Frequently Asked Questions?
©  Marjorie van de Sande, B.Ed., Grad. Dip. Ed.
National ME/FM Action Network, Director of Education

Note:  Readers may download these Q & A.

What is Fibromyalgia Syndrome (FMS)?

Fibro refers to fibrous tissue – ligaments and tendons, myo refers to muscle, and algia refers to pain. Fibromyalgia involves widespread pain of the muscles, ligaments, and tendons. A syndrome is a set of signs/symptoms that are seen together.

In the WHO’s ICD-10, published in 1992, Fibromyalgia was assigned the number M79.0 and classified as a non-articular rheumatism. Illnesses cannot be classified in more than one category, thus, fibromyalgia cannot be classified under any category of illness other than non-articular rheumatism.

There appears to be a genetic factor involved in some patients. A physical trauma, such as a whiplash or spinal injury, can trigger FMS in some patients. In other cases it comes on gradually with no known cause.

Studies estimate that between 2% and 10% of the general population have FMS. It is two to five times more common than rheumatoid arthritis.

FMS affects all age groups, including children, all racial/ethnic groups, and all socioeconomic strata. It is most common between the ages of 35 to 50. As in many painful conditions, such as arthritis, there is a higher prevalence of FMS in females.

All the mechanisms are not fully understood. Females generally have a more flexible and delicate skeleton, longer necks, and thinner, less massive muscles than males. This makes females more prone to neck and spinal injuries. The sacroiliac and pubic joints have had and their ligaments stretched during pregnancy and childbirth, making them less stable and more prone to lower back injury. Females have less tolerance for pain than males, as females produce more of some brain chemicals that increase pain signals and less of some other brain chemicals that decrease pain signals.

What is the Clinical Case Definition of FMS?

 What Procedure does the Doctor Follow?

 History of widespread Pain That Lasts at Least Three Months
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11 of 18 Tender Points Present
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FMS
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Screen for additional Clinical Symptoms & Signs
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Determine Total Illness Burden of Fibromyalgia Syndrome 

Why Are Clinical Symptoms and Signs Included in the Clinical Definition?

For research purposes, widespread pain and tender points are the only criteria needed to meet the definition of FMS. In a clinical setting, once the patient has met the criteria of FMS, it is important to assess all of the patient’s symptoms related to the illness in order to establish the patient’s total illness burden.

There are specific, distinctive points on the body called tender points. When they are touched with a force that is not painful to healthy people, the tender points produce pain in FMS patients. Many of the tender points are where ligaments, tendons, or muscles attach to bones.

 Just as a painful left arm can indicate malfunction of the heart, the painful tender points indicate that there is dysfunction in the central nervous system related to pain processing. FMS patients have higher than normal levels of some chemicals that increase pain signals to the brain and lower than normal levels of some other chemicals that decrease pain signals. This results in miscommunication between the brain and the body. Unopposed pain signals are being sent to the brain and from the brain to the body.

There is often a known trigger such as a physical trauma, but the symptoms of FMS usually take several weeks to months to develop. The widespread pain and tender points usually develop first. Many of the other clinical symptoms come on gradually.

Do you recall the fairy tale where the princess could feel a pea under her mattress? FMS patients are extremely sensitive to pain and the pressure of a fold in their night -clothes can cause enough pain to wake them up. How many minutes can you hold a muscle in a flexed state before it becomes tired – 5, 10, 15 minutes? FMS patients are living with muscles that are permanently contracted and relentlessly pulling on their joints. Their constantly stressed joints are unstable and have abnormal movement, and sometimes are pulled out of alignment. This puts more stress on the muscles, which in turn puts more stress on the joints, and so the vicious circle continues. Their body can become lopsided. They have difficulty sleeping, and do not get into the deep states of sleep that are needed for restore the body. They wake up in pain, stiff, and exhausted - feeling like they have been hit by a truck. They have impaired cognitive functioning, and symptoms of ANS/endocrine origin. The severity of FMS can range from mild to debilitating.

Although the pain is most often felt in the muscles and joints, ligament and tendons are also sensitive to pain. When injured, they are difficult to heal as they have a limited blood supply, particularly where they attach to the bone. Lax or injured ligaments do not hold the joints in place properly so there is abnormal joint movement.

When there is abnormal movement of a joint, muscles around the joint tend to react by contracting in order to help stabilize the joint and prevent further damage. Muscles that are shortened from spasm are dysfunctional and chronically fatigued.

Although patients are usually told to exercise, there is no evidence that exercise will help reduce pain. On the other hand, you want to remain as active as possible without worsening your condition. An important consideration is the extent of dysfunction of the muscles and ligaments. Lax or injured ligaments cause abnormal joint movement, which in turn causes the muscles to tighten and shorten. These muscles are dysfunctional and must be warmed and stretched before any exercising. If they are not stretched and released, strengthening exercise can cause further shortening and dysfunction of the muscles. No exercise will tighten lax or injured ligaments.

What Precautions Must be Taken Before Exercising?

• Medical management of your symptoms must be under optimal control.
• Total illness burden must be assessed.
• Risk factors and pain generators must be determined and addressed.
• Disturbances and limitations of function are biological realities that must be acknowledged.
• Activity boundaries and fluctuations must be recognized and accommodated.
• The treating doctor knows the patient best and should direct and coordinate rehabilitative efforts.
• All rehabilitation personnel must be knowledgeable about FMS.

What Kind of Exercise Program is Recommended?

Exercise is not recommended for all FMS patients.

• Exercise must be individualized.
• Begin at a comfortable level and progress slowly.
• Patients must have autonomy over the intensity and pacing of exercise.
• Stretching and gentle exercising are best.

 Weight gain is common. An under-active thyroid is three to twelve times more common in FMS patients than in the general public. Some medications commonly used for FMS cause weight gain. Patients are also less active due to their pain.

What Can I Do to Help Myself?

• Education: Become knowledgeable about FMS.
• Early warning signs: Pay attention to how you feel, and take your temperature before and after an activity. If your temperature drops, you have done too much. Become aware of which things aggravate your symptoms and how long you can do an activity.
• Listen to your body and trust your feelings: Pace your activities, do what you can without aggravating your symptoms, stop before you “crash”, and rest when you need to.
• Keep you body warm: It is important to keep warm as your muscles tend to stiffen when they are cold.

Some patients experience some improvement over the years while other experience worsening of symptoms and functional disability. Generally, the course remains stable, patients continue to be symptomatic, and do not improve overall.

Is There a Cure?

There is no known cure for FMS, but your doctor will be able to help lessen the severity of some of your symptoms.

• Central nervous system (CNS) imaging: Research indicates that many of the abnormalities found in FMS are associated with abnormalities in the CNS.
• Autonomic nervous system (ANS): Studies indicate that there are a number of abnormalities in the regulation and stabilizing roles of the ANS.
• Sleep dysfunctions: Sleep studies indicate that patients do not get into the deep restorative stages of sleep, and suffer insomnia and/or early wakening.
• Neurocognitive dysfunctions may be related to poor sleep as deep sleep strengthens short-term memory and new memory consolidation.
• Mismanagement of sensory information: Hypersensitivity to noise, light, and fast-paced or confusing environments, and disruption of motor information has been found.
• Skeletal muscle dysfunction has been studied.
• Pain and neurochemicals: Research has found increased levels of some CNS chemicals that amplify pain and decreased levels of chemicals that decrease pain in FMS patients.
• Neuroendocrine: Hormone deficiencies and dysfunction of some of the neuroendocrine axes have been found.

1. Jain AK, and Carruthers BM, co-editors. van de Sande MI, Barron SR, Donaldson CCS, Dunne JV, Gingrich E, Heffez DS, Leung F Y-K, Malone DG,  Romano TJ,  Russell IJ, Saul D, Seibel DG.  FIBROMYALGIA SYNDROME: Canadian Clinical Working Case Definition, Diagnostic and Treatment Protocols. A Consensus Document. Journal of Musculoskeletal Pain 11(4), 2004.
   Clinical criteria and diagram are reprinted with permission of Haworth Press.
   © Copyright 2004 Haworth Press Inc., Binghamton, NY. Available from The Haworth Press Delivery Service: 1-800-429-6784, fax (607) 771-0012, e-mail: orders@haworthpressinc.com http://www.haworthpressinc.com/store/product.asp?
2. Carruthers BM and van de Sande MI.  Fibromyalgia Syndrome:  A Clinical Case Defintition and Guidelines for Medical Practitioners.  An Overview of the Canadian Consensus Document.  Carruther & van de Sande; 2005/2006.
   
   
   
   This page was last reviewed/modified on 03/2007.