Looking for Doctor and or Support Group

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ??????, Dec 2, 2008.

  1. ??????

    ?????? New Member

    My daughter was diagnosed with Fibromyalgia a year ago and lives in Colorado Springs,Colorado.She is a Military spouse and I am trying to help her find medical help and or a support group in her area.She did see a doctor in Denver but it is too long of a drive when she is having muscle spasms in her hands and legs as well as pain and weakness. And for some reason,she has not been able to make a return appointment with that person.

    I have Eosynophyllia-Myalgia Syndrome (EMS since 1989) and I know we take a lot of time with the doctor. I was told I could not make another appointment after I had been seen the same doctor for many years because"you people just take up too much time for an office visit".

    So if you know of help for her in the area of Colorado Springs,CO. Please let me know.
    Thank you.
    Donna
  2. kat0465

    kat0465 New Member

    Hi Donna,
    i know theres a place on here that gives good Dr's all over the country, so try that. as for support Groups i think they fibro association has some listed.
    what is Eosynophyllia-Myalgia Syndrome? if you dont mind me asking. good luck with your Dr hunt, i know it's a pain to find a good one!! Kat
  3. ??????

    ?????? New Member

    EMS was a disease discovered in 1989 in contaminated L-tryptophan. I had taken it for muscle pain in my neck from a dislocated disc. It had been recommended in various"health magazines" as an old time remedy for sleeplessness, pain etc. I took it for about three weeks with no resolution to the pain. I began having severe muscle pain and swelling,mouth ulcers,weight gain due the the muscular fluid,my hair began to fall out,severe almost constant muscle spasms and twitching.Just about every body system was affected. I saw a Rheumatologist who did multiple,multiple tests including a muscle biopsy. This went on for three months,before I heard on CNN that several strange cases had popped up in Arizona and the CDC in Atlanta was looking into contaminated L-tryptophan
    .
    I have had since that time multiple hospitalizations for many different reasons.Close to death once,confined to bed for 3 months due to inflammation in the main artery in my leg. Enough.

    There were many deaths and many others much worse than I
    .
    Some of my symptoms subside for a while,then return. I take one day at a time and try to be happy each morning. If not, who wants to talk to a complainer.

    I thank you Kat for answering my request and I hope I have answered your question
    about EMS. The web site can explain it much better,also Yahoo has an EMS group.

    Blessings to all,
    Donna from Fla


  4. sweetbeatlvr

    sweetbeatlvr New Member

    just wanted to say, i'm sorry you have to deal with such a horrible illness.

    there is a *sticky* thread at the top with a Good Doctor List. check that out.

    i hope your daughter can find the help she needs.

    i know how hard it is, looking for help, i am trying for myself right now too.
  5. Larac.

    Larac. New Member

    The name of the support group is Daily Strenght.com I found it and also alot of information--
    also prohealth.com---they have alot to offer and discuss their symptoms and treatment with a dr who goes on line 1 time a day to check in with everyone--

    hope it helps Larac..
  6. kat0465

    kat0465 New Member

    so basically you have this disease from a bad supplement?? my God thats awful! is the damage from the disease reversable?? or will you have to deal with aspects of it from now on??
    Im telling you when you think about all the things that can happen to a human being, it's a wonder anyone is walking around healthy! i have been sick all my life, but never this sick! i just wish we could all wake up & be healthy & whole. I'm gonna put you on my Prayer list, if thats ok. Hope your better soon & finding a great Doc!! {{ Hugs}} Kat
  7. ??????

    ?????? New Member

    Dear Kat,
    Thank you for your thoughtful reply. Yes I got the disease from a contaminated health food supplement,
    No It is not curable. I have quiet times then everything goes downhill. I am not as severe as in the initial few years and I have God and my Oncologist to thank for that. Also my pain management Physician..
    but like all of you we have our battles and a lot of educating the doctor's who have never heard of the disease or don't want too.

    Thank you.
    Blessings and better health,
    Donna
  8. ??????

    ?????? New Member

    Thank you for the information,I will send it on to my daughter.

    Blessings and Better Health,
    Donna
  9. ??????

    ?????? New Member

    Thank you for your help. Good luck in your search.

    Blessings and Better Days,

    Donna
  10. ??????

    ?????? New Member

    Thank you for the name. I am sending it to her this morning. You are so thoughtful.
    Blessing and Better Days,
    Donna