Please note: The following article was published in 1999
March - April 1999
A look at Fibromyalgia syndrome: Where we are; where we’re going
Editors note: This article is reprinted with permission from Fibromyalgia Frontiers, the newsletter of the Fibromyalgia Association of Greater Washington (D.C.). It is relevant to CFIDS patients for two reasons: Many people with CFIDS also have fibromyalgia, and Dr. Rothenberg's comments about illness management apply as much to CFIDS as to fibromyalgia.
By Russell Rothenberg, MD
Fibromyalgia syndrome (FMS) as we understand it today evolved from the work of Drs. Smythe and Moldofsky in 1975 who described tender points and sleep disturbances associated with a condition then known as "fibrositis" (meaning literally inflammation of the soft tissues). As we subsequently learned that no inflammation was involved in the disease process, the name was changed to fibromyalgia syndrome. In 1990, the American College of Rheumatology published the first definition of FMS. It is important to recognize that we are dealing with a disease which has been in existence for a long time, but has been poorly understood until recently. Although much research has been done in the last 10 years, we clearly have a long way to go in understanding how to diagnose, treat and understand the disease process of fibromyalgia syndrome.
Many millions of patients in the United States and around the world suffer from FMS. It is a chronic pain syndrome associated with hyperalgesia (increased diffuse pain). That means fibromyalgia patients feel more pain than many other chronic pain patients with the same degree of injury or medical problems. For example, a patient with an injury or a patient with arthritis and concurrent FMS will feel significantly more pain than a patient with the injury or arthritis alone. Unfortunately, there are still too many doctors who do not have adequate training and experience in FMS diagnosis and treatment. With the proper comprehensive and coordinated medical care, fibromyalgia patients improve and feel better than those who do not get such care.
A loss of pain regulation
We know that fibromyalgia syndrome involves a loss of pain regulation in the central nervous system (CNS) which in turn causes pain amplification. Excessive pain stimulation then appears to lead to abnormal levels of CNS neurotransmitters like serotonin, norepinephrine and Substance P that enable nerves to transmit signals in the brain. These neurotransmitter imbalances in turn create problems with the body's hormonal response to stress (i.e., inappropriate levels of cortisol, catecholamines, growth hormone and possibly thyroid hormones) which cause abnormalities in the autonomic nervous system, the system which regulates involuntary functions such as blood pressure and bowel function. Such abnormalities seem to contribute to irritable bowel syndrome, neurally mediated hypotension (low blood pressure), irritable bladder syndrome, vascular headaches, chronic fatigue and non-restorative sleep disorders.
Research expands understanding
Some of the leading FMS researchers in this country are working on identifying the aforementioned biochemical abnormalities and determining how they effect fibromyalgia syndrome. I. Jon Russell, MD, has documented excessive levels of Substance P in the brain. Leslie Crofford, MD, has described pituitary-adrenal hormonal abnormalities in response to stress. Robert Bennett, MD, has described growth hormone and somatomedin C deficiencies leading to chronic soft tissue injuries. Muhammad Yunus, MD, and Daniel Clauw, MD, have described irritable bowel, bladder, hypotension, vascular headaches and chronic fatigue problems in persons with fibromyalgia.
FMS patients often develop myofascial pain (soft tissue spasms usually associated with trigger points) which can be extremely painful and difficult to resolve. Stretching exercises, physical therapy, massage therapy, trigger point injections, and regular low impact aerobic exercises help decrease myofascial pain and actually improve fibromyalgia syndrome. It is critical, however, that we develop better methods of measuring FMS disease activity. Dr. Russell has found that total tender point counts (as ascertained by a dolorimeter) and average pain thresholds are two good measurements of disease activity. Global assessment of pain and standardized questionnaires have also proven useful, though more work is needed in this area.
Focus on the brain
David Hubbard, MD, has described the use of EMG (electromyogram)-guided trigger point injections as a technique to improve the effectiveness of standard trigger point injections. He has also documented the experimental use of the medication phenoxybenzamine in injections which has successfully eradicated trigger points for up to two years, a tremendous improvement over current medicines that only work for about a week. Infrared laser therapy may also prove effective and safe in treating tender points. Stuart Donaldson, PhD, has described a brain wave pattern on EEG (electroencephalogram) tracing that is characteristic for fibromyalgia. His recent study in the Canadian Journal of Clinical Medicine (June 1998) shows that the patients with cognitive dysfunction (i.e., problems remembering things involving more than one step) or "fibro-fog" improved with his photostimulation neurotherapy; in addition, their brain wave EEG tracings returned to normal. If other researchers are able to duplicate Donaldson's findings
This will represent a real breakthrough in FMS. We will then have another objective test specific for fibromyalgia syndrome.
New data shows that patients with long-standing fibromyalgia may not do as poorly as one might expect. In fact, with appropriate treatment, patients having fibromyalgia for more than 10 to 15 years tend to improve. We also know that patient education alone ( i.e., helping patients help themselves) will improve the outcome for many persons with fibromyalgia. Since FMS patients have been shown to generate higher health care costs than other chronic pain patients, the hope is that with better understanding of the disease, less costly evaluations and fewer medical consultations will be needed to arrive at a diagnosis and initiate treatment.
For physicians who do not have significant experience with FMS, especially specialists treating patients' "non-fibromyalgia" problems, (e.g., a gynecologist treating endometriosis, an ENT treating sinusitis, or an orthopedic surgeon treating a bone fracture), the degree of pain the patients experience can be unsettling. There is a misconception that patients with FMS have a tendency not to get better, but that is untrue. My experience in treating over 600 patients with FMS has shown me that virtually all patients treated for "non-fibromyalgia" problems will get better when treated appropriately, though they may require more pain medication than the average patient.
Be alert for other illnesses
In addition, it is important that one not assume that all patients who appear to fulfill the definition of FMS actually have FMS. There is an increased incidence of patients with hypothyroidism, hyperparathyroidism, Lyme Disease, hepatitis C infections, and Sjgren's Syndrome whose symptoms mimic (but are not) fibromyalgia. Another important point to remember is that not all fibromyalgia patients who experience pain flare-ups do so because of their FMS. Studies have shown that both neck injuries and congenital cervical spinal cord disease can aggravate and possibly cause FMS in certain patients. When the cervical spine problem is corrected, the fibromyalgia symptoms resolve.
Remember that FMS patients who are in pain and are fatigued can also have other concurrent problems causing pain and fatigue. They can have musculoskeletal problems such as arthritis, herniated disks, lumbar spinal stenosis, piriformis syndrome, rotator cuff tendinitis or tear, or plantar fasciitis which will aggravate fibromyalgia symptoms and require simultaneous therapy for the patient to improve. FMS patients who have non-restorative sleep as part of their symptom profile can also have non-fibromyalgia sleep disturbances such as sleep apnea and restless leg syndrome which need to be treated as well.
It is my experience that in patients who have both FMS and arthritis, the arthritic disease can trigger fibromyalgia flare-ups. Thus, treatment of relatively mild arthritis may avert an exacerbation of the fibromyalgia. Patients with a past history of depression prior to the onset of their FMS run an increased risk of aggravating their primary depression as well as any depression that is associated with their FMS, and both types of depression may require different therapies for the patient to improve.
We know that there are primary and secondary (associated with another disease) subsets of fibromyalgia. However, there are probably other subsets as well, such as genetic, myofascial pain or injury- related, rheumatic disease overlap, central nervous system/neuroendocrine disorders and psychiatric/history of abuse. As our understanding of the various subsets of fibromyalgia increase, we may find that the treatments are different for each group. Understanding specific FMS symptoms and how they relate to similar symptoms in other diseases may also prove important. For example, systemic lupus and FMS may share a common symptom such as cognitive dysfunction, and the treatment (such as DHEA) may be the same.
Unfortunately, there is still no medication available that is specific for FMS patients. Initial research showed only the anti-depressant Elavil (amitriptyline) and the muscle relaxant Flexeril (cyclobenzaprine), to be effective treatments for fibromyalgia in double-blind studies. It now seems clear that other anti-depressant drugs that increase serotonin in the central nervous system, i.e., SSRI's such as Prozac, (fluoxetine) and Effexor (venlafaxine), are effective in fibromyalgia syndrome. Ultram (tramadol), a pain medication that increases serotonin, and Ambien (zolpidem), a sleeping pill which gets the patient into REM sleep, are two other drugs with unique properties beneficial for many FMS patients. Additional medications used in FMS include acetaminophen, non-steroidal anti-inflammatories, tranquilizers, other muscle relaxants, antidepressants, sleeping medicines and narcotic analgesics.
When treating FMS patients, holistic care is essential. This includes diagnosing the source(s) of the pain and treating each problem appropriately. It is usually necessary to combine modalities of treatment including medication, physical rehabilitation, modification of lifestyle and/or the workplace along with adequate patient education and support systems. Patients need sufficient pain medication to suppress their symptoms and prevent their fibromyalgia from becoming worse. At the same time, however, too much pain medication may over-suppress their symptoms allowing them to overdo it and aggravate their FMS.
A plan for progress
In my opinion, future advances and research should include the development of both CNS neuro-transmitter drugs that are more specific for FMS and analgesic medications that are longer-acting, non-sedating, and non-addictive. We also need to better understand and correct the neuro-hormonal abnormalities in FMS patients. Also crucial is the development of better demographic information on FMS and FMS disability since research funding and disability determinations depend upon it.
We need to allow a FMS specialist to be the patient's primary care professional when the current primary care doctor is not familiar with fibromyalgia syndrome and the holistic care it requires. Finally, we must educate all health care providers that FMS exists; it's treatable; and when treated, patients improve as with any other medical condition.
Key points for progress:
We need to allow a FMS specialist to be the patient’s primary care professional when the current primary care doctor is not familiar with fibromyalgia syndrome and the holistic care it requires.
The development of better demographic information on FMS and FMS disability is critical since research funding and disability determinations depend upon it.
We must educate all health care providers that FMS exists; it’s treatable; and when treated, patients improve.
Russell Rothenberg, MD, is board certified in internal medicine and rheumatology and is a diplomate of the American College of Rheumatology. He is also Assistant Professor of Medicine at George Washington University Medical Center in Washington, D.C., and is a consultant to the Arthritis Foundation, Metropolitan Washington Chapter. He has served as Chair of Medical Advisory Board of the Fibromyalgia Association of Greater Washington, Inc., since 1993. Dr. Rothenberg is currently in private practice in Washington, D.C., and Rockville, Md.
Reprinted with permission from Fibromyalgia Frontiers, Vol. 7, #1, Jan/Feb 1999. For more information, contact the Fibromyalgia Association of Greater Washington, Inc., 13203 Valley Drive, Woodbridge, VA 22191-1531. Phone: 703/790-2324.