I don’t have exactly what is described in the article. Mine, thankfully, instead of being all the time, is only when I sweat, get too hot or am cooling down too quickly after being too hot. To be entirely honest, I’m still kind of confused about exactly which one of those things causes it. But it basically seems like my body has forgotten how to do homeostasis (such a basic function) properly.
I have started to work out now, after thinking for months that I would never be able to again – there is so little non-vague info about how long Cholinergic Urticaria lasts, why it happens, who it happens to, what can happen, etc. that it felt like the end of the world. Plus, it’s not life threatening so there’s probably not going to be much better info…It’s not the most pleasant experience wanting to tear my skin off after every work out (and having skin-less eczema patches where I’ve been successful), but it does mean that any later-reaction in the day is less torturous. It’s also manifested with a bout of asthma, so I’m running also to hopefully make my lungs stronger. I’m also hoping that I’m slowly desensitising my mast cells to serum histamine or acetylcholine or whatever reaction that is unnecessarily happening, and it’ll help make this thing clear up quickly/eventually/soon.
The antihistamine I use is called Acrivastine (Loratadine didn’t work at all and Cetirizine made me drowsy immediately after reacting which is uncommon for a second generation antihistamine). In the beginning I had to take it 15 minutes before going somewhere, now I have to take it an hour before going somewhere (or washing dishes or cleaning the house, etc. i.e. there is no such thing as spontaneity). Which may mean that I’m slowly developing a resistance to it. There are a few other ones that I can try once that happens, and I have been given permission by my doctor to have up to 2 at a time if I need to. Acrivastine doesn’t make me drowsy during the day, but it does seem to add about 2 hours of sleep per pill I have to take during the day, making it harder to wake up the morning after.
An interesting observation: since starting to work out my sleeping time per pill has decreased to about 1 hour of sleep per pill taken…so it’s possible that working out has given me that extra energy that I was lacking when I was sitting at home being lethargic and utterly upset, embarrassed and demotivated by everything when my Cholinergic Urticaria first emerged.
My doctor and university have been really helpful. My doctor made my antihistamines cheaper by making the £0.49 per over-the-counter tablet become £0.00116 per prescribed tablet (the OTC experimentation stage was quite expensive). My university has helped me out since it’s a long term health condition which affects my day to day life. I’m about to do my last couple of exams now and they are giving me a desk fan, a room to myself, and a room that is as not-warm as possible. They’ve also taken into account that it was really hard to get myself to attend all lectures last term, and keep up with my assignments because of how my sleep pattern was affected.
My friends and family have been really helpful; motivating me, letting me be lazy when I’ve needed to be lazy, realising it’s not just an excuse, helping me out with the things that I just couldn’t physically do. Thanks guys ❤
Dear body, please get better soon!