A Warning for anyone with Fibromyalgia or CFS

by LisaRose 19 Replies latest jw friends

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  LisaRose

  I had been hearing about a food supplement that has shown to be a promising therapy for Fibromyalgia or Chronic Fatique Syndrome, a food supplement called D Ribose. I tried it and was impressed with the results, so I have been taking it for the last three months. Unfortunately during this time I have also had intestinal issues, which have gotten progressively worse, to the point it was debilitating, also nausea, dizziness and a mild headache. Last night it suddenly occurred to me that it started about the time I began to take the Ribose, so I looked up the side effects and sure enough, everything I had been experiencing was a side effect, although usually in higher doses than what I was taking.

  I feel pretty stupid for not making the connection sooner, but I have had IBS in the past, plus I take medication that can cause problems also, I just thought it was that. I still should have researched it more before taking it, I would have known about the possibility and stopped taking it sooner. I would still recommend it to anyone who has Fibro or CFS, just be aware of that possibility and stop taking it if you have problems. It really did help me immensely as far as energy and less muscle pain. Most people do not get this side effect, so the chances are good you won't have that. They are also giving it to people with congestive heart failure, it somehow supplies energy to the heart muscles.

  I would be happy to mail my almost full last container of it to anyone who wants to try it. They are usually about $20 through Amazon.
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  jamiebowers

  My husband has congestive heat failure. If you're in the US, I'd be happy to reimurse you the postage.
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  JeffT

  This is a warning to everybody that takes supplements. Just because something is natural and/or organic or whatever doesn't mean its free of side effects. I take a few things myself, but I've researched them thoroughly before doing so.
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  Band on the Run

  Sometimes your body can accept meds/supps if you start at a mini dose and then build slowly. I feel people who medicate themselves based on some Internet articles or Dr. Oz are fools. There are more and more mds willing to try a holistic approach. It seems true of the younger doctors, in particular.
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  Iown Mylife

  Not to hijack the thread but one little-known side effect of Tylenol can be asthma. It happened to two different people I know.

  Marina
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  ballistic

  LisaRose, have you looked at B12 supplements like "Methyl". I haven't got full blown CFS, but have had a spectrum of similar symptoms and it's turned out to be a miracle for me, 23 years after I first started having health issues.
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  Barrold Bonds

  CFS and fibrobylagia are basically made up illnesses with loads of controversy so take whatever makes you feel better
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  LisaRose

  I will look into the B12 ballistic, thank you. I did a bit of research that indicated your body uses some of the B vitamins to make Ribose, so there could be a connection.

  Just send me a PM with your address Jaimie Bowers, I will send it to you, don't worry about the postage. I think this is really great stuff, it just didn't work for me due to the side effects. I had originally purchased it due to a book I read by a Dr. Sinatra, called "stop heart disease now", he had remarkable success in treating heart failure with it as well as with other supplements. My doctors had me convinced I was a heart attack waiting to happen, which turned out not to be the case, so I didn't use it for very long. You might want to get that book.

  So much later I read something about its use in Fibro and thought I would try it. Since I had it on hand I didn't really give it too much thought, but I am glad I tried it anyway. If I hadn't had the side effects I would have changed my life in a very positive way for a very minimal cost. I believe in modern medicine, but I do consider alternative cures, if there is some evidence but I normally do more research before I do, there is a lot of bunk that's for sure.

  BOTR, I was only on a low dose, I still had problems, after two months I went to a higher dose (not knowing it was the cause of my misery), that's when the excrement REALLY hit the air circulation device, if you get my meaning. Sadly, I think this one is not for me. I have very mixed feelings, glad I found the source of a very big problem, but sad I have to go back to the muscle soreness and fatigue.

  But, of course it's all in my head as Barold says, so what am I worried about? Most doctors today think that it's a problem with the nervous system and the pain signals your body sends and receives, they get out of sync and get amplified, but what do they know? Lol, some people, but hey he gives me permission to take anything I want, so he can't be all bad, right?

  Iownmylife, Tylenol is also the leading cause of liver failure, it's quite toxic to the liver, especially at higher doses and/or mixed with alcohol. It has its place, it works in ways other pain relievers don't, but many medications say not to mix with alcohol, it's OTC, so many oeople don't take the warnings seriously or don't read them. In this case they really, really mean it.
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  problemaddict

  Lisa my sister has soft tissue pain and the seeming "cocktail" of things that accompany it.

  In the research I have done, I now firmly believe diet is the primary contributor here in MOST cases. A few people have auto immune challenges, but that is a bit different.

  You can start with essentially a "Paleo" style diet, and maybe even experiment with ketosis. Sugar is your enemy, good fats are your friend. Even intermittent fasting has helped. If you want to do a cleanse beforehand, you can juice, and add turmuric root. Its disgusting, but very anti infmalatory. Better yet take a CO2 extracted oil tinture of it and see if it works for ya.

  My sister had great results when she went off the drugs, started doing some relaxation, and changed her diet via a whole 30 protocol.

  whole30.com

  Just a thought. Ok I'm out!
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  LisaRose

  I have done the paleo diet, I was planning to start it again in the next week. I eat pretty healthy, lots of fruits and veggies, I have been gluten free for 18 months. I do have a hard time giving up sugar, but I try to keep it in moderation, I agree it's the enemy.I have done low carb before and know about the benefits of ketosis, but it tends to flare my issues now, so I have to go the more moderate approach. I don't know if diet is the primary cause, but I do believe it's a part of it. I also meditate, but I have been so miserable with the intestinal issues I couldn't even do it, so I am hoping to get back on track with that.

  Fibro and my other problem (interstitial cystitus) are not easy to treat and there is no cure, but this whole thing is a wake up call for me, I am determined to get better.