March - April 1999
syndrome: Where we are; where
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
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
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.
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
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
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
Be alert for other illnesses
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.
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
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:
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.
Researchers announce a new test for
fibromyalgia syndrome. See
Research News in this issue for more information.