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ME/CFS and Fibromyalgia

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Emmanuelle, Feb 7, 2011.

  1. Emmanuelle

    Emmanuelle

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    I've never started a thread. Hope I'm doing the right thing in the right place ...

    Just wondering what people here think about the idea that ME/CFS and Fibromyalgia are the same illness-- as opposed to two illnesses with overlap, or that one can have concurrently.

    I've been following the Guaifenesin protocol of Dr. St. Amand, who is 100% convinced that it's all the same illness (FM) and that people whose first symptom is "fatigue" are just starting with high pain thresholds, (until the disease wears down the system.) I'm sure I'm paraphrasing him poorly, but that's the basic idea.

    I'm certainly not convinced ...

    Just curious. Any thoughts? I've come to expect plenty of opinions here. (Let the sparks fly ... );)
  2. CBS

    CBS Senior Member

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    The recent (and some not yet published) gene expression research by Alan an Kathy Light sheds "light" on the question of whether or not CFS and FM are the same (I'm using the term CFS because that's what the Lights use - I suspect that they really mean ME).

    According to the Lights, there are actually three patient groups; CFS, CFS with FM-like pain and FM with no CFS-like PEM. There may be some similarities in terms of genetic expression but a soon to be published study shows that CFS and CFS with FM-like pain syndrome are very similar but that patients with CFS and PEM (regardless of the presence or absence of FM like pain) are quite distinct from patients with FM alone.
  3. Esther12

    Esther12 Senior Member

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    Suffering from a connective tissue disorder is the number one predictive factor for CFS, and it's easy to see how that could be related to FM. I expect the pain of FM would be really tiring... (lol... I'm just rambling here. I have nothing to add).
  4. kat0465

    kat0465 Senior Member

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    my doc, who is a aids specialist, but sees tons of us. thinks they are the same disease,but thinks cfids/me is a more severe form.
    it makes sense.

    Kat
  5. CBS

    CBS Senior Member

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    I've never heard this nor have I every seen any studies to this effect. I can see where chronic pain of any kind (including FM) could be related to chronic fatigue (small cf) but I'm unaware of any predictive link between connective tissue disorders and ME. Do you have a reference?
  6. Nielk

    Nielk

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    Where did you get this information from? This is a novel idea to me too.
  7. Emmanuelle

    Emmanuelle

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    Thank you. Interesting. (I'm sorry. I don't know what PEM is.) ?
  8. Emmanuelle

    Emmanuelle

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    Oh-- I think I figured it out: post exertionnal malaise? I forgot. How unusual ...
  9. Esther12

    Esther12 Senior Member

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    I probably was too blunt with that... tired and stupid at the moment. I have seen it reported a number of times, but shouldn't have passed it on without looking in to it. It's less exciting that it sounds though, as there aren't many competing or consistent predictive factors for CFS.

    I've just had a google for sources, and not turned much up...

    This is generally negative although says:

    CONCLUSIONS: These findings do not consistently point in the same direction of an abnormality in connective tissue. Patients with CFS did have lower blood pressure and more extensible skin but lacked the most important parameter indicating constitutional laxity, ie, joint hypermobility. Moreover, the collagen metabolism measured by crosslinks and hydroxyproline in urine, mainly reflecting bone resorption, was not different. The unexpected finding of stiffer arteries in patients with CFS warrants additional investigation.

    http://www.ncbi.nlm.nih.gov/pubmed/15805343

    This review says: "From the available scientific literature, it is concluded that generalized joint hypermobility is more common in both FMS and CFS patients compared to healthy volunteers." edit - this journal is a rather alternative one. I'll try to have another look later.

    http://www.bodyworkmovementtherapies.com/article/S1360-8592(05)00026-4/abstract


    Sorry if I got people over excited.
    Last edited: Dec 4, 2013
  10. WillowJ

    WillowJ Senior Member

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    joint hypermobility is common in ME/CFS (I don't know about FM), in addition to the negative study above, there are some positive studies, although it seems unclear what pathological significance it has:


    Nijs J, Aerts A, De Meirleir K. "Generalized joint hypermobility is more common in chronic fatigue syndrome than in healthy control subjects." J Manipulative Physiol Ther. 2006 Jan;29(1):32-9. PMID: 16396727
    http://www.ncbi.nlm.nih.gov/pubmed/16396727
    Barron DF, Cohen BA, Geraghty MT, Violand R, Rowe PC. "Joint hypermobility is more common in children with chronic fatigue syndrome than in healthy controls." J Pediatr. 2002 Sep;141(3):421-5. PMID: 12219066
    http://www.ncbi.nlm.nih.gov/pubmed/12219066
    FM is common in other autoimmune and neurologic disorders such as Lupus, MS, etc.


    Naschitz JE, Rozenbaum M, Rosner I, Sabo E, Priselac RM, Shaviv N, Ahdoot A, Ahdoot M, Gaitini L, Eldar S, Yeshurun D. "Cardiovascular response to upright tilt in fibromyalgia differs from that in chronic fatigue syndrome." J Rheumatol. 2001 Jun;28(6):1356-60. PMID: 11409131
    http://www.ncbi.nlm.nih.gov/pubmed/11409131

    FM and ME/CFS do have some some similar pathologies and I have no trouble saying they are related, but they are not the same. ME/CFS has an immune dysregulation which has not been found in FM, and which is totally ignored by doctors who treat CFS as a variety of FM.
  11. ukxmrv

    ukxmrv Senior Member

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    Why "let the sparks fly" Emmanuelle?

    It sounds as if you know people will have different opinions and what these will be.

    If you have a specific question that you need an answer to why not go ahead and ask it. The group contains some seriously ill people and it's not fair to waste their time being provocative for no good reason or to stir up pointless arguments that have been discussed to death over and over for 10+ years.

    Are you really asking "is Dr Armand a quack and why am I paying him"?

    or "is taking the Guai a complete waste of my time and money as I have ME and not FM?"

    or "why would a doctor say that one disease is the same as another and does it have anything to do with selling a cure that may help one but not the other"?

    If you have worries about your doctor why not ask him to justify his beliefs straightout instead of posting here?
  12. taniaaust1

    taniaaust1 Senior Member

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    Completely different illnesses I believe thou they share many things and by having one, I think that may make one susceptable to getting the other.

    I have had both CFS/ME and FM, I have the FM as part of my CFS/ME but now thou dont have FM any more, only the CFS/ME.

    My nanna thou has FM but not CFS/ME, she struggles to understand my illness as it is different to hers. She has no understanding of PEM and thinks exercise would help me.

    One quarter to a third thou of FM people, do end up getting CFS/ME.
  13. Emmanuelle

    Emmanuelle

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    Thank you everyone for your helpful responses. Much appreciated.

    To ukxmrv:

    I DID ask the question that I wanted to ask.

    Are you assuming that I am not seriously ill? Why would you assume that?

    I sincerely apologize if I have wasted anyone's time or offended anyone by the manner in which I asked my question. I was NOT being provocative. I'm sorry if the arguments have already been hashed out for everybody else. I'm not asking anyone to argue anything. I was merely asking for opinions because I REALLY RESPECT THE PEOPLE ON PHOENIX RISING.

    I'm not paying Dr. St. Amand a bloody penny. He's not my doctor. I read his book. If I had a doctor, I would ask my doctor-- but I don't. Wish I did ...

    I'm new to this site, but not to the illness. I've been sick for many years and have read dozens of books, tried hundreds of remedies and countless doctors and practitioners. I'm just a sick person trying to cope and maybe feel better. I've been figuring it out on my own, like so many of us, and I was just trying to get a little clarity.

    (I said "let the sparks fly" in an attempt at levity-- yes, anticipating that people might have differing opinions, and having noticed that sometimes "sparks fly" when they do. But that does not mean that I was looking for sparks. )

    Again, I sincerely apologize if I offended anyone. No disrespect was intended.

    Thanks again for all the responses.

    Emmanuelle
  14. ukxmrv

    ukxmrv Senior Member

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    Thanks Emmanuelle. I didn't assume that you were any less sick than people on this forum. Sorry to give that impression.

    I do hope that you get the answers that you need. It's a topic that can cause some nasty arguments and even doctors argue over it. I've seen some heated arguments on groups over just these questions.

    My experience is that I have ME and I have also been diagnosed with FM (but no FM symptoms until 21+ of ME and only after a terrible accident). They have been very different conditions for me but I have met people diagnosed with one or another or both and all from different doctors. One problem that I noticed that is these tend to be from doctors who do not follow a recognised criteria. We all think differently though.

    I've done the Guai and it didn't help one jolt. Wishing you all the very best for the future. Good luck.

    XMRV+
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i have done the gui things along time ago and got a small improvement but when i did more research i found that gui use to be used as a muscle relaxer, so i think gui works in a different way to how its promoted. I got the same effects from gui without having to avoid all the stuff they talk about, but i think it was because of its muscle relaxing effects but seem to get a tolerance very quickly to muscle relaxing effects of gui, maybe why people have to increase the dose. Thats my experience with it.
  16. Ernie

    Ernie Senior Member

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    Well I have FM with PEM and no fatigue and am XMRV positive.
  17. Marg

    Marg Senior Member

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    Here is my story in a nutshell. I was diagnoised with FM in 1987 and put on Elavil, of which I could only handle 1/4 tablet. Every other drug they tried put me in the ER. I did well with that until the flu shot of 1993. Two weeks after that I thought what I had was the flu but was still sick a year later. The rheumatologist that diaganoised the FM told me I now had CFS, they were one and the same. The journey of doctor's started, 6 in 2 years. Nothing was working and I read Dr. St. Amand's book. My massage therapist went to a seminar Dr. St. Amand was giving and learned to map. The body is gone over and the lumps and bumps are recorded. I started Guaifenesin and it was rough but was suppose to be as the lumps and bumps slowly leave along with anything else that was there. I know Dr. Cheney used it at one time and called it a detoxicant. Dr. St. Amand's theory is that because of a problem with the renal tubules calcium and phosphate is not excreded and is redeposited. The protocol is very hard since salicylates can block the Guaifenesin from keeping the tubules open. Nothing can be put on the body that contains them. I slowly saw by my body maps that the lumps and bumps were leaving. I went to CA to see Dr. St. Amand for a mapping and was found to be blocking. It took two weeks to find the blocker..castor oil in my hair conditioner. I continued and was feeling better and map almost clear. I was not 100% but close to it. I was on that protocol for 15 years and followed it to the letter. I again started feeling sick after 8 years of doing fine and some people that I knew on the protocol were saying it stopped working after time. It works very well for some that I think now have to be pure FM. Most of these people are also hypoglycemic, some are helped with a low carb diet alone.

    Two years ago I knew I was getting sick again and could see that Guiafensin was no longer working and I was not blocked. I was in denial for a year until I crashed big time.
    I was lucky enough to get an appointment with Dr. Nancy Klimas last August, she looked at my immune system like no one had ever done. She found that EBV and HHV6 had REACTIVATED, had no idea that was why I was so sick in the 90's. She also found that my killer cells were only working at 5 % and the cytokins were 25% of what they should be. My autonomic nervous system was a mess. Finally I was in the right place, her new clinic in Miami. I had a ton of paperwork to fill out and they knew all about me when I got there. I was amazed, what they remembered, they had done their homework. I had a tilt table test and was found to have POTS. I know now I had it from the start, BP was always goofy, no one got it. I spent a day there, how wonderful they all are..Dr. Klimas. Dr. Daily, Marsha the NP and Hannah, the jack of all trades keeping track of everythng. They all love their jobs and like each other and it showed. YES, in the right place finally!

    I am on Imunovir, a low dose beta blocker and electrolyte drink for POTS, I am also staying on the Simplified Program for the methylation block by Rich Van Konynenburg and have another test on that the fall. That will have been two years. It has improved but still some low numbers. I was already taking many the things Dr. Klimas likes...LDN, CoQ10, L Carnitine, vitamin C probiotics and fish oil. I do take extra B complex along with the actified Bs and Mulit-vitamin in Rich's program. I also take Alph lipoic Acid, selenium and zinc. Yes, I am becoming weary of all these supplements but I am starting to feel better. I still have some flu like days as the Imunovior goes to work and puts the bugs back in their places.

    Dr. Klimas felt it as too early to test for XMRV, better tests will be coming, too many false negatives and what to do anyway. Aids drugs are too toxic unless a person is dying, I believe her she worked with Aids for a long time.

    I have had CFS and FM since that flu shot...that was the trigger. FM did come first though. So for me it is all one big ball of wax. We need a new name!



    We need a new name!
  18. Cloud

    Cloud Guest

    Kat, your post stopped me in my tracks. We all seem to struggle so hard for so many years to find even a half descent doctor, and yet you have found one of the opposite extreme. I'd hang onto this doc.
  19. kat0465

    kat0465 Senior Member

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    "Kat, your post stopped me in my tracks. We all seem to struggle so hard for so many years to find even a half descent doctor, and yet you have found one of the opposite extreme. I'd hang onto this doc. "



    Cloud,
    yes, she is a great Dr. after going to dozens for years i finally found her. i had heard good things and bad, but most of the bad is her staff is awful, but getting better. she is also extremely slammed with sick people. and to my knowlege is still taking patients. honestly i dont know how she does it, and she has 5 kids!

    the really Great thing is,if i walk in her office and ask about a drug, if she dosent think it will do more harm than good, she will absolutely try. like LDN. i had heard tons about it, and asked her if i could try it. without hesitation she wrote the script.when you live in a town where you cant even find a GP to take you just for everyday stuff,because they know i have cfids/fibro. she has been a blessing to me!
  20. aquariusgirl

    aquariusgirl Senior Member

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    Marg
    Interesting that Dr Klimas said aids drugs are too toxic unless you are dying.
    I recently saw Dr Joe Brewer, an ID doc who has spent 30 yrs treating AIDS patients. I got the impression he would put me on the cocktail if I tested positive for XMRV.

    Yes, I am fed up of supplements also. Got a house full of them.

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