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Letters From Our Readers – Q & A Session 4-18-07

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Why Don’t Doctors Know About This Research?

Q: The article by Dr. Kent Holtorf [["Kent Holtorf, MD, On Treating Chronic Fatigue Syndrome & Fibromyalgia – An Update"] was very interesting, but it doesn’t address a problem I ran into when I tried to talk to my doctor and an endocrinologist about thyroid issues. I’ve had an under active (or non-existent) thyroid all my life – they’re not sure which. When I first read about the work that was being done with hypothyroidism by a doctor in Colorado, I asked my PCP about it. She dismissed it and said my thyroid tests showed my thyroid was right where it was supposed to be because that’s what my TSH tests showed.

I asked for and received a referral to an endocrinologist. I was sure I could get him/her to understand that this thyroid theory might be the answer to my weight problems, as well as my Fibromyalgia. No such luck. He also dismissed the research and said the TSH [thyroid stimulating hormone] test showed I was getting enough thyroid and there was no way he would ever prescribe a different dosage to try an experiment.

Is Dr. Holtorf’s research anywhere near being accepted by mainstream physicians? It’s heartbreaking and really, really frustrating to know that there may be a treatment capable of making me feel better, but I’m unable to take advantage of it. – Susan

A: Dr. Holtorf has written an article, featured in this issue of the newsletter, explaining why it takes so long for new research to be accepted by many mainstream physicians. (See: “Why Doesn’t My Doctor Know This?”) He also said, “I would recommend Susan ask her endocrinologist, ‘If someone has central hypothyroidism, can the TSH be used to determine appropriate thyroid levels?’ I would hope the endocrinologist would say 'no', as this is accepted to be the case in even basic endocrinology texts.”

Dr. Holtorf then referred to a study which indicated that 100 percent of FM patients have central hypothyroidism (Neeck G and Riedel W, “Thyroid Function in Patients with Fibromyalgia Syndrome,” Journal of Rheumatology, 1992; 19:7; pp. 1120-1122) and said that, in your case, it is inappropriate to use the TSH to determine the proper thyroid replacement dose. He also added that the TSH is unreliable if someone is overweight. (Look for more on these topics in future issues.)

 

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What’s the Difference Between CFS/FM and MS?

Q: …I have suffered for several years and secretly believed I had MS [multiple sclerosis]. I see many places where CFIDS and MS symptoms mimic each other. What are the main differences in MS and CFIDS/FM/Epstein Barr symptoms? I have been to many specialists and finally told the last one what I suspected I had, but he assured me that I did not have symptoms of MS. What is the difference? – Susan

A: You’re correct in your observation that CFS, FM and MS (multiple sclerosis) have many symptoms in common. There are, however, some differences. One of the most significant differences seems to be in the timing and duration of symptoms, particularly at the onset of the illness. MS symptoms tend to flare for a short period of time (like a day), then disappear for a month or more before they flare again. With CFS and FM, although some days are better than others, most symptoms are evident on a daily basis.

According to the Mayo Clinic, MS symptoms may include:

n Numbness or weakness in one or more limbs, which typically occurs on one side of your body at a time or the bottom half of your body n Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
n Double vision or blurring of vision
n Tingling or pain in parts of your body
n Electric-shock sensations that occur with certain head movements
n Tremor, lack of coordination or unsteady gait
n Fatigue
n Dizziness

In some cases, people with multiple sclerosis may also develop muscle stiffness or spasticity, slurred speech, paralysis, or problems with bladder, bowel or sexual function. Mental changes, such as forgetfulness or difficulties with concentration, also may occur.

Your medical history also gives your doctor clues to help determine whether your symptoms are CFS, FM or MS. Other signs of MS that your physician would detect during a physical exam include:
n Altered eye movements and abnormal responses of the pupils
n Subtle changes in speech patterns
n Altered reflex responses
n Impaired coordination
n Sensory disturbances
n Evidence of spasticity and/or weakness in the arms or legs.

 

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Info on Spinal Stenosis?

Q: I would like info on spinal stenosis. – Jim

A: Spinal stenosis is defined as a narrowing at one or more points in the center of the spine that may create pressure on the nerves/spinal cord and can cause pain. MedlinePlus is an excellent resource on this topic, offering links to a wide variety of information about spinal stenosis that was put together and reviewed by the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases at http://www.nlm.nih.gov/medlineplus/spinalstenosis.html

 

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Looking for FM Exercise Video

Q: In the last FM newsletter, you had an article on aerobic exercise being beneficial. I was wondering where I would be able to buy an aerobic exercise CD that would be specifically for FM. I have tried other aerobic exercise routines, but have found them to be so repetitive that I cannot continue. – GT

A: We'll keep looking, but so far we've found only videos, DVDs, and audio tapes, but no CDs. For example:

n We recently ran an article titled "A Fibromyalgia Patients' Guide to Exercise" by Sharon R Clark, PhD, FNP, one of the founders of the Oregon Health & Science University's Fibromyalgia Information Foundation. As the article indicates, the Foundation site offers three exercise DVDs – on strength and balance, on stretching and relaxation, and on aerobic exercise, at http://www.myalgia.com/VIDEOS/Video_Introduction.htm

n The National Arthritis Foundation site features a physician-reviewed PACE (people with arthritis can exercise) exercise video .

n The NAF site also features a number of exercise DVDs and audio tapes.

 

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Night Sweats Are a Problem

Q: I had a total hysterectomy when I was 25 years old and I am now 50. About six to eight months ago, I stopped taking hormone replacement therapy and my health has deteriorated. For 17 years, I have had FM, osteoarthritis and many other illnesses. Now I am waking up once or twice a night and everything is wet. I do take opiates for chronic pain and for a while I thought that maybe that was why I was wet. I do not know what to do about this problematic situation. I’m very confused. Any advice would be helpful. – Clarisse

A: There are a number of things that can cause night sweats. They are a common symptom of menopause and are usually controlled by hormone replacement therapy. If the night sweats started shortly after you stopped taking the HRT, that may be where your problem lies. In that case, tell your doctor about the night sweats and ask about possible alternatives to traditional HRT. If you would like to read about other possible causes, read “8 Causes of Night Sweats” from MedicineNet.

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Note: This information has not been evaluated by the FDA. It is for general information purposes only and is not intended to be construed as medical advice, or to prevent, diagnose, treat, or cure any condition, illness, or disease. It is very important that you never make a change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.

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