How We Approach Fibromyalgia Treatments (FMS)
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Fibromyalgia (FMS) is a condition of sore muscles and increased sensitivity to pain. The “official” definition requires that at least 11 of 18 designated tender point sites be especially sensitive to pressure induced pain. Other conditions must be excluded as the primary cause of pain. For example: osteoarthritis, Lyme disease, adrenal gland failure. With severe Fibromyalgia (FMS), most people also develop additional symptoms. These include cognitive or concentration difficulties, chronic fatigue, joint aches, poor sleep, or headache. Secondary depression and anxiety affects many, but not all. People with moderate to severe CFS often develop the same broad range of additional symptoms as noted above for FMS.
Many people with severe Fibromyalgia qualify for the diagnosis of both Fibromyalgia Syndrome (FMS) and also Chronic Fatigue Syndrome (CFS).
Fibromyalgia Doctors: Even a few years ago many physicians believed that Fibromyalgia Syndrome (FMS) was mainly a disguised form of psychological distress or depression. While a few hold-outs remain, most physicians and official groups such as the American College of Rheumatology now agree that Fibromyalgia Syndrome (FMS) is both real and mainly physical.
For Fibromyalgia the central problem appears to be not just in the muscles, but an increased sensitivity to pain- within the pain signaling pathways of the brain and the spinal cord. The central nervous system’s physical anatomy and biochemistry both transform in measurable ways that act to amplify the intensity of stimuli that cause pain. Think of pain pathways as a radio receiving signals. In Fibromyalgia, the knob controlling volume is always turned way up. The technical name scientists give this is neural sensitization.
Our New Jersey offices have worked with more than 1000 persons who have Fibromyalgia Syndrome (FMS)
Richard Podell, M.D., medical director has lectured on Fibromyalgia Syndrome to professional and consumer support groups. He has written for magazines and journals, including Fibromyalgia Network. A clinical professor at Robert Wood Johnson MedicalSchool, Dr. Podell heads one of 10 research teams for a Food and Drug Administration approved study of Ampligen, an experimental treatment for people with Chronic Fatigue Syndrome, many of whom also have Fibromyalgia.
The New Jersey Chronic Fatigue Syndrome Association awarded Dr. Podell their 2002 Achievement Award. He serves on the expert committee of the New Jersey Academy of Medicine and the New Jersey State Health Department. Dr. Podell served as co-author of a text for physicians on the diagnosis and treatment of Chronic Fatigue Syndrome that also focused on Fibromyalgia. Dr. Podell has served as a medical expert on severe Fibromyalgia Syndrome and on Fibromyalgia disability in both New Jersey State and Federal Courts.
Wendy King, Ph. D., R.N., APN, BC, an advanced practice nurse, is director of research, and also director of behavioral medicine. Dr. King is a clinical associate professor at the Robert Wood Johnson School of Allied Health. Dr. King is the administrative director of our research program, including the Food and Drug Administration approved Phase III trials of the drug Ampligen to treat Chronic Fatigue Syndrome.
Philosophy: We seek to combine the best of standard drug therapies with holistic support for the body’s natural healing systems. Drug treatments for Fibromyalgia can be very useful, but often they only partly control symptoms. Therefore, we also seek to understand and improve the body’s natural healing systems. We work to support the healing systems and to remove obstacles that block their natural ability to heal. This holistic or complementary alternative medicine perspective has a formal name: Functional Medicine.
One conventional view is that in health and disease the mind and body function separately. In contrast, functional medicine believes and current science shows that, in reality, the opposite is true. The multiple systems of mind and body interact in a complex web of biochemical, hormonal and metabolic relationships. In many important ways even such distant organs as the brain, endocrine glands, immune system, gut, and liver interact together as if they were one.
Fibromyalgia doctors using a Functional Medicine approach act to strengthen the body's healing systems. Improving function for any part of the healing web, feeds through to strengthen other parts of the system. This helps the well-being of the person as a whole.
Dozens of common ailments can cause muscle pain and fatigue. Therefore, a main focus of our first long new-patient visit is to be sure that we haven’t missed potential alternative causes of your muscle pain and related symptoms. That’s why we ask you to complete our very detailed case history questionnaire and send us copies of prior lab reports.
For Fibromyalgia, most Fibromyalgia doctors recommend the following medicines to help reduce pain:
Tricyclic antidepressants (e.g. Elavil/amitryptiline, Pamelor/nortriptyline)
Desyrel/trazadone, a different form of anti-depressant
Serotonin Re-uptake Inhibitor Antidepressants (e.g. Prozac)
Sleeping Medicines (Ambien/zolpidem, Klonopin/clonazepam)
Muscle relaxants (Flexeril/cyclobenzaprine)
Various pain medicines
Each of these Fibromyalgia medicines helps roughly 50% of people with the degree of benefit differing very much for each individual.
PLEASE NOTE: Some of the medicines recommended for Fibromyalgia (FMS) are also used as treatments for depression. Be assured though—Fibromyalgia doctors are not “sneaking in” therapy for depression. These medicines work very differently for Fibromyalgia, often much faster and at lower doses, than when they are used for depression. They often help Fibromyalgia whether or not the person with FMS is also depressed.
Fibromyalgia doctors also find useful two very simple but powerful natural therapies:
1) an appropriate program of slowly increasing exercise
2) a specialized form of practical psychology that emphasizes day-to-day coping skills rather than “in depth” psychology. This is called cognitive behavioral therapy (CBT).
We discuss both exercise and psychological adjuncts below in the sectionFunctional Medicine Applications.
Each of the following innovative medicines helps perhaps a proportion of people with moderate or severe FMS. The degree of benefit varies from mild to major.
Neurontin (gabapentin) is an anti-seizure medicine. Neurontin stimulates central nervous system receptors for a neurotransmitter known as gamma amino butryic acid (GABA). GABA modulates neural pain pathways. Many people feel “spacey” or tired with Neurontin, but many others tolerate it well. Neurontin also helps migraine and painful diabetic neuropathy. Periodic lab checks are desirable. Gabatril (tiagabine), is similar to Neurontin.
Zofran (odansetron) is usually used to treat the symptom of nausea caused by cancer chemotherapy. Zofran might also block the release of substance P, a pro-inflammatory neural hormone. Zofran is very expensive--if you don’t have a prescription plan. Constipation can be a major, even a dangerous problem. This must be watched carefully.
Zanaflex (tizanidine) is usually used to treat muscle spasticity in multiple sclerosis. Zanaflex modulates pain through certain sympathetic nervous system receptors. Zanaflex can be sedating and lower blood pressure. However, most people tolerate it. (Zanaflex is also fairly good for treating menopausal hot flashes.)
Baclofen also treats muscle spasticitity in multiple sclerosis. Baclofen stimulates GABA receptors but in different ways than does Neurontin. Again, sedation can be a problem.
Ketamine is an intravenous anesthetic. However, Ketamine also blocks NMDA receptors. NMDA receptors have a major role in the central nervous system’s pain pathways. European studies show that oral Ketamine reduced FMS pain for about half the people studied. Unfortunately, Ketamine is also a tricky and a potentially toxic drug. It’s abused “on the street” under the name of “Special K.” It can cause panic attacks, and in high doses, heart rhythm abnormalities. Ketamine can also be prepared as a gel, with acceptable safety. The gel is not nearly as strong as the oral or intravenous forms, but most people find it a useful adjunct.
Other potentially attractive, but less well-studied Fibromyalgia medicines include: Dextromethorpphan, Amantadine, Memantine Zyprexa, Effexor, low-dose Naltrexone and Guaifenesin.
Guaifenesin is a safe, mucus thinning agent found in Humibid, Entex and other medicines for respiratory infections. Dr. R. Paul St. Amand claims wonderful results using Guiafenesin to treat FMS. (What Your Doctor May Not Tell You About Fibromyalgia, Warner Books, 1999.) We have been skeptical, but recent testimonials are leading us to take a second look. For information on Guaifenesin and Fibromyalgia please see www.guiadoc.com.
GHB may have powerful benefits for many with fibromyalgia. A recent double blind study suggests that an “orphan” drug, GHB, might a most promising treatment. Click here for Information About GHB and Fibromyalgia.
People who have severe Fibromyalgia Syndrome (FMS) may do better if they completely avoid both MSG (monosodium glutamate) and also Nutrasweet (aspartame), the artificial sweetener. Both glutamate (in MSG) and the amino acid, aspartic acid (in aspartame) stimulate pain augmenting receptors within the spinal cord. These are called NMDA receptors. Some individuals with Fibromyalgia improve very much on a Fibromyalgia diet that avoids MSG and aspartame.
In addition to these restrictions, we find that many people with chronic illness tend to do better with sensible diet therapy. Aim for five plus servings daily of multi-colored fruits and vegetables. (Nutrition science defines one “serving” as one half a cup.) Eat modest-size meals without excess fats, sugars or simple carbohydrates. Perhaps, easier said than done, but many patients have reported benefit from just a few weeks on this “Fibromyalgia diet”.
Occasionally, people with Fibromyalgia improve with the elimination of foods to which they personally are sensitive. Wheat/gluten, milk, yeast, and sugar are occasionally culprits.
Test for essential fatty acid deficiencies. Supplement appropriately.
Evaluate the methylation/SAMe/folic acid/vitamin B 12 pathways. These are necessary for effective brain and liver function
Which vitamins and minerals are sub-optimal? Supplement as needed.
Improve the mitochondria’s ability to make ATP energy molecules. Options include: Glutathione, Lipoic Acid, Enada (NADH) phosphatidyl serine, L-Carnitine, Acetyl-L-Carnitine, CDP-choline, Coenzyme Q, “adaptogenic” herbs
Assess digestion, and the gut’s bacterial and yeast balance.
Measure the strengths and weaknesses of liver detoxification pathways.
Biomechanical (body work) therapies: The following body work therapies can help Fibromyalgia-- but only if done by a professional who understands the special vulnerabilities that are typical of FMS/CFS. Done too vigorously, these therapies can make you worse. Effective therapeutic massage and physical therapy techniques for FMS muscle pain go by several names: Structural Integration, Janet Travell, M.D.-style Manual Trigger Point Therapy, Myofascial Release and Deep Connective Tissue Therapy.
Trigger point injections can also help, as can chiropractic adjustment, and a podiatrist’s evaluation of legs, feet and gait. Occasionally acupuncture and laser therapies are useful.
Energy Therapies: Reiki and magnets are sometimes reported as helpful. Currently, we are studying a system of extremely low dose electrical stimulation to calm down the pain pathways in the spine and the brain.
One school of thought claims that many Fibromyalgia patients have unrecognized infections with atypical bacteria or viruses, including mycoplasma, chlamydia, Lyme disease and HHV-6. They claim beneficial results from long-term antibiotics.
Several studies support these claims, but none were large or well-designed enough to put skepticism to rest. We work with Medical Diagnostic Laboratory, one of the nation’s leaders in this area. We continue to follow this research closely.
One school of thought claims that many Fibromyalgia patients have unrecognized infections with atypical bacteria or viruses, including mycoplasma, chlamydia, Lyme disease and HHV-6. They claim beneficial results from long-term antibiotics. Several studies support these claims, but none were large or well-designed enough to put skepticism to rest. We work with Medical Diagnostic Laboratory, one of the nation's leaders in this area. We continue to follow this research closely. Breakthrough research on HHV-6 virus as a cause of chronic fatigue syndrome was reported recently. Tranfer factor, a cow's milk colostrum especially immunized to produce antibodies against HHV-6 was reported to help about two thirds of patients. This same approach, in theory, could also help fibromyalgia. Click here for Chronic Fartigue Syndrome, HHV-6 and transfer factor treatment.
Two prominent neurosurgeons claim that one fairly common cause of Fibromyalgia is pressure against the brain or the spine due to narrowing of the skull or spinal canal. They have reported successful reduction of pain by operating to relieve this pressure. However, most specialists remain skeptical. We’ve spoken to these surgeons, and are impressed by their sincerity. We have not had any patients who have chosen this operation so we don’t yet have a first-hand impression.
We have arranged for a neuro-radiology group in nearby Chatham, NJ to obtain the special views of a C.T. scan that these neuro-surgeons require.
Does hypothyroidism cause fibromyalgia?
Dr. Robert Lowe has proposed that a hypothyroid or low metabolism state is a major causes of fibromyalgia. Dr. Lowe believes that low thyroid can be a real problem even when standard thyroid hormone tests are normal. Dr. Lowe recommends that we consider treating fibromyalgia with the T3 form of thyroid hormone, using natural Armour thyroid or synthetic T3 thyroid hormone, Cytomel.
Dr. Lowe’s website especially focuses on fibromyalgia and its relation to low thyroid. It’s also a stimulating read with regard to a broad range of thyroid related health problems. This is an excellent site.
Click here for our general discussion of thyroid disorders including the thyroid’s effects on fibromyalgia, chronic fatigue syndrome, depression, overweight and other illness.
Fibromyalgia Network: One of the best information sources for patients. Combines up to date coverage of scientific and clinical research in language that patients can understand and appreciate.
Dr. Devin Starlyanyl's Fibromyalgia Site: Dr. Starlyanyl, a physician, has fibromyalgia herself and has written a best-selling book for patients. Her website is one of the largest and best.
Dr. John Lowe's Fibromyalgia Website: One of the leading advocates of the use of T3 thyroid hormone treatments for Fibromyalgia.
Guaifenesin and Fibromyalgia Dr. R. Paul St. Amand focuses on Guaifenesin, a mucus thinning medicine, as a key treatment for Fibromyalgia,
Green Turtle Bay Vitamin Company: Produces an excellent
multi-vitamin (Power-Vites), a complex of natural sleep supports (Power-Sleep), and other high quality supplements.
The HHV-6 Virus Specific Transfer Factor Products:
Dr. Joseph Brewer recently reported a double blind study showing benefit to this specific form of transfer factor for people with chronic fatigue syndrome who had prior evidence of herpes virus-6 infection. that showed substantial benefit. If transfer factor truly works for CFS, then it would probably also be helpful for many persons with fibromyalgia. Two reliable sources of the specific transfer factor. products are:
Immunity Today, 513 A N Mur-Len, Okathe, KS, 66062, tel 913-780-2317.
Pro Health, Inc, 2040 Alameda Padre Serra, Ste.101, Santa Barbara, CA, 93103, tel: 805-564-3064 ext. 236. www.ProHealthNetwork.com. Contact person