Recovering from a flare, finally got a date with the specialist

Discussion in 'Fibromyalgia Main Forum' started by cc0526, Sep 9, 2006.

  1. cc0526

    cc0526 New Member

    I just wanted to thank you all for your feedback. I am finally up and around to my baseline (knock on wood). I was down for the longest time so far. That phenergan... man, never ever will I do that again, I learned my lesson. I was so mad when I heard about benedryl making the RLS worse and the stupid doctor giving me that. Now looking back I remember how much worse it was after that.

    I was in and out of the hospital that whole week, mostly getting fluids to keep my blood pressure up. The stress of that drug reaction I know is what started this last flare. I couldn't stay awake to drink and every time I stood up I would either faint or nearly faint. The good news is that someone pulled some strings and got me into one of the two specialists in this area next week. I have been on the waiting list for 6 months. How do you sum of this disaster of a disease in one appt? I'm tired and don't feel like I have the energy to go through it all again... the details and what my life has been like this last year.

    I'm sure you all understand this low... after a flare when you loose hope. A few weeks ago I was like, wow, maybe I'm getting better, you know?

    My Ebstein-barr titers more than quadrupled since my last flare. I was surprised because I didn't have a lot of the throat, and other mono-like symptoms like before. I thought this might be un-related.

    Do I need to see an immunologist? Anyone know about IFIG therapy or other immune boosting therapies? Stress is a huge culprit for me I know.

    I had to take a manager position at work that is part time that I am blessed to have been offered, but I will no longer be on the floor taking care of the patients I adore so much. Then I worry about the money and if I'll make enough with the part time hours. I know I need to do the change though, I am again blessed that I am at least able to work some. I know so many are so much worse. I pray I will get better and be able to work as a floor nurse again. I am still on the floor until we can find a replacement. This is my second week back and I'm tired. But I'm working.

    Wow, what a rant, so sorry. I know I can always find support here. People who know exactly how I am feeling. No one, no matter how much they love you, can ever really "get it" if they have never experienced it. The emotional stress and depression is far worse than the physical symptoms for me. The hopes every time you think you might be getting better crushed by a flare you see coming but can't stop.

    Thank you all so much for your loving words and support. I know I don't post a lot, but everyone always still responds so kindly.

    Any suggestions for good questions to ask the CFS specialist? I am going to make a list. Treatments to ask for? I'm definitely going to ask for a referal for the massage therapy. I also want to know if I may have fibro as well. I am sure I do but have had no time to deal with that yet. Just another "title". I guess it doesn't mean much. Nothing different to treat I suppose.

    Thanks again, I am done with my monthly break down post :)

    Patty
  2. kirschbaum26

    kirschbaum26 New Member

    Dear Patty:

    While I do not know much about CFS, but I wanted to reply to your post. Glad to hear that you survived your terrible reactions. We really have to be careful about what we take, and the reactions we might have.

    Ingrid
  3. cc0526

    cc0526 New Member

    bumping, even if you skip through my ramblings.. good question at the bottom about questions to ask the specialist :)
  4. cc0526

    cc0526 New Member

    okay, just one more :)