By Rosalie Devonshire, M.S.W., and Julie Kelly, M.S., R.N.
The following is a chapter from “Taking Charge of Fibromyalgia: A Self-Management Program for Your Fibromyalgia Syndrome.” Reprinted with permission.
Some physicians have been using treatments not yet thoroughly researched
Trying one of these treatment should be done with extreme caution
These physicians use a variety of tests, medications, vitamins, and hormones
Read more about their complete treatment protocols either in this book [see end of article for ordering information], their own books, and otherwise in CFS/FM newsletters and the CFIDS Chronicle
Share this information with your physician
Contact doctors personally for more information
There are some physicians who have been treating Fibromyalgia Syndrome (FMS) patients by using therapies which could be described as “experimental.” These treatments have not been subjected to scientific study at this time (although some are in the process of being researched and others will be studied in the future). We would like to share with you a few of the more widely recognized physicians performing this type of pioneering work, because we feel that this information should be freely accessible to all FMS sufferers. If you choose to try some of these therapies, you might have to find a physician in your area willing to accommodate you. Remember that trying a novel therapy should be done with extreme caution.
Dr. Jacob Teitelbaum is one physician performing pioneering work. He suffered from CFIDS and FMS [which he claims to have overcome] and knows firsthand how it affects someone. Dr. Teitelbaum uses various laboratory diagnostic tests to assess a number of problems he feels contribute to FMS and CFIDS. After he takes a complete history, he may treat you with some or all of the following: synthroid or armour thyroid to boost a low thyroid level, cortef for an adrenal insufficiency, DHEA to boost DHEA levels, medications to treat neurally mediated hypotension which causes dizziness, oxytocin (a female hormone), estrogen and progesterone, various vitamins, anti-depressants, herbals for sleep aids, anti-yeast treatments, stool parasite therapies, homeopathics and various other medications such as nitroglycerin, naphazoline hydrochloride (eye drops), calcium channel blockers, and others.
Dr. Teitelbaum’s treatment program has benefited many patients and takes into account the fact that FMS symptoms may be caused by a combination of factors. You may want to purchase his book (From Fatigued to Fantastic) and share it with your physician, who might be interested in trying some of these treatments.
Dr. Jay Goldstein [retired in 2003] is another pioneering physician and researcher. He has treated FMS and CFIDS patients for over 15 years and has written a book geared for the physician called Betrayal By the Brain: The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Related Neural Network Disorders. He also offers a companion book written by a patient for patients, which is called A Companion Volume to Dr. Jay A. Goldstein’s Betrayal By the Brain, by Katie Courmel. His treatment protocol differs substantially from those who use medications to alleviate only specific symptoms, such as low serotonin levels. He believes FMS and CFIDS patients suffer from problems in the way their brains process sensory input from noise, lights, odors, pain, food, medications and chemicals.
By a complex mechanism involving various brain chemicals, our brain interprets information it receives from our environment, filters out appropriate and inappropriate information, and tells our body how to handle the input. Dr. Goldstein feels our brains are misinterpreting the information, resulting in an amplification of pain signals, odors, and other sensations. Just going to the local mall bombards our senses with so much stimuli it can prove exhausting. This “wears” out the brain and can cause the cognitive problems many patients experience.
Dr. Goldstein believes FMS and CFIDS patients have a genetic predisposition for developing these syndromes. Developmental issues, in which one feels unsafe for a period of time causing a hypervigilant attitude, can change the way the brain responds to stimulus; exposure to viruses, severe emotional stress and exposure to environmental stressors, are all factors in the development of these syndromes. Some people may be particularly strong in their genetic predisposition and will develop these syndromes no matter what their stressors may be, while others need a variety of these stressors to occur before they will develop FMS or CFIDS.
Dr. Goldstein treated his patients in a very different manner than other physicians. [Editor’s note: To read more about Dr. Goldstein’s treatment protocol, visit URL] You will note that he used a variety of medications. Once again, your own physician might be interested in trying his treatment protocol.
Oxytocin – DHEA – Nitroglycerin
Another therapy that has proven beneficial to some patients in conjunction with other treatments described is that used by Jorge Flechas, M.D., Jay Goldstein, M.D., and Jacob Teitelbaum, M.D. We have already mentioned that DHEA levels are found to be low in FMS patients. By carefully listening to his patients’ complaints, Dr. Flechas decided that the hormone oxytocin, along with DHEA supplementation, might help alleviate some of his patients’ symptoms.
He first runs a blood test to determine baseline DHEA levels, then adds supplements to bring levels up to what they should be naturally around age 30 (150-200 mcg/dl); 25-30 mg of DHEA is recommended, either in capsule form or cream. Dosages need to be determined by a physician, as DHEA can have side effects and long-term usage has not yet been determined. Checking estrogen and testosterone levels is also recommended.
Once your DHEA is up to optimal levels, Dr. Flechas tries his patients on a 10 ml injection of oxytocin. Oftentimes patients will notice a flushed feeling in their hands or face immediately after the injection, which may or may not last for more than a few minutes. Positive effects will take approximately two weeks. Dr. Flechas recommends taking supplements of choline and inositol to increase the effectiveness of the oxytocin. Nitroglycerin is another medication he adds to his regime to enhance pain relief. Patients who benefit from this treatment often have cold hands and feet and are pale. Daily injections of oxytocin can be given, or there is a capsule available from pharmacies. Dr. Goldstein believes injections are more effective.
Not much has been written about oxytocin in the medical literature, but it is known to have a role in inducing labor in pregnant women, facilitating the let-down response in lactating women, and regulating blood circulation in the small vessels of the body. This hormone works within a complex network of other chemicals in our bodies that have been found to be dysregulated, such as neuropeptide Y, corticotrophin releasing hormone (CRG), thyroid hormone, estrogen DHEA, and others.
Two side effects are weight gain and water retention. No studies have been performed on this hormone treatment as of yet, but will hopefully be forthcoming.
Atenol – Florinef – Increase Salt and Water Intake for Neurally Mediated Hypotension
If you are troubled by dizziness and/or fainting spells, you might want to speak to your physician about the possibility of having a cardiologist perform a tilt-table test. During the test you are strapped to a table and turned 70 degrees so that your legs are close to the floor but do not touch it. Normally, when you get up from a sitting position your brain signals your blood pressure to perform properly when your feet touch the ground. Researchers have found that CFIDS patients and some FMS patients have a dysfunction in the regulation of this system and their blood pressure drops significantly, causing improper blood flow to the brain. This dysfunction can lead to feelings of fatigue and other symptoms associated with CFIDS/FMS.
These tests were originally performed by Johns Hopkins University researchers and replicated by Daniel Clauw, M.D. A natural treatment for this problem consists of increasing salt intake and drinking lots of water. Some physicians prescribe atenolol (Tenormin), a beta blocker, or Florinef (fludrocortisone), an adrenal steroid. These drugs do have side effects which your physician should make you aware of.
You could have this condition even if you do not have low blood pressure or a history of fainting or dizziness. This treatment is well worth pursuing and might be a good addition to your overall program.
One study using intravenous morphine, lidocaine and ketamine showed that ketamine proved to be the most effective in reducing pain levels. Morphine, an opioid, did not help at all in this study; lidocaine, an anesthetic used in trigger point injections, was somewhat helpful; and ketamine, an NMDA pain receptor antagonist, decreased pain and had a longer lasting effect than the others. With its promising results, this study could help lead researchers to other drugs which affect the NMDA receptors and possibly help alleviate pain for FMS patients.
Some physicians and holistic practitioners believe there is an underlying yeast problem contributing to FMS/CFIDS symptoms. The most common yeast, Candida albicans, is thought to be the culprit. Finding a physician to treat yeast problems can be difficult, however. Many holistic doctors treat for Candida, as do many nutritionists and Chinese medicine doctors. Nutritionists cannot prescribe anti-fungal medications but will use various herbs, vitamin supplements and changes in diet to help alleviate yeast overgrowth. Some physicians, such as Jacob Teitelbaum, M.D., use both to rid patients of yeast overgrowth.
Our bodies naturally have yeast living in harmony with friendly bacteria inside our bodies. Yeast are there to help our bodies in various ways, but sometimes the yeast overpower the “good bacteria” and cause a yeast invasion. This can occur after repeated courses of antibiotics. Yeast also thrive on sugar and yeast-laden foods such as cheese, bread, and wine. Giving up sugar and all sugar-containing products, including corn syrup, jelly and honey, is one recommendation for controlling a Candida overgrowth.
Some practitioners recommend giving up all yeast-containing foods such as cheese, beer, wine, and bread. Others feel that giving up sugar alone is sufficient. Your body will most likely go through a withdrawal period in the first seven to ten days of a diet like this; you may even feel worse as the yeast die off because their source of “food” has been removed. Many people are amazed how their craving for sugar decreases if they can abstain from it for just ten days. Believe it or not, you may not even want sugar anymore! It is also recommended to replace the friendly bacteria that have been lost, by taking acidophilus supplements or eating plain yogurt (without sugar) which contains live acidophilus cultures.
It is very important to read labels on all foods you buy if you choose to eliminate sugar. Many foods we buy today include sugar disguised as high fructose corn syrup, dextrose, and maltose. Many cereals are loaded with sugar, as are some breads. Shopping in a health food store or buying bread from a bread maker who only uses stone ground grains and adds no sugars is advised. Some grocery store chains are offering more sugar-free selections as consumers are becoming more health conscious.
Remember, just because a label states “all natural” or “no artificial ingredients” does not mean the product hasn’t been sweetened with fruit juices, which you may need to avoid, too. Because fruits and fruit juices contain naturally occurring sugars, some health practitioners recommend giving them up for a time as well. You may need six to twelve months on this diet to take care of the yeast overgrowth. That may sound like a long time, but it can be well worth the trouble if you feel better in the future.
Laboratory tests for detecting yeast overgrowth are not thought to be conclusive, so many practitioners use symptoms and questionnaires to determine whether or not the problems you are having are yeast related. Your physician can prescribe anti-fungal medications for you (commonly used to treat fungal overgrowth) including Diflucan, Sporanex, and Nystatin.
The late William Crook, M.D., has written two books on yeast problems and treatments. [Editor’s note: For those patients who decide against using prescription drugs or for whom such medications do not work or are not tolerated – a common problem among CFIDS and FMS patients - alternative treatment methods to consider for yeast overgrowth include nutritional support products like Yeast Rx.]
Decompression Surgery of Craniovertebral Stenosis
Michael J. Rosner, M.D., a neurosurgeon at Park Ridge Hospital in Fletcher, North Carolina, has found that some patients with FMS or CFIDS also have cervical spinal stenosis and/or Chiari malformation. These two neurological abnormalities cause cervical cord and/or nerve root compression. Symptoms associated with these abnormalities are similar to FMS/CFIDS symptoms and may include: headaches, neck pain, upper and lower extremity pain, burning, a feeling of tightness, numbness, clumsy hands, stiffness, spasticity, atrophy, flushing, sweating, urinary frequency, irritable bowel, burning feet, dizziness, sore throats, blurred vision and cognitive problems.
Spinal cord compression can occur from a congenital cervical stenosis, from an accident where the neck is hyperextended, after surgery, or after a viral infection. Abnormal findings in a neurological exam may indicate this condition; an MRI is needed to confirm it. Dr. Rosner states that numbness, weakness and imbalance are particularly important symptoms to note in evaluating this condition.
Dr. Rosner has found that a number of patients with FMS or CFIDS who are also diagnosed with cervical spinal stenosis and/or Chiari malformation respond favorably to decompression surgery. The surgical procedures to correct these abnormalities relieve the pressure from the spinal cord, improving the flow of spinal fluid. Over 50% of his patients reported that many of their symptoms improved from these surgical procedures and included the following:
Headache: 88%; sore throat: 72%; joint pain: 82%; muscle pain: 80%; grip: 75%; memory: 62%; bowel: 57%; bladder: 70%; balance: 78%.
Conservative treatment for this condition consists of limiting neck hyperextension and flexion by wearing a cervical collar. Supporting your neck during the night with proper cervical pillows may also be helpful, along with physical therapy and improving one’s posture.
This is yet another potential problem that may be contributing to some patients’ symptoms. A careful neurological examination and MRI may be indicated in a greater number of people with FMS so that a potentially treatable neurological abnormality is not overlooked. You may want to discuss this possibility with your physician. The National Fibromyalgia Research Association is a resource for additional information: (503) 588-1411.
Biofeedback and EEG Treatment
Stuart Donaldson, Ph.D., of Calgary, Alberta, Canada, has been treating patients with a combination of biofeedback and EEG brain wave therapy, which uses no drugs and has shown to be helpful in reducing symptoms.
Balancing Dopamine and Serotonin
Daniel G. Malone, M.D., a rheumatologist at the University of Wisconsin, has been treating FMS patients with a combination of dopaminergic and serotonergic drugs including L-dopa, 5-HTP, Fenfluramine, Pemoline and phentermine. He found statistical improvement in 76 patients out of 122 using this protocol. Unfortunately, two of the medications he had been using, Fenfluramine and phentermine, have been withdrawn from the market because of serious heart-valve complications found in some patients who were taking these medications for weight loss.
We [the authors] believe these novel treatments are exciting to report because they add to the possibilities of treatments for improving your symptoms. Some of your physicians may not know about these therapies, so it might be up to you to educate them. Dispensing this information to all physicians involved in FMS and CFIDS patients is important in providing helpful treatment. Because these treatments are so new, it is not known whether they are beneficial when prescribed singly of in conjunction with other treatments.
These treatments have not been subjected to [rigorous clinical] research as of yet, and using them could be risky for you. It might be something you could look into, however, if the other, more researched treatments available [as described in this book] have been tried and you still do not feel better. Many physicians feel a multi-disciplinary treatment approach is necessary to control FMS, which means using all, many, or some of the treatment options described in this book. At this time, we have more treatment options to choose from than we did a few years ago.
The foregoing excerpt was reprinted with permission from Rosalie Devonshire from the book, “Taking Charge of Fibromyalgia” which can be purchased by clicking on the following link: https://www.immunesupport.com/shop/books.cfm
© Rosalie Devonshire, M.S.W., and Julie Kelly, M.S., R.N. All rights reserved.