is trying to become pregnant.

Currently, there are no available blood tests to reliably diagnose endometriosis. Pelvic imaging, such as ultrasound and MRI, can be helpful to diagnose ovarian endometriosis cysts and deeply infiltrative endometriosis but is not currently sensitive enough to detect more superficial endometriosis.

Who treats Endometriosis?

Endometriosis is usually treated by gynecologists. While these doctors often coordinate the care of patients with endometriosis, optimal care often requires a team approach. This team might include the following specialists:

• Gynecologists – Obstetrician-gynecologists (OBGYN) are physicians who specialize in women’s health, with a focus on conditions that affect the female reproductive system (uterus, ovaries, fallopian tubes). OBGYN’s are usually the primary physician who coordinates the care of women with endometriosis. Subspecialists within OBGYN can often provide specialized care for the complex needs of women with endometriosis. For example, some gynecologists have specialty medical and surgical training in endometriosis and can provide advanced pain management and minimally invasive surgery for complex and advanced endometriosis. Reproductive Endocrinology and Infertility specialists can treat infertility caused by endometriosis.
• Advanced practice providers (nurse practitioners, physician assistants) who specialize in reproductive health conditions and often work with gynecologists can help coordinate the long-term care of women with endometriosis.
• Nurse educators – specialists who can educate about the condition and help develop or refine a personalized treatment plan.
• Pelvic Health Physical Therapists – physical therapists who specialize in the evaluation and treatment of abdominal and pelvic musculoskeletal disorders, including chronic abdominal and pelvic pain.
• Pain psychologists – specialists who can help initiate and maintain behavioral and self-care approaches to manage symptoms and who can help address psychosocial challenges associated with dealing with chronic pain and associated symptoms.
• Integrative health practitioners – specialists who use mindfulness and other positive behavioral approaches to improve endometriosis symptoms, promote healing, and improve functional status and overall well-being.
• Colorectal Surgeon, Urologist, Thoracic Surgeons – occasionally your gynecologist will work with other surgeons for surgical removal of endometriosis from organs outside of the uterus, ovaries, or fallopian tubes. Colorectal surgeons can assist with removal of endometriosis from the intestine, urologists can assist with removal of endometriosis from the bladder or ureters, and thoracic surgeons can assist with removal of endometriosis from the lungs or diaphragm.

These healthcare providers work with patients with endometriosis to improve symptoms, overall well-being and quality of life. It is likely that you and your healthcare team will need to work together to identify the best combination of professional and self-care approaches that works for you. This plan will need to be reviewed and potentially revised over time as your needs shift.

Treatment of Endometriosis

Endometriosis is considered a chronic condition that requires long-term treatment during the reproductive years (from the time of symptom onset to menopause). While there is no currently available cure for endometriosis, the symptoms of endometriosis can usually be managed effectively. The treatment/management of endometriosis can take many forms. We identify the various approaches below. You can follow the link to learn more details about each treatment/management strategy.

• Self-Care – There are many changes in your lifestyle that can help you to improve the symptoms of endometriosis. What you choose to focus on needs to be personalized to your specific situation. The link above will take you to a description of the many self-management approaches others have found helpful. You may want to talk with your healthcare provider so as to identify the self-care approaches that would be best for you at the present time.

• Professional Care –

  • Hormonal therapy- Endometriosis is an estrogen-dependent disease. Estrogen is the sex hormone that causes the uterine lining to grow and thicken in preparation for a fertilized egg. High estrogen levels stimulate endometriosis growth and low levels cause regression of endometriosis lesions and reduce associated pelvic inflammation. Most currently available medical treatments for endometriosis work in various ways to reduce overall estrogen levels. All of these hormonal medications can significantly reduce the various pelvic pain symptoms associated with endometriosis, but also reduce or eliminate menstrual bleeding which often exacerbates pelvic pain. Like all treatments for endometriosis, medical treatments for endometriosis do not cure endometriosis, but they will help alleviate pain, decrease menstrual bleeding, and may prevent progression of endometriosis. Because these medications suppress but do not cure endometriosis, recurrence of endometriosis symptoms is very common after stopping these medications. Thus, these are considered important parts of a long-term treatment plan. It is also important to note that all of these options are contraceptives, which prevent pregnancy. Thus, these are not appropriate options for women who are actively trying to become pregnant.

  • First line hormonal options include combined hormonal contraceptives (medications that contain estrogen and progestin) and progestin only medications.

    • Combined hormonal contraceptives are available as pills, weekly patches, or monthly vaginal rings and can be taken cyclically (to have a lighter, less painful period each month) or continuously to completely eliminate menstrual periods.
    • Progestin-only methods are equally effective and are available as pills or injections. These medications are taken continuously and usually completely eliminate menstrual periods.

  • Second line hormonal options are usually considered when first line options do not adequately control symptoms and include GnRH (gonadotropin-releasing hormone) analogues, progestin intrauterine devices and implants, and danazol.

    • GnRH analogues are highly efficacious but are considered second line due to less tolerable side effects and increased cost. This category of medications includes GnRH agonists and GnRH antagonists. The most commonly used GnRH agonist is given as an injection every 1–3 months. A newly approved antagonist is now available as a daily pill. GnRH analogues are associated with greater estrogen suppression than hormonal contraceptives and progestin medications, and therefore usually cause menopause symptoms including hot flushes and vaginal dryness. There is also a risk of irreversible bone loss when these medications are given for longer than their approved duration. GnRH agonists can be used with low levels of add-back estrogen/progestin therapy, which alleviates these side effects and prevents bone loss, without reducing their efficacy in improving pelvic pain. Add-back therapy with GnRH antagonists is currently under investigation.
    • Progestin intrauterine devices (progestin IUDs) have also been shown to reduce endometriosis pain and size of endometriosis implants. However, it is important to note that they do not consistently prevent ovulation and may be associated with ovarian cyst formation. Thus, this may not be an adequate option for women with ovarian endometriosis cysts (chocolate cysts).
    • Danazol is a synthetic steroid treatment that has properties similar to testosterone. Danazol side effects include acne, weight gain, hot flashes, and possibly irreversible voice deepening.

  • Surgical therapy - Surgery is generally not recommended unless previous medical treatments for endometriosis have been unsuccessful, a patient has an enlarging ovarian cyst, a patient has severe pain but cannot take hormonal medication because she is actively trying to become pregnant, or if there are signs that endometriosis is causing obstruction of the intestines or urinary tract. However, these recommendations may vary depending on individual patient needs. The concept of routine, repetitive surgeries to treat endometriosis is no longer considered standard practice by multiple professional societies. It is important to note that surgery is not a guaranteed cure for either pain or endometriosis and should always be considered as part of a therapeutic plan that often includes medical suppression prior to and after surgery to prevent recurrence.

There are two primary categories of surgery – conservative and radical. Conservative surgery removes endometriosis implants while preserving the uterus and ovaries, while radical surgery includes hysterectomy (removal of the uterus, sometimes one or both ovaries) and removal of all endometriosis implants. The right option depends on the patient’s medical history, symptoms, success of prior treatments, and her fertility goals.

Endometriosis surgery is often complex due to the inflammation and scar tissue that often surrounds endometriosis implants and the often close proximity of endometriosis to other vital organs such as the intestines, bladder and ureters (tubes that drain the kidneys to the bladder). Therefore, it is important that these surgeries are performed by gynecologic surgeons that have experience and training in complex endometriosis surgery.

• Conservative surgery - These procedures remove endometriosis implants without removing the uterus (hysterectomy). This is almost always performed using laparoscopy, a minimally invasive surgery technique that uses a thin camera and small instruments inserted into the abdomen using small “Band-Aid incisions”. Although this surgery requires general anesthesia, most patients can go home the same day and return to work in 1–2 weeks. Laparoscopic removal of endometriosis can effectively reduce pelvic pain in about 75% of women who have endometriosis. However, it is not helpful for about one in four women who have this surgery. And among women who have initial improvement in symptoms, pain and/or endometriosis returns in about 25-50% of women who do not use medical suppression after surgery.

  • Radical surgery - This refers to hysterectomy (removal of the uterus) and should also include removal of all endometriosis implants. Total hysterectomy means removal of the uterus and cervix, whereas subtotal or supracervical hysterectomy means removal of the uterus but not the cervix. (These terms do not refer to whether or not the ovaries are removed). Hysterectomy is generally considered for women with endometriosis who have not experienced pain relief from medical treatment or less invasive surgeries. Hysterectomy eliminates the possibility of carrying a pregnancy, so this is only appropriate for women who do not wish to become pregnant.

  It is important to understand that even hysterectomy is not a guaranteed cure. Pain can persist or recur despite hysterectomy, endometriosis can return after hysterectomy, and recurrent pain is not always due to recurrent endometriosis. Possible reasons for persistent or recurrent pain include the possibility that endometriosis lesions outside of the uterus that were not removed during surgery or that the pain is due to another reason.

  Because hysterectomy alone does not decrease estrogen production, remaining lesions may be stimulated from estrogen produced by the ovaries. Hysterectomy and oophorectomy is the removal of the uterus and one or both ovaries. A total hysterectomy and bilateral oophorectomy (removal of the uterus and both ovaries) is the most radical surgical option and the option with the least likelihood of recurrence, but still is not a guarantee of pain relief. In some studies, about 8% of women had recurrent pain after hysterectomy with bilateral oophorectomy. Removing the ovaries has the greatest impact on reducing estrogen production, but it also results in surgical menopausal state (in women who have yet to reach natural menopause). Early surgical menopause is associated with menopause symptoms, such as hot flushes and vaginal dryness. But it can also lead to osteoporosis (thinning of the bones), increased risk of heart disease, and increased risk of dying at a younger age than women who have not had this surgery.

• Pelvic Floor Physical Therapy - Like many other conditions that cause chronic pelvic and abdominal pain, patients with endometriosis often suffer from associated pelvic floor muscle dysfunction (e.g. pelvic floor myalgia, levator ani syndrome). This refers to abnormal contraction and shortening of the pelvic floor muscles. Symptoms of pelvic floor dysfunction include many symptoms that overlap with endometriosis, including chronic pelvic pain, painful intercourse, urinary urgency or frequency, and constipation. Pain is often worsened by physical activity and worse at the end of the day. First line treatment is working with a physical therapist who is certified in the treatment of pelvic floor dysfunction.

ADDITIONAL RESOURCES

International Pelvic Pain Society

American College of Obstetricians and Gynecologists, Patient Education FAQs

American Society for Reproductive Medicine, Patient Resources

Royal College of Obstetricians and Gynaecologists

Academy of Pelvic Health Physical Therapy, Section on Women’s Health

What is Vulvodynia?

Vulvodynia is a pain condition characterized by chronic pain at the opening to the vagina that has been present for 3 months or more – occurring either when the area is touched (e.g., tampons, intercourse, etc.) or spontaneously. Although vulvodynia was previously thought to be rare, it is now clear that more than 16 million women in the United States alone suffer from vulvodynia, with over 4% of women developing the disorder each year. It can occur in any female, regardless of age, including children and elderly women, but appears to be most prevalent in women ages 20-60. The pain has characteristics of “neuropathic” pain (pain related to aberrant nerve function); and research suggests it has both central (brain related) and local (at the vulva) findings that may reflect causal attributes as well as focal sites for treatment.

Symptoms of vulvodynia

• Pain at the opening to the vagina (i.e., introitus) that varies in a number of characteristics:

  • Provoked, spontaneous, or both
  • Localized to the opening of the vagina, or extending further laterally to the adjacent vulva and/or legs and abdomen.
  • Primary (i.e., present since first intercourse or tampon use for provoked pain, or from childhood if spontaneous pain) vs. secondary (occurring after a pain-free period)
  • May be persistent, relapsing, or recurring over time

• Described as burning, sharp, irritating, stinging, raw, throbbing, and even itching

• Pain may be prominent at the time of provocation, but may also linger for minutes, hours, or even days (a characteristic of neuropathic pain)

• Little to no response to typical medications that typically decrease nociceptive pain, such as acetaminophen, ibuprofen, or narcotics.

• Associated more frequently than expected with

  • Other chronic overlapping pain conditions (COPC):

  • Fibromyalgia

  • Irritable bowel disorder

  • Temporomandibular joint syndrome

  • Chronic Low Back Pain

  • Migraine Headache

  • Tension Type Headache

  • Urologic Chronic Pelvic Pain Syndrome (e.g., Interstitial Cystitis)

  • Endometriosis

  • Chronic Fatigue Syndrome (CFS) (also sometimes called Myalgic Encephalomyelitis)

• Mental health symptoms

  • Depression
  • Anxiety

• Sexual health issues

  • Decreased desire, arousal, lubrication, orgasm, and satisfaction
  • Pain with intercourse
  • Interpersonal adaptation issues

What Causes Vulvodynia?

Research suggests a number of potential contributors to developing vulvodynia (e.g., genetics, inflammation, childhood trauma, central nervous system sensitivity), but to date it is unclear which might (alone or in combination) CAUSE the disorder, which might MAINTAIN the disorder, and which are ASSOCIATED for an unrelated reason.

The pain of vulvodynia is not caused by an injury, such as pain felt after a trauma (e.g., cut, surgery, fracture, etc.). In the case of vulvodynia, normal responses to touch are amplified, often related to nervous system changes (i.e., the pain processing areas of the brain) and also changes in the nerves in the vulvar region. This is similar to other chronic overlapping pain conditions (COPC) listed above – a similarity that has allowed research on one COPC to be assessed for relevance in other COPCs, magnifying the impact of research in the field.

Diagnosis of vulvodynia

A diagnosis of vulvodynia might be made by any of a number of medical specialties – Family Physicians, Gynecologists, Dermatologists, Neurologists, and more. The key quality necessary for making the diagnosis is a knowledge of the disorder and an awareness of the common nature of this previously unrecognized ailment.

The diagnosis of vulvodynia depends on a careful history followed by a pelvic examination that includes components designed to determine vulvar hypersensitivity as well as to exclude other potential diagnoses. There can also be a limited laboratory assessment.

History:

The key information needed to diagnose vulvodynia includes characteristics of the pain (when did it start, how does it feel, how long does it last, what brings it on (if anything), what worsens or lessens it, and previous evaluations and treatments (and if they were helpful or not). Past history needs to include presence of other pain conditions or symptoms, medications (prescription or not) and drugs taken, menstrual history, mental health history, and family history of similar symptoms.

Examination:

The pelvic examination both confirms the diagnosis in many cases, but also determines if other competing diagnoses that might cause the symptoms are present, such as chronic yeast vulvovaginitis, Lichen Sclerosis, and Atrophic Vaginitis/Genitourinary Syndrome of Menopause. The examination includes inspection of the vulvar region for dermatologic changes (e.g., only some aspect of redness might be consistent with vulvodynia – any growths or other color changes suggest another diagnosis). A “cotton-swab test” is done, in which a cotton swab is touched to several locations around the opening to the vagina to see if any discomfort is reported. Typically this is not uncomfortable for women – a positive test suggests increased sensitivity consistent with vulvodynia. The muscles around the opening are tested by pushing on them with a gloved finger to assess strength and tenderness. Finally, if tolerated, a speculum is inserted to allow observation of the vaginal walls and to obtain a small amount of discharge for laboratory assessment.

Laboratory evaluation:

Typically, vulvodynia does not cause changes in the routine laboratory tests done in conjunction with the pelvic examination. However, two common disorders that may cause similar symptoms can be identified via the laboratory assessment. These include yeast vulvovaginitis (Candida vaginitis) and atrophic vaginitis/GSM (genitourinary syndrome of menopause). Yeast infection is often evident on the microscopic evaluation of the discharge present (yeast hyphae or spores observed, often with inflammatory cells present as well), but can be more accurately determined by a yeast culture. Atrophic vaginitis often presents with a high pH and the presence of immature epithelial cells (parabasal cells) when observed microscopically. Either of these diagnoses may occur IN CONJUNCTION WITH vulvodynia, but their presence suggests first treating for them to assess if this fixes this problem.

Who treats Vulvodynia?

Vulvodynia can be treated by a number of different specialists, and a combined approach is suggested for patients who do not respond to more limited lines of attack. In general, vulvodynia is treated by those familiar with the disorder, and often includes:

• Family Physicians
• Gynecologists
• Dermatologists
• Neurologists Working in conjunction as needed with:
• Physical therapists
• Mental health providers
• Sexual therapists

Treatment of Vulvodynia:

Treatment is often successful in greatly improving the symptoms associated with vulvodynia. However, what course of treatment will be most successful for a given individual in often not known, and one or more of a series of types and doses of medications and/or adjuvant therapies (e.g., physical therapy and mental health therapy) may be needed. While in the future it may be possible to target subgroups within vulvodynia that respond best to specific therapies, the state of the knowledge to date currently limits that ability.

Listed below are a number of treatments currently used by those specializing in the treatment of vulvodynia patients. It needs to be acknowledged that most of the best treatment trials have not demonstrated one treatment that works for vulvodynia patients in general, and often work only as well as a placebo. In addition, it has been difficult to design a study that can identify subgroups within the study that responded well, and which didn’t, to any specific treatment. And, most studies used individual treatments, often at a limited number of doses, and not in combination – limitations that might obscure potential responses. Hence, the treatments listed below are suggestions of those used by providers in the field. The order listed does not imply the order of suggested use; any treatment might be the initial suggestion of those caring for the patient.

• Medicinal

  • Topical medications – such as topical lidocaine.

  • Oral medications (used individually or in combination)

  • Antidepressants (used for impact on nerve function, rather than depressive symptoms)

    • TCAs (tricyclic antidepressants such as nortriptyline (Pamelor))
    • SNRIs (examples include venlafaxine (Effexor), duloxetine (Cymbalta), and bupropion (Wellbutrin))

  • Anticonvulsants

    • Gabapentin, pregabalin, carbamazepine, topiramate, oxcarbazepine

  • Adjunct medical therapies

  • Botox, acupuncture, capsaicin

• Physical therapy

  • Applied by PTs with training in working with the pelvic floor

• Mental health

  • CBT (cognitive behavioral therapy)
  • Sex therapy
  • Couples therapy
  • Pain management
  • Depression/anxiety oriented care

• Surgical

  • Vestibulectomy

ADDITIONAL RESOURCES

National Vulvodynia Association (NVA) Organization of patient advocates, physicians and PhDs involved with vulvodynia care and research, and interested others. The NVA provides information about vulvodynia, funding for pilot studies regarding all aspects of the disorder, and provider information to patients.

International Society of the Study of Vulvovaginal Diseases (ISSVD) Organization composed of physicians and PhDs (researchers and clinicians) who have a strong interest in diseases of the vulva.

Additional reading

Consensus terminology of vulvodynia: Bornstein, J., et al. 2015 ISSVD, ISSWSH and IPPS Consensus Terminology and Classification of Persistent Vulvar Pain and Vulvodynia. Obstet. Gynecol. 127, 745-751 (2016).

Consensus terminology of vulvodynia descriptors: Bornstein, J., et al. Descriptors of Vulvodynia: A Multisocietal Definition Consensus (International Society for the Study of Vulvovaginal Disease, the International Society for the Study of Women Sexual Health, and the International Pelvic Pain Society). J. Low. Genit. Tract Dis. 23, 161-163 (2019)

Prevalence of vulvodynia from a population-based study: Reed, B. D., et al. Prevalence and demographic characteristics of vulvodynia in a population-based sample. Am. J. Obstet. Gynecol. 206, 170 e171-179 (2012).

Data on remission and relapse of vulvodynia: Nguyen, R. H., Mathur, C., Wynings, E. M., Williams, D. A. & Harlow, B. L. Remission of vulvar pain among women with primary vulvodynia. J. Low. Genit. Tract Dis. 19, 62-67 (2015).

Reed, B. D., Harlow, S. D., Plegue, M. A. & Sen, A. Remission, relapse, and persistence of vulvodynia: a longitudinal population-based study. J Womens Health (Larchmt) 25, 276-283 (2016).

Vulvodynia – overview: Pukall, C. F., et al. Vulvodynia: definition, prevalence, impact, and pathophysiological factors. J Sex Med 13, 291-304 (2016).

Summaries of treatments used in clinical practice: Bachmann, G. A., et al. Vulvodynia: a state-of-the-art consensus on definitions, diagnosis and management. J Reprod Med 51, 447-456 (2006).

Reed, B. D., Haefner, H. K. & Edwards, L. A survey on diagnosis and treatment of vulvodynia among vulvodynia researchers and members of the International Society for the Study of Vulvovaginal Disease. J Reprod Med 53, 921-929 (2008).

What is ME/CFS?

ME/CFS is a serious, chronic disease that affects the whole body, making it difficult to function normally. ME/CFS affects more than 1 million Americans, and women are more often affected than men. ME/CFS commonly affects people in their 30s–50s but can strike patients younger than age 10 and older than age 70. At least 25% of ME/CFS patients are so ill at some point in their illness that they are in bed or unable to leave their house. ME/CFS was previously called Chronic Fatigue Syndrome in the US and has long been called Myalgic Encephalomyelitis in Canada, the UK and Australia.

The illness involves the immune system, body metabolism (the way energy is made by your body’s cells), and the nervous system (the brain and nerves that control the body), which can create problems or symptoms in the entire body.

Symptoms

Patient with ME/CFS are universally:

• Unable to carry out normal daily activities
• Very tired at times, often exhausted and ill all over
• Prone to symptoms worsening during physical activity, trying to think too hard, or when experiencing emotional stress
• Likely to experience unrefreshing sleep and sleep disturbances

And they usually have either one or both of the following:

• Cognitive or thinking problems, such as trouble organizing, feeling easily confused or overwhelmed, slow thinking, forgetfulness, and/or
• Orthostatic intolerance, which means feeling ill from standing upright, and feeling relief from symptoms after lying down and elevating the feet.

Other common symptoms of ME/CFS, but not for everyone or not occurring all of the time:

• Feeling generally weak, dizzy or out of balance when walking
• Nausea, bloating, digestive discomfort, sensitivities to certain foods
• Palpitations, discomfort in the chest, especially when standing or walking
• Cold hands and feet
• Intolerance of extreme temperatures, either hot or cold
• Sensitivity to sound and light
• Feeling feverish or like you have the flu, especially when overly tired
• Pain of varied types

Pain is common in ME/CFS but highly variable in how often and where the pain is present, what it feels like, how severe it is, and what makes it worse. The more severely ill patients typically have much more trouble with chronic pain. Both too much activity, and sometimes too little activity, can lead to more pain. The types of pain people with ME/CFS experience might include:

• Headaches of many types
• Muscle and joint aches throughout the body
• Tender lymph nodes, mild sore throat and achiness of a low grade fever
• Peripheral neuropathy (tingling or burning in both feet and sometimes the hands)
• Paresthesias (tingling, numbness, burning here and there, lasting only a few minutes, hours or days)
• Abdominal pain, bloating or discomfort
• Uncomfortable feelings in the chest, especially when not lying down
• Pain and tenderness all over the body, without a clear cause, especially after trying to do things.

What Causes ME/CFS?

The cause of ME/CFS is not fully understood. So far, no single virus has been proven to be the cause, although a few viruses and other kinds of infections are still suspected of playing a role in the illness. Scientists are also trying to understand the relationship of the illness to changes in the immune system. Some people seem to have immune deficiency, being more vulnerable to infection. Others seem to have chronic inflammation, or an over-active immune system. In addition, the effect of stress on body chemistry, or abnormal amounts of energy in cells throughout the body (metabolism), may be problematic. Certain people may be more prone to illness due to the genetics of their family, which can be evident when other family members are ill. The role of exposure to toxins in the environment is also unclear.

Diagnosis of ME/CFS

Currently there are no specific blood tests or diagnostic imaging tests that distinguish ME/CFS clearly from other chronic illnesses. The definitive diagnosis is made after 3-6 months, when the patient fits one or more of the ME/CFS Case Definitions used for diagnosis, and a careful assessment has been completed by a medical provider to investigate and treat the symptoms that are being experienced.

There are observations from physical exams that support but don’t distinctly prove or disprove a diagnosis of ME/CFS:

• Looking ill and pale with cool blotchy skin of the hands and feet after standing up or walking too long
• Visible areas of chronic redness of the throat near the tonsils (Crimson Crescents)
• Tender lymph nodes in the neck or armpit, especially when overly tired
• Mildly unstable balance when walking or when standing still, especially when eyes are closed

There are tests that are sometimes abnormal in ME/CFS but are also abnormal in other conditions. This means the abnormal test doesn’t prove the diagnosis but can support it.

• Orthostatic testing (Tilt table testing or 10-minute standing/leaning tests). These tests monitor blood pressure and heart rate in the quiet standing position for 10 minutes, or up to 45 minutes, and may show unusual changes in heart rate or blood pressure standing compared to when lying down quietly resting.
• Cardiopulmonary Exercise Tests (CPET) may show abnormalities caused by the exercise of a single test, or inability to exercise at the same level two days in a row. These tests require vigorous exercise on a stationary bike while the oxygen and carbon dioxide in your breath are measured, along with monitoring of blood pressure and heart rate.
• Various immune lab tests may be mildly or transiently abnormal, but we are not sure yet what it means. For example: mild ANA, CRP, impaired natural killer cell function, abnormal levels of cytokines (chemicals released by immune cells), immunoglobulins (antibodies) may be present, but not severe enough to make a diagnosis.
• Chronically high antibody levels in the blood related to certain viruses such as Epstein Barr Virus (EBV) and many others might be found, but we lack proof that an active or reactivated infection is causing the illness.
• Neurocognitive testing, tests that measure the content and speed of thinking, may identify the presence of slowed processing speed and reduced ability to multitask.

Who treats ME/CFS?

This is a dilemma currently because there is no specialty of medicine that covers all aspects of the illness, and it may feel a bit overwhelming for primary care providers to manage ME/CFS. There are simply not enough doctors with extensive experience in ME/CFS. Management must be a team approach, and that includes having a good primary care provider, getting advice from specialists as needed (such as internal medicine, neurology, immunology, endocrinology, cardiology, rheumatology, gastroenterology, pain specialists, physiatrists) and getting help from other medical professionals, such as physical and occupational therapists, dieticians, chronic illness counselors, and providers of alternative and complementary medicine. Ultimately, the most important member of the team is the person with ME/CFS, because learning about the illness and making necessary changes in activity, rest, sleep habits, diet, and exposure to stress can be done at home.

Treatment of ME/CFS

There are no drugs proven or approved to treat ME/CFS, but many aspects of the illness can be managed with changes in daily routines, as well as drugs familiar to your doctor, especially those known to be safe and effective for something else.

ME/CFS specialists and patients consider the most important primary management tool to be activity “pacing,” also called “living within the energy envelope”. This means changing your activity to prevent or reduce how long and how severe the symptoms are after activity. These are often “payback” symptoms from physical, cognitive and upright (feet on the floor) activities. This can be challenging to accomplish and takes discipline. It can also be challenging to prevent getting weaker and out of shape (deconditioning), but specially adapted exercises are often possible operating within the “energy envelope”.

Aspects of ME/CFS or comorbid conditions that might respond to treatment:

• Tension Type Headache
• Migraine headaches
• Fibromyalgia
• Peripheral neuropathy
• Small Fiber Polyneuropathy
• Irritable Bowel Syndrome (IBS)
• Delayed gastric emptying
• Celiac disease and gluten intolerance
• Primary Sleep Disorders and sleep disturbances
• Orthostatic hypotension or Postural Orthostatic Tachycardia Syndrome (POTS)
• Allergies and Mast Cell Activation Syndrome
• Immune deficiencies
• Frequent viral reactivation, such as herpes or shingles
• Cognitive problems related to attention and concentration
• Metabolic syndrome (pre-diabetes)
• Hormone deficiencies

ADDITIONAL RESOURCES

The National Academy of Medicine 2015 reports on ME/CFS

• ME/CFS Report Key Facts: https://www.cdc.gov/me-cfs/about/index.html
• Report Guide for Clinicians: https://www.nap.edu/resource/19012/MECFScliniciansguide.pdf

WebMD https://www.webmd.com/chronic-fatigue-syndrome/

The CDC ME/CFS webpage: https://www.cdc.gov/me-cfs/ The NIH Director’s Blog: https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs/

BatemanHorneCenter.org

#MEAction https://www.meaction.net/about/what-is-me/

Solve ME/CFS Initiative https://solvecfs.org/