Guaifenesin

[Faustina]

I would like to know what LDN is?
I do have a long-time friend who has suffered with Fibromyalgia for years. She heard about the guaifenesin protocol, so she tried it.
She told me that she never experienced any worsening of her symptoms, but that she began to have less pain. Now she says that she is completely pain-free with no side effects, and she continues to take a daily maintenance dose of guaifenesin. This news from her is so exciting to me. I wasn't interested in the guaifenesin protocol when I first heard about it, because anytime I had ever tried guaifenesin for a mucous problem with a virus or such, I always got side effects from it, and would give up trying to use it to fight the mucous. My friend has done so incredibly well on it, that I can't resist the idea of giving it a try and hoping.
Pray I will function enough during the 'worsening' phase to be able to tend to the necessary things of life, and that it is a successful treatment.
I would be blest to hear from anyone here who has done it and had things workout well.
I understand that avoiding salycilates completely will be difficult for me since I am already so very restricted on what I can eat.

 

[Mirador]

I've taken Mucinex (guaifenesin) for more years than I can remember, as I have had eustachian tube dysfunction all my life. It thins the mucus and helps keep the ear tubes from plugging up. Not the kind with an added decongestant - I avoid decongestants completely due to high blood pressure. Just plain guaifenesin.

I'm sure I've taken it longer than I've had fibromyalgia, but I couldn't say for sure. I've taken it daily for probably 30 years, if not longer.

What I can say is that if it is supposed to eliminate fibromyalgia pain, it doesn't work for me. Either that or if I ever do stop taking it the pain will be intolerable. Double-blind studies have shown the guaifenesin protocol for fibromyalgia to be no more effective than a placebo. There is little support for it among FM doctors. But the placebo effect IS a powerful thing. If you are convinced that something works, sometimes it does.

But as a FM sufferer, my vote is no, it doesn't do a thing for pain relief for me.

(LDN is low dose naltrexone. I'm only familiar with naltrexone due to working at a mental health facility which also treated substance abuse. Naltrexone was prescribed to prevent lapsing back into alcohol or drug abuse. It's used off label to treat pain in a number of conditions, but the jury is out as to how effective it is for all the conditions it's used for.)

 

[JayCS]

Hi Faustina, I just answered you here on the LDN thread, but I'll cut and paste the guaifenesin bit below now... wait a mo...: Here:

I don't think we have anyone doing guaifenesin here at the moment....?
The rationale for taking it would be that it relaxes our fibro-tense muscles like it relaxes cough muscles. It does seem to help some.
A big clinical trial did not show it better than placebo, but praps that wasn't taking care of a small susceptible subgroup.
Another 'problem' is that St. Armand added a lot to it with CBT and his charisma, so just taking the med is going to be less helpful. As he stopped practicing in 2020 his charisma needs to be emulated... ;-P
Relaxing muscles is what many of my supps do, especially the amino acid GABA. I had to watch the amino acids to get the right balance, but more symptoms meant I'm overdosing. I'm wary of taking a med like guaifenesin where you need your symptoms to get that much worse before they get better. But I'm also my ready and willing guinea pig... And it's easy to get and cheap.

On reducing salicylates: Look for new foods (e.g. via lists). When I realized I have MCAS including a histamine problem (but not direct histamine intolerance) my docs gasped and said: How're you gonna get that integrated in your diet, didn't recommend me to try reducing histamine. But having started I realized that it's partly sorting out the dosage, partly it's sorting out what exactly my triggers are, but also being imaginative in looking at food lists or what I see in my (organic) supermarket and trying types of foods I've never tried before but are on my clean list, like bok choi which I haven't tried yet, and quinoa which is healthy and tasty when i eat it instead of rice, whilst it got on my nerves in puffed form in muesli, cos I didn't like the taste and puffed things always make me feel hungry quickly, my stomach needs food wholemeal and solid.

 

[Faustina]

Thank you JayCS. I am trying the guaifenesin now. I do feel worse already, but I am determined to get better. I am already on an anti-inflammatory diet that is really strict. I rely on someone else for food purchases, so as I prep food, it has to be what my family member wants. She is on the anti-inflammatory diet too, but she doesn't feel she can go along with my avoidance of all histamine provoking food and salycilate foods.

 

[CancerSignFibro]

I started the guaifenesin protocol and am in EXTREME pain. I believe it is obviously doing something. The urine is strong smelling.
Is there a doctor in Colorado that anyone is aware of that knows this protocol? Thanks

 

[JayCS]

Is there a doctor in Colorado that anyone is aware of that knows this protocol?

Tried a search yet? Quick one showed me juetersonke in Colorado Springs working with guaifenesin for fibro. Focuses on the "hard to treat patient" aside from insurance...

 

[Faustina]

I am having complications and confusion on the guaifenesin protocol. It seems to be interfering with my asthma inhalers causing me to experience intense painful burning in the upper center of my chest when I use the inhalers. This pain then lingers afterwards.
I also feel very confused about which things I must avoid such as certain supplements that help me. I certainly didn't realize how complicated this would be. I cannot afford to throw out my hand soaps, toothpaste, and other things as money for us is tight. So much for simple guaifenesin fix. I am still determined to get better somehow. Most of the recommended products they do allow are things I either can't afford, or am unable to tolerate. Any suggestions?

 

[CancerSignFibro]

Jay, what do you make of me getting 5x worse on it? It doesn’t have intense pain as a side effect. Could it be pulling this stuff out of the muscles and ligaments? I was forced to a pain doc and told him everything I have been thru and he diagnosed it as psychiatric. My wife wants to Will Smith slap him. Doctors are not informed. I hope this pain settles. I obviously took too much Guai. Tim

 

[sunkacola]

I am having complications and confusion on the guaifenesin protocol. It seems to be interfering with my asthma inhalers causing me to experience intense painful burning in the upper center of my chest when I use the inhalers. This pain then lingers afterwards.
I also feel very confused about which things I must avoid such as certain supplements that help me. I certainly didn't realize how complicated this would be. I cannot afford to throw out my hand soaps, toothpaste, and other things as money for us is tight. So much for simple guaifenesin fix. I am still determined to get better somehow. Most of the recommended products they do allow are things I either can't afford, or am unable to tolerate. Any suggestions?

Here are my best suggestions:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[JayCS]

I am having complications and confusion on the guaifenesin protocol. It seems to be interfering with my asthma inhalers causing me to experience intense painful burning in the upper center of my chest when I use the inhalers. This pain then lingers afterwards.
I also feel very confused about which things I must avoid such as certain supplements that help me. I certainly didn't realize how complicated this would be. I cannot afford to throw out my hand soaps, toothpaste, and other things as money for us is tight. So much for simple guaifenesin fix. I am still determined to get better somehow. Most of the recommended products they do allow are things I either can't afford, or am unable to tolerate. Any suggestions?

Asthma inhalers reminds me of someone, I think @wiserlady, saying that the cortisone/cortisol in asthma sprays is a problem, but I'm not sure how this would work/be the problem for you. I'd suggest it's enough to see guaifenesin is not going to fit to your other stuff. Maybe another time. As we've said this stuff should be down at the bottom of our list, not at the top!

 

[JayCS]

Jay, what do you make of me getting 5x worse on it? It doesn’t have intense pain as a side effect. Could it be pulling this stuff out of the muscles and ligaments? I was forced to a pain doc and told him everything I have been thru and he diagnosed it as psychiatric. My wife wants to Will Smith slap him. Doctors are not informed. I hope this pain settles. I obviously took too much Guai. Tim

Hi Tim: From what I've read, I doubt 5x worsening is psychosomatic. I also doubt it's an "initial worsening" like in homeopathy which would mean it's going going to help all the better. My experience with my tons of treatments is that the dose is decisive and many of us need only micro-doses of every substance or physio, so yes, maybe too much for you. I personally stop any treatment that increases symptoms a lot without the least improvement, and have another good think about how I'm gonna go about it, after too many bad trials that never did work out but floored me for months... Good luck with picking yourself up again!

 

[CancerSignFibro]

I can't do it Tried 3x now, all with dire results. What is this telling me tho? Is Dr St Amand (guaifenesin theory) right?

 

[JayCS]

I can't do it Tried 3x now, all with dire results. What is this telling me tho? Is Dr St Amand (guaifenesin theory) right?

Hi Tim - You'd never know if he's right without holding on for the 2 or 3 weeks they claim.... (or even years...)
Or you're missing the exuberance from his CBT and charisma... (or of those that are following in his footsteps).
Are you avoiding all salicylates, like they say is necessary?
Have you studied The Truths and Myths of the use of Guaifenesin for Fibromyalgia or Guaifenesin: One Medicine, Several Effects by Mark London? An almost book-length article, not a doc, but I think very well researched, balanced opinion. Saying: Careful, only a few people can expect to get help from it and many stay on it for years despite only limited benefit. (If you want me to I'll go thru it myself, only read a quarter.)
In any case it would seem to me it's definitely not something you should continue without direct guidance by someone experienced.
I'd also suggest it's not worth doing it to prove him wrong.

Two examples of doc treatments my wife wasn't at all convinced of, despite having direct guidance.
One was the Chinese acupuncture I'm now doing, which a graph of my progress proved to me and her it's helping, despite backlashes.
Another was an injection of hyaluronic acid in my spine (while doing a CT scan) which brought me to my knees for days & hurt for months after. The doc said continue, you have no choice, my wife said don't, and I fully agreed with her.

 

[CancerSignFibro]

Jay interesting on hyuronic acid. I was taking some supplements that supposedly increased it and was brought to my knees too. I gave up on the guaifenesin. I just cant stand being 5-10x worse when already suffering. Life with this illness has been hell. God help us.

 

[JayCS]

Jay interesting on hyuronic acid. I was taking some supplements that supposedly increased it and was brought to my knees too. I gave up on the guaifenesin. I just cant stand being 5-10x worse when already suffering. Life with this illness has been hell. God help us.

Oh dear, sorry to hear both, Tim! I actually first read you got the hyaluronic acid in your knees, which is the place it's usually injected in. Only then did I realize what we were on about...

Similarly after months of wondering whether to try L DN I've now got a prescription from my cardio of all people, after she offered to do what is in her power to help me if I had any wishes - that's the kind of doc we need, but of course she knows nothing about it really, so I'm still on my own with my guinea pig trials. But I'm really scared to take it, cos half the people I read of worsened on it (which usually stayed that way, not like St Amand's theory).
(Same cardio who by chance found my phosphate deficiency, also not realizing what a nugget!)