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Fibromyalgia Debate: Speak Your Peace
It has recently been brought to my attention that several readers have considerably mixed feelings on various topics in Fibromyalgia research, treatments, etc.. So I have created a place for readers to speak their peace. Each topic will last for two weeks and if you have anything to say on the topic feel free to post your comments. This is not a place to knock down anyone or any treatment it is merely a place for you to be heard and get your emotions out.
“The only rule for this page is you are Respectful! It is not a school so treat it as such.”
The First Topic
Guaifenesin Protocol-
There has been much debate recently on the effectiveness of this protocol on patients with Fibromyalgia. If you have tried this Protocol or know someone who has feel free to share your experience.
New Topic:
Medications for Treating Fibromyalgia Vs. Alternative Medicine/Nutrition
Please feel free to leave any opinions on this topic in the comments section. Lets try to make this a great page and participate regularly. Thanks!
Next Topic:
Fibromyalgia Advertisement Too Much or Not Enough?
Over the last few months I have seen a rapid increase to advertisements of Fibromyalgia treatments and products on television. I am not so sure if the adversements are bringing good promotions and attention or hindering our education on the topic?
Does the advertising hinder the publics view of the disease in a bad way? Do you feel that the new drugs for Fibromyalgia are affective? Or distracting people from continued and much needed research?
Post your opinion on the topic below. Look forward to hearing from all of you!
*Note: if you have ideas on the next topic for debate please send an mail to fightingfibromyalgia@gmail.com. Thanks for your support. The views and comments of this page are not necessarily those of the blogger. Comments will be posted within 24 hours.
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9 Comments »
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Maija Haavisto Said:
on August 19, 2008 at 8:22 am
There is absolutely no evidence to support St. Amand’s theory. The fact that many people have tried to corroborate his findings but haven’t been able to surely says something. There was a large placebo-controlled trial of guaifenesin for fibromyalgia – one of the most rigorous FM trials ever – and they did not find any benefit to it.
There is also no scientific rationale for the obsessive salicylate avoidance. The only clear justification is that it can be used to explain why the treatment doesn’t work – failure to get better can always be attributed to salicylate exposure. Maybe you had accidentally a huff of your partner’s hairspray?
Jay Goldstein, the best CFS/ME/FM doctor (unfortunately now retired) did use I.V. guaifenesin as a treatment for CFS/ME and FM, but he shuns Amand’s theory. He believes that guaifenesin is an NMDA antagonist. I haven’t been able to find clear evidence of this, either, but if true it would make a lot more sense than Amand’s goofy ideas.
Guaifenesin also has some muscle relaxant properties (the muscle relaxant methocarbamol is a derivative of it) and has been shown to improve analgesia caused by acetaminophen/paracetamol. So it can help FM, but most likely that has nothing to do with Amand’s theory or protocol, and the salicylate avoidance can be quite unhealthy, considering that you have to avoid many vegetables because of it. Many treatments may work for reasons entirely unrelated to those that are claimed to be behind them. For example, acupuncture does work for some conditions, but it does not prove the existence of “meridians” in human body. And, there is always the placebo effect, which does _not_ mean that the illness is “all in your mind” or psychiatric.
One thing to keep in mind is that guaifenesin lowers the blood levels of uric acid – good if you have gout, but in CFS/ME the levels may actually be too low (there is no information about fibromyalgia to be found) and many effective CFS/ME treatments (such as inosine pranobex/isoprinosine) are based on raising the levels of uric acid. Guaifenesin can also cause kidney stones.
There are many treatments for fibromyalgia that are based on sound, evidence-based science and many of them have been shown to work, so why not try one of them before trying something that was shown ineffective in a rigorous clinical trial…
Trish Zanetti Said:
on March 2, 2009 at 3:33 pm
You do not have to avoid the eating of vegetables on the Guai Protocol, only avoid Salicylate containing products on your skin, as it will be more readily absorbed into the bloodstream, or in concentrated amounts in supplements.
I am on a support list where I hear from people every day who have gotten better on the Guai Protocol.
Please tell me about the other treatments that work??
All I ever hear about is people doped up on painkillers and
anti-depressants.
I will be trying the Guai Protocol and I have found much
increased energy by following the strict Hypoglycemic Diet recommended by Dr St Amand, which gives me some
faith in his theories already.
Lorna Proctor Said:
on August 25, 2009 at 3:32 am
I have Fibro and MFS. Tries the Guai protocol for a year in conjunction with low glycemic index diet and got the Fibro under control. It has now flared up seriously again and am using guai plus everything the docs throw at me. The only time I don’t have fibro is when I am truly non-stressed – a rarity for me. I suspect there is a genetic component to fibro, as well as inadequate stress coping mechanisms plus stress overload. That’s probably why more women than men experience fibro. Am sure if it had been the reverse, a cure would have been found by now!
Bill Bartmann Said:
on September 20, 2009 at 5:46 am
Excellent site, keep up the good work. I read a lot of blogs on a daily basis and for the most part, people lack substance but, I just wanted to make a quick comment to say I’m glad I found your blog. Thanks,
A definite great read.. <a href="http://wiki.hudson-ci.org/display/~bill-bartmann"
-Bill-Bartmann
Brian Moore Said:
on September 25, 2009 at 3:41 am
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Online Stock Trading Said:
on September 30, 2009 at 5:35 am
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Sexo En Publico Said:
on October 10, 2009 at 4:14 pm
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kempozone Said:
on October 12, 2009 at 9:19 am
I‘m sure many of you are like me and one of the first things you do in the morning is head here and check out the new post. Along with seeing the new posts, I’m also always checking out the blog roll rss feed and watching them grow, or shrink sometimes. In one of my past …but all in all excellent site. Keep it up!
Donnieboy Said:
on October 12, 2009 at 10:39 am
Just wanted to drop you a line to say, I enjoy reading your site. I thought about starting a blog myself but don’t have the time.
Oh well maybe one day….