Is there a connection between CFS/FM/ME

Discussion in 'Fibromyalgia Main Forum' started by daylight, Sep 17, 2006.

  1. daylight

    daylight New Member

    I think that it is a wonderful thing that people with CFS are getting a more definable name. However I can't help feeling a little left out of the loop. Is FM also a nero./autoimmune/muscular problem as well? My concern is that the medical field will go back to assuming that FM in a psychological problem again. I know that we are all searching for a cure. I was just wondering if CFS and FM are really the same thing? I know that most of my sx. are nero-muscular which makes my immune system gunk up and I have visible joint swelling and hurt in more areas than the 18 trigger points. Am I the only one that feels this way?
    Or am just I nuts?
  2. kelticgirl

    kelticgirl New Member

    I dont know weather CFS and FM are the same thing but i suffer with both, and when i get a flair up of FM my joints swell, and it hurts in more then 18 trigger points, I hope the medical field dont ever go back to thinking it is a psychological problem becouse it took me 7 years to find out what was wrong. Belive me you are not nuts i feel that way sometimes I think its just becouse it is very very hard to explane how we are really really feeling, I find it hard to explane becouse i really dont know whats going on with me the loss of memory tiredness no energy, and at times falling asleep while in conversation, then when im all swollen and i cant move around very well my freinds say "you better get to a doctor" for WHAT! WHAT! can they do, only give more drugs which i dont want to take anymore. So belive me your not nuts.
    [This Message was Edited on 09/17/2006]
  3. Lolalee

    Lolalee New Member

    I have been diagnosed with FMS and CFS. Personally I don't think they are the same, although they may be connected. Some people with FMS do not have post-exertional fatigue which is a hallmark of CFS. These people can exercise and actually feel better when they do exercise. Patients with CFS feel worse when they exercise. Some people with CFS do not have the horrible tender points and muscle pain associated with FMS.

    I think that until all doctors are made aware of a definite lab test that will identify FMS, there will always be those who feel that FMS is psychological.

    It sounds to me like you have both. Have you ever had lab tests that look at your Tcells or your Natural Killer Cells? You might want to read a recent post by jlh entitled "Testing for Myalgic Encephalomyelitis (CFS)".

    The tricky part is finding a physician who treats CFS. I have only found one and no longer live near her.

    Lolalee
  4. daylight

    daylight New Member

    Lolalee..
    I may have both but I'm not sure. I can't exercises at all because I will be sick and hurting for days. I was told when I was first dx. with FM that exercise helped so I joined a gym. The next two weeks I was sick and very sore. After that I only went two time a week for thirty minutes and the same thing happened. Had to get doctors notice to cancel the membership. Now the flare ups are lasting longer and infections are taking longer to heal. My T-cell count is up and down, and my temp. is always very low. Is this the way it is with CFS?
  5. musikmaker

    musikmaker New Member

    I feel there has to be a connection with so many overlapping symptoms.
  6. Hope4Sofia

    Hope4Sofia New Member

    I'm inclined to believe they are different but under the same umbrella if that makes sense.

    I have recently been diagnosed with dysautonomia. This is the malfunctioning of the autonomic nervous system. I also have mitral valve prolapse which is just part of the bigger picture.

    According to recent literature, dysautonomia is of the autoimmune nature - possibly a connective tissue disease.

    The reason this is significant is that they say that up to 75% of people with FM have dysautonomia (probably as a result of dysautonomia. It is also stated that people with Mitral Valve Prolapse syndrome (also dysautonomia) are very frequently mis-diagnosed with CFS as the symptoms are nearly identical. Including the post-exertional malaise.

    It's very worth looking into. There is a lot of information on line.

    Don't feel left alone. A lot of research is being done and there are enough of us out there that are pushing for answers.

    Blessings,

    Sofi
  7. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    HopeforSofia,

    I don't think you were misdiagnosed at all. Leading ME researchers are finding that disautonomia is at the root of FM/CFS which is all ME anyway. Disautonomia is a malfunction of the CNS and they've known for some time that something is faulty there w/ us and our symptoms. Our wide array of seeming unrelated symptoms makes some sense w/ disautonomia at the root of it. If research can really get in gear and stay focused in this direction for us, then we might actually see some breakthroughs like definitive diagnostic tests and treatments in our lifetime.

    I always find it disturbing when doctors get some substantial results when testing us and find something wrong, really only a subset of the larger picture of this disease and then say, we actually found x and y wrong w/ you, so it can't be just ME. It is bad enough that so many doctors treat this as a wastebasket dx, it would be best if we didn't add to the attitude to.


    Jeanne
  8. Hope4Sofia

    Hope4Sofia New Member

    Thank you for your input.

    I also agree.

    I think it is all connected. I think dysautonomia is a big key to all of this and would like them to push further with the research.

    To date I have been diagnosed with restless legs syndrome, migraine disease (actually cluster headaches), TMJ, MVP, IBS, and dysautonomia.

    This is obviously a whole body breakdown.

    Sofi
  9. Marta608

    Marta608 Member

    Hi, I'm a firm believer that CFS and FM are the same thing, just different aspects of each other. I had CFS for 11 years, then during a particularly stressful time (coming off an SSRI too quickly) developed FM symptoms in addition. How lucky am I? lol

    Read some of the posts from Hayleycole who has FM and my post about Neurotransmitters/Dopamine. They might help you.

    Marta