Fibromyalgia, guaifenesin

[popsy]

About 8 or 10 years ago I first heard of guaifenesin as a treatment for Fibromyalgia. Last night a local newstation aired a short bit on the NEW treatment for FMS. Guess what it was, yep, guaifenesin. I decided to see what the web had to offer about the subject. I found this site.

http://www.guaidoc.com/GuaiProtocol.htm


The site seems to understand how FMS affects the body but I'm not sure that I concur on the reasons *why*. I hold the opinion (only an opinion, based on my own experience) that FMS is more to do with brain chemistry than phosphates in the cells. However, as I am uneducated in cell biology and can't tell if what is written is bunk or not, I'd appreciate a more educated reading of the site.

I am personally acquainted with a FMS sufferer who tried guaifenesin and found it wonderful. However, she is a known placebo-affected person. Many treatments work miracles for her. For a while. I don't think I can give her testimonial much weight.

It is possible that a useful treatment for FMS could be available but not widely used as there is a wealth of non-information about FMS. My opinion, though, is that if it was that effective it would be more widely used. It's not as if it is _actually_ all that new.

 

[tamiO]

About 8 or 10 years ago I first heard of guaifenesin as a treatment for Fibromyalgia. Last night a local newstation aired a short bit on the NEW treatment for FMS. Guess what it was, yep, guaifenesin. I decided to see what the web had to offer about the subject. I found this site.

http://www.guaidoc.com/GuaiProtocol.htm

Many people are thinking about guaifenesin as a treatment for Fibromyalgia. I told my doctor about it last month. He looked thoughtful and said he did not think that the guaifenesin in my Robitussin was helping but that the shot of alcohol might be relaxing me and helping me to sleep. (sleep is the number one thing to get when you suffer fibromyalgia)

Here is a link:
http://www.sover.net/~devstar/guai.htm

I am gathering up some guaifenesin information, but all the people agreeing with this course of treatment seem to connect back to the doctor from the link I gave you. He is not selling guaifenesin, however there is a possibility he is profiting somehow from his advice.

People with chronic diseases that have no cures are easy prey, especially pain syndromes. Narcotics are addictive, so doctors are very careful in prescribing them.

I am lucky, I have a good doctor who prescribes percocet and xanax for me. He doesn't even charge me for office visits! Neither of us wants me to be a pain pill addict and neither of us wants me to suffer unnecesarily. Most people with chronic pain syndromes are not so lucky.

Fibromyalgia strikes 3 - 4% of the female population and (I think) 1% of the male population. I am glad to see this disease brought up for discussion here. Given the number of members here on the forums, there are bound to be a few of us with fibromyalgia.

There are many people out there who are making money selling quackery to chronic pain sufferers. Everything from herbs and flower essences to magnetic bracelets.

 

[popsy]

tamiO,

I didn't know you were a fellow sufferer. I take Zoloft which does seem to have some effect (though small) on the pain and is helpful with the UT problems.

I agree, the necessity of having an understanding doctor can't be overstated.

Is there a history of FMS in your family? There definitely is in mine.

 

[Dr. Imago]

There is huge debate as to whether or not guaifenesin does anything at all. Many physicians see it essentially as a placebo, even as an expectorant for dry cough, and prescribe it freely to appease the cohort of patients who are unsatisified walking out of the doctor's office without a prescription (and depsite the fact that it is available over the counter).

The only way to be sure would be a large, multi-center, randomized, placebo-controlled study that was sufficiently powered to detect a true treatment effect. Guaifenesin is available in pill form, so this would elminate the "ethanol effect" confounder of the syrup formulation. It is unlikely that such a study would be privately sponsored, however, and unless the NIH or some university takes up the cause, I wouldn't expect this to happen.

-TT

 

[tamiO]

tamiO,

I didn't know you were a fellow sufferer. I take Zoloft which does seem to have some effect (though small) on the pain and is helpful with the UT problems.

I agree, the necessity of having an understanding doctor can't be overstated.

Is there a history of FMS in your family? There definitely is in mine.

I am taking Lexapro to make me happy and regulate my sleep patterns. I also take Vioxx every morning for pain relief. Both of these seem to work well. I also seem to do better grazing all day on low carb foods.

I don't know of any fibromyalgia in my family, but my daughters have some signs that they may have trouble in the future. They both have restless leg syndrome sometimes and they have sleep disorders.

I am still not sure if I have fibromyalgia or if I have it in addition to other things. I may have osteoarthritis and I am going to bug my doctor about x-raying some of my trouble spots and see if I have any signs of it before I start exercising more dilligently.

It's a bitch to have, eh? Hang in there, I am sure they will be coming up with some better treatments or maybe a cure soon enough. Hopefully our kids and theirs may never have to suffer from this sort of thing.

 

[tamiO]

There is huge debate as to whether or not guaifenesin does anything at all. Many physicians see it essentially as a placebo, even as an expectorant for dry cough, and prescribe it freely to appease the cohort of patients who are unsatisified walking out of the doctor's office without a prescription (and depsite the fact that it is available over the counter).

The only way to be sure would be a large, multi-center, randomized, placebo-controlled study that was sufficiently powered to detect a true treatment effect. Guaifenesin is available in pill form, so this would elminate the "ethanol effect" confounder of the syrup formulation. It is unlikely that such a study would be privately sponsored, however, and unless the NIH or some university takes up the cause, I wouldn't expect this to happen.

-TT

Do you think it would hurt to try guaifenesin? Do you see any value in spending research money researching this? Or do you think there might be better places to spend money in the research for a cure...

Any insight would be helpful; I have come to respect your opinions.
Thanks

 

[BTox]

There is huge debate as to whether or not guaifenesin does anything at all. Many physicians see it essentially as a placebo, even as an expectorant for dry cough, and prescribe it freely to appease the cohort of patients who are unsatisified walking out of the doctor's office without a prescription (and depsite the fact that it is available over the counter).

-TT

My wife was prescribed and took guaifenesin during fertility treatments to improve cervical mucus. Not sure how much that played into the entire treatment regimen, which was extensive, but the ultimate goal was achieved. Little guy just turned 8 in nov.

 

[UnrepentantSinner]

I am still not sure if I have fibromyalgia or if I have it in addition to other things. I may have osteoarthritis and I am going to bug my doctor about x-raying some of my trouble spots and see if I have any signs of it before I start exercising more dilligently.

Wouldn't exercising more dilligently regardless be a good thing? The benefits go far beyond osteoperosis or sleepy syndrome prevention.

 

[TruthSeeker]

We've just begun an RCT of a stronger NMDA antagonist (which is one of the actions of guaifenesin) for cancer patients. Of course, no results yet. The available data is not so great regarding pain control but there is evidence that it works for opioid sparing (so, less drug used and fewer side effects). The studies that show pain relief tend to look at postsurgical or neuropathic pain. Fibromyalgia doesn't fall into these categories.

Fibromyalgia responds really well to gentle stretching exercise (like yoga) or low/no impact aerobic exercise like swimming. It takes time and patience though because at first it'll feel like everything is MUCH MUCH MUCH worse.

The best self-help book for people with chronic pain is probably "Managing Pain before it manages you" by Margaret Caudill. Here's a link to it on amazon It might be worth a look.

 

[tamiO]

Wouldn't exercising more dilligently regardless be a good thing? The benefits go far beyond osteoperosis or sleepy syndrome prevention.

Yes, exercise is good and what I need to do. Any exercise is painful and if I do too much I will pay for it for a couple of days. But without exercise, I will atrophy and lose my ability to walk.

I am safe with low impact, or better yet, no impact exercises. I have slowly put on weight with all the down time and I am now up to 190 pounds. (yikes!) I am 5'7" so I have never been so big in my life. My doctor thinks I would do best slightly underweight and that means I have 70 pounds to lose.

I went from from being pretty physically fit to hobbling about with a cane over the last 4 years or so. I have maintained this weight for close to 6 months now, so at least I am not gaining. But between all my medicines and my sedentary tendencies, my metabolism is most efficient.

I will join a yoga class next year. I just want to be careful and do as little damage as possible, because the researchers are hot on the trail of growing cartilage.

I sure don't have sleepy syndrome. In fact, I am pulling an all-nighter tonight. I have some xanax to sleep but I hate taking so many pills. Besides, it's quiet and I can work on my plan for world domination. I can sleep tomorrow.

 

[tamiO]

We've just begun an RCT of a stronger NMDA antagonist (which is one of the actions of guaifenesin) for cancer patients. Of course, no results yet. The available data is not so great regarding pain control but there is evidence that it works for opioid sparing (so, less drug used and fewer side effects). The studies that show pain relief tend to look at postsurgical or neuropathic pain. Fibromyalgia doesn't fall into these categories.

Fibromyalgia responds really well to gentle stretching exercise (like yoga) or low/no impact aerobic exercise like swimming. It takes time and patience though because at first it'll feel like everything is MUCH MUCH MUCH worse.

The best self-help book for people with chronic pain is probably "Managing Pain before it manages you" by Margaret Caudill. Here's a link to it on amazon It might be worth a look.

Thanks! I will check out the book; maybe put it on my wishlist

Who are we and what is "RCT" and "NMDA?"

I woke up one morning in 1997 and couldn't move. My neck had done something in my sleep and I had a pinched nerve you would not believe. I couldn't move much at all for 2 days. Little by little I was able to move around better and I made an appointment with a chiropractor. He helped me out a lot but it still took at least a year before I recovered and could walk normally, etc.

It all went slowly downhill from there. I learned HTML so I could work at home, but I am filing for disability so I can afford all my medicines. I would love to hook up with a Canadian pharmacy and get some of my scripts cheaper.

edited to add: Thanks for listening. I didn't mean to go on and on. Since the Hellcat thing I have tried not to mention my problems.

 

[Dr. Imago]

Who are we and what is "RCT" and "NMDA?"

RCT stands for "Randomized Controlled Trial", and NMDA refers to the NMDA receptor, which is located in the surface of neuronal cells and is activated by the neurotransmitter glutamate. A neurotransmitter/receptor system elicits a specific effect within a particular cell line. This is an important excitatory receptor/transmitter system in the brain. As far as clinical interest in its role in disease states, I'm only specifically aware of the work being done concerning its role is in the so-called "penumbra" effect following infarction of brain tissue (i.e., stroke). But, this has nothing to do with fibromyalgia of course. Furthermore, I'm not aware of the specific area of study that TruthSeeker is referring to.

To answer your other question about guaifenesin, I'm not familiar with how it's used specifically in CFS/fibromyalgia. There are a lot of "protocols" available on the Internet. Still, I would give you this caveat: make sure you do it under a doctor's supervision and that you have a clear diagnosis of fibromyalgia. Fibromyalgia is often a diagnosis of exclusion (i.e., when we can't figure out what else is going on). More specific diagnostic criteria have been developed, and you should make sure that you are indeed suffering from this condition (and not something else) before you start experimenting on yourself . There are specialists who treat only CFS/fibromyalgia patients. I'm sure they'd be most familiar with these protocols.

Good luck.

-TT

 

[Rolfe]

On the subject of chronic pain management, you might be interested in the Bandolier site. I searched the site for guaifenesin and drew a blank, though.

Rolfe.

 

[TruthSeeker]

RCT stands for "Randomized Controlled Trial", and NMDA refers to the NMDA receptor, which is located in the surface of neuronal cells and is activated by the neurotransmitter glutamate. A neurotransmitter/receptor system elicits a specific effect within a particular cell line. This is an important excitatory receptor/transmitter system in the brain. As far as clinical interest in its role in disease states, I'm only specifically aware of the work being done concerning its role is in the so-called "penumbra" effect following infarction of brain tissue (i.e., stroke). But, this has nothing to do with fibromyalgia of course. Furthermore, I'm not aware of the specific area of study that TruthSeeker is referring to.

-TT

Hey ThirdTwin,

Thanks for explaining for me. Sorry I was cryptic.

I only have a moment this morning but here are a couple of links to info about NMDA and pain:


[url]http://opioids.com/nmda/receptor.html[/URL]

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?holding=npg&cmd=Retrieve&db=PubMed&list_uids=11698028&dopt=Abstract


More to follow...