Letters From Our Readers – FM Q & A Session 2-21-07

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Is It Celiac Disease or Fibromyalgia?

Q: I have recently been diagnosed with an autoimmune illness called celiac disease and find that the symptoms are so similar to Fibromyalgia that I'm wondering if I really have both illnesses or only celiac. Now, I'm noticing that when the celiac flares up from my accidentally ingesting gluten, my Fibromyalgia pain increases. If I stay away from wheat, barley, and rye gluten, all my symptoms improve. Needless to say, I'm very confused. – Gayla

A: Celiac disease and Fibromyalgia share many similar symptoms, and it’s often difficult to distinguish whether a person has one or the other or both. If you stick to a gluten-free diet and all of your symptoms disappear, there’s a good chance you just have celiac disease. On the other hand, if some symptoms improve but others remain, you may have both. You’ve brought up an important topic. Any Fibromyalgia patient who has significant irritable bowel problems, particularly chronic diarrhea, should be tested for celiac disease.


What’s the Latest on Chiari Malformation?

Q: I was wondering what the latest is on Chiari Malformation. This was mentioned early on in the study of FMS, and surgery used to be performed with some purported “successes,” but I haven’t heard much about it lately. Have your writers and editors heard anything lately? – Lynn

A: The subject of Chiari Malformation, a congenital malformation at the base of the brain, and whether or not it is related to Fibromyalgia, has been a controversial subject for several years. It was hoped that this might be the answer for many FM patients. However, that has not proven to be the case. In a recent interview Dr. Andrew Holman, a rheumatologist and FM researcher affiliated with the University of Washington, stated that Chiari Malformation in FM patients is quite rare.


Same Ingredient, Different Results?

Q: How can these two supplements – Fibronol™ and FibroBoost® – which contain the same ingredient… [promote improvements in both energy and sleep]? One would think that the main ingredient, Seanol-F (the only one in the FibroBoost®), would keep one awake. Can you explain? – Susan

A: You bring up a very understandable question. The way it may support both sleep and energy is the same way a person with normal energy during the day can have the ability to sleep at night. It may actually help a person get in the routine or “groove,” so to speak, of normal sleep and wake cycles. I hope this helps.


Why Are Supplements so Expensive?

Q: As an FM and CFS person for over 18 years, I have read and seen so many dietary supplemental offerings for people who have these syndromes. Has anyone ever really thought about these patients when it comes to the cost of some of these supplements? A lot of us are on SSD and can't afford these products. So I ask again, are you in it to get rich or really help these people with their medical problems? – Whitemustang

A: We can’t speak for other companies that sell supplements. However, we can assure you that ProHealth does everything in its power to keep prices as low as possible. (When you compare the price of supplements to most pharmaceutical drugs, supplements are significantly less – but because insurance pays much of the cost of medications, they often cost the patient less.) If you have any question about ProHealth’s motivation, please read the profile of its founder, Rich Carson – particularly the sections, “ProHealth Beginnings” and “ProHealth Today” in the ImmuneSupport.com archives http://www.immunesupport.com/library/showarticle.cfm/id/7531/


Which is the Best FM Research Organization?

Q: As an FM sufferer, I’d like to know which is the best, most productive, most “legitimate” research organization to whom I can make a donation.

A: The majority of Fibromyalgia research is funded by the National Institutes of Health or by pharmaceutical companies. Private nonprofit research organizations tend to focus on a specific theory or type of research. Which one you choose to support may depend on how you feel about their particular area of interest. Following are three legitimate FM research organizations. Check out their websites for more information about how they spend their research dollars.

n National Fibromyalgia Research Association (NFRA) – Research focus is on chiari malformation and cervical spinal cord stenosis as they may relate to FM. In addition to funding research, the NFRA supports FM awareness and physician education programs. See [ http://www.nfra.net/fibromyalgia-nfra-year-in-review.htm ] for a 2006 report.

n American Fibromyalgia Syndrome Association (AFSA) – Will only fund research projects that apply to both FM and ME/CFS. The last funded project reported on their website was in 2004. See [ http://www.afsafund.org/research.htm ] for a list of all the research projects they have funded.

n Fibromyalgia Research Foundation (FRF) – Focus is solely on hypothyroidism and thyroid hormone resistance as they relate to FM. See [ http://www.fibromyalgiaresearch.org/aboutfrf/accomplished.htm ] for a list of what they have accomplished.


Does the CFS Name Change Affect FM?

Q: How does [the CFS name change] relate to Fibromyalgia? I have an intense condition that may or may not be named correctly. Also, how does this relate to lupus and some of the arthritis conditions? After many years, I have been diagnosed with Fibromyalgia and osteoarthritis. – Valerie

A: Changing the name CFS to ME/CFS will not affect Fibromyalgia, lupus, or any form of arthritis. Although these illnesses have many overlapping symptoms, they are each a distinctly different disorder. It’s important to note, however, that it’s not unusual for someone to have more than one of these diseases. A good rheumatologist should be able to identify which you have.


Looking to Connect With Others

Q: Is there an online FM/ME group or chat room that I might connect with to have some contact with other people? – Sophia

A: Absolutely. ImmuneSupport.com has both a chat room and a message board where you can connect with other FM/ME patients any time. You’ll find a list of the chat rooms available at: [ http://www.immunesupport.com/chat/forums/chatrooms.cfm?B=FM ] You’ll find the FM/ME message board at: [ http://www.immunesupport.com/chat/forums/index.cfm?b=FM&CFID=34198588&CFTOKEN=88425526 ]

Read the following letter from one of the chat room/message board participants:

The chat room and message board for FM has been helpful for me in so many ways. I found out that many things I’ve suffered from are common in folks with Fibromyalgia. It gave me great comfort to know that I am not the only one and that these things aren't a separate problem but part of the same condition. It has also helped me greatly to know folks go through the same misunderstanding as I do from family, friends, and even doctors. Well, they say misery loves company and your site is definitely a good version of that saying. It really does help to know that I am not alone in my daily pain and frustration. I am so thankful for your site. – Heather


Note: The information provided here has not been evaluated by the FDA. It is not meant to diagnose, prevent, treat, or cure any illness, condition, or disease. It is extremely important that you never make a change in your healthcare plan or regimen without researching and reviewing it in collaboration with your professional healthcare team.

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