Question for Sujay

Discussion in 'Fibromyalgia Main Forum' started by loopyloo, Jul 10, 2003.

  1. loopyloo

    loopyloo New Member

    I have been diagnosed as having M.E i also think i have FM as i have lots of muscle pain in my back, neck, shoulders,arms and hands and legs it seems to move about and is so bad in my arms at the moment that i cant even pick up a small bread plate as its to heavy and hurts i thought M.E was tiredness and fm was the muscle pain that is severe what do you think i have a friend with FM and we both have the same symptoms i would appreciate your opinion

    Loopyloo x
  2. sujay

    sujay New Member

    Sorry to hear you hurt all over. I suspect you have both illnesses, but some doctors insist on waiting until at least 11 tender points develop. I used to torture patients by sending them back to the rheumatologist until we could make the diagnosis, because, although not universally accepted, it generally gets more respect than CFS, which too many doctors seem to equate with malingering. However, I realized that 1.) that was based on diagnostic criteria set up to facillitate research, 2.) pressing on the tender points would often put my patients in bed for weeks with more severe pain, and 3.) what else could it be? I do think these are both manifestations of the same underlying pathological process. Check out my posts on hypercoagulation if you want more information, and let me know if you have any further questions. I'll get back to you as soon as I can.

    Best wishes to you and your family,
    Sujay
  3. loopyloo

    loopyloo New Member

    I have been to see a ruematologist once in 1996 and once in 2003 and she reconised me and said it may not be a muscular desease but it may be a desease that affects your muscle and she sent me to the doctor who diagnosed M.E he is a specialist for M.E and M.S, but at the time i was not hurting as much as now it seems to get worse as time goes by i even have a cane if it is really bad or to keep my balance as i am having trouble with dizzyness and balance, the doctor gave me some tablets for vertigo and they made me really ill i had only taken 4 of them and (couldn't stand up, had a rash, felt sick, tightening of the chest, and felt like i was going to pass out). so that is the reason i got the cane as those tablets frightened me so much i am a bit scared to take any think new. As well as short term memory loss and the last 3 months everything has got quite a lot worse especially the muscle pain.
    Thank you again
    Loopyloo xx
    (((((((((big hugs to you and your son as i have read about him being sick as well))))





  4. sujay

    sujay New Member

    I'm so sorry that you're having so much trouble. Thank you for your concern about me and my son. Let me clarify for you: He WAS sick, but now he considers himself WELL. He is physically active, despite the reading and the video games, and he loves his fruits and vegetables. That and the resilience of youth (plus the fact that he had a good course of Biaxin when he first became ill) seem to be standing him in good stead. I'm tapering him off the colostrum, and he seems to be thriving (and growing like a weed).

    I am also doing well, though I still have to rely on regular doses of colostrum and take all my supplements faithfully. I'm considering a course of Biaxin, too, but I may have to be on it long-term, and I just can't afford to herx right now, as I'm too busy taking care of patients, rebuilding a reliable financial base and making sure my baby (who is about to tower over me) is OK.

    So you can see why I appreciate your caring. Even when I was at my sickest, lying in bed worried that I wouldn't be able to get out of the house in case there was a fire, I could see the light at the end of the tunnel. Paying attention to the possibility of hypercoagulation was helping my patients already, and I saw no reason why it wouldn't help me, too.

    Thank you for caring, and for taking the time from your busy schedule to share your concern. Please remember that there is hope for you and your family, too. I will keep you in my prayers.

    Love,
    Sujay
  5. loopyloo

    loopyloo New Member

    I haven't been on the board for a while as i have been sick since April i went back to work a few weeks ago, then i went on holiday to spain Mijas in the mountains we had a beautiful villa with a pool i was very worried about walking about to much and swimming in case i got ill, but i had a loverly time and i was swimming every day in the pool and if really helped, and i didn't hurt 1 bit, know i am back i am starting to hurt again quite bad and i think stress is the main thing that starts it off, thank you for taking the time to reply i hope you are both well
    big hugs to you and your son
    love from Loopyloo xx
    [This Message was Edited on 08/31/2003]
  6. sujay

    sujay New Member

    So glad you had a chance to get away. It sounds delightful. If we could only find a way to take time out from our busy lives on a regular basis to find that sense of calm and assurance that comes when we manage to get away from stress. Just giving up stressing about things over which we have no control ought to go a long way. It's just so hard to leave things in His hands. Why do I keep thinking I can do a better job all on my own?

    I hope you're able to build on your experience. Maybe you'll be able to just close your eyes and imagine yourself back sometimes when you need a break.

    Best wishes,
    Sujay