OPEN LETTER TO FIBROMYALGIA PATIENTS
On Fibromyalgia Awareness Day, May 12, 1999
SCIENCE AND FIBROMYALGIA
A Review of Recent Research
In February of this year, an article in a scientific journal announced the discovery that a new immune system antibody had been found to be associated with many cases of fibromyalgia. This marked the first time that laboratory evidence of an immunological process involving fibromyalgia had ever been detected, and it is one of the most exciting developments in recent years concerning a disorder that may affect as many as 15% to 20% of adult women, and many men, in the United States.
What Is Fibromyalgia?
Fibromyalgia syndrome, or FM, is a chronic pain and fatigue disorder. Together with widespread pain and "tender points" in various areas of the body, signs and symptoms of FM include fatigue, sleep disorder, morning stiffness, headache, memory loss, disjointed thought processes, irritable bowel syndrome, and other symptoms. Millions of individuals, most of whom are women, in many countries throughout the world have been diagnosed with FM, and millions more have fibromyalgia-like symptoms that parallel but do not precisely meet the standards needed to be given a formal diagnosis of FM.
The direct medical costs of fibromyalgia in the United States alone have been estimated by one expert to be more than $16 billion per year. A large portion of this cost falls directly upon the patients.
The cause or causes of fibromyalgia are not currently known, but researchers have suggested that trauma, infection, and exposure to environmental factors may all trigger the development of this debilitating illness. Research has recently shown that there is a hereditary element in FM, and it is possible that susceptible individuals develop the disorder in response to one or more of these triggers.
In the United States, some 3% to 5% of adult women meet the strict diagnostic research criteria of the American College of Rheumatology for fibromyalgia, but as many as 15% to 20% of adult women may actually have fibromyalgia-like symptoms. For example, the strict diagnostic criteria for FM include tenderness to the touch in at least eleven of eighteen specific musculoskeletal points on the body, so tenderness in only ten of these points would mean that the patient did not meet the strict criteria for receiving a diagnosis of FM.
Why Are Antibodies Important?
Fibromyalgia has always been difficult to diagnose, in part because it involves many different symptoms and seems to have multiple causes. FM symptomatology includes pain that changes and migrates, a characteristic of pain that doesn't fit neatly into every medical textbook. And there has in the past been no confirming laboratory test for FM. For these and other reasons, not everyone in the health care system has felt that FM is a "real" disorder that involves a unique physiological process.
Many physicians practicing today think that fibromyalgia is a product of aging, the result of a psychological problem, or a part of some other process, and they do not believe that FM is a distinct disorder. Because of this, fibromyalgia patients frequently find they need to prove, to themselves or to others, that they do have a "real" disorder and that they are not just being whiners, malingerers, or slackers. This problem extends from the home and family into the workplace, and it often becomes an issue in disability insurance claims, where the absence of objective proof of illness can be a major barrier to claim settlement.
The discovery of the new antibodies in many FM patients is the first hard evidence that an immunological response is under way in these patients. FM patients can't "imagine" antibodies into existence, and the presence of the new antibodies does not correlate with the existence of other diseases, so the antibodies in the FM patients' blood serve as an objective laboratory marker for fibromyalgia and demonstrate that FM is a "real" disorder that involves a physiological disease process.
Together with the medical benefits that can be expected to result from this discovery, there may be other practical applications for FM patients. One attorney who is experienced in handling fibromyalgia disability cases believes that disability insurers will have to look at FM much differently from the way they have in the past. "Now that this laboratory test is available, the absence of objective evidence can no longer be routinely cited as a reason for disallowing a claim," he said.
What Are these Antibodies and What Do They Mean?
Researchers don't yet understand the disease process itself, but they can indeed detect the antibodies associated with it. Called anti-polymer antibodies, they were discovered several years ago by scientists studying silicone breast implant patients at Tulane University Medical Center in New Orleans. The scientists were surprised to find that blood samples from a large number of breast implant patients who were ill with fibromyalgia-like symptoms contained what seemed to be a new antibody. After carefully checking and rechecking their results they found that the antibody was in fact previously unknown, and they decided to call it an anti-polymer antibody. They named the test that detects the antibody the Anti-Polymer Antibody Assay, or APA Assay. They published their findings in The Lancet in 1997, and Tulane later obtained several patents on the APA Assay.
Tulane licensed the APA Assay to Autoimmune Technologies LLC, a small New Orleans biomedical research and development company. Autoimmune Technologies continued to do research into anti-polymer antibodies and began a study of FM patients who did not have breast implants or other implants of any kind. The researchers found that a large percentage of FM patients had these antibodies and found that the presence of anti-polymer antibodies correlated with the severity of the patients' FM symptoms. The antibodies were found in only small numbers of patients with other diseases, such as lupus, who did not also have FM. As a result, these researchers found that the APA Assay served as a blood test for fibromyalgia. Their work was published in the February 1999 issue of The Journal of Rheumatology.
The researchers also found that anti-polymer antibodies were not present in all FM patients. This finding supports the concept that there may be multiple triggers of fibromyalgia, and the researchers surmise that anti-polymer antibodies are associated with one particular trigger of FM. They are now conducting additional research to test that theory as well as to further explain the disease process.
If You Don't Have the Antibodies, Does that Mean You Don't Have FM?
No, not having the antibodies doesn't mean that a patient doesn't have fibromyalgia. In the published studies, anti-polymer antibodies were found in fewer than 70% of patients with the most severe FM symptoms and in about 50% of patients who had ever received a diagnosis of fibromyalgia.
There is a saying that medical testing is like prospecting for gold: finding something proves that it is there, but not finding something doesn't prove that it isn't there. Not finding anti-polymer antibodies might mean that a patient is not currently producing the antibodies, or it might mean that the patient's symptoms are associated with an FM trigger that is not related to the antibodies, or it might mean something else. It does NOT mean that the patient does not have FM.
Another example of this is the test for rheumatoid arthritis that looks for a protein called Rheumatoid Factor, or RF, which is associated with that disorder. About 20% of rheumatoid arthritis patients test negative for RF, but the negative test results do not mean that those patients don't have rheumatoid arthritis.
Research in the United States
The APA Assay detects the presence of anti-polymer antibodies, and Autoimmune Technologies is now designing the research protocols to use in asking the U.S. Food and Drug Administration to approve diagnostic use of that information. The company is continuing its work to define the disease process associated with anti-polymer antibodies and to demonstrate which FM trigger may be associated with the antibodies. The company has also initiated studies to determine whether certain drugs are working better in patients who test positive on the APA Assay than on patients who do not.
Research in Europe
After the publication of the article in The Lancet in 1997, scientists in The Netherlands approached Autoimmune Technologies and expressed an interest in conducting research there using the APA Assay. Dutch scientists subsequently found the APA Assay to be reproducible and useful for evaluating the presence of anti-polymer antibodies in human serum, and the APA Assay was introduced into the National Institute of Public Health and the Environment, or RIVM, in 1998. Antibody research using the APA Assay is now under way in The Netherlands.
Is the Test Available Yet?
At present, any physician in the U.S. or any other country may order the APA Assay from Autoimmune Technologies to determine if a patient's blood contains anti-polymer antibodies, although it remains the responsibility of the physician ordering the APA Assay to decide how to make use of the results of the test in his or her investigation into the patient's condition. In the United States, a combination of U.S. Food and Drug Administration regulations and patent laws prohibit any other labs from conducting the APA Assay until it has been put into a portable kit format and the diagnostic value of the kit and the information that the APA Assay conveys about anti-polymer antibodies has been approved by the FDA. Such a test kit is now being developed by Autoimmune Technologies. In most European and other countries the physicians make their own determinations of the diagnostic values of such tests, and the test kit will be made available in those countries as soon as it is ready.
Information on the Web
The National Fibromyalgia Awareness Campaign maintains a Web site at http://members.xoom.com/nfac/home.htm that provides a good starting point for exploring the many excellent fibromyalgia sites and related medical sites on the Internet. The Web address of Autoimmune Technologies is www.autoimmune.com.
To Fibromyalgia Patients
The scientists and physicians involved in this research all hope that their work will eventually lead to better treatments for, and ultimately to a cure for, fibromyalgia. Today, on Fibromyalgia Awareness Day, they offer their thoughts to all of the patients who are living with FM and wish them well.
Low-Dose Hydrocortisone for Chronic Fatigue Syndrome
Letters - May 26, 1999
To the Editor: Dr McKenzie and colleagues suggest that hydrocortisone, despite its effectiveness against chronic fatigue syndrome (CFS), should not be used as a prolonged treatment for CFS because they found that "cautious hormonal supplementation" consisting of "low-dose" hydrocortisone caused a significant degree of adrenal suppression. Such suppression, however, may simply indicate that the dosage of hydrocortisone was neither cautiously low nor suitable for CFS patients. Hydrocortisone in dosages greater than 22 mg/d may harm even subjects with bilateral adrenalectomies, whose adrenal insufficiency is axiomatically absolute. Therefore, the 25- to 35-mg/d hydrocortisone dosage administered by McKenzie et al clearly represents an inappropriately high dosage for CFS patients, whose adrenal insufficiency is mild, since those authors report that "CFS patients excreted, on average, about 30% less cortisol in 24-hour urine collections than healthy, matched controls."
During the twice-daily regimen of glucocorticoid replacement therapy, the second daily dose is usually administered in the evening. Therefore, it is unclear why McKenzie and colleagues administered the second daily dose of hydrocortisone at about 2 PM. This is even more surprising if we consider that they cite a study in which some authors of their group reported that basal cortisol levels of CFS patients were significantly reduced in the evening. In view of the many undesirable consequences of overtreatment with glucocorticoids, it is likely that 10 to 15 mg/d of hydrocortisone, split as 5 to 10 mg at 8 AM and 5 mg at 6 PM, would have provided greater benefit for McKenzie and coworkers' subjects, without producing adrenal suppression.
McKenzie and colleagues state that "mere supplementation of cortisol is not sufficient" in the treatment of CFS and propose future pharmacological options. Surprisingly, however, they fail to mention an available option I proposed 3 years ago and appears promising, namely, hydrocortisone plus fludrocortisone acetate. This mineralocorticoid, if administered properly, appears to improve CFS symptoms substantially. Scott and colleagues support the view that hydrocortisone plus fludrocortisone may benefit CFS patients, writing that "replacement therapy may more appropriately involve not only glucocorticoid, but mineralocorticoid supplements also."
The rationale for using both hydrocortisone and fludrocortisone in the treatment of CFS lies primarily in the similarity between CFS and Addison disease, which shares 26 features with CFS and is routinely treated with hydrocortisone plus fludrocortisone. Hormonal supplementation, however, could hardly benefit patients meeting the "Oxford" criteria for CFS because they have hypercortisolism.
Riccardo Baschetti, MD Padua, Italy
1. McKenzie R, O'Fallon A, Dale J, et al. Low-dose hydrocortisone for treatment of chronic fatigue syndrome: a randomized controlled trial. JAMA. 1998;280:1061-1066.
2. Peacey SR, Guo C-Y, Robinson AM, et al. Glucocorticoid replacement therapy: are patients overtreated and does it matter? Clin Endocrinol. 1997;46:255-261.
3. Baschetti R. Chronic fatigue syndrome and neurally mediated hypotension. JAMA. 1996;275:359.
4. Baschetti R. Treatment for chronic fatigue syndrome. Arch Intern Med. 1998;158:2266.
5. Scott LV, Medbak S, Dinan TG. The low dose ACTH test in chronic fatigue syndrome and in health. Clin Endocrinol. 1998;48:733-737.
6. Baschetti R. Treating chronic fatigue with exercise: results are contradictory for patients meeting different diagnostic criteria. BMJ. 1998;317:600.
To the Editor: We congratulate Dr McKenzie and colleagues on their excellent study but would like to correct an important error and add data that may increase the clinical utility of their study.
Our previously published pilot study and the work of Jefferies[3,4] suggests that using low-dose hydrocortisone (4 mg of hydrocortisone 1 mg of prednisone) in CFS at dosages of 7.5 to 20 mg/d is safe and effective. These low dosages have not caused the adrenal suppression[3,4] seen with the higher dosages (25-35 mg/d) used by McKenzie et al. They are also less likely to aggravate the already severe disruption of deep sleep present in CFS patients, as was seen in the study by McKenzie et al (P=.02 vs placebo).
McKenzie and colleagues' reference to Jefferies' work incorrectly notes that "low-dose glucocorticoid replacement, defined as 20 to 40 mg [daily] of hydrocortisone...was felt to be safe." Jefferies notes that 40 mg of hydrocortisone per day is an optimum full-replacement dosage; it is not the safe or optimum dosage for treating CFS. In the cited reference, Jefferies noted that "in our clinics the term 'low-dose' has referred to oral doses of cortisone or hydrocortisone totaling 20 mg or less daily." Thus, McKenzie and colleagues' underlying premise that the 25- to 35-mg/d dosage they used was what Jefferies (and others) considered to be low dose was incorrect.
We recently completed a randomized, double-blind study that tested the effectiveness of treating patients with fibromyalgia and CFS for hypothalamic dysfunction in an integrated manner (unpublished data, 1998). This included treating suspected hormonal deficiencies (including low hydrocortisone) and the sleep disorder simultaneously. Using this protocol (described previously ) in 72 patients (of whom 64 completed the study) resulted in a significant improvement in active vs placebo group (P<.0001 for the fibromyalgia impact questionnaire, analog scores, and tender point index). Seven patients in our study who were treated with low-dose hydrocortisone (eg, 2.5-20 mg/d) were given prestudy and poststudy hydrocortisone stimulation tests. Adrenal suppression was not seen. Average hydrocortisone levels were 386, 635, and 717 nmol/L before and 469, 635, and 717 nmol/L after hydrocortisone treatment.
These and previous data[2-4] suggest that hydrocortisone dosages of 2.5 to 20 mg/d (combined with medications that improve deep sleep) are safe. In CFS and fibromyalgia patients who feel better when taking hydrocortisone these dosages may result in clinically important symptomatic improvement without causing adrenal suppression.
Jacob E. Teitelbaum, MD Barbara Bird, MT, CLS Alan Weiss, MD Laurie Gould Annapolis Research Center for Effective FMS/CFIDS Therapies Annapolis, Md
1. McKenzie R, O'Fallon A, Dale J, et al. Low-dose hydrocortisone for treatment of chronic fatigue syndrome: a randomized controlled trial. JAMA. 1998;280:1061-1066.
2. Teitelbaum J, Bird B. Effective treatment of severe chronic fatigue: a report of a series of 64 patients. J Musculoskeletal Pain. 1995;3:91-110.
3. Jefferies WM. Low-dosage glucocorticoid therapy: an appraisal of its safety and mode of action in clinical disorders, including rheumatoid arthritis. Arch Intern Med. 1967;119:265-278.
4. Jefferies WM. Safe Uses of Cortisol. 2nd ed. Springfield, Ill: Charles C Thomas Publisher; 1996.
To the Editor: Dr McKenzie and colleagues continued their thorough studies of hypothalamic-pituitary-adrenal axis dysregulation in patients with CFS and found that treatment with hydrocortisone mildly increased their global wellness scale. However, several comments are in order. First, glucocorticoids often induce a feeling of euphoria. Because a control population was not studied, the effect may not be specific to patients with CFS since healthy volunteers may also feel "better" when treated with hydrocortisone.
Second, at the dosage of hydrocortisone used, significant mineralocorticoid activity may have contributed to the beneficial effect of hydrocortisone. We estimate that this dosage of hydrocortisone supplies approximately 50% of the mineralocorticoid replacement. The authors did not provide information on weight or orthostatic blood pressure changes, which may support the role of the mineralocorticoid properties of hydrocortisone on the improvement of CFS patients. In an open-label trial, fludrocortisone, a synthetic mineralocorticoid, improved orthostasis and symptoms of fatigue. These findings, coupled with the high incidence of orthostasis in patients with CFS and the fact that delayed orthostasis often results in the symptom of fatigue, further support the notion that these patients have impaired mineralocorticoid activity.
Third, because of the heterogeneous nature of CFS, it may be important to select patients with mild adrenal insufficiency for hydrocortisone to be effective. McKenzie et al excluded patients who had an onset of illness over a period of 6 weeks. We suspect that patients with adrenal insufficiency (mineralocorticoid or glucocorticoid) would have an insidious onset of illness, while patients with an infectious cause would present with a more acute onset. Thus, the authors may have excluded the very patients who would likely benefit from treatment.
Finally, it is noteworthy that in this and other studies, most patients with CFS are white. One possibility for this low representation of ethnic patients is that white patients consume less salt than those of other ethnicities, such as African American, Asian, and Hispanic. Bou-Holaigah et al noted that 61% of patients with CFS in their study were following a self-imposed sodium-restricted diet. We hypothesize that adequate salt intake may compensate for mild mineralocorticoid insufficiency and reduce orthostasis. Just as the corticotropin-releasing hormone-corticotropin-cortisol axis of patients with CFS has been well studied, studying the renin-aldosterone axis in depth in CFS patients may uncover a subset of patients with mineralocorticoid insufficiency who would benefit from fludrocortisone or salt treatment.
Theodore C. Friedman, MD, PhD Abby Adesanya Cedars-Sinai Medical Center Los Angeles, Calif
Russell E. Poland, PhD Harbor-UCLA Medical Center Torrance, Calif
1. McKenzie R, O'Fallon A, Dale J, et al. Low-dose hydrocortisone for treatment of chronic fatigue syndrome: a randomized controlled trial. JAMA. 1998;280:1061-1066.
2. Murphy BE. Steroids and depression. J Steroid Biochem Mol Biol. 1991;38:537-559.
3. Bou-Holaigah I, Rowe PC, Kan J, Calkins H. The relationship between neurally mediated hypotension and the chronic fatigue syndrome. JAMA. 1995;274:961-967.
4. Streeten DHP. The nature of chronic fatigue. JAMA. 1998;280:1094-1095.
5. Demitrack MA, Dale JK, Straus SE, Laue L, Listwak SJ, Kruesi MJP. Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome. J Clin Endocrinol Metab. 1991;73:1224-1234.
In Reply: Our study of patients with CFS was designed to evaluate efficacy and safety of hydrocortisone. We reported that divided doses totaling 25 to 35 mg/d for 12 weeks provided significant but modest symptomatic relief and also significant adrenal suppression. Our conclusion, then and now, is that the risks associated with low-dose hydrocortisone treatment outweigh its potential advantages for patients with CFS.
Dr Baschetti and Dr Teitelbaum and colleagues suggest that the dosage we used was too high. We based our regimen on our prior observation that CFS patients secrete approximately 30% less cortisol per day than healthy subjects. Our hypothesis was that modest glucocorticoid supplementation might ameliorate CFS symptoms.
We were aware of the work by Jefferies, whose clinical experience led him to conclude that hydrocortisone dosages totaling 10 to 20 mg/d ameliorate fatigue. He reported, though, "...that low dosages of cortisone partly suppress endogenous adrenocortical production of...hydrocortisone to a degree proportional to the dosage." Thus, low-dose exogenous hydrocortisone treatment will not raise net glucocorticoid levels. Based on these considerations, we presumed that there would be no symptomatic improvement in CFS patients unless their glucocorticoid levels could be supplemented toward the normal range.
Perhaps, however, a lower dosage is effective. Teitelbaum et al summarize their own trial as suggesting benefit of low-dose hydrocortisone. We welcome a complete account of their methods and results. Since our report appeared, though, Cleare et al found that 5 to 10 mg of hydrocortisone per day provides symptomatic relief for patients with CFS. Moreover, they observed no evidence of adrenal suppression. Unfortunately, the extent of symptomatic benefit was modest, failing to achieve the study's primary therapeutic end point. In addition, treatment was provided for only 4 weeks, a duration that may be insufficient for such effects to be evident.
Thus, if defective glucocorticoid secretion is a primary problem in CFS, then low-dose replacement may, over time, worsen clinical outcome by inhibiting the remaining endogenous glucocorticoid production. In fact, we proposed that a more likely explanation for the findings in CFS is that peripheral glucocorticoid secretion is a downstream indicator of a more proximal disturbance in central nervous system function. Emerging lines of evidence regarding neuropsychological changes, psychiatric morbidity, and neurotransmitter levels in CFS are consistent with this view.
We agree with Dr Friedman and colleagues that the benefits observed in our report may reflect the expected effects on general well-being of short-term glucocorticoid administration to humans. Rather than being nonspecific effects, they likely reflect hydrocortisone's known ability to activate the central nervous system. We also agree with Friedman et al, and Baschetti that beneficial effects of hydrocortisone could have been mediated, in part, by its mineralocorticoid activity. In this regard, we and collaborators at Johns Hopkins University are conducting a placebo-controlled trial of fludrocortisone therapy in CFS. We await its completion for the insights that it will yield regarding the neuroendocrine disturbances in CFS and their potential amelioration.
Stephen E. Straus, MD National Institute of Allergy and Infectious Diseases Bethesda, Md
Robin McKenzie, MD Johns Hopkins University School of Medicine Baltimore, Md
Mark A. Demitrack, MD Lilly Research Laboratories Indianapolis, Ind
2. Demitrack MA, Dale JK, Straus SE, Laue L, Listwak SJ, Kruesi MJP. Evidence for impaired activation of the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue syndrome. J Clin Endocrinol Metab. 1991;73:1224-1234.
3. Jefferies WM. Low-dosage glucocorticoid therapy: an appraisal of its safety and mode of action in clinical disorders, including rheumatoid arthritis. Arch Intern Med. 1967;119:265-278.
4. Cleare AJ, Heap E, Malhi GS, Wessley S, O'Keane V, Miell J. Low-dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet. 1999;353:455-458.
5. Bou-Holaigah I, Rowe PC, Kan J, Calkins H. The relationship between neurally mediated hypotension and the chronic fatigue syndrome. JAMA. 1995;274:961-967.
CONTROLLING PAIN IN FIBROMYALGIA SYNDROME
by Camilla Cracchiolo, RN
Copyright 1996. May be freely reproduced for non-profit purposes as long as credit is given.
In the US, all chronic pain conditions are seriously undermedicated. Chronic pain conditions like FMS, certain kinds of low back pain, and migraines, where there are not hard physical findings such as abnormal X-rays, tend to be the most undertreated. But the problem is not linited to these conditions. A recent study found that 1/3 of terminal cancer patients were not prescribed proper pain medication and therefore did not get relief.
In the study of cancer pain, three reasons were given by physicians for why they had not prescribed more medication:
1) Despite the fact that these were *terminal patients in the last few months of life*, physicians were afraid of creating an addiction.
2) The doctors were afraid of harrassment by the Drug Enforcement
Administration if they gave out too many narcotic prescriptions. The DEA keeps a very close eye on doctors, because a few rotten eggs have gone into the 'prescription mill' business of providing narcotics for street addicts.
3) The most common reason: physicians simply didn't ask their patients if they were in pain. They assumed that the patient would ask them if they needed help.
This study also found that physicians often didn't prescribe the medication correctly and that medications were often inappropriately withheld by nurses (this isn't a rant only against doctors. Unfortunately my own profession is also ill-informed.)
This study is alarming, because terminal cancer is a condition where severe pain is expected. Imagine, therefore, what other people in pain must be facing. And in fact, other studies have found similar results, with pain relief in children being another problem area.
This, then, is the atmosphere in which a patient with FMS must seek treatment. But people with FMS have additional problems. Often, we have been complaining of pain for years. Many of us who have had pain that was more severe in one area such as the lower abdomen or low back have seen many doctors and had countless tests to rule out serious problems. We may even have had unnecessary surgeries: women with FMS have frequently had laparoscopies to find endometriosis. Others of us have been told that we had carpal tunnel syndrome or disorders of spinal disks. When treatment for these conditions don't work, or when nothing is found on tests, physicians often stop believing that we have pain at all. Many times, people with FMS have been told that they are hypochondriacs or just seeking attention and told to get psychiatric help. Worse, some of us have been labelled as drug addicts and had our medical records so marked. Some of us have even been verbally abused by physicians.
This leads to discouragement. A lot of us have simply stopped talking to physicians about pain, and try just to cope with it on our own. But don't give up! It IS possible to get fair, even good pain relief, in fibromyalagia syndrome.
First, you need a physician who knows about FMS and takes it seriously. The best way to find a doctor knowledgable about FMS is to check with your local FMS support group or ask for recommendations over on alt.med.fibromyalgia (which is also the fibromyalgia mailing list; they're gated.) If you have no idea how to find a local support group, you don't know how to find alt.med.fibromyalgia, or if you just don't know much about fibromyalgia syndrome in general, I have a very *long* FAQ I can send you by e-mail.
If you request it, I can also send you an article I wrote called "Dealing With Doctors When You Have Chronic Fatigue Syndrome". Even though the article is about CFS, the information is very applicable to folks with fibromyalgia syndrome. In it, I talk about how to get physicians to take your condition seriously, how to get your medical records, how to search medical databases, books you should buy and many other things.
Often, rheumatologists are the doctors who take care of people with FMS and generally they are pretty well informed. You may also want to consult a physician who specialzes in pain management if you haven't already. Most people with FMS seem to do best with a combination of therapies, which may mean combining non-drug treatments with medications, or combining several different kinds of medications or both. Pain specialists have access to not only many drugs but also to many non drug therapies as well. If you can find one who is knowledgable about FMS, pain specialists can be quite helpful in developing a multi-factor treatment. Usually you need a referral from another physician to see a pain management specialist.
Moving on to treatments:
NON-DRUG TREATMENTS: You're probably familiar with many of these, since most people with FMS have in desperation tried every single thing they can lay their hands on. This catagory includes spray and stretch; more traditional physical therapy like hot packs,ice packs, diathermy, electrical muscle stimulation and/or TENS; massage; yoga or other stretching exercises; Feldenkrais body work (which helped me a lot, BTW), acupuncture, biofeedback, exercise in water and aerobic exercise. I'm not going to address every single one: hot packs, ice packs and massage, for example, are fairly self-explanatory and people are able to explore them on their own. (and no doubt already have.) But I do want to address some of these treatments.
Spray and stretch: This treatment involves spraying the skin with a local anesthetic and then a physical therapist stretches the muscle while it's numb. It can be very helpful if you have areas of spasm in the middle of muscles. You can feel these: they feel like big knots or bands.
Cranio-sacral release: a special kind of physical therapy that stretches the back and neck muscles. Very good for breaking up spasms in the neck and low back.
Yoga and stretching: They key words here are 'gentle' and 'gradual'. Yoga and other kinds of stretching are very helpful in FMS but if you don't proceed carefully and slowly, you can cause more pain.
Feldenkrais movement therapy: Feldenkrais is a kind of gentle movement therapy. Usually, one learns the technique in a class, but Feldenkrais practitioners also offer private sessions where they passively move your joints in certain specific ways. Many people with FMS rave about how great Feldenkrais is, and I'm one of them. It was the first treatment I ever found that would give me relief for weeks instead of hours. Unfortunately, unless you can find a Feldenkrais practitioner who works with a physical therapist (or in some places, a chiropractor), insurance does not pay for it and private sessions can be *quite* expensive. Feldenkrais practitioners believe that the kinds of movements they do create new patterns in the brain. It has never been studied, but I suspect this is untrue. However, Feldenkrais definitely has a place in physical therapy.
Acupuncture and Traditional Chinese Medicine (TCM): Acupuncture has been shown scientifically to be effective in controlling pain. However, most researchers don't accept the explanation TCM practitioners invoke, which involves 'body energies' such as chi (also called Qi.) Most researchers believe that it works by affecting the central nervous system, when in turn then releases natural pain killing substances called endorphins. But nobody is really sure what's going on. One very interesting finding in FMS research is that inserting dry needles into trigger points is almost as effective as injecting those points with anesthetic or anti-inflammatory drugs. Whatever the cause, some people with FMS do well with it.
TCM practitioners are also trained in the use of herbs and often suggest herbal therapies to their patients. Many of these herbs contain powerful pharmacologic agents and have not been adequately studied. The effectiveness of herbal therapy in FMS has never been scientifically studied. Herbal medicine presents special problems to the person who wishes to use it. Persons who wish to experiment with herbal therapies should be very well read and informed about all the issues before proceding. I have an article called "CAUTIONS ABOUT HERBAL MEDICINE" which I can send to you if you send a message to email@example.com
Aerobic exercise: Many people with FMS report that very careful, gradually built up aerobic exercise, combined with the use of medications that help sleep, provide them with significant pain relief. However, this is controversial among that segment of people with fibromyalgia syndrome who also have Chronic Fatigue Syndrome. Many people with CFS report serious exacerbation of their illness when attempting exercise. Studies conflict: one study has suggested that aerobic exercise is beneficial to people whose illness is mild and who are relatively high functioning. Others have suggested that reconditioning is not possible in CFS. Still others have expressed great concern that physical deconditioning worsens CFS, creating a vicious cycle. The issue is not resolved. People with CFS should proceed very slowly in attempting any conditioning program. Exercise in a swimming pool has been reported helpful by a few people with CFS who could not otherwise tolerate an exercise program.
THINGS TO AVOID OR USE ONLY WITH CAUTION:
Rolfing: Rolfing is a kind of very deep, very painful massage. Every person with FMS that I have spoken with who tried this said that it caused severe worsening of their symptoms.
Chiropractic: Chiropractic has been shown to be more effective than placebo in treating low back pain, and probably in mid-back pain as well. I have used it for that purpose. But I now have reservations about the use of chiropractic adjustment in FMS. Many people with FMS have hyper-mobile joints, and one theory of FMS is that the pain comes from all the extra work that our muscles have to do to keep our body in alignment. Since chiropractic increases joint mobility, it may be counterproductive in the long run.
Many chiropractors also don't want to limit themselves to the treatment of back pain. The basic theory of chiropractic, that 'subluxation' of the spine causes numerous medical disorders, has been proven false. Many engage in practices of no scientific merit such as testing for allergies by muscle tension (kinesiology) or sell supplements of questionable value. Chiropractic neck adjustments can be dangerous in a small percentage of people, causing stroke via tearing of the vertebral artery. If you decide to try chiropractic, avoid chiropractors who engage in such practices.
Echinacea: Echinacea is an herb believed to stimulate the immune system. Many people use it to ward off colds or the flu. I use it for that purpose without problems, although I use it sparingly and only for short periods. Some people with Chronic Fatigue Syndrome have been experimenting with it, since an unknown percentage of people with CFS have an associated immune deficiency. A few find that it helps with the sore throat and swollen lymph nodes in the neck associated with the illness (particularly if used in liquid form and held in the mouth for a bit before swallowing). However, it is also believed that many of the symptoms of CFS (and therefore perhaps of FMS since the illnesses appear to be related) are due to high levels of immune stimulating chemicals in the blood. There are anecdotal reports of echinacea worsening fatigue and causing body aches.
DRUG THERAPIES: these include anti-depressants, medications to improve sleep, muscle relaxants and various pain drugs.
Anti-depressants: Many physicians consider anti-depressants the first choice medication for FMS because they are non-addicting and useful in treating sleep problems. Unlike sedatives such as barbiturates, they don't interfere with the deep levels of sleep so important in properly controlling fibromyalgia pain. Some anti-depressants also have pain control properties because they can block pain impulses high in the spinal cord (particularly the SSRIs like Prozac and Zoloft, and amitriptyline, which is a tricyclic.) These effects are independent of their effects on depression and these anti-depressants are often used in the treatment in pain of neurologic origin. Many physicians feel that FMS pain originates in the central nervous system, via dysregulation of the normal pain perception mechanisms in the brain and high in the spinal cord. So, if your physician suggests an anti-depressant, it doesn't necessarily mean that he/she thinks it's all in your head.
The side effects of antidepressants can be very annoying, however. The SSRIs have fewer side effects than the others, but are not very helpful in promoting sleep. The heterocyclics and tricyclics help sleep but often produce sedation, brain fog, weight gain and dry mouth. Both the SSRIs and the heterocyclics are associated with sexual dysfunctions in about 1/3 of their users. I'm working on an article on sexual dysfunction in CFS that will address some of these medication issues. If you send an e-mail request to firstname.lastname@example.org, I'll send you a copy when it's finished. (note: you may wait a long time, since my own CFS does not permit any deadlines.)
Like most people with FMS, I have the 'Sleep Disorder from Hell'. Treating my sleep has not cured my fibromyalgia but it has definitely made my life more bearable. With all the drugs bedlow there is a tradeoff: you may sleep better but find that you are more groggy in the morning. If you happen to be one of the folks with FM/CFS and Neurally Mediated Hypotension (NMH), these drugs can lower your blood pressure. You may not be able to take them, in that case, although you may be able to fix this by adjusting the dose of Florinef or whatever drug you normally take for this problem. Dose adjustment for NMH should be done, of course, only with the close and careful supervision of an M.D.
Antidepressants particularly effective in sleep disorders are Desyrel (trazadone) and Elavil (amitriptyline).
Antihistamines (dimenhydramine, chlorpheniramine, Atarax): These are supposed to not interfere with the deeper sleep stages, although I find that when I rely on them alone (with no prescription sleep aids), they knock me out but I wake up after 4 hours no matter what. But some people with FMS do quite well with them. Atarax is a prescription drug; however over the counter antihistamine sleep aids like dimenhydramine (benadryl, Sominex, Nytol) and chlorpheniramine (Chlor-Trimeton) probably work just as well and are cheaper. When combined with my regular sleep meds (amitriptyline and Klonopin), they add an extra punch that I find useful. I find increasing the antihistamines to be preferable to my other option, which is to increase the Klonopin. Since Klonopin in quite addictive and tolerance can build up quickly, I try to Klonopin dose under 1 mg. Antihistamines also improve my sleep by keeping my nasal passages clear and hence cutting down on snoring. These drugs are usually safe to take with prescription meds. (although you should NEVER combine prescription and non-prescription drugs without first checking with the doctor who prescribed you the drug).
If you decide to try antihistamines, make sure that you don't use any kind of combination product, particularly one which says 'decongestant'. Decongestant = pseudoephedrine (Sudafed) = stimulant, which equals staying up all night, guaranteed. Plus, unlike antihistamines alone, pseudoephedrine has dangerous interactions with a number of antidepressants and can elevate blood pressure and cause abnormal heart rhythms.
Note: you may need to exceed the maximum dose on the label to get results. Up to twice the standard dose is fairly safe, but you should check with your physician before doing this. You may also find that you do better by taking more than one antihistamine at night. I currently take a long acting version of chlorpheniramine called Effidac, which acts for 24 hours, plus 12 mg of regular short acting chlorpheniramine in addition to my prescription meds. When this still doesn't work, I add 50 mg of benadryl. At high doses, it's possible to develop urinary retention, so men with enlarged prostates or folks who have other problems with the urinary tract should keep this in mind.
Benzodiazepines (Valium, Xanax, Klonopin): For getting to sleep, I find that Klonopin (which is a benzodiazepine but also an anticonvulsant) knocks me right out and is the best thing I've ever found for those nights when I just can't get to sleep no matter what. Unfortunately, all benzodiazepines can interfere with the deeper stages of sleep, so they're probably not the best first line choice. They're also addicting and tolerance can build up pretty fast, so I use Klonopin only sparingly.
Valerian root: This herb has been used for decades in Europe for the treatment of occasional insomnia and as a mild tranquillizer. It is well studied and appears to act on a neurotransmitter called GABA, which is responsible for 'turning down' brain reactions: benzodiazepines and other tranquillizers act on this same system. Nobody knows exactly what the active ingredient is, although high on the list of suspects are some chemicals called 'valproates', which are cousins to a prescription anti-convulsant called valproeic acid. (For the record: the drug diazepam (Valium) is NOT extracted from valerian. This is a common myth about valerian. Valium and valerian have no relationship to one another.)
There are many researchers and physicians in the US, including some very conservative 'quack busters' who think that valerian should be approved as an over the counter sleep aid here in the U.S. Valerian is good for occasional use and I take it on top of my other meds as a last resort when I can't get to sleep. I don't recommend valerian for constant use for the following reasons:
1. Its effects tend to wear off over time.
2. It can improve depression in the short run, but may cause or aggravate depression when used every night for several months.
3. It failed the Ames test, which is the standard test to see if an agent can cause cancer or birth defects. Many useful substances have failed the Ames test but don't appear to cause cancer in humans. However, I would not take it regularly or give it to children for this reason. Since the Ames test measures the rate at which a given substance causes mutations in bacteria, failing the test means that the substance may cause birth defects in addition to cancer. I strongly urge that it NOT be used by pregnant women.
For more information, see the following files on my web site: the valerian article by herbalist Fred Shaw, the Herbal Products Proposed Regulation from the National Council Against Health Fraud, and my article: "Herbal Medicine: Often Helpful But Use With Care"
Pain medication options include:
Muscle relaxants: This is often another way of saying 'benzodiazepine' (see sleep med section above.) However benzos can be helpful in dealing with muscle spasms. There is also an anti-depressant called Flexeril that many people with FMS find helpful because it has genuine muscle relaxant effects. This catagory also includes carisoprodol (Soma, Rela) which basically metabolizes to a tranquillizer called meprobamate. Meprobamate is addictive; however carisoprodol does have muscle relaxant effects via the central nervous system and so may be helpful to some people with FMS.
Trigger point injections: Some people find that injecting anesthetics, opiates and/or anti-inflammatories like cortisone directly into those big knots we get is helpful. Some people also advocate this for tender points (no lump, just sore) as well. However, it's not clear whether the big benefit is from the medication or from the needle. At least one study has found inserting a dry needle, minus medication, to be almost as effective in relieving pain. So I suppose this could be included in non-drug therapies as well. And acupuncturists just love to stick needles into tender points. :)
NSAIDS (Ibuprofen, Naproxen, salcylates): These are not real effective for lots of folks but help me out sometimes. I find that for some reason they work better for me when the pain is localized to one area. They don't seem to help much when I have that 'hurt all over' kind of pain.
Stimulants: A few people seem to be getting good pain by combining two mild stimulants called phentermine and fenfluramine. I don't agree with the explanation for it's actions given by the main physician promoting it but some people swear by it, and I'm not going to try to talk anyone out of something that really works for them. The drugs are not particularly dangerous for most people, are less addicting than many of your other options and might be worth a try. However, fenfluramine is associated with an extremely rare but life threatening illness called pulmonary hypertension. More information on this topic is available at my website in the article titled: "Phentermine/Fenfluramine and Pulmonary Hypertension". Phentermine and fenfluramine may aggravate sleep problems. A theoretical concern with fenfluramine is that it has been shown to decrease the # of serotonin receptors in rat brains when used for a long time. This might cause or worsen depression in humans; however no human studies on this are available at this time.
To throw in some personal experience: I've taken phentermine but not fenfluramine. I find that I am very sensitive to even small doses of phentermine, that I have more energy for a while, and certainly eat less (a big plus, let me tell you); however, I can't take them every day, because it appears to build up in my system and it starts interfering with my sleep: it also increases my blood pressure by about 10 mm Hg and markedly aggravates my brain fog. For what it's worth, I haven't let that stop me from taking the drug but it's something to keep in mind.
Tegretol (generic = carbamazepine). This is an anti-convulsant drug with pain relieving properties that's often used to treat a severe facial pain disorder called trigeminal neuralgia. It's never been studied for FMS pain. I stumbled upon its effect on FMS pain quite by accident, when I tried it to see if it would relieve some of my brain fog. Unfortunately, the effect seems to have worn off, although it worked pretty well for me for over a year. The most common side effect is the development of an itchy rash when exposed to sunlight. It also can (rarely) cause serious blood disorders and it can be toxic in high levels. Your doctor should monitor the blood level and periodically run a complete blood count if you are using this drug.
Ultram (tramadol): Some people with FMS swear by it. It has the advantage of not producing the buzz associated with opiates and benzodiazepines. This can be a big plus with people who have brain fog. Ultram was originally promoted as a non-addicting alternative to opiates. However, a number of cases of addiction have now been reported in the literature, so this is no longer considered true, although it may prove less addictive than opiates: the jury is out on that. Tolerance appears to develop pretty quickly and people *definitely* go through withdrawal when they get off it. It also causes nausea in a significant percentage of people. Myself, I found that even taking 100 mg. of Ultram three times a day didn't help my FMS pain nearly as well as 1 Tylenol #3 at night, although I also didn't have the nausea often associated with it.
Opiate narcotics: The last resort and, in my opinion, not used nearly enough to treat FM pain. But use with caution. Many people try to reserve narcotics for really bad flare-ups and rely on the other methods listed above for routine pain control. I personally have managed to avoid the heavier narcotics like Vicodan, Demerol and Percoset; but Tylenol #3 and #4 (containig 30 mg and 60 mg of codeine respectively) provide the best pain relief for me of everything I've ever tried. Many other people with FMS say the same thing: narcotics work when all else fails. Right now, I use Tylenol #3 about twice a week, when the pain is so bad that I can't sleep.
Alas, narcotics are *very* addicting, and tolerance can build up quickly; although contrary to popular opinion FM pain can certainly be bad enough to warrant their use. Drug addiction is a bad enough thing that doctors are legitimately quite worried about addicting people to narcotics and hence creating an even worse problem than the pain. It's no fun trying to clean up the mess that an addiction, even to legal substances, usually leaves. Narcotics can also interfere with your life even you're not addicted. They can produce a lot of brain fog, a drawback if you have to hold a steady job or drive a car, or even be in the here and now. This means that you may have a hard time getting them out of your doctor if you decide you want to try them for more than very occasional use or find that only heavy narcotics relieve your pain.
Numerous studies have shown that chronic pain patients, with a legitimate need and who are under careful medical supervision, do not engage in addictive behaviors even when prescribed strong narcotics for long periods of time. One reason I urge people with FMS to try to find a good MD who specializes in pain management is, not only do these people have a wide arsenal of non-drug therapies, but they are the docs most likely to be aware of all the recent research on pain and narcotics. Of all physicians, they are the most likely to take pain complaints seriously and to prescribe narcotics when appropriate. They are also the people most likely to prescribe narcotics correctly (which is to use high doses to get the pain under control fast and then use small but regular doses to keep it that way.)
"The trick is to keep an open mind, without it being so open that your brain falls out."
Camilla Cracchiolo, RN
SICK AND TIRED
(CNN & TIME)
CNN Correspondent by Daryn Kagan.
It's been called the yuppie flu, but it's been anything but a passing fad. It is a major public outcry. We all have days when it feels like we just can't roll out of bed. We're tired, listless, completely drained. But imagine feeling that way and worse day in and day out for weeks, months, and even years.
We're talking about Chronic Fatigue Syndrome, the mysterious, debilitating illness that first showed up in the mid-1980s. And if you thought that this "yuppie flu" was the invention of hypochondriacs or had gone the way of Duran Duran or somehow had been cured, consider this. In the United States alone right now, hundreds of thousands of people may be struggling with CFS.
As the 1999 Women's World Cup came down to the wire in penalty kicks, another drama was taking place behind the scenes. Michelle Akers of the U.S. Women's Soccer Team played 90 minutes in blistering heat, until her body gave out.
Akers' doctors, coaches, and teammates know her symptoms are real, but some people think the disease she's recovering from, Chronic Fatigue Syndrome, is not. Reliving it somewhat, she says, "I'm graying out, and I can't hear, and my body's just clenched. So they put me on the table and then started trying to get the [intravenous lines] in."
When asked, "What does worst feel like, for people who don't know what that feels like?", she replied, "It's like just feeling totally empty on the inside. It's like there's no reserve, no energy. It's like a black hole in the very depths of your soul."
For years, CFS has been dismissed by many in the general public, the medical profession, even experts at the Federal Centers for Disease Control and Prevention. Fifteen years ago, a mysterious illness swept through the Alpine resorts and towns near Lake Tahoe. Incline Village, Nevada, was ground zero.
Dr. Dan Peterson is a local physician. He saw the first cases. He relates, "The first ones were isolated cases. A marathon runner in town who couldn't run any longer. Then we started seeing the clustering with the girls' high school basketball team where the entire team became ill -- extremely ill."
At Tahoe-Truckee High School, dozens of students came down with symptoms resembling mononucleosis. So did a third of the teachers. Like Jerry Kennedy who taught auto mechanics and drafting and his wife Janice who taught high school English.
Jerry Kennedy tries to describe it; "You're not tired. You're... it's like the blood's drained out of you, It's the worst feeling I've ever had in my life. I can't compare it to anything else that's ever happened to me."
Janice Kennedy adds, "It's like having bricks piled on you. It's as though you're fighting to move at all."
The number of cases multiplied during the summer of 1985. Dr. Peterson recalls, "That's when I first thought there's some new contagious disease -- something in the water, some Typhoid Mary had come into the school system and affected the kids and the teachers."
Besides fatigue, most patients developed a bizarre mental fogginess as Jerry Kennedy confides, "You feel dumb because you can't remember things. You forget people's.... You don't even comprehend the names. You lose it."
And Janice's experience: "I remember one horrible moment when I asked myself, 'What is a subordinate clause?' I could not remember what a subordinate clause was." ["Subordinate clause" is an English grammar term.]
Eventually, more than 250 people living around Lake Tahoe seemed to have the illness. For months, Dr. Peterson couldn't persuade anyone to investigate. Finally, the CDC agreed to send a two-man team.
Janice believed the CDC "didn't seem to feel that there was an epidemic, and we knew there was. It might have been small, but it definitely existed."
Dr. William Reeves is the CDC epidemiologist now in charge of investigating Chronic Fatigue Syndrome. He justifies the response, saying the "CDC's study at that time failed to identify any evidence that there was an unusual occurrence of a chronically fatiguing illness."
He didn't go to Incline Village, but he defends the team that did. He also defends their findings which are still controversial today. Dr. Reeves insists, "Using epidemiological public expertise of the time, there was no evidence, clear-cut, replicable evidence that anything unusual is happening in that population."
Dr. Peterson continues to assert; "I'm right about this. I know that these people were well, and now they're sick, and they're staying sick. So I have to hang in there and be diligent about it, regardless of what the rest of rest of the world thinks."
Over the years, Chronic Fatigue Syndrome has been thought of as a trendy illness, the "yuppie flu". Sufferers say the official name the CDC gave it didn't help.
Janice Kennedy points out; "Ever since they started calling it Chronic Fatigue Syndrome, I think every person who has had it, every family member of someone who has it, every doctor who is familiar with it hates that name because it seems to trivialize."
A diagnostic test for CFS has yet to be developed, but the CDC did come up with a definition: debilitating fatigue lasting at least six months, along with four of eight other symptoms. They include sore throat, muscle and joint pain, short-term memory loss, and an inability to recover from exertion. New cases have continued to crop up all over the country. Michelle Akers first noticed her symptoms in 1991.
"I would go into the shower after training and just cry and cry and cry. It was the only place I could go to where no one would see me and just say, 'I can't do this. I can't do it,' " Akers recalls.
Akers sidelined herself for almost an entire season in order to recover, but when she came back to soccer, she suffered constant relapses. Still, she kept the illness secret from her teammates, friends, even her family.
Finally, in 1996, Akers went public. She wrote an emotional letter to Congress describing a day in the life of a typical sufferer. "That was the first time I admitted publicly even to my folks how bad I was actually feeling, and I read it to my dad over the phone. I remember my dad was just stunned."
And so were some members of Congress who voted to give millions of dollars to the CDC to solve the mystery of chronic fatigue. But less than half actually went directly to CFS research. That led to another mystery -- What happened to the money?
This year, federal investigators found out. The CDC diverted between $9 and $13 million dollars, money that Congress had specifically set aside to study CFS. Instead, it was spent on other diseases, like polio and measles.
It was Dr. William Reeves, the head of the government CFS lab who helped bring the diversion to light. He says he did so after a superior asked him to lie about how much money was going to CFS research. "I felt that the best thing to do was just to report this to Congress, and that's when I formally blew the whistle."
But not before CDC officials gave inaccurate and misleading information to Congress about how the money was spent. But why was the money taken from CFS in the first place?
Dr. Reeves answers, "It was taken from Chronic Fatigue Syndrome because it was not perceived by the people doing it as important as the other ones, not perceived as an infectious disease."
The CDC's current director, Dr. Jeffrey Koplan, says all the missing money will be restored over the next four years, and while nobody was fired, the division overseeing CFS has been put on probationary status.
Dr. Koplan states, "CDC, in regard to Chronic Fatigue Syndrome, misspent funds allocated to us for Chronic Fatigue Syndrome, and for that, we sincerely apologize to all parties involved and in particular the people and their families that suffer from Chronic Fatigue Syndrome."
Dr. Reeves felt, "We were set back. There is no question about that. We were set back substantially. Programs suffered because of this. This has probably set us back three to five years."
Perhaps the government's premier laboratory didn't make CFS a priority, but other researchers have. Dr. Dedra Buchwald, a Harvard-trained physician, arrived in Incline Village after the CDC left, and she's been studying CFS ever since. She believes she's on the verge of a breakthrough. She's designed a unique study using identical twins. She compares sick twins to their healthy counterparts, trying to detect differences caused by CFS.
Mary Nelson and Martha Williams are the 21st pair of twins to take part in Buchwald's study. Martha was an Arkansas state trooper for 20 years, until a series of worsening symptoms forced her into early retirement.
Martha told herself; "I always had a reason for why I was hurting. It was either the leather gear or the bulletproof vest; the boots, getting in and out of the car, the headaches was from my hat, or my eyes hurt because the sun, etc."
Mary is a construction worker in Missouri. She's still on the job, but complains; "Your legs hurt. It feels like you're walking on needles. In the night while you're trying to sleep, you wake up, and it's hard to describe to someone, but it's like your arms and your legs are asleep, or they're numb but they hurt."
Researchers aren't supposed to know which twin is sick, but it's pretty obvious. Martha's symptoms - fatigue, muscle pain, difficulty thinking and sleeping -- are familiar indicators of CFS.
For an entire week, the twins were put through a battery of tests: tests to measure exercise tolerance, memory and thought processing, sleep disturbances, and blood hormone levels.
Dr. Buchwald thought that there would very substantial differences between the healthy twin and the sick twin. But there wasn't. Both twins performed low on many of the tests. Buchwald believes it's because both twins have a genetic predisposition to CFS. She considers; "Right now, our thinking is just that there is a group of people that are vulnerable or that are likely to be vulnerable to get CFS."
Buchwald's study presents a new option, that heredity plays a major role in chronic fatigue. She speculates; "Most people who have that predisposition will never get Chronic Fatigue Syndrome, but for an unfortunate few, they will be exposed to some series of triggers or trigger, which could be anything from an infectious illness to an episode of depression or a motor vehicle accident, that will trigger this Chronic Fatigue Syndrome."
Meanwhile, the Centers for Disease Control is still trying to catch up.
CDC Director Koplan reassures that, "We're looking at what we have now, what resources we have in terms of people and laboratory techniques, what studies need to be done, who else we need to involve from outside in giving us more information. So we're trying to set a forward course in saying how can we make a difference with this disease."
They're starting with a new national head count. As recently as two years ago, the CDC believed only 10,000 Americans had the illness. Now the CDC says, based on a study in Wichita, Kansas, that number is actually 40 times higher. Today, the CDC estimates 400,000 Americans over age 18 have active CFS.
Dr. Reeves restates, "This is a major public health problem, and as I said, in Wichita at least, this is about a quarter the number of women that have breast cancer, and it's about four times more than the number of women that have cervical cancer."
But 15 years after the outbreak of CFS in Incline Village, Nevada, the man who first identified the illness expected [progress] be further along. Dr. Peterson lamented, "I mean, the CDC is still counting heads, still saying this disease exists, and here are the numbers. Well, I never expected to be here, still [in a quandary over] this problem 5 years later. I really didn't."
Recently, Peterson did his own follow-up of 180 of his original patients, saying, "About 30 percent of them are still severely disabled. The remainder have had substantial or at least partial improvements." But when asked how many are completely recovered he answered, "None".
In April, the Social Security administration official recognized Chronic Fatigue Syndrome as a medical impairment.
-- SOURCE: Station: Cable News Network (CNN) Date: Oktober 24, 1999 Programme: CNN & Time URL: http://cnn.com/TRANSCRIPTS/impc.html (home page) http://cnn.com/CNNPromos/cnntime (home page 2) http://cnn.com/TRANSCRIPTS/9910/24/impc.00.html (text)
(c) 1999 Cable News Network
Latest Article: First Aid Instructions
Heat and Cold Emergencies and Treating Snake Bites Heat Related Illness Heat cramps, heat exhaustion, and heat stroke are conditions caused by overexposure to heat. Heat cramps are the least severe, and often are the first signals that the body is having trouble with the heat. Heat cramps are painful muscle spasms. They usually occur in the legs and abdomen. Think of them as a warning...