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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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MSM

gu3vara

Senior Member
Messages
339
Yes, and I crashed badly on it, tooks me a couple of horrible months to get over it. Didn't improve, needless to say.
 

adreno

PR activist
Messages
4,841
Felt horrible on it. I'd recommend ALA, NAC or taurine instead, if you need a sulphur source.
 

Rockt

Senior Member
Messages
292
Well, pretty glowing endorsements so far :) And the doc was raving about it. Just goes to show, you can't just blindly follow their advice.

Any good results out there?
 

baccarat

Senior Member
Messages
188
Went to a CFS-literate doc yesterday. Discussed quite a few things, but most I knew about. However, she told me that many patients have had good success, particularly in the areas of pain and gut issues, taking MSM:

http://en.wikipedia.org/wiki/Methylsulfonylmethane

Anyone tried it? If so, has it helped?

Thanks.

No it didn't work for me either.
Also if it was that effective, you'd probably see a running thread on here with plenty of happy posts...

If I were you I'd go back to your doc and ask her instead for cfs treatments supported by some kind of study, however small.
In any event there are a few quite popular on this site and you could ask her opinion on which would be best for you.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Yes and probably here.

I began taking MSM for allergies shortly after I developed ME/CFS and years before I realized that I had it. I do not have much pain. That is one reason I do not agree with the theory that ME/CFS and FMS are different forms of the same thing. I do have some gut issues, but less than quite a few of the people here seem to have.

There was a time period when I was not able to get MSM. It was over a decade ago, so my memory is a little fuzzy on the details. I think the pain got worse at that time. I was not surprised since MSM is a general anti-inflammatory. It is also used for muscle, tendon, and/or ligament problems. As I recall, when I was able to get MSM again, the allergies and the pain got better, which was what I was expecting.

I dont think I even had gut issues in the early years of ME/CFS. I think that all started with a severe respiratory infection that required 2 rounds of antibiotics, which created a relapse infection that required 2 rounds of sulfa, which left me with a yeast infection that was impervious to 4 diflucan treatments. Needless to say, at the end of that my gut was a mess. I think the illness occurred not too long after I went off MSM, so it is not really possible to say what effect going off the MSM had on my gut. I do not recall any great improvement in my gut when I was able to get MSM again. I was not associating MSM with my gut or paying particular attention to any connection between them. That does not mean that I would not have recovered more slowly without it.

MSM is generally very harmless in a variety of species. I was surprised to see two people here who had a problem with it. That makes me wonder if there is something particular to ME/CFS patients that causes a problem with MSM.

The last I knew, makers of MSM were prohibited from making any health claims beyond that it is a source of sulfur. In actuality, it is primarily used for its anti-inflammatory properties. You might ask your doc more specifically why she is recommending it. If she is CFS-literate, I am assuming that she has had good results with it in other ME/CFS patients. You might ask her if that is so.

I first learned about MSM from a veterinarian. He had me give my horse a loading dose, then reduce to a maintenance dose. I have never seen that recommended for humans, but if you take it, you might want to ask your doc about it. (Unfortunately, I was usually able to get better medical care for my horses than for myself, so have more confidence in veterinarians that physicians.) When the MSM is active in your system, you will likely see an improvement in your hair and nails. That is a result of the sulfur.

P.S. Adreno, do you have or have you had horses? Sulphur is a horse, sulfur is a mineral.
 

Charles555nc

Senior Member
Messages
572
Try apple cider vinegar, malic acid, high dose sodium ascorbate (a form of vitamin c), and eating cloves of garlic with meals
 

undcvr

Senior Member
Messages
822
Location
NYC
I am on MSM and have been for awhlie now. I like it alot and for me it has helped my cfs. I take about 8gm of MSM a day for maintenance.

One thing I noticed about the immune component of cfs is that it is very much related to a viral infection and what you do immediately after that. For example say I fall sick from the cold or flu, initially my body is able to process the virus like a normal healthy person but it is after the virus has left that the after effects lingers. The virus itself causes the immune system to go into overdrive and all sorts of inflammation/autoimmune conditions happen. So you feel like you are sick for months but really the virus has already left and the immune system is just malfunctioning. Of course for many who are in the deeper stages of cfs this could really be true and the virus really is lingering in the immune system.

It is at this stage where I ramp up my omega 3s, msm and all sorts of anti inflammation stuff to bring the immune system down again. It actually works but it takes a few weeks for everything to calm down.

Like many of you MSM did not work for me when I was in the deeper levels of cfs although I suspect it did but it was also causing all sorts of nasty side effects. In retrospect this wasn't a bad thing, just something that the body had to go thru and if you cannot cope with it don't do it. But like everything else the recovery from cfs goes at its own pace. You need to give your body time to rearrange itself at a higher state.

Unfortunately for pple with cfs our bodies have gotten to the stage where we are sensitive to everything, this includes supplements that will work for us. This is probable becos it is not one but so many systems that are messed up and treating one system can and will cause a clog up somewhere else. Kinda explains the multi supplement approach to cfs .

I think that 'feeling horrible' from a supplement is not quite the best way to tell if it works for you or not. I have heard countless stories of pple going back to a supplement again and finding that it works having responded to it badly before. but do keep it on the back burner.
 
Messages
19
depends if you have the CBS mutation. too much sulfur combined with that = a recipe for disaster. i'm surprised i'm the first one to mention this, am I wrong about this?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I would guess that is why some people with ME have a problem with what is generally a benign supplement.
 

Wayne

Senior Member
Messages
4,308
Location
Ashland, Oregon
I am on MSM and have been for awhlie now. I like it alot and for me it has helped my cfs. I take about 8gm of MSM a day for maintenance.

One thing I noticed about the immune component of cfs is that it is very much related to a viral infection and what you do immediately after that. For example say I fall sick from the cold or flu, initially my body is able to process the virus like a normal healthy person but it is after the virus has left that the after effects lingers. The virus itself causes the immune system to go into overdrive and all sorts of inflammation/autoimmune conditions happen. So you feel like you are sick for months but really the virus has already left and the immune system is just malfunctioning. Of course for many who are in the deeper stages of cfs this could really be true and the virus really is lingering in the immune system.

It is at this stage where I ramp up my omega 3s, msm and all sorts of anti inflammation stuff to bring the immune system down again. It actually works but it takes a few weeks for everything to calm down.

Like many of you MSM did not work for me when I was in the deeper levels of cfs although I suspect it did but it was also causing all sorts of nasty side effects. In retrospect this wasn't a bad thing, just something that the body had to go thru and if you cannot cope with it don't do it. But like everything else the recovery from cfs goes at its own pace. You need to give your body time to rearrange itself at a higher state.

Unfortunately for pple with cfs our bodies have gotten to the stage where we are sensitive to everything, this includes supplements that will work for us. This is probable becos it is not one but so many systems that are messed up and treating one system can and will cause a clog up somewhere else. Kinda explains the multi supplement approach to cfs

I think that 'feeling horrible' from a supplement is not quite the best way to tell if it works for you or not. I have heard countless stories of pple going back to a supplement again and finding that it works having responded to it badly before. but do keep it on the back burner.

Excellent post --- Thanks!
 

undcvr

Senior Member
Messages
822
Location
NYC
I have to say that I do not take MSM much anymore and no where near at that dosage. About 500-1000mg once or twice a week.
 
Messages
31
Location
Padova, Italy
Just wanted to share my experience at 5th day of MSM (500mg in the morning with 500mg vitamin C). I have ME/CFS after a very strong monucleosis, with hypersomnia , brain fog, gut problems and memory impairment. I had great success with Provigil (modafinil) but i only could take it twice a week since i built tolerance very quickly.
My MD , looking at the chemical formula of modafinil , suggested me MSM. Haven't tried before. I forgot to tell you that i have Gilbert's Syndrome and a very strange high bilirubin , both direct and indirect (and the direct shouldn't be so high with Gilbert's Syndrome). I tried before Sam-e , Samyr and glutathione with NO effects at all. With MSM , it was amazing. Brain fog disappeared after three ours, hypersomnia a lot reduced and i'm hoping it will work also in the next days . One possible explanation could be about the result of lack of Sulfur in the body. I read a very interesting article about that: http://www.westonaprice.org/health-topics/abcs-of-nutrition/sulfur-deficiency/ .
Hope this can help someone ;)

Fabio
 

hvac14400

fatty & acid : )
Messages
189
i use this for my joints, like 4 times a year for 45 days straight

z92WsPK4DDg.jpg

no any negative or positive effects on cfs.
 
Messages
31
Location
Padova, Italy
Thanks hvac. I think that in case of CFS with liver problems (for example my very high bilirubin, both direct and indirect, even if liver enzymes now are OK, while after EBV infection they have been bad for years) MSM may be of help, but for other CFS types not. by the way , i usually take Longlife or Solgar products to start a therapy. Other products may not contain always what they say ;(