Possible ME

Discussion in 'Fibromyalgia Main Forum' started by thenewme, Feb 11, 2010.

  1. thenewme

    thenewme New Member

    Hi, my question is could I possibly be suffering from me. I have been diagnosed with fm, from 3 doctors and I do believe this diagnoses. I have had fatigue with this but it has gotten worse, I have flares of fatigue witch can last a couple of weeks the longest has been a month. At these times I am not able to do anything but rest. I have learned to pace myself but even doing this does not always help. What has been happeing to me, the only way to describe this is my body shuts down, it is not that I am tired, but my body just can not function. I will go for a little walk at the park with my sis, she drives, I think I am felling pretty good, I love to walk. We do not walk far and there are benches along the way to rest. What happens is I start to get really weak, It is hard to even speak, I need to get to the car so I can recline the seat and even trying to recline the seat is hard because I am so weak, I have a hard time talking, my words are slurred and if I try to say a setence it takes a while because after each word I struggle to get the next out. I have to just lay there it is a very scary feeling, alls I can do is put any energy I have left into tyring to breath because even this is sapping my energy. My sis has to wait till a feel a little better, just enough that I can handle the ride home in the car while I lay down because the car moveing seems to even make me exhausted.

    We get to my home and I have to lay down, she knows not to talk much because I can not even handle listening to any noise at all when I am like this. These episodes can also happen out of the blue while I am sitting down and listening to someone talking, it seems to sap my energy just listing to someone speeking. My family can tell when this is going to happen they can see it happeing and it always comes on so fast, they can tell just by my speech and my movements that I am chrashing. This is not just fatigue it is a total body shut down, It is so hard to even move any body part when I am like this, I usally have to laydown and stay very still untill it passes> something wrong with my keyboard sorry>

    I have all the syptoms of fibro and my doc agrees I probably have cfs to, but I believe it is me from what I have read about it. Sensory overload, and any physicall activitiy can set this off. What scares me the most is one day this my happen and I won't come out of it and end up bed ridden. I am on meds for my fibro, treating each indavidual symptom, allergies, I bowel s, I bladder s, nexium for gastointestonal issues, effexor for deppresion, have had this 10 years before my fm pain and fatigue started, trazone to help with insomnia, and pain meds, and anti-nausea meds for when I get my flue like symptoms which is very often.

    I know that my new symptoms are not med related, because I have some good days also, and have been on my meds way before these new symptoms. I know that we all get fatigue with the fm and the cfs, but like I said this is a diffrent kind of fatigue it seems to shut down my body and it takes all my energy just to lay there and try to breath as I feel like even that is sapping my energy.

    I have been takeing it alot easier because I know what will happen if i over due it. I am not working try to get on disablity been denied twice but my lawyer is appealing it. I have always been high energy, hard worker hate haveing to sit still was always going and going. Was a tomboy growing up, loved to play sports, was never ever a lazy person and still am not, just can not do to much, I still try to go for a walk everyday, sometimes even when I feel it comeing on because I can not stand haveing to stay in the house, so I fight this and always lose. Just wondering if any of this sounds familar to anyone and If this is cfs, fm, or me? Thank you to anyone who took the time to read my post I appreciate it, and hope that you are all haveing a good day, take care Babrara
  2. karynwolfe

    karynwolfe New Member

    Hi barbara, welcome to the forums,

    Wow, i'm sorry to hear you have been dealing with all of this. You sound incredibly intelligent, though, and that will take you a long way, because knowledge is half the battle. I have M.E. and what you describe as total body shutdown does indeed sound like what I go through: It's not just fatigue, it's the "I can't talk, I can't stand, I can't even sit up and there better not be any noise because I'm borderline seizure" type of.. well, like you said, shutdown. And no, forcing exercise does NOT make it better. It can happen at any time, and lasts anywhere from half an hour to even full days, of not being able to function AT ALL.

    How wonderful that your family understands that and tries to accomodate! I know you are going through a lot but remember to thank the people who truly take the time to undersatnd, and tell them how much you appreciate them; it means a lot to them because they often feel so helpless.

    Did you get a viral infection in your past, that really set you off? Besides blood transfusion, an acute viral attack is the number one initiating factor in developing M.E. If you cannot identify a viral infection or acute infection of some type, and have ever been outside (you mentioned a park?) it's worht ot check for Lyme disease via WESTERN BLOT as well: M.E. and Lyme share most of the same symptoms, and besides a western blot, are best told apart by the -patterns- of the symptoms (i.e., when they happen, what makes them happen) instead of the symptoms themselves (i.e., just that they're there).

    I understand your fears, especially because the "fatigue" of M.E and that of FM (and the fatigue with CFS, though that varies so it's hard to really say) are different things to deal with. FM fatigue allows you to push forward, even if you'll pay for it later. M.E. won't even allow you that, you could experience episodes of paralysis if you try, or just plainly pass out because your heart cannot accomodate. But what they do have in common is that they are very unpredicatble, and jsut like with any disease you worry about the future outcome. But you have a huge advantage now that you realize rest will help you! =) I do urge you to try and stretch a little each day, however, if it all possible, because it will help the FM.

    Rest rest rest is the key to helping M.E., it really does make all the difference and can help you recover from the bouts of relapse quicker.

    www.hfme.org is a great place to read about management and possible treatments, and also mentions other illnesses that share the symptoms. There are no cures but there ARE things that make a huge difference! Every person with M.E. has at least one thing they take that helps them a lot, so there has to be AT LEAST one thing out there for you that will improve your quality of life. =) I do worry about you taking those anti-nausea medications though: Look them up online because a lot of anti-emetics are ALSO USED as anti-psychotics and sedatives! These can make us so much worse. Try ibuprofen (400mg if you're not on blood thinners) and see how that helps with the flu attacks (which by the way, are your number one sign that you ened to STOP EVERYTHING and rest).

    Take care,

  3. skeptik2

    skeptik2 Member

    I do think it is CFS. In the States, ME is not a recognized illness anymore.
    You can thank the criminal actions of the CDC for that. Their day will come.

    Meanwhile, I'll tell you the only thing that helps me is SLEEP, at least 9 hrs
    a day, and preferably 10-11. We have some kind of a heart thing going on;
    the blood is not pumping fast enough into our hearts, OR, we have seriously
    low blood volume at times. When your body tells you to get FLAT or get
    hospitalized, DO lie down and stay there! Dr. Paul Cheney says this is a
    life-saving 'compensation' our bodies demand or we will have total heart

    I'd suggest a blood volume test and an Impedence Cardiograph. Call 1-800-
    555-1212 and ask for the BioZ company number. Call them, tell them your
    ZIPcode and they will tell you who does the cardiac testing in your area. Doctors
    are just now beginning to understand DIASTOLIC heart failure, as opposed
    to systolic, and the testing and treatments are totally different from regular
    congestive heart failure. Your dr. can order a blood volume test easily.

    I hope you find better answers than taking a med for each and every
    symptom; the combinations in your body over the long term could be as
    harmful as the CFS itself, in my experience.

    Hugs galore,