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How to live through hives/urticaria

I thought it would be a good idea to do a post sharing with people what I've learned about how to survive urticaria without losing your mind. Well, okay, with maybe losing your mind, but surviving. I got some good advice and piles of bad advice, and insofar as someone else out there might read this some day, I wanted to give them something that is more emotively informative than what you find on WebMD.

There are several kinds of hives. Generally hives occur as an allergic reaction to something. This is what happened to me at the end of October: something (possibly a detergent, many people suggested bio would set me off, but I think this wasn't it; a soap; or the new moisturizer I picked up in Turin - but note in most cases the trigger is never identified, so you probably shouldn't waste your time doing extensive allergy tests) made my skin flare up in little itchy spots, on my chest and neck and legs. They are red and irregular and flat. I thought they were bug bites, but there is no indentation in the middle or swelling. My first mistake: treating them like poison ivy or mosquito bites. Calamine lotion is useless. This is an allergic reaction, with spots caused by histamines, and what your body needs is ANTIHISTAMINES to help it. (Thanks to eglantinedreams for actually figuring out WTF was happening with the spots.) At this time I also started experiencing extreme fatigue, which I ascribed to the antihistamines I was on.

The next thing that happened, what made this all a nightmare, was an intense stress reaction (caused by an external event) which my body interpreted as being caused by allergies. This made the small spots become a big rash over my torso and thighs, and made my face swell up (especially noticeable in the lips and the eyes, which were near swollen shut), building up over about five day from the spots I had on day 1 to the bloat and redness of day 5, when I went to the doctor (it was a Monday). I was prescribed a heavy regime of steroids as well as antihistamines. NOTE: is your neck swollen up? Go to the emergency room. No kidding: this can kill you.

Second mistake: not all antihistamines are alike. Some of them do nothing. I went through five different kinds trying to find one with an active ingredient that worked for me, but because I was feeling slow and stupid (a combination of the steroids and the fatigue caused by the urticaria) I didn't push to get different kinds. I finally got fexofenadine and a helper drug (cimetedine) - one does the itching and the other does the swelling. When this combination manifested, this illness became much more managable (as in I was no longer scratching my legs until I bled at night) - I would cycle through spot, itchy, fading in four hours as opposed to two days..

Third mistake: I thought the steroids would fix everything in a few hours. I was prescribed them for a week. It took almost three days for them to actually reduce the giant mass of burning red skin to mere spots. Afterwards the doctor struggled to control the itching (they had me coming back every week) and I wound up taking additional steroids when I flared up again.

During the entire first month I was ill, I had very low energy and could barely walk up a flight of stairs. If I had to stand all the way in on the tube, I couldn't think by the time I got to work. I was not able to accomplish much while I was at work because I couldn't think well - and this wasn't the steroids (though they may not have helped - I spent the week I was on the heavy steroid dosage quite confused), it was fatigue caused by my body acting like it was sick and blowing all of my energy on trying to fill me with antihistamines to make me better.

Fourth mistake: the doctors said this would all be over in six weeks. It was not. Sometimes it goes chronic and can last for months or years. In my case, I think the cold I got the second month I was sick caused my immune system to DIG IN and TRY HARDER. (And I was signed off work for a week the second month and had another week where I was working reduced hours at reduced pay, because I was just too exhausted to think.) I wound up having a cold for three weeks and living off of Night Nurse and Fisherman's freind; month two was a nightmare. The week I was supposed to be over it, I wound up napping about two hours every day. I just wasn't managing.

Good advice number two: the doctor who said I just needed to wait it out and accept some days I was going to be very tired and not be able to do much. She was realistic and set realistic expectations for me. Rest did NOT make me better; I would wake up and only have the same tiny amount of energy. I could have slept for all of November and December and it wouldn't have made a difference. My body just needed to decide it wasn't going to be sick any more.

Good advice number three: oatmeal baths and moisturizer for my lips, because they would get so stretched out the skin would start to crack.

Good advice number four: wear soft, loose fitting clothing. You should anticipate this and plan accordingly, because one of the things that will set you off with welts is pressure on your skin. So normal things, like the tops of socks or stockings or the waistband of shirts, will by holding on to or rubbing against your skin cause you to get a nice lovely stripe on your leg that may take two days to go down (or more).

Good advice number five: don't scratch. It doesn't help. Slapping your skin can help and isn't as likely to tear it. (I'm open to suggestions on how to reduce the scratching because you will do it in your sleep and you will wake up covered in blood.)

An unfortunate side effect of having this for me has been hyperemotional sensitivity. A few times it has been cool (while at plays or the ballet I have been easily moved to tears), but mostly it has been a nightmare. Yelled at at work? Pufferfish face. Partner unhappy with me for whatever? Legs covered in welts. Nasty email? I run out of energy before the end of the day at work and have to fake it until I can go home. Telling a friend about a very strong emotional memory? I am in tears. I am aware that this is how I am right now but I am not in control of it; I am very much just along for the ride in the meatsack and it is processing stuff and telling me what to do, sometimes like I am being whipped by a cat-o-nine tales wielding demon.

When I went to the doctor in January (the dermatologist), she said the number one thing I needed to do to get better, to finally let my system re-regulate, was to eliminate stress from my life (she also said I was over the hump, which I thought might have been the case, but as for only having another month left, well, I'm at week seven and totally ON FIRE today - in the bad way). This has actually been really hard, and I kind of feel the only way I could actually do this is to maybe move in with a friend or family member in another country - but to entirely get away from my life, including my job and pretty much everyone I know. And I thought this week about just running away for a while, but I don't really have anywhere to go to and of course I can't just quit my job and walk (and I'm a bit fucked in terms of not being allowed any more sick leave and not having any other leave left to take that isn't already booked). So I need to tune down any negative feedback I can control and work hard to get more positivity in my life. I've also been taking anti-anxiety medication and, now that I (on most days) have enough energy, I'm doing Pilates again. And I've made it to the masseur twice since I've been back.

This, now, is the kicker. I must get the stress down. I need to avoid negative people and seek out positive; I need to not have stressful conversations if I can avoid them. I've been trying to focus my energy on being energized enough to make it through the work day, and the hand of God has been generous as my new boss has turned out to be a stress reducer. But for the next month, I think, I need to figure out anything I can do to cut out stress and get my body to think the panicking time is over and it doesn't need to be filling me with stress juice that turns me red, makes my face swell up, sets my skin on fire, and saps my energy until I'm utterly broken. I've tried to manage this and done a very poor job; March really must be different. Somehow.

Bad advice: vitamin B5; "you're not resting enough;" "it's just your brain so you can think yourself well;" and God knows the list of things people recommended that were utterly useless and I've forgotten most of them now. Patience, anti-anxiety meds, powerful antihistamines, extremely soft clothing, and a good moisturizer were the things that helped.

Odd note: my appetite and my sense of taste were really reduced. So despite the fact that I've been getting very little exercise, I've actually lost a clothing size. But my muscles have atrophied and I now need to work on building them up.

Best thing for me: being treated with love and kindness. This really makes my stress levels drop. Unfortunately you can't get this at the pharmacy, and with my emotional overload and the depression (caused by being down about being so ill among other things) and lack of energy (triggered by being stressed), I am just absolutely the most unlovable thing in the world right now. I've been farming myself out to various friends and getting some nice care from them, but I am so needy right now it's just too much for any of them to handle. But I do really, really want to get well. I feel like it's just around the corner if the stress will go away, and if I could find the Big Rock Candy Mountain where all the kind and loving people were who wanted to give me unconditional acceptance, I'd be set.

At any rate: whoever you are, if you found this post doing a search to understand what's going on with you and how you might approach dealing with it, I wish you luck. I, for one, will never look at immune system diseases or chronic health issues the same again after going through this. Take it easy on yourself, respect your energy levels, medicate, and be patient. With luck, this will be something you only have to deal with once in your lifetime. Feel free to go back and read the posts tagged "allergies" to see how I have been experiencing this on a day by day basis for the last four months.

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( 2 comments — Leave a comment )
mr_sadhead
Mar. 3rd, 2013 05:57 pm (UTC)
The love and kindness are the most important things.
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