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Chronic idiopathic urticaria taking over my life

Posted , 12 users are following.

nancy35849
nancy35849

I found this forum for the first time, yesterday, and so pleased I did. I wrote a big long response to "Martin", if anyone is interested in my recent history with hives. I just wanted to add a little here. Since March, these severe hives have been causing me so much distress and are affecting my life, socially, mentally, recreationally, and in every way! Each day I hope will be the end of them, yet they never go away completely....just fade a little, then return late afternoon. Through to the next morning. Every single day! 3 days a week they're severe, other days, moderate. Therthotrexate is not working yet (on it 2 weeks now). Dr said would take 3 weeks to kick in, though I feel tired and low from the side effects. I decided to help myself on a deeper level while working with the medication and dr. I've begun meditating twice daily, and letting this go, one moment at a time. Today I did not take the steroid since it was low dose and just wanted to wean off it. Hives are no different than on steroids today, so that's good. I am trusting my deeper self to help my body with this, I know I am in the process of healing this right now! I have never imagined hives could be distressing, and at times, debilitating. I wish all of you a quick return to your normal selves. I feel so badly for all of you who are suffering with this awful thing. Peace

1 like, 20 replies

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  • irishcree
    irishcree nancy35849

    Posted

    Hello Everyone

    When I woke up one morning five years ago covered in hives, my hands, feet, and face swelled I would never have thought I would never get better.

    Since then I have been on a long list of medications, seven months of IVIG treatments, Xolair injections every 3 weeks for the past 3 years, over 400 sessions UVB Light Therapy, a low histamine diet, numbing creams, a variety of different lotions and had tested for everything imaginable. The latest test was to see if I had parasites which came back negative.

    My illness, for lack of a better word, seems to be different from most people. I do get itchy and swell etc but I have also become intolerant to water, rain, snow, my own perspiration, snug fitting clothing, stress, and my flight or fight emotion. Last week I was boiling potatoes and the hot water bubbled and touch my hand. Not a big deal but enough to startle me, five minutes later my lips swelled. Even folding clothes that are hot from the dryer makes my itchy and light headed. Rain or snow on my head makes my scalp welt. Toothpaste and anything remotely spicy, ketchup mustard etc. causes a rash around my mouth. Showering is the worst, I am taking Morphin to help with the pain and itching. My blood pressure also drops when I shower so someone needs to be nearby in case of a problem. I give myself a sponge bath every day but a few weeks ago even the damp face cloth starts hives and swelling. I am 54 years old so luckily I am past to point of raising small children. This has changed my life drastically. I am unable to attend many family functions, warm weather forces me to stay at home, and the medications have made me forgetful and shaky. The swelling on my eyelids has now effected my vision so no more driving or reading. I fell down the stairs not long ago....six stitches below my eyebrow was the breaking point. Since then I am looking at everything in a less optimistic way If you have taken the time to read this I thank you. Today is a rough day. Enough of me and my blah blah blah..I need to focus on how lucky I am to have a group of doctors that keep trying new things, I live in Canada but there are may be a chance for me to go to John Hopkins Hospital in the United.States. .Everyone be kind to themselves today while we deal with our own individual struggles.

    If anyone has questions in regards to the meds or treatments I have had let me know.

  • amey793
    amey793 nancy35849

    Posted

    Totally with you on this! I posted a little while ago about being reffered to Dr sabroe in Sheffield (I already see one of her colleagues in Sheffield) even tho it's a tertiary referral I still have to wait 15 weeks to see her sad this is soul destroying! I've failed on every medication going, currently on ciclosporin, montelukast, doxepin (when I can bear the zombie feeling) & fexofenadine x4!

    Funnily enough I was discussing with my mum that although I know it's not the single cause stress does definitely make my hives worse. I've never ever done anything like meditation but I've been wondering about it recently.. I do stress about a lot of irrelevant stuff sometimes, & I'd read about mindfulness & different ways of thinking about things. I've suffered with post natal depression twice & can honestly say these last few weeks the lack of sleep & hives have pushed me to the edge, I've been in tears most days & just feel like it is wrecking my life! Totally understand how you feel xx

    • kay244
      kay244 amey793

      Posted

      Hi amey, hello as well to irishcree & nancy. My reoccurring complications of angioedema and a whole new bunch of symptoms pain and weird diagnoses to add to my own list urged me with frustration to research online again and which led me to this forum. Ive read everyones own personal issues with this and have much empathy for everyone here. This illness is nothing short of pure torture. I can completely agree with the lethargic zombie "like" unknown feeling and of "what the heck is lingering within in me", feeling. It all started 4 years ago with getting anaphylactic angioedema with huge hives rapidly spread over my entire body. After all the studies, blood sucking tests, allergists appointments i(im sure your familiar with all of that) was diagnosed with the idiopathic curticuria/angioedema. Then 2 years ago i was diagnosed with hypothyroidism(swollen lymph nodes and nodule on thyroid) with a whole new set of symptoms and pain; not thyroid but throat is always sore but cultures normal. Ive always blamed my low heart rate on the thyroid. But low and behold, then i end up with cellulitis abcessing severely that needs to be treated with levoquin and leaves red pigmented scars. Im sure like many of you, blood work after blood work, visit after visit searching for and checking all diseases or abnormalities to blame. Only to find nothing! Just a few weeks ago being admitted again. This time diagnosed with low heart rate (38-45) Thyroid levels and heart tests done 1st and ruled out as cause. Cortisol hormone level very low and potassium low. Has anyone had any of this stuff following your angioedema? Im very curious- when my angioedema is at its worst i get very lethargic like a drunken or lethargic state slurring words, spongy in the knees and my wrist feels like its been broken until they administer decadron thru iv. Do you have these symptoms too? I would sure appreciate to hear your journey of symptoms and feedback. Thanks. Kay
    • irishcree
      irishcree kay244

      Posted

      Hello Kay

      I know exactly how you feel. I become very shaky. A few weeks ago I slipped and ended up needing six stitchestitches below my eyebrow. My speech not only become slurred I have a difficult time expressing myself. I know what I want to say but as I am talking will forget certain words. I have referred to things wrong. If I am cold ....I will say pass me the cold. Instead of whatever it is I want. It can be funny and frustrating. Also I forget things that people have told me when I am feeling this way. I also lose my sense of direction....I can be in a familiar place and forget how to get to another spot.

  • pp75267
    pp75267 nancy35849

    Posted

    Hi Nansy . I have same problem with the hives . I have done any possible allerigic tests that are out there and all of them  where negative . After many monts suffering , i found that quitting smoking killed the urticaria . If you are smoker just try to quit  . It will not stop after day or two , but after week or two will stop for sure . That is what i found for me , and it worked ti . And also try the tablets called Zyrtec . It is very good antyhistamin .
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