need help and advice please....

Discussion in 'Fibromyalgia Main Forum' started by ktp812, Apr 24, 2010.

  1. ktp812

    ktp812 New Member

    I will try not to make this long..was sick with "flu" november 2004. Have not been the same since. Treated for Lyme for 30 months with no reduction in symptoms. Can't get a doctor to diagnose me with anything. They don't know...

    My main symptoms are chronic physical exhaustion (like i am going to die)
    on and off burning pain in eyes
    muscle twitching/burning/shooting/electrical Pain in my calf and foot. (been told rls)

    The reason the doctors will not "diagnose" me with cfs is because I can exercise..meaning jogging or running. I however can't work full time because it exhausts me. I really have no major pain-headaches-or cognitive problems.

    I do have crashes where I am physically unable to do anything but lay in bed which doesn't help the exhaustion but I can't do anything else.
    It feels like the life has drained from my body and it is very uncomfortable.
    I have no idea what brings on these crashes because they just happen.

    I have lived a very uncomfortable, unproductive and chronically tired life for almost 6 years. I never have even a part of a good, decent day. I never feel rested and somedays I just feel strange. It is at the point where in the past couple of months I feel as though I don't want to even live like this anymore. I can't go on vacations or even out to dinner. I almost missed my son's PhD graduation.

    The most disturbing part is I can't find a doctor who knows why...I can't even find a doctor who knows this disease and understand what I am trying to explain. I also now have chronic yeast from all the abx I was on.

    I live in NH so if anyone can recommend a doctor in my area that would be great. I would travel to Mass-Maine-Ct. Anywhere...I had to travel to NY to see my Lyme doctor. He finally gave up and told me to go see an endocrinologist.

    I do have hypothyroid which is being treated and I am currently weaning off cortef.
    Please if anyone can help here I am really in trouble...I just can't put my husband through anymore of this. Thanks

  2. ktp812

    ktp812 New Member

    I now see the doctor list at the top so I will look at that. I was seeing a nautopathic (sp) for 3 years who was suppose to be a cfs expert but instead got off on the whole lyme diagnosis.
    I believe the top lyme doctors will treat you if there is any chance you might have it. My test was very negative...nothing showed so I have no idea.

    I have been exercising for 6 years because that is the one thing I can still do. I have also run races and felt good crashes at all. I will say that every doctor I have been to says if I can exercise like that then I am lucky. I have now only been walking for about 6 months.

    I am calling the doctor today to get in and talk about my legs (rls). This and the exhaustion have always been basically my only symptoms to last. I think I am just not really sleeping at night because of the twitching and terrible pains etc I have. I fall asleep with Lunesta and sleep through the night but apparently my body is not really resting.

    I feel like I haven't really slept in 5 years. I have never been given any meds for this problem so this is where I am going to start.

    I have been taking magnesium for I will start with my pcp and then probably go to a neuro. Thanks..