FM/CFS/ME RESOURCES - FAQ's About FM

 

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FAQ'S ABOUT FM

The following are questions and answers regarding Fibromyalgia (FM). Contact us if you have a question you'd like answered. Select from the table below for more FAQ's.

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What Is FM?

Fibromyalgia (FM) is a syndrome characterized by chronic pain, stiffness, and tenderness of muscles, tendons, and joints without detectable inflammation. FM does not cause deformity or death. However, FM is a disabling disease which can last a lifetime.

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Who Gets FM?

FM occurs more often, but not exclusively, in women, possibly due to immunological factors or hormonal changes. FM is most easily diagnosed when formerly active adults become ill, but it has been reported in persons of all ages, including young children and particularly teenagers.

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Does FM Run in Families?

The role of genes in fibromyalgia and related conditions has been the subject of vigorous debate and controversy since the late 1980s. In those years, Dr. Muhammad B. Yunus of the University of Illinois College of Medicine conducted a study of 40 fibromyalgia patients and their families to determine the genetic basis of the illness. Of the families of the 40 fibromyalgia patients, 74% of siblings, 53% of children and 42% of parents had fibromyalgia. Notably, Yunus found a connection between the genetic marker, human leukocyte antigen (HLA), and the development of fibromyalgia.

HLA, a protein found in your body's cells, is used by the immune system to recognize familiar cells and reject foreign cells. Although people inherit this protein from their parents, its presence does not necessarily indicate a person will develop fibromyalgia. It has since been hypothesized that several genes are working together to create fibromyalgia in certain people.

It has long been known that chronic physical and emotional stress plays a significant role in the development of fibromyalgia. Stress can make the symptoms of FMS worse or actually initiate the syndrome.

In 1999, doctors of the Department of Psychiatry of Harvard Medical School wanted to investigate the connection between physical and sexual abuse, alcoholism and drug addiction to facial pain, myofascial painand fibromyalgia. The results were somewhat distressing; all pain groups had a high rate and history of abuse, alcoholism and drug addiction.

Fibromyalgia patients had a family abuse history of more than 64.7%, more than 38% had a family history of alcohol dependence and 5.8% to 19.1% had a family history of drug dependence. Although not all patients suffering from fibromyalgia have these types of family histories, the study revealed that chronic stress is a proven factor leading to fibromyalgia and related pain disorders.

Current research indicates that genetics, chronic stress, family history and environment all play substantial roles in the development of fibromyalgia, though no conclusive answers have been made. There is more research being done on how genetics affects fibromyalgia. While you may have no control over your genes, you can take control of your stress and reduce it by using coping skills.


Source:

  • Does Fibromyalgia Run in the Family?, Fibromyalgia-Symptoms.org.

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Does Stress Make FM Worse?

Yes, stress worsens FM symptoms. If you have ongoing problems with depression or anxiety, consider seeking help for them from your family doctor or a psychiatrist.

Anxiety and depression may arise as symptoms of FM and in turn cause insomnia, leading to worsening of the underlying problem. Relaxation techniques or a chronic pain program can also help lower your stress level and are of proven benefit in treating FM.

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Can FM Be Cured?

Although there is currently no cure for FM, symptoms can be substantially controlled by comprehensive treatment that includes education, medication, physical conditioning to improve aerobic capacity and flexibility, and psychological intervention aimed at stress management.

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How Does 5-HTP Help Fibromyalgia Pain?

5-HTP (5-Hydroxytryptophan) is a building block of serotonin. Serotonin is a powerful brain chemical, and serotonin levels play a significant role in Fibromyalgia (FM) pain. Serotonin levels are also associated with depression and sleep regulation.

For those with FM, 5-HTP may help to increase deep sleep and reduce pain. In one study published in the Alternative Medicine Review, researchers reported that supplementation with 5-HTP may improve symptoms of depression, anxiety, insomnia, and FM pains. Yet, there are some contradictory studies that show no benefit with 5-HTP.

5-HTP is usually well tolerated. But in the late 1980s, the supplement was associated with a serious condition called eosinophilia-myalgia syndrome. It's thought that a contaminant in 5-HTP led to the condition, which causes flu-like symptoms, severe muscle pain, and burning rashes. Be sure to speak to your health care provider before taking any new medication or supplement.

Sources:

  • Medline Plus: "All Herbs and Supplements."
  • The Natural Standard: "Foods, Herbs, and Supplements."
  • Fibromyalgia Network: "Treatment Studies."
  • Arthritis Foundation: "Fibromyalgia: Treatment Options."
  • McIlwain, H. and Bruce, D. The Fibromyalgia Handbook, Holt, 2007.

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Does St. John's Wort Help FM Pain?

There's no specific evidence that St. John's Wort is helpful in treating FM. However, this herb is often used in treating depression, and depression is commonly associated with FM.

St. John's wort is usually well tolerated. The most common side effects are stomach upset, skin reactions, and fatigue. St. John's wort should not be mixed with antidepressants and can cause interactions with many types of drugs. If you're on medication, check with your doctor before taking St. John's wort or any supplement. In addition, watch taking St. John's wort with other medications, including antidepressants, as it could make you ill. Be sure to speak to your health care provider before taking any new medication or supplement.

Sources:

  • Medline Plus: "All Herbs and Supplements."
  • The Natural Standard: "Foods, Herbs, and Supplements."
  • Fibromyalgia Network: "Treatment Studies."
  • Arthritis Foundation: "Fibromyalgia: Treatment Options."
  • McIlwain, H. and Bruce, D. The Fibromyalgia Handbook, Holt, 2007.

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FM and Pregnancy

There is no well-accepted effect of fibromyalgia on pregnancy. For example, no reliable improvement or worsening of pain is expected when a woman with fibromyalgia becomes pregnant, and there are no known health effects of fibromyalgia on the baby. One small study in 1997 did find that symptoms worsened during pregnancy, especially during the last trimester, and even after delivery; there was no effect on the babies' health. However, the relationship between fibromyalgia and pregnancy has not been thoroughly studied, and individual patients with the condition vary widely in how they feel while pregnant. Future research is necessary to identify whether there is a predictable effect of pregnancy on fibromyalgia or of fibromyalgia on the health of mother and fetus.

Medications used to treat fibromyalgia may not be safe for a developing fetus or during breast-feeding. If you have fibromyalgia (or any condition for which you take medications) and you plan to become pregnant, talk with your health-care providers about whether you should continue taking your medications.


Learn More About FM & Pregnancy

Source:

  • Robert H. Shmerling, M.D., associate physician at Beth Israel Deaconess Medical Center and associate professor at Harvard Medical School, Aetna InteliHealth Inc.

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Is FM Contagious?

To date, there is no evidence that FM is contagious or transmissible from person to person.

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How Long Can FM Last?

People with FM may improve after a few months, or after many years, or never at all. They may reach a plateau at some constant level of health, or may progressively decline. Often, the symptoms change over time, or cycle irregularly. Relapses are common, especially after stressful life events or additional illness. Exertion can cause not merely a relapse, but a worsening of overall health. Undiagnosed cases of FM often worsen as the sufferer attempts to return to a "normal" level of activity, only to make their condition worse through exertion.

Of those FM patients moderately to severely affected, many may expect to remain so for an indeterminate period, even for the duration of their life. It is not known whether any patients truly "recover" entirely from the illness, or merely recuperate enough to regain previous levels of activity.

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Is FM A Form Of Arthritis?

Although it was once thought that FM might be a form of arthritis, research over the past 10 plus years has proven that to be false. Arthritis is defined as an inflammation of the joints, but there is no inflammation with FM, nor is there any damage to the joints. A Fibromyalgia patient may have a type of arthritis (like osteoarthritis or rheumatoid arthritis) in addition to FM, but it is a completely separate disorder. On the FM research front, new brain-imaging techniques and scientific studies are revealing that Fibromyalgia is better defined as a central nervous system disorder that results in abnormal pain processing.

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Does FM Affect The Muscles, Joints and Connective Tissues?

For many years FM was described as a musculoskeletal disorder because much of the pain people experience with FM feels like it is coming from the muscles, joints and connective tissues. However, years of testing failed to reveal any actual damage to the musculoskeletal system.

What research has discovered is that a malfunction in the central nervous system of FM patients causes disordered sensory processing which leads to pain amplification. In other words, a stimulus that would not even be noticed by most people can be extremely painful to someone with Fibromyalgia.

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Why Do I Have Numbness?

Fibromyalgia numbness is a neurological symptom that effects about a quarter of fibromyalgia sufferers and is accompanied by tingling and pins and needles sensations. Most often, the numbness occurs in the arms and legs but can spread to the feet as well. Numbness in these areas can be very frustrating and can interfere with simple everyday tasks.

The cause of fibromyalgia numbness is not known, but one theory is that it results from muscle spasms pushing on nerves. There is no known cure for fibromyalgia numbness so it is crucial that you identify possible triggers to your numbness and try to avoid it as much as possible by altering part of your lifestyle. To alleviate some of these pains, you can try to do fibromyalgia exercise.


Source:

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Is FM An Autoimmune Disease?

Autoimmune disease is the result of a body's overactive immune response. In a sense, the body's immune system begins to attack it's own cells and tissues. There is no evidence that FM is an autoimmune disease. In fact, years of research have not turned up any virus, bacteria or immune disorder.

It's not unusual, however, for someone with FM to also have one or more autoimmune diseases, such as: Celiac Disease, Crohn's Disease, Lupus, Multiple Sclerosis, Rheumatoid Arthritis, Sjögren's Syndrome, or some types of thyroid disease. Other illnesses that are suspected to have an autoimmune link and may occur with FM include: Chronic Fatigue Syndrome, Endometriosis, Interstitial Cystitis, and Lyme disease.

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Is POTS Associated with FM?

Although FM is defined by chronic widespread pain and tenderness, additional symptoms, including disabling fatigue and dizziness, are often reported by patients with this chronic illness. Although nonrestorative sleep may play an important role for chronic fatigue in FM, other mechanisms, including dysfunction of the autonomic nervous system (ANS), need to be considered.

Many important biological functions, such as heart rate, blood pressure, respirations, and bowel function, are tightly regulated by the ANS. However, dysfunction of the ANS is common in FM and often becomes quite apparent after positional changes from supine to upright. Although such positional changes sometimes result in syncope, they are more often associated with palpitations and dizziness.

Head-up tilt table testing can be used to evaluate autonomic dysfunction and is frequently helpful for the work-up of FM complaints, including fatigue, dizziness, and palpitations. One of the most common events experienced by FM patients during tilt table testing is postural orthostatic tachycardia syndrome, which is defined as a heart rate increase of more than 30 beats per minute after more than 3 minutes of standing upright.


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Is FM A Psychological Problem?

This myth probably causes the most frustration to FM patients. After years of being told "It's all in your head," patients finally have proof that FM is a very real, physical illness. Research studies have revealed a number of biological abnormalities, including:

  • Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems experienced by FM patients.

  • High levels of substance P, a central nervous system neurotransmitter involved in pain processing.

  • Low levels of nerve growth factor.

  • Low levels of somatomedin C, a hormone that promotes bone and muscle growth.

  • Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.

Despite the scientific evidence, some medical professionals continue to dismiss FM as a psychological problem, insisting that the symptoms are caused by depression. The fact is that the percentage of FM patients who suffer with depression is no higher than for any other chronic illness. Unfortunately, since it takes an average of 17 years for new research to become part of mainstream medicine, we're probably going to be fighting this myth for several more years.

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What Can I Do To Help Myself?

Lifestyle modifications may help you conserve energy and minimize pain. Learn what factors aggravate your symptoms and avoid them when possible. Many patients find warm water (hot tub or shower) to be soothing. Hot wraps for particularly painful areas are also beneficial. Maintaining a rigid sleep schedule (e.g., ensuring that you receive at least eight hours of sleep per night and that you have a routine for easing you into sleep) is one method endorsed by patients to help minimize daytime fatigue and reduce nighttime sleep difficulties. Gentle movement and stretching exercises will help you maintain your function, which is essential when the body is tired and the muscles hurt.

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What Factors Aggravate The Symptoms of FM?

Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, infections (flu or a cold), and over-exertion can all contribute to symptom flare-ups. Repetitive use of the same muscle group can strain the muscles and lead to more pain.

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Why Do I Feel Depressed?

Depression or anxiety may occur as a result of your constant pain and fatigue, or the frustration you feel with the condition. It is also possible that the same chemical imbalances in the brain that cause FM also cause depression and anxiety.

Depression can leave you feeling alone, anxious, and extremely sad, and can make FM even more troublesome to deal with. You are not alone - help for depression is out there and can include support groups, prescription medications and botanical supplements.

It is important to describe your signs of depression as accurately as possible to your health care provider so he can try to find a cause for your depression. Additionally, medications can be prescribed to help ease your depression symptoms. Antidepressants commonly used to treat depression have also been shown to be helpful in easing some FM symptoms.

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Can Melatonin Help Fibromyalgia?

Melatonin is a natural hormone that's available as an over-the-counter supplement. It is sometimes used to induce drowsiness and improve sleep patterns. Some preliminary findings show that melatonin may be effective in treating Fibromyalgia (FM) pain. Most patients with FM have sleep problems and fatigue, and it's thought that melatonin may help relieve these symptoms.

Melatonin is generally regarded as safe with few to no side effects. Due to the risk of daytime sleepiness, though, anyone taking melatonin should use caution when driving until they know how it affects them. Be sure to speak to your health care provider before taking any new medication or supplement.

Source(s):

  • Medline Plus: "All Herbs and Supplements."
  • The Natural Standard: "Foods, Herbs, and Supplements."
  • Fibromyalgia Network: "Treatment Studies."
  • Arthritis Foundation: "Fibromyalgia: Treatment Options."
  • McIlwain, H. and Bruce, D. The Fibromyalgia Handbook, Holt, 2007.

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Which Herb or Supplement Helps FM?

Supplements as Fibromyalgia & CFS/ME Treatments is an article that can help answer this question. Before taking any herb or supplement, talk to your health care provider or pharmacist about possible side effects or herb-drug interactions.

Herbal therapies are not recommended for pregnant women, children, the elderly, or those with weakened immune systems. In addition, some herbs have sedative or blood-thinning qualities, which may dangerously interact with anti-inflammatory painkillers or other pain medications. Others may cause stomach upset if taken in large doses.

Sources:

  • Medline Plus: "All Herbs and Supplements."
  • The Natural Standard: "Foods, Herbs, and Supplements."
  • Fibromyalgia Network: "Treatment Studies."
  • Arthritis Foundation: "Fibromyalgia: Treatment Options."
  • McIlwain, H. and Bruce, D. The Fibromyalgia Handbook, Holt, 2007.

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Why is Exercise Important for FM?

Experts believe that exercising is essential for keeping muscles strong and flexible, controlling weight, and helping you stay active in other areas of life. In fact, exercise and activity allow patients to have some control over the disease and the amount of pain they feel.

It used to be that doctors thought that exercise might exacerbate FM symptoms or accelerate the disease. So doctors encouraged patients to seek rest, not activity. But recent scientific studies have shown that, for most patients, range of motion, strengthening, and aerobic conditioning exercises are safe and necessary.

Whether it's daily walks, stretching routines, swimming, yoga, tai chi, or Pilates, low-impact exercise programs can keep you fit in spite of your FM.

Sources:

  • Fibromyalgia Network: "Treatment Studies."
  • Arthritis Foundation: "Fibromyalgia: Treatment Options."
  • American Academy of Family Physicians: "Fibromyalgia and Exercise."
  • McIlwain, H, MD, and Bruce, D, PhD. The Fibromyalgia Handbook, Holt, 2007.

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Are There Exercises to Avoid With FM?

There are no particular exercises to avoid with FM. Aerobic exercise (running, jogging), weight training, water exercise, and flexibility exercises can all help.

Golf, tennis, hiking, and other recreational activities are also healthful. If you have other medical problems or if you're planning more than a moderate-intensity exercise program, discuss your plan with your doctor before you start.

Sources:

  • Fibromyalgia Network: "Treatment Studies.
  • Arthritis Foundation: "Fibromyalgia: Treatment Options."
  • American Academy of Family Physicians: "Fibromyalgia and Exercise."
  • McIlwain, H, MD, and Bruce, D, PhD. The Fibromyalgia Handbook, Holt, 2007.

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What Exercises Are Helpful for FM?

If you're in pain, there's a temptation to skip exercising. But exercise can often help reduce pain and improve your quality of life. Just remember to pace yourself and consult a physical therapist for advice. Here are some exercise that can help get you moving.

  • Walking
  • Swimming
  • Yoga
  • Tai chi
  • Pilates
  • Simple Stretching
  • Light-weight and strength training
  • Sex
  • Golfing
  • Aerobic Activity

Sources:

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What Are These Lumps Under My Skin?

One very common symptom expressed by fibromyalgia patients but not commented on in most textbooks is the presence of painful lumps under the skin.

These lumps are peculiar in that they can't be seen, but patients can feel them under the skin. They are called lipomas. A lipoma is a growth of fat cells in a thin, fibrous capsule usually found just below the skin. Lipomas are found most often on the torso, neck, upper thighs, upper arms, and armpits, but they can occur almost anywhere in the body. One or more lipomas may be present at the same time. Lipomas are the most common noncancerous soft tissue growth. (More About Lipomas Here)

Some people attribute these lumps to "stuck" superficial fascia. Superficial fascia is attached to the underside of your skin. Capillary channels and lymph vessels run through this layer, and so do many nerves. The subcutaneous fat is attached to it. If your superficial fascia is healthy, your skin can move fluidly over the surface of your muscles. In FM and Chronic Myofascial Pain (CMP), it is often stuck, according to some authorities.



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I have RA and fibromyalgia. Every time I get my teeth cleaned, I have a flare of both conditions a few days later. Do you know why this might happen?

We know any type of stress - whether physical stress, such as an infection, or emotional stress, such as fear - can make fibromyalgia and perhaps RA worse, too. In the scenario you describe, I can think of at least three potential stressors that may contribute to your flares: the release of bacteria from the mouth into the bloodstream during cleaning, which stimulates the immune system just enough to increase the level of cytokines in the bloodstream and tissue; the discomfort associated with the procedure, and the anxiety caused by anticipating another flare. Once you know this has happened in the past, it would not be unreasonable to assume it might happen again.

Theoretically each of these three stressors could be dealt with to help reduce your risk of future dental-cleaning-related flares. Antibiotics could be used before and during the procedure to control the bacteria, and deep-breathing or relaxation techniques could be used to help reduce your anxiety, and therefore flares. Analgesics could be used after the procedure, if necessary, to relieve pain. Speak to your doctor or dentist about pre-cleaning medications and about specific techniques that might be helpful.



SOURCES:

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Could FM flare-ups be linked to my menstrual cycle?

The answer is yes - many women with FM notice a connection between their menstrual cycles and their symptoms.

There are several theories about why FM develops, including the notion that the primary problem is abnormal hormonal regulation; if true, that could link the symptoms to menstrual cycles. Your description of a "link" is probably the best way to think about the relationship between menstrual cycle and FM symptoms. Although it's not at all clear that having your period causes an increase in symptoms, doctors and patients alike have long noted an association in timing between an increase in pain and the time just before or during menstrual bleeding. However, not every woman with this condition notices this connection.

Other theories focus on heightened pain perception, abnormal regulation of growth hormone, stress hormones, or stages of sleep. For instance, sophisticated studies of brain function show that when compared with people who don't have FM, those with this syndrome demonstrate increased activity in the areas of the brain involved in pain perception following minor trauma.

Just as the cause of FM is unknown, the things that make it better or worse are variable as well. On average, cold or humid weather, mental or physical fatigue, excessive activity or inactivity, or anxiety tend to make symptoms worse - for many, having their period is on this list as well. Warm or dry weather, warm water, adequate sleep, and regular, moderate exercise tend to improve symptoms. A number of medicines have demonstrated modest benefit, including low doses of amitriptyline, cyclobenzaprine or fluoxetine. Alternative therapies may be more helpful (and better tolerated) than conventional therapies in this condition.

We need a better understanding of what causes this illness. Only then will the connection between menstrual cycles and symptoms of FM become clearer. Ongoing research may provide this information in the near future. See your health-care providers for evaluation so that appropriate treatment for FM can be offered and to rule out another cause of your symptoms.

Source:

  • Robert H. Shmerling, M.D., associate physician at Beth Israel Deaconess Medical Center and associate professor at Harvard Medical School, Aetna InteliHealth Inc.
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