I'm well now, and my road to get there

Discussion in 'Fibromyalgia Main Forum' started by romanshopper, May 19, 2010.

  1. romanshopper

    romanshopper New Member

    I used to come to this board a good deal. I was dx with fibro by a couple of different doctors, one a specialist. I also had a dx of neuropathy. No one knew why - they kept trying to say I was developing diabetes but the blood sugar and ac1 tests were all perfect. I had surgery on one ankle for the neuropathy.

    Anyway, the lyrica and stuff never helped. In fact, I just hated them. All the medicine I got forced on me, I just hated. Tramadol helped me deal with the pain and was the only one that I'd take.

    Anyway, that's where I was when one day I got what I thought were chiggers on my head. Crazy, huh? I spent a night with tea tree oil all over me. Gad I stank. haha Then I got hives. Full body hives that required I had to go to the hospital. They gave me steriods and benadryl. 3 hours later, I broke into a cold sweat, the hives went away, and so did the fibro.

    As soon as I finished the steriods, the hives came back, and the fibro did too. More shots, more relief. Again, when steriods were over, hives all over, and facial swelling - bad. I went to an immunologist. He did some tests, and listened. REALLY listened.

    I have an autoimmune disease. I am allergic to my own blood. When my blood is spun down, he injects the serum, and I get hives right there like crazy. It's so weird. He says it is something like serum sickness. It's been a year and I manage it with antihistamines and usually 5mg steriods every other day. Sometimes less, sometimes more.

    No symptoms at all as long as I manage the histamine in my body. Nerves in feet are 100% better too -I am active every day & getting my balance back.

    My immunologist says I am not the first 'fibro patient' that he has seen do this and has changed my dx.
  2. bigmama2

    bigmama2 New Member

    congrats romanshopper!!!!!!!

    that is great news! so are you saying that you were misdiagnosed with fibro?

    what a strange situation! is there a medical name for being allergic to your blood or serum? which helps you more the antihistamines or the steroids or is it the combo? what antihist do you take and what amount?

    specifically what are the most improved symptpms- pain, fatigue, brain fog, sleep?

    are you using you blood as "allergy shots"?

    congrats again

  3. romanshopper

    romanshopper New Member

    I'm better all the way around - no brain fog, (Used to be a huge problem) no pain - (No pain pills in over a year - even a tylenol!), no stiffness, 'neuropathy' seems gone too.

    It's not duckworth disease, it is autoimmune chronic urticaria for sure, and my doc says it is something more than that...and hasn't really put a name on it, and I don't really care if it has a name or not, I just care that I am SO much better.

    Literally, after I broke out in huge hives, and got my first steriod shot, I felt better.

    I have a different beast to fight now, but steriods DO work - I watch the lymph nodes on the back of my head and depending on how they are, I take 0-20 mg a day. Most of the time just 5mg every other day. SOmetimes it is bad and I have to take a LOT of antihistamines. Hyrdroxine, up to 10 zyrtecs a day (Label is for 1/24 hours)...it really all depends. I work closely with my doctor on safe dosages and what to go 'up' to.

    If I misjudge, I can get pretty sick and have angioedema, so I have a lot of epi-pens around too.

    Allergy tests were all negative, except for my blood serum.

    I still have fatigue problems - but only when I can't keep my levels of histamine under control. For example, couple of years ago I could not walk. This year I have *2** gardens. :)
    [This Message was Edited on 05/25/2010]
  4. HeavenlyRN

    HeavenlyRN New Member

    Thank you so much for sharing your story. That is one of the reasons I love coming here. I literally learn something new every day.

    It is horrible that you had to go through so much before the docs found out what was going on with you - but you must be so relieved to know what the problem was/is.

    Thanks again.

  5. wendysj

    wendysj New Member

    Congratulations Romanshopper!

    It is wonderful to hear that some of us get our lives back. Thank you for sharing your story. It's great news!!!