Reader's Response to Answer to Your Questions

Dear Cheri,

Thank you for taking time to express your concerns and frustrations.  I appreciate the opportunity to respond. 

While representing the broad interests and concerns of the FM community and the common overlapping conditions that co-exist, striking a balance is important.  We are all in earnest pursuit of how to regain our health, vigor, and control over our personal lives.

In the first FM-Chronic Pain LIFE magazine, we included an article about the potential sensitivities to the related chemicals solanine and nicotine in food we eat.  (Please see "Could Potatoes be Affecting Your Fibromyalgia Symptoms?")  At the end of the article, the Cocoa and Elimination Diet were discussed and encouraged.  We intend to continue looking at CAM/IM approaches to managing FM and overlapping condition symptoms.  Your suggestions on future topics are appreciated.  

My fiduciary responsibility towards the community is to ensure that those who propose alternative methods are not allowed to take advantage of our vulnerability by presenting unreasonable, unethical, or dangerous products or treatments.  Current scientific models of research do not bear out the benefits of some popular treatments.  That does not mean those treatments that do not show objective scientific benefit are not effective, but some sort of standard must be applied.  We promise to use due diligence in recommending, tacitly approving, or even allowing advertising, for products that are of benefit to our community.  

We need to look at the basics first.  Absolutely diet has a major effect on general health and consequently FM symptoms.  The resiliency of the body is dependent on good nutrition.  Some people benefit from alkaline diets.  Others from gluten free diets.  Others have few reserves of vitamins and essential nutrients in their bodies and need supplementation.  Lifestyle choices  also affect FM symptoms- how we manage stress, exercise, relationships,  posture, attitudes, spiritual and emotional health.  

As a central nervous system illness, FM is also considered to cause hypersensitivity to chemicals (including fragrances), foods, medications (perhaps some antibiotics), allergens, and stress chemicals.  Where to start?  Accepting personal responsibility that what we eat and think has an effect on our bodies and minds.  Little improvements over time add up to an improved quality of life.  We all hope that a cause and a cure/treatments are found.  But those treatments will only be enhanced by the additional benefit of lifestyle choices and never replace them.  NIH is currently expanding research opportunities for CAMs.  The NFMCPA is representing patients' concerns and will include advocating for research for those CAMS/IMs most commonly used for pain and symptom relief.

There are people whose health is improved from their most severe fibromyalgia symptoms.  We intend to survey people to learn the most effective methods of improvement or recovery.  I believe it would be a disservice to add guilt rather than education about lifestyle choices to the members of our community.  

Gathering personal tools, or learning which changes in lifestyle choices make a personal difference takes time.  I recognize the value of having reduction of pain through medication while people explore lifestyle changes and CAM/IMs.  I know people who have benefited by having this tool in their toolbelts--who are able to have enough relief from pain to engage in new exercise regimens and to focus on cognitive behavioral therapy, for example.  Or to continue working to maintain their health care benefits.  I also know people who have physical restrictions that render them unable to exercise, have good posture, or to be physically active.  How do we help them?  Personally, I'm grateful they have the option to use medications that reduce their pain and symptoms.  

Recognizing people have a broad variety of symptoms and degree of symptoms in our FM community, we must keep an open mind and opportunity for people to seek relief how and where they may.  Please watch for further discussions on lifestyle choices and their effect on FM and overlapping conditions symptoms.

Sincerely yours, 

Jan Chambers

From: "Cheri Ruppel" <tulkache@optonline.net>
Sent: Friday, September 23, 2011 8:32 PM
To: "FM-CP Advocate" <info@fmcpaware.org>
Subject: RE: Response to Your Questions about NFMCPA and NFA

Of course you didn’t answer my question, most of us with Fibro, CP, and all the go along diseases, don’t want anymore drug company drugs just making us sicker from the side effects. Why are you pushing Lyrica when you know it makes you gain weight, we don’t want to be prescribed drug addicts we want a decent life back. I want to say talk about what we eat, stop eating gluten, stop taking steroids, do some research into alternatives like (deleted by Jan Chambers as it constitutes a possible product endorsement) and the fact that all the so called cures are just leading to other problems. I can’t condone things that are making big drug companies rich and doctors even richer. I dare you to publish this. And really show some concern for people who have had all that is precious taken away from them only to realize if we had just kept on exercising and doing what kept us happy maybe we won’t be crippled and sick all the time.