As people lose their virginity, I lost my lifestyle on 13th of February. That was my first outbreak of cholinergic urticaria. I really didn’t know what it is and how to tackle with it. Like most of you, I first ignored it, and then misdiagnosed it (thinking it was something to do with sun). Then I mistreated myself (by doing a trial and error of multiple lotions on my body).
The attacks sometimes get very severe, and if they happen in public, death seems a better option than this. Like HivesGuy said, imagine somebody who just lost legs and now has the power to regain the legs.. imagine his happiness.
Well I have legs, and I have hands. I have everything, but I can’t do anything with it. At this point, most of you must be thinking ‘gosh he is new! he hasn’t suffered through 10% of what we did till now! look at his pessimistic approach!?’
After today’s appointment with the doctor, I was prescribed a daily dosage of Allegra because apparently “its fine to consume it since its OTC!?” I now welcome myself to this forum, and would post my updates and struggles to overcome this (if I ever do!).
After reading through HivesGuy posts, I believe there are ways to get rid of it, or at least reduce some pain. Below is my story so far and whats next in store for me:
I am an Asian, and I lived in an area where its usual to get 48 degrees(119F) in summers. I used to play sports facing and daring the sun. I would swim, ride bikes, and fly kites directly in the face of the sun (at 12 noon) with no impact!
I recently moved to US and now live in Texas for studies. I moved in on 1st Jan 2014 and started with hives on 13th Feb 2014 (40 days of freedom in the US eh!)… Because of panic and stressful situations about the hives, I lost a good chunk of grades in my first phase of semester. Since I am living alone, I would have to see for my own food, wash utensils, do the laundry, walk to my university and other stuff (I don’t have a car and probably wont for the next two years because education swallows whatever money you have + debt).
I think I am going off topic too far too soon, lets stick to what I am interested in and what my plan is:
- I would not be consuming antihistamines, because they merely reduce pain–nothing else. Antihistamines will only be for times when exams come, and I am sure of exposure to some heat or sun or sweat or anxiety.
- I am going to run! Outside, in the evening hours (it stays sunny till 8pm in texas, probably I would go out by 8.30/9pm) and check if I can do what HivesGuy did! Beat the unbeatable. I would go without antihistamines. My plan is to walk for about 10 mins tomorrow(I am sure I would get an attack in about 5-6 mins), but I would try push it.
- I have a family history of diabetes, and even though I havent got it yet, I am cutting down any sugar intake. I would probably have some in 2/3 days, like a glass of juice or whatever.
- I am a student with no commute facilities and obviously low on finances currently. So…
- I cannot afford fresh food and (breaking news:)
- I am a vegetarian. Thus my food life is set to be hard, I almost HAVE TO eat wheat/oats/rice/pulses daily to survive. There is not much that I can eat other than this.
- I am obviously kinda depressed that something other than me is controlling my body right now, but I am relieved that I am not alone (I see you guys here!)
My friends want to go on a trip to a beach for a vacation, but the very thought of it brings my hives back (anxiety). I would have to fight hard to move out of the plan(NOBODY believes I have such condition), and go through all the attacks this summer (it’s pretty bad in Texas!).
Wish me luck guys!!
-AplhaOne
Ryan says
Hi mate considering your situation in regards to finances the best option would be to jog every day, I wear a hoodie and track suit bottoms so I get hot quicker an then sweat quicker! When I ran till I started to sweat for two weeks I was fine! Each day a different part of me where I wouldn’t usually swear started sweating then after two weeks I was in the sun ( I love In the uk ) it was about 24 degrees Celsius and I got sun burn and was completely fine! Didn’t itch or anything I was so happy the fest thing I did was tell my mum and dad aha it’s a good feeling wen this happens as my life was planned around my hives, I still have them but just started exercising again, good luck man 🙂
AlphaOne says
Thanks Ryan! Thank you for the encouragement! But you said you could sweat even in the first jog you did?
It was my first day when I decided I would jog, but I got scared and didn’t go. Maybe I will start tomorrow.
My question to you is, could you sweat normally without pain in the first jog you ever did after outbreak?
Logan G. says
For me my first week of working out and running hurt quite a bit, its a nasty thing but I’ve gotten past that point. You just have to start and go HAM at it and then you can just workout normally.
yaya says
Oh wow, I am suffering since the 2nd week of January this year (I live in ireland), and I moved from Cyprus where the sun in the summer get up to 40. Everything was good back then. I have no idea what caused these hives, and no one in my family has it.
I never had any allergic to any food and never seen such a thing in my life (I am 32 years old). After reading alot of other people’s experience, it helped some. I stopped eating certain foods, but I cant go out run or play football because I would break out straight. Is been 4 month now and no joy yet, despite trying all sort of things. Doctors have no clue.
ryan geraghty says
ohhh i see, try not to get down about it mate you have to be strong, when you play football where a jumper and go hell for leather aha so you sweat quicker once you start to sweat you will feel so happy, i was active VERY active up until 15 where for a year i culdnt do ANY sport due to my sports related migrained which randomly started, so i went from sweating EVERY day to NEVER sweating due to not doing any sport and then my hives started at first they weren’t bad i had no idea why i was itching and i could deal with it but as i got older it got worse, diet is a big issue apparently.
yaya says
Many thanks mate,my hives are over. I started sweating, and over 2 weeks now I cant see any kind of CU. Thank God. My advise to everyone is to sweat and watch your diet.
Hivesguy says
Glad to hear that your hives are doing better! God bless.
AlphaOne says
Wow! Good to hear that!! God bless and may you be hives free for life!!
I wish to see this day soon, I will follow your advice!
Thank you!
yaya says
Bless you all, is been another week hive free. As i said in my last comment try to sweat everyday by any means and eat &drink healthy. I exactly know the pain each one of you suffering from CA is going through and pray to God you all cure soon.
Bobby says
Hello everyone, I’m Bobby (19, 168 pounds, 6’5″ ). It’s gonna be a long one, so bear with me…
My self-diagnosed CU has been awful lately. Getting progressively worse as everyday passes. I’ve made an appointment with a dermatologist for this coming Monday. I’m afraid that my doctor is just going to confirm my worries.
I’ve been becoming itchy and flushing with exercise for about 4 years now, but I’ve never experienced anything like this. And I’m not sure that what I was experiencing before was CU at all. I would get an itchy scalp and arms while playing basketball occasionally, but a Benadryl would calm me right down. But the last 5 months have been brutal. CU is destroying my life (work, school, friends, shopping). Simple tasks at work are becoming a nightmare, large staircases are now like something out of a horror movie. I’ve never been in the best of shape, but I HIGHLY doubt this has anything to do with how fit I am.
I went to my primary physician back in early December just because I couldn’t take it anymore. She just kind of brushed it off as “winter itch”. But I’ve had dry skin before and this…this is nothing like it.
I started off with just itching when I’d get too hot, but it was nothing too bad. But now if I get excited or nervous or exercise or laugh or do pretty much anything that doesn’t consist of sitting on my bed and trying to remain as calm as possible, I get an incredibly burning and itching sensation all over my legs. It’s a pain that I’ve never felt before.
When it starts to get worse (somehow), both arms will break out in hives. They will continue to burn and itch for about ten minutes, but I’ve noticed that I feel much better all over once they finally go away. Maybe it’s just because I’m going from one extreme to another, or maybe it’s kind of like puking when you’re sick. You know? When you feel really awful, then your body “relieves” itself and you feel much better…if that makes sense.
More recently, today actually, I’ve noticed a shortness of breath while at work, which made me realize that maybe I shouldn’t be working. I have a part-time job. A real simple one, too. Very little work is required. But when I do have to put in an effort, it’s typically a significant one. I consider myself a good worker, but this CU is really killing my motivation. Even e-mailed my boss telling him that I may need to quit if this thing continues to progress in the negative way it has been.
What particularly sucks is that I’ve planned on becoming a Police Officer since my pre-school days and. figures, once I buy a gym membership so I can train to become one big Cop, this bastard comes in and pretty much destroys any hope I had in joining the law enforcement.
I’ve tried so many remedies to try and ease the pain but none of them have made much of an impact. I started with some Claritin, Eucerin cream, and Eucerin oil body wash. It seemed to work…only for a moment though. I’ve tried GoldBond, regular Vaseline, baby Vaseline, Aveeno body wash, I now take cold showers, I stopped using fabric softener, I don’t wear anymore warm clothing (particularly my wool sweaters), I can’t wear high socks anymore, I never sleep with the heating vent open in my room (which is ordinarily damp because it is in the basement of my house).
Right now I’m trying the no-dairy-or-wheat diet that Hivesguy said worked a bit for him. It’s only been a few days, but no change. If anything, I’ve gotten worse. I’m pretty much desperate right now and I’m willing to try anything. My mom bought some Bactine and Zyrtec for me today so I’m going to give that a shot.
The only thing that usually helps is if I rush of to the restroom to throw ice-cold water onto my body. Mostly my legs.
People probably think I’m a weirdo for speed-walking to the bathroom trying to scrape one leg against the other just to scratch them, but they just don’t understand.
Going outside in the cold weather would seem to help to, but there’s no way that could be good for you. Especially when the CU forces you to go out in only a t-shirt, jeans and socks. But now, with Spring right around the corner, I’m terrified. How will I be able to even go outside to my car or get the mail when it really starts to heat up? I’m just really scared and getting slowly more depressed.
Praying this is merely seasonal.
Hopefully my dermatologist gives me some good news. Wish me luck.
PS: I have a lot more to say in regards to my CU, but I think I’m just gonna leave it at that because I’m sure many of you are going through the same thing.
If anybody has any recommendations, anything at all, let me know.
AlphaOne says
Hi Bobby,
Hope you get through this and hope you recover soon. I understand the pain and I also know that the society doesn’t. They simply DON’T UNDERSTAND what is happening. As you said you used to rush to the rest room, I used to rush to the windows and doors whenever it snowed in my area in winter. Snow is heaven!
Good luck mate! keep us posted!
-AlphaOne
Brad says
I’ve been suffering this for almost exactly 7 years now. I’ve been taking Claritin (Loratadine) every day for about 6 years and it helped with reducing my sensitivity slightly. When I was eventually diagnosed and prescribed some antihistamines, they just made me feel worse (drowsy) and had the same affect as Claritin so I just continued to use Claritin.
This situation means I don’t really interact with people anymore since even just laughing can cause my entire body to break out in hives and then I have to sit there and explain that I’m allergic to my own sweat which most people have a hard time believing (My parents didn’t even believe me until I was eventually diagnosed).
The biggest problem however, is that I haven’t gotten any exercise for the past 7 years and I feel like it’s taking a HUGE toll on my health. I seem to have more health issues popping up on a weekly basis and I’m fairly sure it’s related to my lack of exercise. People around me tell me to exercise but they don’t understand how painful it is.
If I can offer any advice I would recommend Loratadine as your antihistamine if you choose to take one. Every body is different, but it seemed to have no side effects compared to the many other types I tried.
On a last note, I think there is a strong correlation between Cholinergic urticaria and stress. My theory is reinforced by the fact that you got your first outbreak only about 1 month since you moved/started school.
AlphaOne says
Thanks Brad! Yes I agree it has something to do with stress, and diet! I have been reading a lot of posts lately, and I have seen people get better once they 1) change the diet and 2) exercise; which obviously means they are getting less stressed out and feeling positive. I hope you recover and get out of this bad thing one day.. the saddest part as per me is, the healthcare or the doctors or the researchers simply aren’t interested in this. Since they have major diseases to research about, Cholinergic Urticaria sadly, isn’t even heard by many physicians…
Hope time changes! Wishing all the luck to you mate!
Bobby says
I’m back.
I went to my dermatologist today and he gave me the bad news.
I’ve got the “C” word.
Yep.
Cholinergic Urticaria.
It was your typical doctor visit. He asked when my symptoms started to develop, how they feel, he forced a reaction to see what how the hives looked, he made me to drop my pants, and basically just went over everything that I had already learned online.
Except now my fears have been confirmed.
However, there was a bright spot. He recommended Zyrtec (which if you read my last post, you would know that I had just gotten some a few days earlier). What he told me is that I should start taking one 10 mg capsule everyday for about a week and see how my CU is feeling. If there hasn’t been significant change and I am still suffering with my debilitating symptoms, I should start taking two 10 mg capsules everyday. He was telling me that he’s known of some patients who are also suffering from CU and he says that they have taken up to 4 capsules per day and it has not affected them terribly.
NOTICE: Now this is what my doctor had told me. Don’t try doing this without speaking to a doctor first.
However, if this treatment does work for you, let me know and I will charge you accordingly 😉
I was also informed that my stop of fabric softener was not needed. Amongst other things. I will be having a follow-up later this month and will let you know more then.
I’m also going for a blood test in 2 weeks. Hopefully that will bring me some help in anyway possible.
Best of luck to all of you!
Hivesguy says
Well, I’m sorry you got diagnosed with cholinergic urticaria, but at least you know what you’re dealing with. Hopefully you’ll find ways to treat it more effectively as time passes and you find out what works and what doesn’t.
Definitely keep us updated! Best of luck to you.
Jesse Gordon says
AlphaOne — The first few months are the worst; the next couple of years get progressively better. I have had CU for 20 years now and it no longer hampers my lifestyle in any significant way — I still HAVE it, but I have work-arounds that make it entirely tolerable. I am responding to you because I am a long-distance runner. I have tried EVERY trick for running — short distance then long distance; hard workout then easy; easy then hard; etc. etc. None worked, until I discovered Claritin. That worked great — but in the interim I switched to swimming and bicycling. They were MUCH better — still got in my aerobic exercise, but no itching and no hives, like running causes. I will write a longer post as a new entry with all the details — my CU is “Asian” too!
AlphaOne says
Thanks Jesse, on a (strange) quick note: I was on Zyrtec (Cetrizine) today, and accidently I got dropped off by my bus to a stop that’s about more than half a mile away (Sort of 0.75 Miles) from my home. I walked in the sun (the temperature was normal, infact, on the cooler side).. But YES, they did come back. Haunted me throughout the road, with the same feeling (I was on cetrizine for the past 5 days, I did not have breakout even once, but I was indoors for most time, but I cooked, It used to scare the shit out of me, now I could cook!).
Conclusion: Even on Cetrizine, If I faced a strong wrath of sun, I would break out! That was shocking and I am all the more worried now.
I will try Claritin as you suggested and will post results in a week.
I did not go running yet.
-AlphaOne