Advice/comments for new member?

Discussion in 'Fibromyalgia Main Forum' started by JCJ, Sep 4, 2003.

  1. JCJ

    JCJ New Member

    Friends,
    I've been reading your list for a couple of weeks now, and appreciate all the combined wisdom.
    My experience with fibro is x 8 years now, beginning with interstitial cystitis and UTI's and gradually evolving to include IBS and gluten intolerance along with the muscle pain. Onset was after a period of severe stress, including the sudden death of my 19 yr. old daughter, due to a brain tumor.
    Certain foods will trigger episodes. Soy is a killer, and I avoid anything high in oxalate as well as gluten, dairy, egg, sugar, corn and most starches. Yes, that eliminates about 2/3 of the grocery!
    I happily eat meat, veggies and fruit. Stayed on the SCD diet for 1 1/2 years with minimal help, (actually developing allergies to egg and almond!) and can't tolerate many things on that diet. Tried a holistic doc after going through about 10 different docs with little help. Cannot tolerate many meds and the rheumy told me if I wasn't going to take the medicine, he couldn't help me. My system is SO touchy. I can tolerate Darvocet for pain episodes but have just a few left. Can also use Lorazepam, but am totally out. Holistic docs are reluctant to go that route, so I have some decisions to make. (I can always go back to my internist to get the meds, but I haven't seen him in 2 yrs. and he's a "pat you on the head" type of guy that has no real input.)
    I stay fairly active; take a yoga/stretch class twice a week, as well as watch my diet.
    My cortisol is high; DHEA low - but very small supplementation of DHEA made me lose 5 more pounds, so holistic doc said to stop it. I take 1/2 tablet of Adrenal - all I can tolerate at this point. I've certainly learned more about myself with the holistic doc, she too, seems to be on her own bent and doesn't know what to do with so many sensitivities. I'm not depressed or discouraged - just frustrated. I really don't know in which direction I should be going. Homeopathic meds make me ache, as do herbals. I have bottles of useless stuff in my cabinets. Bowel culture indicates yeast is not the problem.
    Since my blood work is good, my internist says I worry too much, but when my insurance co. went belly up, no other would insure me, so what's in my chart is not worry!
    I live in central Fl. between Tampa and Orlando - tried to see a gastro connected with USF and they will not take a cash patient! Florida list members - has anyone seen an immunologist? Any comments/suggestions?
    Thanks,
    JCJ
    [This Message was Edited on 09/05/2003]
    [This Message was Edited on 09/05/2003]
  2. Susan07

    Susan07 New Member

  3. klutzo

    klutzo New Member

    It sounds like you need to be thoroughly analyzed for food allergies and go from there. Holistics are your best bet for that, as you probably know. If you live between Tampa and Orlando, one of the best holistic clinics in the state is available to you, Wellness Works in Brandon. I am sorry you are having so much trouble getting help.
    Klutzo
  4. JCJ

    JCJ New Member

    Thank you for your help and comments. I AM a patient at Wellness Works, and Dr. Roberts is the one who seems frustrated at all my sensitivities. That's why I'm so frustrated. I reacted to the homeopathics she recommended and couldn't tolerate several other things as well. My last visit was in May and I see her again in October. I'm going to approach her then about taking Naltrexone, to see if it will help my pain perception.
    I like her and to her credit, I did find out several things - one being that I had absolutely no Bifido factor in my stomach, so have been supplementing that.
    The most difficult thing is the weight loss. I don't want to lose any more weight. My diet is sooo restricted.
    I've been working lately on getting my pH balance up, and that has seemed to help my stamina a little.
    Any more suggestions would be welcome,
    JCJ
  5. hope-floats

    hope-floats New Member

    I'm sorry I can't help you, but I'll bump you so other's will notice your post. Good luck to you.
  6. JCJ

    JCJ New Member

    I'm bumping myself back up, hoping to get a little more input.
    Suggestions are welcome....
    JCJ
  7. Dara

    Dara New Member

    I can't answer any of your questions but just wanted to let you know I'm thinking of you. I can't imagine what it must have been like for you losing your daughter. I came very close about six years ago when my youngest daughter was diagnosed with Acute Leukemia. Each day now with her is an added blessing.

    I hope you get some good advice for the others on the board. Gee, I sure wish I was worried about losing too much weight!!!

    Dara