PTSD after full or partial remission from cholinergic urticaria and other forms of chronic urticaria

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Hey for those who are still ill and suffering from this illness, I wish you a speedy recovery. However, for those like me who have achieved full or partial remission, while on or off medication, do any of you feel a lingering fear whenever you feel even an itch?

For me sometimes, even though I rarely get symptoms anymore, I'm sometimes too scared to run or go in the sun for long distances, fearing that the hives might just come back and I'll be stuck far from home without anywhere to cool down. Or if I get a small itch, I start to get really anxious. One thing many CU sufferers can only relate to is that feeling, like an aura before a seizure, is this feeling you get before you itch because you feel your heart race or body temp go up. Every time this happens, I fear an itch is coming and I am relieved when nothing happens. Nevertheless, every time I get hot or excited, I still tends in anticipation.

Yes I know I'm rambling. I've only been in this sweet limbo of partial/full remission for 7-8 weeks so maybe I'm still not used to being cured.

For those of you who are doing well now, did you ever experience these emotional responses? If so, how did you deal?

Thanks :-)

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8 Replies

  • Posted

    Haha, yes I know exactly what you mean! I am 2.5 weeks post mirena coil removal and this has been the cause of 8 months of misery with urticaria. In the last 2.5 weeks my urticaria is almost gone. But like you say, any slight tingling on the skin and I am petrified to scratch just in case! I am regularly lifting up my top to peek at the areas which were effected. I walk around work inspecting my arms! Its madness I know but I am not 100% there yet. Strangely the odd single hive seems way more itchy than the entire breakout but the fear is definitely there!!
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  • Posted

    Hi Tonello, I believe many of us who are in remission feel just same I know I do. I still wear clothes inside out when I'm at home as one of my triggers is chafing and I worry like you at every itch. People who have never suffered this won't know why we are so paranoid about an itch!
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  • Posted

    Ha-ha thanks guys. I was beginning to think I was going crazy or something.
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  • Posted

    Hahahaha just like me , going under sun pressure or run is a big fear and when i feel in small itch i realy feel anxious, now i take telfast(antihistamine) and i am 90% fine from hives and itches
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    • Posted

      I'm always happy when I hear that someone is getting better from this illness. Congratulations
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  • Posted

    I'm not in remission yet, due to start ciclosporin next week, but I do have things about 80% under control with diet and lifestyle changes. I have cold urticaria and am now very hyperaware of my skin when it is cold and especially when it is windy. I definitely have become over-aware of the sensation of itch, and when I am in an episode it can be hard to not obsess with it.

    A couple of months ago I began looking into the mindfulness techniques people like Vijmala Burch of breathworks teach for the management of chronic pain. It's worth looking into for anyone who suffers with Urticaria because a lot of the trauma is shared with people with chronic pain, even though the sensation is different.

    She writes about primary and secondary suffereing. The primary being the physical pain or itch or even broken/sore skin in our case. The secondary being insomnia, anxiety, constant severe discomfort, obsessive thoughts, fear, worry, anxiety, loss of quality of life, hard to manage diets and damaging lifestyle changes, job loss, financial worries and a whole host of other nasty suffering even including suicidal thoughts when things get very bad.

    I know I felt like a different person the past three years with Urticaria. It has been by far the worst time of my life. I really resent it ruining the good times I would have had during the first two years of my daughters life. I also resent the fact that I had to scale back my ambitions/hopes/dreams and the damage it did to my career and financial position. But all that said, I am feeling 80% better now and actually appreciate how good it is to be healthy.

    One thing that has helped me a bit is anti-depressants (Prozac, low dose now) and the beta blocker Propranol (occasionally as needed). They helped with not obsessing over the hives and also took a slight edge of the itch, and especially dulled down the false alarms you describe. The SSRIs do dull the sense of touch somewhat, which I guess is why they are so effective when they are used to treat P.E. in men. I find the the beta blockers seem to help stop the itch-scratch cycle from escalating into the usual vicious circle horror show so that even when I am itchy it tends not to get worse.

    The tricky thing about the false alarms for me is not jumping the gun and taking sedating anti-histamines when I might not need them. I find Periactin quite useful when things are bad, but the next day I am sleepy, unmotivated with an increased appetite so I don't like taking it if I don't need it. But if I hold off early and then later find I really do need it late at night with insomnia and intractable, then I will be really sleepy until after lunch. Doxepin was a whole other level of dopiness though.

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    • Posted

      Thanks for your comment and I hope you do achieve full remission. I was considering going on an SSRI or similar but I'm afraid of the physical dependence such drugs cause.. One thing I do agree with is that now that I'm doing better, I appreciate what it means to have good health (something I took for granted till this all started years ago). And I will defend this good health like no man's business: no more processed foods. No more binge drinking and partying. Eating clean. Enjoying time performing any activity

      It's like a veil has been lifted and I enjoy everything now with new zest

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    • Posted

      For me, I found SSRIs have a lot of side effects. So I wouldn't personally recommend them unless you are feeling low or find yourself still fixated on the hives after some time.

      Paroxetin, and Sertraline to a lesser extent, dulled skin sensation but gave me very bad stomach problems, restlessness and early waking insomnia. I had almost all the side effects listed for those. It was easier to get to sleep but I would tend to wake up at dawn like a light and going back to sleep just wasn't possible. I was restless and found it very hard to concentrate at work.

      Prozac has been much milder, but less effective with dulling the skin. I've had headaches and light sensitivity with that and maybe a bit less sharp concentration and lower drive/energy but it's nothing major. If you are considering SSRIs, I'd stear clear of Paroxetin, it's the one that is trickier to come off because it wears off in less than 24 hours (I wonder if the early waking insomnia is related to the short half-life). Prozac naturally tapers off slow over 5 or 6 days.

      I've also found that Prozac has been helpful in actually decreasing my appetite a little, which has made dealing with strict diet easier as I'm just not as interested in food generally. Paroxetin was the opposite and I put on weight quickly with that, like I did with Doxepin.

      Even though SSRIs should all be similar in effect, in practice, I've found they all feel very different. I've talked to friends who are mental health nurses and they say that is common. So it's a process of trial and error to find one that works acceptably for an individual.

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