Angio edema

Discussion in 'Fibromyalgia Main Forum' started by elainep, Feb 3, 2003.

  1. elainep

    elainep New Member

    I have angio edema (swollen lips) and have had for two years. One site on CFS that I found said that angio edema is not unusual for people with CFS. Has anyone out there had this? Did you find anything that helped?

    I can't take over the counter antihistimines, so have been using a natural source which helps some. My doctor tried epinephrine but it didn't help.
  2. kadywill

    kadywill New Member

    I'm sorry to have not responded prior to this~~I am in a flare of my "Chronic Angioedema/Urticaria" right now and this is usurping the Fibro problems for me right now!! I've been on the OTHER board that deals with this particular problem.
    Yes, I have had angioedema and hives for thirty years now and I have ALWAYS associated the Fibro with it! It is all connected, IMO, and I hate it all! I am back on steroids now, which I put off as long as possible due to the adverse effects I have after longterm use. However, I am so happy to say that today I woke up hive-free-itch-free-pain-free and edema-free for the first time in FOREVER!!! I love these good days~~I have so very few of them!!!
    I am on many meds, but right now the Prednisone, Allegra, Quercetin, Atarax and Zantac top the list just to help the symptoms of the problem you and I share! I hope and pray you keep Epinephrine around for anaphylaxis!!!! I was self-injected Epi each day for two weeks until I got the steroids in my system. My reactions are very serious and life-threatening. My eyes, lips and throat swell quickly and I am often 100% covered in large, intensely itching hives. My Fibro pain ALWAYS lets up, though, during these flares and I am always grateful for that. My SKIN hurts horribly, though, and the sheets actually hurt me, but the real Fibro pain isn't there!
    I hope this helps you to know you are not alone in this. My first symptoms of autoimmune disease began in 1973, when I was 17, with the angio and hives. The pain and fatigue came many years later. I have run the gamut of doctors, believe me, and I have taken a pharmacy full of meds and supplements. I just take each day as it comes and treat each symptom accordingly. It is a cross to bear and it is one that I would only wish on Satan, alone! I am so sorry you know what I mean!
    With much empathy!!!!!!!!!
    Kady
    [This Message was Edited on 02/04/2003]
  3. elainep

    elainep New Member

    Boy, you make me feel really good! Mine is not anywhere that bad. I have had hives in the past, but I've found that eating chocolate contributes to the problem -- eating chocolate when juniper pollen is in the air will do it every time! So, I'm trying now to completely avoid chocolate. In fact, I had a snack size candy bar last week and my lip puffed up bigger quite soon after. Stayed that way for 24 hours. And chocolate is soooo good!!!! ;-)

    Good luck.
  4. kadywill

    kadywill New Member

    Boy I wish mine was that easy to manage. The docs have NEVER found any allergy or cause for my problem. As much as I love chocolate, it'd be out of my life for good if I found it to cause this or make it worse in any way. There is NOTHING I wouldn't give up to never have a flare. So, leave the chocolate alone, girl, or, better yet, just send it to me!!!
    Love,
    Kady
    [This Message was Edited on 02/04/2003]

[ advertisement ]