Elimination of Niacin resolves 17 yr CFS/FMS

Discussion in 'Fibromyalgia Main Forum' started by slyday, Jul 7, 2004.

  1. slyday

    slyday New Member

    I am a 47 male and I have been struggling with identifiable CFS/FMS symptoms for 17 yrs. Recently I came across a discovery that has given me my life back.

    Two years ago I was given niacin to resolve cholesterol issues. Shortly after starting I started a fibro flare like I had never experienced. I did not tie the two together.

    Some time later I received a call from the 'head' of the VA hospital to tell me that my cpk (still not sure exactly what it is) had spiked and I was to discontinue immediately!

    I got some relief within 3 days but it took about 3 months to return to my normal level of misery.

    Two weeks ago I was in my first meeting with a nutritionist. For some reason during the meeting I had an epiphany. If niacin could cause me so much trouble in pill form, what about the niacin found in food. I determine that I would eliminate all the niacin from my diet so I could to see if there was any effect.

    Going through my pantry there was both bad and good news. The bad news is that niacin is found in everything. The good news was the pantry contained a lot of food that did not contained niacin. It appears that over the years my diet had evolved to include food that did not make me feel bad. Much of the other food were items purchased at bulk at Costco and did make me feel bad. It seemed that I would use the first item or two, if it made feel bad I would unconsciously avoid the rest so that remainder had a tendency to stay around unused for years.

    The other interesting thing was that niacin is used to fortify refined wheat flour (thus one reason it is found in some many foods). What FMS/CFS diet does not advocate elimination of refined wheat flour?

    I started on Friday eliminating any food that niacin listed in the ingredients. By Sunday I had my life back. The pain was almost non-existent, the fibro fog was gone and I seem to be getting a bit more strength as each day goes by.

    The only time that I can remember feeling so well was when I was stationed in Korea eating only Korean food? Thinking about it I realized that the Korean diet might contain massive amounts of MSG but little or no niacin. Many other things that I had struggles with over the years suddenly made since.

    By Tuesday I was calling the company I had left 12 years ago to see if there was a job (I have been scraping by consulting so that I could control my schedule and strength)

    I called my doctors (plural) wanting to know if this could be followed to determine its cause and if it could be correlated to anything else. All I could get from my doctors is that it was interesting and that it was nice that I had found something that help my symptoms. I wanted to scream! Over the years I have found many things that have help my symptoms. NOTHING has given me my life back!

    To make sure I am not getting too dramatic let me explain that I am not cured of FMS/CFS. My approach to FMS/CFS is to find strategies to manage the various symptoms. The point here is that the FMS symptoms were the most debilitating and last to be managed.

    I decided to share my story for several reasons. I am hoping to find someone that may know more about this than my doctors. I wanted to see if anyone else had a similar experience. I wanted others to have the opportunity to learn from what I have found in the hope that some subset of the FMS/CFS community may get some relief also.

    I look for to reading replies.

    TIA and Re,

  2. spazmonkey

    spazmonkey New Member

    I notice how awful I feel after taking niacin...

    So my question is...what do you eat???
  3. Shirl

    Shirl New Member

    Well, your story does not surprise me. I will go do a search in the pantry, fridge, and freezer and see what has niacin in it.

    Eliminating foods from my diet is never a big problem, as I am one poor eater. I am one of those unusal people who eat to live, rather than live to eat!

    Will start with my whole wheat bread, vitamins, milk, and take it from there.

    I have suffered from FM for over 20 years, but this is the first time I have heard this about Niacin, BUT you could have stumbled on one of the things that just might help.

    I do know that I have been 85% better by taking ZMA (zinc, magnesium, and vitamin B-6), and Pro Energy (Malic Acid and Magnesium Glycinate). Between the two, I have only had one bad flare in close to two years.

    Also drinking half my body weight in ounces of water, along with a 1/4 teaspoon of Sea Salt throughout the day. This seemed to get rid of the cognitive problems, along with the magnesium.

    I am one of those people who stopped eating all white flour products, I never was a junk food, or fast food eater, and do not drink sodas either. But will check the wheat bread and see what it has in it.

    Thank you for posting your discovery, one of these days someone like yourself will find the 'answer' to these terrible illnesses.

    The medical profession does not seem to have a clue!

    Again, welcome to the board!

    Shalom, Shirl

  4. Shirl

    Shirl New Member

    You were right, about the only thing I found here that was not fortified with Niacin was a box of natural Graham Crackers, my milk was fine, as it is pure milk with nothing added to it, cream cheese which is homemade, butter that is also homemade.

    HOw in the world are you eating without added Niacin? Just exactly what brands have you found, such as bread, cereal etc.? Would appreciate some help here.

    I did learn that Niacin in large dosages can cause elevated levels of uric acid in the blood. Could this be causing added pain in FM?

    Hope you stop back and give us some help with brands of food you have found that are not fortified with Niacin!

    Shalom, Shirl

  5. tcluna

    tcluna New Member

    niacin is an essential vitamin (vitamin b-3). in the early 20th centry a disease called pellegra was caused by defiency of this and resulted in death. you need niacin to live....

    in addition, you make want to look at your vitamin b-1 in take (thiamine) as niacin and thiamin work together somehow. they need to be balanced.

    hence the b-complex universal principle.
    [This Message was Edited on 09/10/2005]
  6. deliarose

    deliarose New Member

    I throw this out there..... even though i don't know if it is of much use...

    BUT a distinguished Canadian psychiatrist and proponent of orthomolecular medicine (the use of vitamins for treatment of disease) found that Niacin lowers cholesterol levels,
    and that megadoses of Niacin/B3 and ascorbic acide can be used to treat schizophrenia..

    The cholesterol connection may be of interest to FM sufferers.
    Here's a link to his homepage (attn moderator ... all research stuff, not selling anythg.. the man is dead).


    Hope this is not a red herring...
    [This Message was Edited on 01/12/2008]
  7. deliarose

    deliarose New Member

    Actually, I had a quick look at that page, and he talks about treating restless leg syndrome among other things.. seems like it might be worth a scan
  8. orachel

    orachel New Member

    Man, if this is true, do I feel like an idiot! I actually used to take niacin in pill form...gave an interesting warm "flush" across face and shoulders. Don't remember really why I took it...used to take lots of supplements. Man. Please keep us updated on this....I'll feel like a real moron if something I used to take deliberately in pill form helped make me have this illness!
  9. kcollins

    kcollins New Member

    I am happy that you found such significant improvement! I wonder if you have given up a food that was causing the problem such as wheat and that you may have a gluten intolerance not a niacin intolerance? Just a thought - I know wheat causes me problems with IBS symptoms.
    Take care,
  10. HppeandMe

    HppeandMe New Member

    They now sell Niacin over the counter claiming that it will make a man last all night long. In fact, I put it in my husbands birthday card as a joke. The packet read " All Night Long". It only contained Niacin. It was 40mg. I think I will try it on my hubby tonight. I will let you know how it goes.
  11. orachel

    orachel New Member

    I'M LAUGHING LIKE A LOON, OVER HERE! YOUR POST CRACKED ME UP! Though, as I indicated above, I'm not a fount of info on Niacin, by any means, but in light of fact that it commonly gives "niacin flush" (just how its referred to, commonly)...Seems to me that it must be increasing the bloodflow, or something to make someone red and flushed and warm feeling, right?

    So...kinda stands to reason that there could conceivably be a possible connection that would lead to male ummmmmmm....shall we just say "virility"? lol Quite a funny post! And btw...thanks for your info you posted on "feeling better poll" re: recent improvements with ffc and sleep. Sleep has been a MAJOR issue for me, and while Klonopin seems to work great for my resless leg issues (which are MAJOR...poor husband has to "duck and cover" in middle of night with my flailing when I stop taking Klonopin!), I'm waking up 5-15x every night and its killing me, and pain/fatigue are just outrageous and none of my meds seem to be helping AT ALL. Sigh...but, on the waaay positive side, seeing my doc on Monday, and will make sure to speak to him about adding Restoril (can't work now, anyway...can barely move! So waking issue won't be that big of an issue for me) or Xyrem for me!!!

    It's wonderful to read what an amazing breakthru you've had in your treatment and comfort/ability levels! Hooray for you! And it sure gives me much hope for the future!

    Hugs and Health!!!
  12. tcluna

    tcluna New Member

    once again niacin is called Vitamin B-3 and is considered "essential" to survive, though tryptophan and nictinamide can be substituted. People with niacin deficit will develop the disease pellegra.

    i urge people to be cautious and do not try this experimentingly without a doctor.
  13. HppeandMe

    HppeandMe New Member

    Thanks Orachel!!!!

    I am glad you read it. I haven't tried it out yet on my hubby he is on the hot seat!!! I will let you know when I do.

    I loved your post!!!
  14. healingnow

    healingnow Member

    It is highly unlikely that Niacin was the offending causative agent of your CFS/FM. I know of no literature suggesting that exposure to Niacin in ordinary doses from food causes any allergic reaction. Indeed, as several commentators have pointed out, lack of niacin leads to a serious disease--this is a well known fact of medical science. It is much more likely that you eliminated or greatly reduced the processed foods in your diet by throwing out the stuff that had added Niacin (indeed, you are no doubt still eating Niacin since it comes in various vegetables and grains) and that this reduction in processed food was the cause of your improvement in symptoms. (Your comment about getting rid of the Costco food tends to confirm this hypothesis.) Indeed, much alternative research has established that sugars, processed foods, preservatives, denatured grains, etc. etc. exacerbate or may even cause conditions like CFS/ME, FM, arthritis, and many other problems. (I have both arthritis and CFS, and changing my diet has helped with both of these, though I still deal with both conditions.) So, if folks want to try to duplicate your positive results, they should eliminate sugars, processed grains, preservatives, empty carbs, etc., not try to take the niacin out of their diets!