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Letters From Our Readers With Suggestions & Questions 11-08-2006

  [ 241 votes ]   [ 1 Comment ] • November 8, 2006

Special preparations for surgery crucial with FM
I hope that you will recycle the information about FM and surgery every couple of months. [See “Guidance for Fibromyalgia Patients Who are Having Surgery” ]

When I had a hysterectomy, my FM had been well controlled for five years. After the surgery, I had the worst flare in 30 years of living with FM. Two years later, I’m doing better most days, but hate for anyone else to go through it. - Peggy


Doctors: Learn the benefits of warm water therapy
I was very interested in the research article on warm water therapy to treat Fibromyalgia symptoms.* When diagnosed in January 2001, I was placed on Amitriptilin, then Nortiptilin and Celexa. None of these helped my symptoms. At the same time I started a warm water exercise program designed specifically for Fibromyalgia patients. It has been a Godsend. The warm water soothed the muscles. The gentle wave action stimulated the nerves and helped them to settle down. The buoyancy prevented the impact on the knees, hips, and ankles, allowing me to exercise more vigorously and get a cardiac workout.

There was the camaraderie of others who share similar symptoms and experiences. I am now off all meds except Tylenol and Advil as needed. Unfortunately there aren’t enough warm water pools available to us, and some professionals still are unaware of the long-lasting benefits of this kind of therapy.

* See abstract of the article, “Effects of balneotherapy on serum IL-1, PGE(2) and LTB (4) levels in Fibromyalgia patients,” at


FM similar to PTSD for some?
After much reflection I believe my FM was triggered psychologically. I hid all my emotions, and believe FM “is the pain one refuses to feel” (denial) until all the adrenalin is totally used up and any stress causes the dopamine to act irregularly…. The bottom line is for the medical field to treat the emotional in concert with medication as the victim of FM digs deep to face the traumas that they chose to …repress. It is very similar to Post Traumatic Stress Disorder. - Mary

Note: Look for the abstract of a new article addressing the possibility of an FM-PTSD link in the next FM newsletter.


FM the Arthritis community’s stepchild?
Being a nurse with FM… I find it astonishing that with FM being the number 2 most commonly diagnosed arthritis-related condition, the Arthritis Society/Arthritis Foundation are not putting more resources into studying the condition further.

And I must confess I just signed up for your newsletter and am waiting for my copy to arrive - but wanted to know if you have some information on any new research in FM? The info I’ve seen about FM and CFS is from the early 90’s and surely there must be something new. - Janette

Note: Much research is being done from a range of perspectives. To provide a record, we collect the abstracts of new journal articles for inclusion in each weekly FM and CFS newsletter – usually at least 10 per issue.


Try out this new name for FM
I would like to suggest a new name for Fibromyalgia and CFS. Neuro-Viral Stress Disorder. I love your new catalog with the helpful articles. And since I purchased the two DVDs – Show Me Where It Hurts, and I Remember Me – I feel more hopeful to find a solution to the CFS & FM I have suffered from for 30 years. – Ingrid

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Article Comments Post a Comment

About the name change
Posted by: Concetta1
Nov 8, 2006
I personally think there is enough confusion about the illness with out changing the name. People have just gotten a grasp of the idea that there is such a thing now you want to chang the name. leave things alone and let get to the bussness of getting information out to those how need it and not start cofusing them with another name. The doctors need to now this name of the syndrom they way we do. just get the information out there, and don't play with the name it is not as important as what it is.FIBROMYALGIA. it is self explanatory and to the point.
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