Discussion in 'Fibromyalgia Main Forum' started by gigio, Dec 4, 2006.
Has Guaifenesin helped anyone? And if so, how does it work?
Yes, the Guaifenesin protocol has helped a lot of us here, including me. I have severe long term CFS & FMS, & have been doing it for 16 months now. It's not a cure, but a treatment. For details go to Dr St Amand's website
There is also a link there to the Guai support group's message boards in the US & UK, where you will find lists of salicylate free toiletries, dental products etc.
You will also need a copy of his book 'What your doctor may not tell you about fibromyalgia' which has to be followed exactly. Give yourself plenty of time to read it. Dr St Amand makes no money from the sale of Guaifenesin.
Do be sure to use one of the recommended brands of Guaifenesin; they don't all work. I use the Prohealth ones sold in the store here.
If you need any more help, just post the question here. Jude & Mikie are our experts.
Hi Gigi! I'm just reaching my 9-month anniversary of starting on guai. It is a slow process of reversal (2 months for every 1 year that you have had guai), so for me it will take nearly 2 years. But I am seeing some signs of better hours/days!
Smiffy gave you great advice. It is certainly worth a try as it works for most people. I'm so glad that Mikie nudged me to try it!
We have a group here called Guai Ladies, and if you need help or have any questions, just put that in your post. I had tried everything else that I could find in my 11 years of having fibro, and I can't stress enough how happy I am that I gave guai a shot!
My FMS symptoms are what I consider to be reversed. I've been on the Guai six years but it helped me almost immediately. I am now on a maintenance dose to keep my symptoms reversed.
If you do a search in Title on Guai, you can read our old posts. There is a small group here and we post updates from time to time.
I have been taking Cymbalta for about 3 weeks now and it has really help my pain. Can you take the guaifenesin and cymbalta together and not cancel the other one out?
I take Guaifenesin DM. Couldn't live without it. Definately takes away the pain.
Yes, you can take your existing drugs with Guaifenesin. The only ones you can't take are Asprin & herbal remedies.
I hate to sound negative, but I was on Guiafenesin for over two years, and when I moved to Washington, I went to OHSU, which, and some of you might know, is the Home of Dr. Robert Bennett, highly reknown for his Fibro work. I was told that Guiafenesin did nothing for Fibro patients, and apparently several studies, proved the same. So I stopped the medication and saw no changes. Maybe there are those few, that Guaif. does help, if so great, as they say no pain no gain!! Blessings, Phyllis
Is evidently a good doc but he has a blind spot when it comes to the Guai treatment. He continues to tout the one study which was done as proof that the treatment doesn't work. Even a first-year college student could recognize that this study was so fatally flawed as to be scientifically useless. Still, some good things did come from the study which helped Dr. St. Amand to amend the protocol for greater success. Thousands have been helped with this protocol but it, like everything else, has not helped 100 percent of those who try it.
Where Guai patients have medical professionals to help and support them, the levels of FMS symptom reversal are high. I've seen this for myself in a group in FL where this protocol has changed lives.
It has been a God send for me but I've been commited and patient and followed the sal-free rules. Hidden sals and doses which are too low are usually what cause failure.
It is unclear from your post whether you are using Guaifenesin DM on a daily basis. Plain guaifenesin by itself is safe for long term use. Guaifenesin DM is not safe for long term use. Any other medicinal ingredient added to guaifenesin is not safe for daily long term use.
I do take it on a daily basis 1x in the morning. I called the company that makes Musinex and actually talked to one of the doctors. He said it was ok. Hey it works for me and it surely can't be any worse than narcotics...which I don't take at all.
Whether you are taking the combination drug for the effects produced by the Guai, the DXM, or both. If the DXM is helpful and the doc says it's OK to take every day, it is obvious that he or she isn't worried about it. Other medical professionals usually discourage long-term use of it. DXM is used in OTC meds in very low doses but it is considered a semi-narcotic ingredient. In the middle of the name is the word, Meth, which is what the kids make out of these meds by concentrating them so that the Meth is in much higher doses.
If one is only taking Guai for the effects of the Guaifenesin, it doesn't make sense to add another ingredient which does have side effects, whereas the Guai has few by itself.
If the semi-narcotic properties of the DXM are helpful for our illnesses and the medical community concurs that it is safe for long-term use, it might be helpful. At this time, though, it is not recommended by most for long-term use.
Opiods are used by many to control the pain associated with FMS. If DXM is shown to be no more risky than any of these meds, it might be an alternative. I took Morphine for my pain prior to Dr. St. Amand's Guai Protocol. Most opiods are old tried and true drugs and the incidence of psychological addiction when taken for chronic pain is very, very small.
Just curious--have you tried just the Guai or have you always taken the combo? Do you feel the DXM helps you with pain? I'm not judging, just curious. Thank you.
Mikie, I appreciate your concern. Here's my story.
I had been taking the Guai alone. And I would say it was helping somewhat. I went through the getting worse part before getting better. I was taking 1200 mg a day along with 4 Aleve.
I caught a horrible cold that lasted over a month. At that time I started taking the Musinex DM for the cough. When the cold was over and I went back to regular Musinex the pain got worse. I went back to the DM and it got better.
Several times I have tested whether I need both. I have tried taking one or the other for a period of time and have found that the combination works best for me.
I still have pain but it's not horrible pain like it was before. On occasion I get the horrible pain, usually after I have overdosed on cleaning my house or overexertion at work.
I just take an extra Musinex DM, Aleve and Magnesium, Potassium when the pain is bad. Otherwise I am only taking 600mg Musinex DM once a day. I suppose if you were overdosing on it, it would be bad for you. If you google DM/Fibromyalgia you'll find information on using it.
You're right though...it's not been tested for long term use for FM. I totally trust my doctor. If she say's it's ok it's ok.
Before I started on the DM I couldn't even walk through the grocery store without horrible pain and fatigue.
I was just about ready to slow down at work because I couldn't handle the pace...now it's no problem. Yes I am tired at night. And yes I have pain...but like I said before its not excrutiating like it was before.
[This Message was Edited on 12/11/2006]
Here's the information on how DXM works on FM patients:
Only when there is an allergic reaction, or when abused, does dextromethorphan cause severe side effects.
How Can Dextromethorphan Help Fibromyalgia
While a cough medicine does not seem like it would be much help to those with fibromyalgia symptoms, recent studies suggest that dextromethorphan may actually be a suitable treatment for fibromyalgia patients. In particular, dextromethorphan is thought to be able to relieve:
Dextromethorphan treatment may also help to pinpoint the true cause of fibromyalgia syndrome, allowing for the development of new, more effective treatments.
How Does Dextromethorphan Work?
When it comes to treating fibromyalgia, dextromethorphan works by targeting the central nervous system. For some reason, fibromyalgia patients experience pain sensations that often snowball, becoming very painful. A mere tap on the shoulder can set you off, and then, any future bumps or bruises cause this pain to magnify. Fibromyalgia health care providers often refer to this as the "windup".
This wind up is believed to occur in the central nervous system, and is probably caused by faulty pain messages that are sent between the brain and spinal cord. Dextromethorphan appears to prevent this "wind up" by blocking pain messages from being sent to the brain and spinal cord. In particular, dextromethorphan works on N-methyl-D-aspartate (NMDA), a chemical that transports pain signals from the brain to the spinal cord.
The Dextromethorphan Studies
Studies analyzing the effects of dextromethorphan on fibromyalgia patients were performed by the University of Florida. Published in the Journal of Pain, these studies suggest that dextromethorphan may be extremely effective in the fight against fibromyalgia pain.
The studies involved 24 women, including 14 suffering from fibromyalgia. Each woman was giving continual taps on the head (using a rubber-tipped or heat-tipped, probe) in order to engage her pain reflexes. The force of the taps and the heat of the probe were adjusted to be exactly the same on each study participant, to ensure that pain sensations were the same. The women were divided into three groups with the first receiving 60 milligrams of dextromethorphan, the second 90 milligrams of the drug, and the final group a placebo tablet. After being administered the drug, the study participants were asked to rate their pain sensations.
Upon completion of the study, it was shown that the participants that received dextromethorphan had much lower pain sensations than those who received the placebo drug. Those who received a dosage of 90 milligrams experienced the greatest pain improvement.
Who Shouldn’t Use Dextromethorphan?
Dextromethorphan should not be taken by all fibromyalgia patients. Those who are currently taking MAOI antidepressants should not take dextromethorphan as the two react badly together. Pregnant women or those who are breastfeeding should also avoid dextromethorphan.
When is Dextromethorphan Available?
Dextromethorphan is not yet available on the American market. Clinical trials are currently underway, and the drug should be available to fibromyalgia sufferers in the near future. Be advised that health care practitioners warn against self-medicating with dextromethorphan.
Thank you so very much for this info. I am very happy for you that this is working so well. This may be one of the best kept secrets about treating FMS. If the DXM is not harmful, it, combined with the Guai, may be very helpful to others. We do not know the long-term effects of many, probably most, of the meds we take. I think we have to just get all the info we can and make the best decision based on potential risks versus potential benefits.
I really appreciate your providing all this info. It might be very helpful to others. I'm wondering whether you will be able to switch to just the straight Guai when it reverses the symptoms enough that you do not have pain anymore. Again, very interesting. Thank you.
I was reading the post on dextromethorphan (very interesting), and wanted to let everyone know that methamphetamine is NOT one of the ingredients in this medicine. I'd hate for someone to NOT try it because they thought meth was in it! As an aside, methamphetamine is made in the lab via chemical reaction with either ephedrine or pseudoephedrine. Most states now put these things behind the counter or don't sell them at all because of this.
And no, I'm not a meth user. I'm a chemist!
I'm not sure it does reverse FM, but I do know for now it kills the pain! Thanks for your concern
Thanks for letting me know its not meth. Scared me for a little bit!
[This Message was Edited on 12/12/2006]
NMDA-receptor antagonists in neuropathic pain:
experimental methods to clinical trials
Massachusetts General Hospital,
Department of Anesthesiology,
Harvard Medical School,
J Pain Symptom Manage 2000 Jan; 19(1 Suppl):S21-5
Recent clinical data suggest that chronic pain due to nerve or soft tissue injury may result in the sensitization of the central nervous system, mediated in part by the excitatory amino acids, glutamate and aspartate. Only a handful of N-methyl-D-aspartate antagonists are clinically available. These include ketamine, dextromethorphan, memantine, and amantadine, as well as three clinically used opioids (methadone, dextropropoxyphene, and ketobemidone). This review summarizes the single-dose efficacy of the first two compounds in the treatment of experimental and neuropathic pain. In all examples presented here, NMDA-receptor antagonists with affinity at the phencyclidine site have been shown to modulate pain and hyperalgesia but are limited by dose-limiting side effects. Thus, provided their therapeutic ratio is favorable, NMDA-receptor antagonists may be effective in the treatment of some types of chronic pain.
[This Message was Edited on 12/14/2006]
Sorry for the misinformation regarding meth. I did get DXM and ephedra mixed up in my tired mind. The article I read did state that the DXM is a "semi-narcotic" stubstance and I'm guessing that is why it helps with the pain.
I talked to my doctor today and she said it shouldn't be a problem at the dose I am taking. I suppose if you were taking high doses there could be complications. For me it just takes 30 mg a day.
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