Kinda long but need your help please....

Discussion in 'Fibromyalgia Main Forum' started by joannie1, Apr 8, 2003.

  1. joannie1

    joannie1 New Member

    I am very discouraged with the way my life is right now. As you all may know i am not only battling the Fibro pain but also the migraines that are severe and too frequent that brings on neuro pain and weakness with them. I had been seeing a doctor in with my primary to treat the Migraines and although they were not gone they were slightly less then when they began.

    Then a few weeks ago I had to go in for a shot because I could not kick the migraine. I say my primary doctor who sent me to the Neurologist last week. However he was a jerk to me and preached how the migraines won't kill but smoking will. Well, he did "NOT" do a physical exam of any kind to check reflexes or anything. he touched a couple spots on my neck, told me to take topamax. (Which makes me sick and I can't) Begin PT, get with my Rheumo to control the Fribro because he doesn't, and see you in six weeks. HOWEVER, I have more then just the migraines that i wished he would have just shut up for a minute so i could address the problems with him. It is this nerve pain that is killing me or so it seems. I have not slept in so many nights i can barely count. Everytime I just get settled my legs fly and jump everywhere. The pain from both sciatic nerves in my legs are horrid. I have to take flexeral every night or i would not relax but I have tried my pain meds even the ones with codeine and this is not helping me. And have tried even taking more then prescribed flexeral for this pain. also when I am with a migraine I have muscle weakness so badly I can't lift my arms and can barely walk. he didn't seem to care though.

    What should I do? I am truly at a loss here. Do i contact my primary to discuss this issue with her? Or do I go back into see the other Doc with her and say forget the Neuro? Should i try to see the Rheumo? Or do i just wait it out for 6 more weeks? I do not know and I am going absolutely insane from fatigue, pain, and feeling so helpless. I did begin PT today and I believe she is doing myofascial release, I am terribly sore but in a good way I think. She has great ideas and doing them little by little. So, If I dump him I still need to see her i think.

    Here is what has really got me. i wanted the records from being hospitalized from the past migraine so i went to the hosptial and got them. I was floored when reading it. I had the same Neuro complaints that are documented in those records as i do now with them.
    Do you think I me being paranoid or does anyone else think that they are missing something that could be serious and what should i do with the doctoring situation?
    PLEASE help me, I really need you all right now.
    Thank you so much, Big hugs and lots of love to all.
    Joannie
  2. fibrorebel

    fibrorebel New Member

    First things first- take a very deep breath through your nose and let it slowly go out your mouth. Do this 3 times.
    I do this every time I find myself in that doctor induced frenzy of confusion and fibro-fog. Do not go back to the doc who would not even listen to your symptoms (how is he going to treat you when he doesn't listen?). You deserve to be heard, we all do. There has been several posts warning
    that we can have other health related things going on along with these DDs and should not be too quick to blame it all on the FM or CF. Listen to your own instincts and do tell your primary of your concerns espec. re:past hospital records of same complaints. Keep up with PT if that is giving some release. With all the confusion at once it is no surprise you feel overwhelmed.
    Take good care of you. Peace and a Prayer out to you!
    love, Rebel
  3. kerrymygirl

    kerrymygirl New Member

    I get cluster headaches/known as suicide headaches worst
    pain imaginable. I also get migrains both on same side. Myo can be helpful if you have the right p.t. I have found toradol injections have helped get somewhat under control. I also have to catch it with antihistamine & pain med on first sign or I can be in ER. Had 3 shots of demerol once and still was in seizure like activity from headache. Have you tried the ergots or inderal works for some. Midrin is another all have to be before or at onset. I tried accupunture and acccupressure it helped alittle but was to costly for me for results. I lost all the holidays due to cluster flare. So I do feel for you. It really is trial and error. I do not eat cheeses or do caffiene other triggers. Some say fever few I think it is that helps a herb. Hugss,Keep in touch! Oh,how about nasal sprays? Not sure what to tell you about doc since I have the same problem. GRrrrrr
  4. layinglow

    layinglow New Member

    I am so sorry for all you are going through.
    I went through a bunch of neurologists and made no progress with them.
    I finally found a specialist in FM and CFS.
    I would suggest this. Mine is a D.O. so he can prescribe RX'es, and uses vits and supps, too.
    I had the same issues you talked about---feet and legs flying and jerking, and also neural pain. I could not sleep. This new doc I am seeing prescribed Klonopin for me...and it has totally ended these symptoms, with their sleep deprivation. You might consider trying it. It has been a godsend for me, I have been on it for quite a few months now. Migraines have decreased too.
    LL
  5. joannie1

    joannie1 New Member

    just wanted more inputs from you all. Thanks

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