I’m 19 years old, turning 20 in a couple of months, and I’ve been suffering with Urticaria for near enough a couple of years now. I’ve seen a couple of doctors and consultants, and apparently I suffer from Chronic Urticaria Pigmentosa, which is induced by stress, anxiety, exercise, water and temperature.
I’m currently at University in my second year here in the UK, and I’m currently on two Cetirizine Hydrochloride 10mg tablets a day, plus one Rupafin 10mg tablet a day which I’ve only recently started. I used to take a Fexofenadine 180mg a day instead, but they weren’t doing anything.
Like a lot of people on this site, my Urticaria is triggered very easily and will happen numerous times a day. The pain I experience is quite severe, to the point where I sometimes uncontrollably spasm out until I calm down. I used to play a lot of sports and drummed in a band. However, I’ve given most of this up, as I can’t do them as I find my pain too uncomfortable to do any of them any more.
My question relates to the problem I think I’ve now got in my head. I think I might be starting to suffer from depression and severe anxiety. My Urticaria has pushed me to the point where I resist leaving my house unless completely necessary, which in my case is for lectures and tutorials at University, and I’ll still have a couple of attacks whilst doing these.
Most days I don’t bother getting dressed, and I’ve lost nearly all motivation for any of the old things I used to do. I find it so uncomfortable with the pain of my Urticaria to speak to new people and even friends who I’m not that close with, I’ve inadvertently slowly stopped speaking to them. I’m that desperate to stop experiencing this pain.
I’ve had a couple of experienced where I’ve just broken down on my own and cried for hours, and I can’t seem to shake any of this off or ‘snap out of it’.
Coupled with all this is a massive feeling of guilt, as I’m sure there are people out there with Urticaria and other diseases way worse than mine, but I really just can’t help feel the way I do. I don’t wait to self diagnose myself with depression or anything, but at the same time I feel too scared to discuss it with anyone in case they slam me down and tell me this is all in my head, like I was told when I first started noting signs of my Urticaria.
This is mainly the reason I haven’t mentioned this to anyone until now: I didn’t want to seem melodramatic or patronising or insult anyone, but I really just don’t know where to draw the line.
Any feedback would be gratefully appreciated, and I wish you all the best in your battle against this horrible illness.
What’s Your Question?: Where to draw the line?
-HivesAhoy
Ahmed says
I am so sorry for you, but it’s like you say all the words I am saying here too ! no one is listening and the crazy damn word ” it’s all in your head ” !
I just wanna tell people : why don’t you try it and then you will get to know If it’s in my head or not !
I actually have it for like 11 years now, I am 24 years old and almost 25 and I had it when I was 14, but the weirdest thing is that, my mother has it and my sister got at the same age with me, and also my grandfather (my mother’s dad) had it !
but my father don’t have it !
I am not sure how is this thing started and why and whether it has something do with Genes !
I think I will try my best as you to stay positive until something better happens.
keep fighting, and don’t give up π
HivesAhoy says
Hello Ahmed, sorry for the slow reply I’ve been snowed under with Uni work. Yeah getting people to try and understand can sometimes be the most frustrating thing! Wow that’s an awfully long time to be suffering, I can’t believe that you’ve had to put up with this for 11 years :/ I feel for you mate. No one else in my family has had anything even remotely like this, so I really have no idea about the cause. One day I just woke up and there it was :/ Stay positive man, and I’ll try stay positive too for you, myself and everyone else! π Best wishes.
Hivesguy says
HivesAhoy,
It grieved me to read your story, as it almost sounds like my own. I also experienced a lot of depression and frustration over my hives. I also withdrew myself from most things for years, and pretty much felt like my life was over. I dropped out of college and let my hives dominate my daily life.
So many times I’d soak my pillows with tears, fearing that my life was gone and that my future looked bleak and dismal. The night time was often the worst; there’s just something about the night that seems to amplify depressing thoughts.
What you’re feeling is horrible but common when adjusting with the new stinging/itching agony of hives. Of course, I’d recommend you talk to a doctor if you feel you can’t cope on your own, as they may offer some counseling or medication to help.
While many doctors are ignorant of rare hives conditions, most aren’t ignorant about depression. And while I usually caution people to not use antidepressants unless they absolutely have to (I never took them myself), they have helped some people.
A few people have reported that Doxepin, an antihistamine with antidepressant qualities, have helped them.
I wish I could say something that would make you better. All I can offer you is hope for the future. I know that I was at one time hopeless, and now I no longer struggle with cholinergic urticaria. Life can get better, and you have to accept that by faith right now. You have to be diligent about forcing positive thoughts into your mind, and you can never give up trying to discover new treatment options.
I’d also add that although my own experience was horrific, and I’d never want to do it again, I’m glad I went through it. If nothing else, it led me to a place of inner weakness and hopelessness, which ultimately led me to a relationship with Christ. That is by far the single greatest thing that has ever happened to me as a human being.
As a great preacher once said: Men throw broken things away. God rarely uses a man unless he first breaks him. And C.S. Lewis wrote: …God whispers to us in our pleasures, speaks in our conscience, but shouts in our pains: it is his megaphone to rouse a deaf world.β
There are a lot of people on this forum going through exactly what you’re going through. Hang in there. Life will get better. Don’t give up, friend.
God bless,
Hivesguy
HivesAhoy says
Hello Hivesguy,
Sorry for the slow reply, uni work is keeping me very busy at the moment. Thank you for your kind words and comments, I’ve read a lot of your comments and advice on this site and it was party down to you that I plucked up the courage to type out my own issues. Even when typing my original post I broke out into an attack merely because of the stress and anxiousness (if thats a word) of the idea of someone else reading my problems :/ Just every little thing no matter how irrelevant seems to set me off.
Reading your comment is comforting as it sounds like we have a lot in common, and in a strange way it’s reassuring to know that there are people out there that can relate to what myself and others are going through. I seem to go through stages of this ‘depressed’ state, like for a couple of weeks/a month of two I’ll be fine but then for a similar amount of time my perspective seems to completely switch and everything suddenly seems to become so much more of a challenge to stay positive. I feared this made me seem weaker as a person compared to some other sufferers and still do if I’m being completely honest, but this is just something I guess I’ll have to work on as time goes on. Your own story gives me renewed hope and my words alone cannot thank you enough for taking the time to talk to me and everyone else on the site. Those are also some fantastic quotes, I will definitely have to remember them when feeling down. I wish you all the best and hopefully I’ll be able to report back in a couple of months after I’ve seen yet another doctor and hopefully I’ll have some better news π best wishes friend.
Hivesguy says
You’re welcome, HivesAhoy.
I totally agree about the ups and downs of having this. It’s completely normal to feel what you’re feeling, and pretty much everyone one here has gone through all of that, including me.
I hope the uni work goes well, and keep us posted if anything changes. Let us know if you do end up going to the doctor.
God bless, friend.
Sally says
Hi HivesAhoy,
It definitely sucks to have to go through the hives and everything else that comes along with it, so I feel you. I started getting the symptoms early on in elementary school and still have it the condition (I’m 21 now) so you can imagine what gym class was like. It’s frustrating and depressing and basically kicks you when you’re down. Fortunately enough, the symptoms went away within a few hours once I calmed down.
Where I draw the line is doing whatever I’m comfortable with. Somewhere around 2 years in, I assumed the hives were a recurring thing and figured I needed to find out the limits of the symptoms so I could better control it. As much as I don’t like exercise, a sedentary life never did anyone any good.
So I started pushing the limits of my hives for the next several years–how much exercise I could do regardless of the symptoms, what sets it off, how much people around me could tolerate, how fast it came on and how fast it went away, what made it go away faster, etc. I wanted to see how much I could tolerate. I never took an antihistamine, any other medication, or changed my diet during this time (I took my first Benadryl last month, actually. Best nap of my life).
A main point was not really caring what other people thought. “Yes, I have hives. No, I don’t enjoy them. Basically, I’m just as freaked out as you.” This was my mindset, as blunt as it sounds. People can freak out or be as apathetic about it all they want but that doesn’t really help YOU. Focus on you, as you try to figure out what your body’s telling you. I realized that although my symptoms were very uncomfortable (I felt swollen, itchy, overheating, and most of all: angry), the main thing that made it worse was what others must have thought of me during my episodes. So, for the time being, I set aside what people must have thought about me and focused on myself.
I’m not entirely sure if my symptoms have diminished–doesn’t seem to be that way. However, overtime, I’ve stopped scratching at the hives–my tolerance for the itchiness has increased. The hives go away faster. I’m more comfortable in my own skin and have adopted…I guess you could say an indifference to what people think of me (of course I still care but I’m not as paranoid about it as before). I can exercise well past the symptoms. And surprisingly, strangers, teachers, classmates, friends, and family are very understanding. It’s not pity, more like curiosity. I meet new people, I have a social life. I can generally anticipate when the hives will come on too.
Basically, my advice in a nutshell is do what you have to do to be comfortable in your own skin and be satisfied with your life. Build your confidence, as this has helped with my anxiety.
My experiences and advice might not be of much help but I honestly hope you can find some control. All the best!
Sally
HivesAhoy says
Hi Sally,
Thank you for your comment, just reading about your story helps me put mine into context and helps me look at my problems from a different prespective which is great, thank you very much π Wow that’s a long time to be suffering, I’m very glad you’ve managed to find a way of ‘dealing with it’ so to speak . I understand what you’re saying about finding my limits and working around them, it’s definitely something I’m going to work towards. And when you mentioned about the worrying about what others thought, this is a massive problem for me too! I definitely think that makes it worse, and contributes loads to the attacks. This whole thing seems to have made me into a very anxious person and I’m constantly fearing if someone sees my hives or spasms and I feel the pain get bigger and bigger. I’m going to try become a more confident person and hopefully like yourself, it might get better. I really hope none of this came across as patronising or anything but your comment really does mean a lot and I’ll be sure to take your advice and start applying it to my own life π Thank you very much, and all the best for the future.
Sally says
Hi HiveAhoy,
Thanks for the reply. And no worries, didn’t think your comment was patronizing at all. I really hope you can find some balance, if not completely eradicate it. Exercising past the symptoms, no matter how many looks you get from others or how itchy it gets does help make the symptoms go away faster (for me anyways). Maybe this will work for you too?
For some reason, I haven’t been breaking out as much whenever I go indoor rock climbing. Perhaps staying in a cool place and letting my body gradually get used to temperature changes helps. (Clinging to the wall kind of makes it hard to scratch myself too so there’s that.)
=]
Sally
Ryan says
Don’t worry mate I am the same some days when I miss out on something due to my urticaria I sit and think why am I like this? Why did god choose me among others to have this illness? And I just break down, it’s good to have a cry tbh because then I’m fine for ages but it just happens, I was on fexofendine the only thing that helped with was when I itched myself my skin didn’t turn bright red which was nice, hope you are okay this is a bad thing to live with. My family often joke about it and say surely it’s not that bad?!This angers me because until they’ve experienced the pain of wanting to rip off their own skin they will never know.
HivesAhoy says
Hey Ryan,
I get what you’re saying, God knows the amount of times I’ve had those thoughts :/ and yeah the Fexofenadine didn’t seem to do much for me at all, they switched me to Rupafin 10mg once daily and they seem to make a slight difference, like it gives me more tolerance before an attack breaks out if you get me. And about the family thing, you’re not alone mate. My family say pretty much the same thing. I tell them what triggers it and they can’t believe it, and I know they think that I must be making it up or something. They’ve got more supportive as time has gone on, and I think it helped me mentally knowing I had their support when they finally understood, so I guess I’d recommend just having a proper serious talk with them sometime. I never really have like real serious talks with my parents, so when I sat down and talked with them about it they seemed to understand more than before, as I’d just sort of told them bits and pieces until then.
The ripping your own skin off thing pretty much describes my internal thoughts most days, but thanks to the fantastic people on this site and good support, things seem to be slightly nicer than before, even if my symptoms haven’t changed that much. I hope this helped in some way mate, and I wish you all the best.
Matts1 says
Hey, i’m 17 years old and have had CU for about a year now. It’s HORRIBLE and my friends and family just don’t understand the pain and severity of the itch. I’ve missed a lot of college due to the condition and find it extremely depressing at times. However, the one thing that i find helps with the itching is REGULAR exercise. I know that heating up is what causes the itch, but if you can withstand the hives and push on for the first 10 minutes of exercise, the itch fades away for me. I’ve noticed since having this condition that i rarely sweat. Even on a hot day. If i can force myself to sweat a good amount in 1 day, then my symptoms are lessened greatly for the rest of the day. I am extremely annoyed having CU and i use that anger to get through the hives at the start of the run. I advise you to try it, maybe it will work like it does for me ? If i don’t go for a run every other day, my symptoms are ALOT WORSE. Good luck!
HivesAhoy says
Hey Matts1,
I feel for you man, mine started around when I was 17 :/ and I hear you about no one understanding the pain, I’ve had the same struggle trying to get people to comprehend the pain and discomfort I was in on a daily basis and still am. I’ve missed a fair amount of Uni, especially last year as I didn’t know what CU was or anything about it, and the stress and anxiety of it all just drove me to stay inside. This year is pretty much the same and even though I’m keeping up with my work a lot better, the amount of social things I’ve missed out on really annoys me :/ because in my head I really wanted to be social and make friends, join groups, do activities, sports and stuff but my body and CU just prevented me for so long and still does to an extent. I’ve got a little better at speaking to new people and a little bit of sport here and there, but not much else as yet.
The thing you’re saying about running is really interesting, as mentioned before I can withstand a little sport here and there but I dont do it regularly. I think I’m definitely going to try what you’re suggesting and see if it helps at all, normally I dont run as I get itchy within like 30 seconds, but if it helps for you then I’m definitely going to give it a shot. I’m glad you’ve found some sort of way of dealing with it and wish you all the best in dealing with them in the future. Thanks for your help and I’ll be sure to let you know how I get on in a couple of months time! π
Michael says
I understand how you feel. I am now 26 and it is hard for me to remember when this started. I believe it was around when I was 16. One of the hardest things about this is that people don’t really understand how painful it is. In their mind it is just a little itch. I have had people tell me that everyone itches when they start to get warm. One time my dad said he thought it was all in my head. I have scabs all over my body from scratching to hard. When it is really severe I start to shake and spasm. I hate when people ask me about it because it is hard to explain. Then when they do ask it will usually cause an outbreak. It sucks staying in the house trying to move as little as possible for fear of causing an outbreak.
I have lived most of my life in Texas. It is hot during the summer and gets fairly cold in the winters. I noticed that during the summer when I would sweat a lot I didn’t have any problems. Half of the year I was good and the other half I was miserable. I think for me the key is to sweat. I lived in Brazil for 18 months. In Brazil it was always hot and humid so I was sweating all the time. I we even sweating in my sleep. This was the best 18 months that I can remember. Almost 0 outbreaks. The ones that I did have lasted a couple of seconds and were not severe at all. I am now living in Alaska (a terrible place for someone with this condition) I have found that the only way to help me with my symptoms is to keep up the sweating. Thankfully the gym I work out at has a Sauna. The Sauna has saved me. I usually go in the morning before work and on my way home after work. It is miserable the first few minute. Once I break out in a good sweat then I am good for about half the day. During the summers here I can reduce the days I go. Usually only once a day. If you haven’t tried the sweat therapy I would recommend it.