My struggle with cholinergic urticaria: (Warning: Long ramble ahead…)
First off, I was surprised and excited to see that this forum is active once more. I have had cholinergic urticaria for just over a year now (1 year 2 months). Unfortunately, I went through hell the first 8 months, as I wasn’t being properly diagnosed. Looking back, I get angry thinking about all the stupid answers I got.
By October of last year, it got critical. Only about a week after I had my most traumatizing attack, did I figure out on my own what I had. Talk about bad timing. I bet if I had known what I had had a medical name and countless people suffered from it, wouldn’t have felt traumatized. Unfortunately docs were telling me, after they exhausted their paltry “tests”, that maybe it was in my head.
I gave up on doctors after that and began my long, desperate quest of finding a cure or explanation of my cholinergic urticaria. Eventually though, around the new year, I found a smart immunologist, recommended to me by a hematologist I saw ( back when I thought my unexplained itching could be cancer related!). It was incredible.
I had seen an immunologist for nearly the entire duration of summer and she wasn’t coming up with anything. Even when I explained to her that moving something heavy, I itched at first but later felt relief for the rest of the day (degranulation of mast cells I would later learn), she and her staff looked at me like I was nuts. She must have gone to Hollywood Upstairs Medical College with Dr. Nick Riviera.
Anyway, in one appointment, this new doctor knew exactly what I was talking about. Everything I explained to my first allergy/immunologist I explained to him. He knew everything I said and even tested me for major environmental allergens…again all in the same session. 1st doc was taking weeks to do that.
He didn’t even recommend any anti-histamines. His best advice to me was to exercise regularly. I’m also getting weekly allergy shots for dust to hopefully prevent full blown asthma from developing.
Anyhoo, I’m rambling. But I just wanted to say I am so glad and excited to see this site up and going. I am not gonna lie: Over the past 6 months, I have gone through some very dark times with this stuff. There were times when I questioned my own future. Alas, this website was archived at the time, but nonetheless all the stuff on here, and HivesGuy’s great advice and experience, really was a lone flickering candle in a seemingly dark, never-ending corridor. Thank you HivesGuy. I am eternally grateful.
In a lot of ways, I have improved. In the weeks following my traumatic attack, I became desperately afraid of foods. I have calmed down a bit in that regard, but out of that I have cut out gluten and wheat. I had a nasty patch of psoriasis reappear on my lower half for nearly a decade.
It decided to stake ground on my leg and stayed in the same place for nearly 2 years. When I drastically altered my diet, primarily cutting out wheat and gluten, but also dairy, it went away. Now I wonder if I actually had psoriasis or if It was that rash that is usually associated with celiac or gluten sensitivity. I mean, I saw the same dermatologist for nearly a decade, as long as I had the rash. In the early years, he would ask me if I came in contact with metal? Huh?? metal?? Looks like a contact allergy. Then one year he decided to say, oh yeah, that’s psoriasis. So who know’s what it was. i think it was an autoimmune rash from the gluten.
I have also been supplementing with high doses of vitamin D after learning I had a severe deficiency, another thing all the doctors I had been seeing had overlooked. I remember asking that same deem doctor if maybe my vitamin D was low (this was before I knew this was cholinergic urticaria) and he said meh, everyone’s D is low, and didn’t bother to check.
Turns out my D was in the single digits. One thing I am really going to try for is acupuncture. I know, I know–the subject wasn’t too popular here, and there are some old posts about it not being effective. However, in my research I have found some people who have done it and said it helped. I figure it’s worth a shot.
There is a great FB page dedicated to cholinergic urticaria with hundreds of members. There was a member who said she has suffered from cholinergic urticaria as well as delayed pressure hives for more than 3 years. She finally tried acupuncture and Chienese herbs…said it cured her. She even gave the name of the doctor (too far for me unfortunately).
To be fair, she went on to say that it took about 6 months of treatment to recover from her 3 years of hives. Most accounts I have seen said they tried no more than 2 or 3 treatment sessions before they gave up. So it seems like it can work or at least help…but it takes time and commitment (and money, alas). As with anything in life, there is no guarantee it will work for everyone but it’s worth a shot.
It’s important to never underestimate the mind body connection…in my case I think a lot of my problem is mental (this cholinergic urticaria came about after a really stressful time in my life), so I figured I should at least try. A few others on the site also said it helped them. Xolair was also discussed on here, if I recall, and there are some active members on that FB undergoing xolair treatment so that’s also interesting to see it used for physical urticarias.
I wish everyone here good luck, and to HivesGuy I say thank you. You’re advice and tips and community on cholinergicurticaria.net have meant more than anything I got from 98 percent of the alleged “professionals” I saw. This is so exciting to see this place active again. Looking forward to it. ; )