Hey guys, I had almost lost my hope that I would ever be writing this thread any time soon, but it finally happened. If you’re wondering who I am, my last two threads were (Still walking through misery (slightly better)) and (I am walking through hell).
So I was almost certain that my cholinergic urticaria will not go away for the summer, because during these last months of spring when it was warm outside (22-25 C), at first it was horrible, slightest move would result in hives, so I was always luring in the shadows. Then it got a little better, and in order to get sweaty I had to reach a higher temperature than before, but it still was horrible, because it was getting hotter and hotter. So I snapped and lost my patience and ordered myself a portable steam sauna.
After it arrived, I tried it the same day, and I was probably too optimistic and thought that it would cure my symptoms right away, so after getting out of the sauna and taking shower I went outside with my friends and tried to play basketball, it was hot but windy outside. Well I thought that because I just used the sauna, I would not itch for the rest of the day, but nope, after a few minutes of playing I got hot and started to itch, of course I got very angry and thought like “what the heck, this was my last idea and it doesn’t even work”.
I used the portable sauna after two days again, and I still itched afterwards, same goes with the third day. (By the way, after the sauna I am extremely light headed and dizzy for a few minutes). Fourth time (yesterday) I used the sauna, moved inside to get myself even hotter (in the sauna itself I don’t get itching, well I do, but it’s for only like 30 seconds, and mostly my scalp is itchy, it goes away quick). I took a shower, took a quick rest and when I started cleaning and packing the sauna up, of course I got warm, but I didn’t get the slightest itch that time and noticed that my forehead got a tiny amount of sweat.
So, today came, I am currently taking driving lessons in another city, I went there in the morning 9:30, and this week is hot here, like 27-32 C, so I was already curious if I will itch or not. So, I am waiting for my instructor, I am staying in the sun, it is hot, and out of nowhere I feel that I should get my itching, but instead, I didn’t. Okay, I’m happy.
Instructor arrives, 30 minutes into the lesson, my whole back is sweaty, hands extra sweaty. After getting home I was sweaty like a pig, got sweat on my back, little on the belly, little on the arms, face, it never felt so good to sweat and enjoy the heat without itching.
I don’t know if it was the sauna that helped me to get into sweating again or what, but I’m feeling good, maybe symptoms will come back when the weather cools down, but for now I am happy that I can be in the heat again, feels so good 🙂
– Tomas
Hivesguy says
Glad to hear that you’re sweating, Tomas. I hope things continue to improve for you. Thanks for sharing this with everyone.
Anonymous says
So I am suffering from cholinergic urticaria, it’s been 3 years every summer is torture, took antihistamines helped reduce/block most of pain but after about a month I was in pain again. Try Dieting for couple months sweet potatoes, banans, avocadoes but could never stick to it for more than 4 days due to hunger.
Any suggestions on what to do… Ive tried sweat therapy running in park but never sayunable. Should I go sauna is it worth the torture of sitting on sauna for 20 mins of pain?
Thanks from A to the Z
Tomas says
Hey.
I’ve never tried diets, so I can’t say anything about those.
Although I tried antihistamines, Zyrtec and Kestine, I would switch them up every week in order to not get used to them, at first it seemed like maybe they were working a little bit, but it was still horrible, so I just stopped taking them.
However, after my symptoms didn’t get better for quite some time in the spring, I had lost hope that even sweat therapy would help, but I still ordered the portable sauna, cost me like 200 €. By the way, in the winter, when I had just got my first symptoms and found information about this disease online, I remember, I tried to dress up all the warmest clothes I had and try to jump around in the house, move a lot, to break sweat, but it never worked for me, I just didn’t have the endurance to keep up working out for that long.
I see, you think, that in the sauna, because it is hot in there, it would itch? Nope. When I first went to use the sauna after getting CU, I was slightly afraid too, but after sitting in there, yes, you get the itching, but it’s not that bad, it’s easy to go through, you scratch yourself a few times and after about a minute all the itching goes away and you can just stay in the sauna for as long as you can. Of course, those portable saunas which you can buy online, like mine, doesn’t get as hot as a real sauna, but it is fully enough.
So my recommendation for you would be, buy the portable steam sauna, set the timer for 0 or 45 minutes, cover the top of it, and give it 15-20 minutes to warm up, then get in and just sit there till the end. If you scalp gets itchy, put your head inside for a minute or two too. Also, when it is hot enough inside, try to move as much as possible, to sweat even more, for example I pretend to play drums with my arms and legs, then it gets even hotter. Do not expect that it will help right away, use the sauna every day or every second day, let your body get used to sweating again and you should be fine, atleast that’s what worked for me.
Good luck
[Note: Always talk to your doctor before trying sweat therapy, as it may not be safe or appropriate for everyone.]
Debby Clements says
which steam sauna did you buy? thx
Tomas says
I don’t see it having a name or something, here’s the link: http://medisa.lt/pirtys-saunos/704-mobili-garine-pirtis.html if it helps 😀
David says
Great news! Keep up the good fight.
David
Anne says
That’s the best news!!! Yay! Well while I’m dealing with this CU too for 8 years i considered buying an indoor sauna to try to see if I can sweat at all. It’s frustrating to not be able to do sports and excercise without being so self conscious of the hives coming on. Summer is approaching and I want to be outdoors! I’ll buy an indoor sauna to try!!
jong sup says
I don’t know whether portable sauna is suitable for everybody. It is better to try any sauna in the leisure centre before you buy one. If you don’t sweat in the sauna, you will only experience lots of pain. It does not necessarily mean that your symptoms will be relived. I bought one but it was not helpful at all. I will have to sell it on ebay.
Anne says
SO… I ended up borrowing a portable indoor steam unit. I was excited to use it and tried it out. It felt good for the first few minutes so I Continued for 15 minutes at most and boy was that a big mistake!!! Ended up overheating… Broke out excessively and had to rush to the ER! never again. 🙁 I have to cope with anhidrosis. The inability to sweat is frustrating to say the least. Not sure what else to do next. Just keep cool is allI can do for now it seems like.
David says
Hi Anne,
Sorry to hear about your experience with the sauna. Unfortunately, sweat therapy doesn’t work for everybody.
I also have anhidrosis to a certain extent. I use a sauna at my gym during the winter. It helps me break a sweat but I don’t sweat like I used to before I started experiencing CU. I used to sweat buckets in high school and college. Now it’s just limited to my head and underarms.
Are you taking any medications?
Anne says
I can’t sweat anywhere. I used to sweat like buckets in college too. I loved it. Then boom.. It stopped. I am taking Allegra and Zantac 2x a day. As recommended per my allergist. Maybe I need to start a new thread? Can’t seem to find any videos on this site?
David says
Does the Zantac and Allegra help at all? I don’t think this thread has videos. Just forums of fellow sufferers. How long have you had CU and have you experienced any break from symptoms at all?
I had about 10 to 12 years of not experiencing any symptoms and then 2 years ago it came back.
Anne says
Allegra has helped suppress the itch whenever the hives come up. I don’t break out as much when I take them. It started in 2009? I haven’t had a break from the hives. My allergist said it may run its course of 5-10 years? Then Possibly go away but then it may come back.. So everyone’s different. Sounds like your case. I’m hoping mine will go away soon in my early 30s now. Do u take any medications? Thanks for the chat David.
David says
Hi Anne
That’s the crazy thing about CU how it can come and go. My case is more of that annoying prickly itch. I don’t get much of the hives. If I do it’s usually on my forearms during the winter when I don’t sweat as much. I’m not on any meds because none have worked for me. I’m just keeping mine at bay with sweat therapy. Summertime must be rough for you, right?
Anne says
It’s rough the entire year. I can’t get in a 15 min cardio workout without breaking out all over. The antihistamines Allegra seems to be my lifesaver right now. Just have have to deal with it daily and stay hopeful that one day I can sweat again and I’ll be over the hives!
David says
Ugh, sorry. Well I’m glad at least the Allegra helps. Just try and keep up a positive attitude and hopefully it’ll go away soon. Like in my case.
Anne says
I was reading through some old threads. Some people don’t follow up so we can’t Stay up to date on their current status. I plant to get the book today… Try to sweat.. And be As patient as I can.
David says
I’ve noticed that too. I guess when people find relief they tend to go on with life. Even if I’m feeling better and having no symptoms, I like to respond and share what works for me. Especially since it’s a condition that can be tough to treat with conventional medicine.
Anne says
I ordered the book so I hope reading that will help me get through this!
David says
Which book?
Anne says
Cholinergic urticaria who ask Leo created this site
David says
Oh ok great.