Cholinergic Urticaria has ruined my life
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Hello.
I am a 28 year old male living in the UK with my parents. I weigh 70kg and am 186cm tall. I have been suffering with Cholinergic Urticaria for 9 months. I am in desperate need of help.
Previous to developing this condition, I had no health issues whatsoever.
I have been a competitive middle distance runner for the past 7 years, training every day. I have been heavily active all my life.
This condition materialised in the space of approximately 2 weeks. In that time I became entirely incapacitated in my ability to run.
As a result I visited my GP. A blood test revealed a slightly underactive Thyroid. This became the focus for my Doctor and my skin condition was ignored. Avoiding the immediate prescription of hormone replacement therapy, a repeat blood test was scheduled 2 months later to assess any change in the function of my Thyroid. Sure enough, and without any intervention, my TSH had come down significantly. Although not yet back in the 'normal range', I am schedule to have yet another blood test next month.
My doctor failed to acknowledge any relationship between an underactive Thyroid and Urticaria, and whenever the question was asked he became evasive.
My Urticaria worsened, it's affects no longer confined to when I ran but also when I walk, take a warm shower, lift something, feel stressed, anxious, if I'm in a warm building, when I sleep, when I'm in a car, if I trip. Almost everything I do is now affected, rendering whatever I am trying to do physically impossible. My outbreaks are not just itchy, they are excruciatingly painful. I often feel light headed and nauseous during an outbreak and have nearly passed out on occasion. I have to withdraw myself from whatever situation I may be in, in order to cool my body.
I worked for 6 years as an Account Executive, but last year decided to try something new. I have since lost my job as a Postman, having fallen short of the attendance standards required during probation. I started in January, and was fit work due to cooler weather conditions. In May, whilst on delivery, I was unable to continue. I was unable to work and after 15 days of sick I was dismissed.
Because of the warm summer weather I am extremely unlikely to find alternative work. The thought of sitting in an interview wearing a suit in this temperature causes me to itch. Driving my car is often not possible, nor safe, and I cannot wear anything more than running shorts and a loose fitting t-shirt. My aforementioned symptoms of Urticaria are simply not conducive with job searching/working. Despite having been in full time work since graduating, I cannot apply for Disability Benefit because I have too much money accrued in savings, most of which I had intended to use as a deposit on a house. I cannot apply for Job Seekers Allowance because I am unfit for work.
I was prescribed some Cetrizine, it did nothing. I was prescribed Cetrizine in conjunction with Monteluklast, it did nothing. I was reffered to the Dermatology unit at my local hospital. I provided a physical demonstration of my Urticaria and was prescribed Fexofenadine, it did nothing. I have since been placed on Fexofenadine 180mg, twice a day, and Propranalol 40mg, twice a day. Despite saying he has never seen such a severe case of Urticaria, the specialist doesn't want to see me again saying he has very little more to offer in the form of treatment options. 4 weeks on and despite feeling ill most of the time, these tablets are doing nothing.
I have scheduled an appointment in September with a separate Dermatologist in order to get a third opinion.
I am depressed. My life has stopped. I am now, as I am everyday, sat on my bed. Confined to living a solemn and sedentary existence. I feel lazy. I feel worthless. I cannot socialize for fear of suffering an outbreak in public. My fear is only further compounded by the thought of suffering an outbreak and being unable to affect it. The pain is shocking. I cannot imagine the toll this has already had on my health both mentally and physically; the physical pain of an outbreak seems an entirely unnatural and extreme stressor for my body to have to deal with on a daily basis. As is my transition from running 75+ miles per week, to doing nothing at all, alongside my rapidly deteriorating mindset.
It's formally documented that this debilitating condition has a greater impact on ones quality of life than that of skin cancer, yet because it's not life threatening in itself it seems no one wants to know. Why is so little known about a disease with such devastating consequences?
I need help. I life like this is a life I do not want to lead and will not continue to lead if I do not witness a significant change in my circumstances. I've had enough and am now very suicidal.
12 likes, 237 replies
ann09075 CU12
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Methotrexate helped me because my hives are autoimmune related. Then i was also given plaquenil as a maintence drug. Check with a doctor that is a rheumatologist and allergist in case other medicines don't work. prior to learning that I had an autoimmune disease, I did use xolair which worked well during one episode. It did not work for me the following episode, which had baffled all the doctors.
Fyi....my mom has rheumatoid arthritis and my dad had diabetes, so the autoimmune disease manifested in me in the shape of hives. They say autoimmune diseases can be genetic, but often they change from one generation to the next. Thyroid problems could be autoimmune as well.
I am now off of all medicines and I am going back to visit my doctor because I am having lots of joint pain. I don't know whether I have rheumatoid arthritis but some days I feel as if I do.
I wish you the best in your journey! Let me know if it helps.
john04187 CU12
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re08763 john04187
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re08763 john04187
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1. Watch what you eat
2. Do exercise
3. Eat things which are lighter for your digestive systems
You need to get your systems back to normal and also would need to maintain it- else you will have to suffer, unfortunately
mh96526 CU12
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Please try taking 1 antihistamine (like Zyrtec) AND 1 antacid daily. I had severe hives for two years following my hysterectomy. Sometimes my feet would swell so much that I had no arch and my skin would split. My hives were caused by pressure, stress, heat, you name it. Once I started taking both the antihistamine and the antacid together every morning, I stopped having hives after a couple of weeks.
From what I understand, those individuals with chronic urticaria need to block both the h1 histamines and the h2 histamines. H1 histamines are blocked by the allergy type of antihistamine and h2 histamines are blocked by antacids.
I took that combination for 9 years with great success. Zero issues with hives. Now, I don't have to take either.
AvisB CU12
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tonello26977 AvisB
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julian18620 CU12
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Diet (as advised by the good people on here) has hoped massivly.
Diet and large doeses of antihistamines as directed by immunologist keep things at bay... when they get out of control a few days of steroids sorts it out again and I can cut back on things.
At it's best, with the diet I have got down to half a fexofenadine a day and one older style antihistamine at night time.
I don't like for one monet relying on drugs (especially given I am an osteopath) but I hate even more being covered in urticaria and having my head and face swell up.
As to mention on this thread of types of hives I get everything from tiny little red spots with white halos, to textures spots about the size of a 2p which make me look like a leopard to massive welts which cover the whole of the side of my body.
dinky_dee CU12
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josh65121 CU12
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I was on antipsychotic medication for some years and suddenly got this - same red dots and excruciating pain driven by external heat or even mild exercise. It reduced me to the same emotional/work state as the OP.
I was on aripiprazole for my mental health and nothing else.
I went back and forth with several GPs trying antihistamines and steroid creams. Nothing made even the slighest positive difference. I couldn't sweat and I couldn't really go out either. They eventually referred me to an NHS dermatologist who was useless. Back and forth with the GP more, and eventually I paid to see a competent dermatologist privately (Ian Coulson if you want to look him up - very knowledgeable and helpful).
He prescribed propantheline at the initial meeting which stopped me sweating completely and therefore stopped the pain/hives too (since it was related to the sweat trying to get through). The great thing with this is it's mostly side-effect free and you can probably persuade your GP to try it. It's obviously a temporary fix but it will stop the pain quickly.
That bought some time in which he did a biopsy when the hives were present, looked at it and saw that sweat glands were in fact blocked. He precribed prednisone (2 weeks at high dose IIR). It helped in the short run but came back after.
Eventually, by chance, I stopped the aripiprazole and it cleared up. Went off and on the aripiprazole a few times to be sure and stopped it competely. Other antipsychotics produced the same effect at that point so I made it my priority to get off all of them (which was difficult and involved more private appointments to get a competent psychiatrist, but worth it).
I left it there with the dermatologist because it was the end. We assumed that I had some weird allergy to this class of meds. We didn't bother trying to find out how it was related or how it came about - but I was happy because I was pain-free.
This continued for a few months and now, I get it the same hives very occasionally. I also noticed that my heart rate is high, as it was then (a side effect of the antipsyhotics) and my skin is very dry, as it was then. My theory is now that it might have something to do with long-term dehydration (too much coffee, little else to drink for a long time). I need to drink a lot of water for some odd reason but if I do, I am fine.
I also noticed recently that I acquired an allergy to something in a shower gel so maybe there is an immune problem going on too.
My advice to you is:
1. Try to eliminate things that you could be allergic to, be open-minded about what you "could" be allergic to
2. Try to drink as much water as possible for at least 2 weeks
3. Failing that, pay to see a competent specialist
I'd like like an answer to "why" I have this problem, now an occasional problem, but realistically, the NHS won't give two hoots unless I'm obviously dying and it could take a lot of private appointments to get to the bottom of it
As for your long term health, after mine subsided, I was instinctively terrified of heat. That took a few more months to go away. Apart from that, I don't notice any residual problems.
tonello26977 CU12
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tonello26977 CU12
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I like this algorithm because if gives specific next steps to take when certain pharmaceutical modalities fail eg what to do when omalizumab fails etc. Hope this helps
thenamesyuuki CU12
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renni01775 CU12
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My experience has taught that it is more about managing the symptoms. Touchwood i now have only 25%of what i originally had. So would like to share it, if it worked for me, it may work for you too.
I have been living with the same problems for almost 20 years. Initially i developed allergy to metals containing nickle so no imitation jewellery for me. Slowly itchy fingers and feet followed up. Warm temperatures aggrevated itching, i scratched like mad and use to hurt myself as i had no control over it. Mostly it happened at night, i used to wake up with swollen fingers which turned into flaky cuts and pained like hell. I was embarrassed to show my hands as they were always badly bruised and cut. As everybody else i went through a lot of medication which helped only for a few days. I was fed up of being experimented on so i decided to stop medication.
I tried finding reasons and conditions whenever i had a flare up. It turned out that 1. Digestion 2. Extremely dry skin 3. Stress or tensions especially when i felt low or trodden, exploited or depressed. 4. Friction, pressure, rubbing or trying, whichever restricted the blood supply to the vessels.
I took probiotics for some days, ate lesser than my fill so that i should not be on a full stomach and strictly routined my meal timings. Ate less and early dinner to give it 2-3 hours of digestion. Avoided the food that flared gastro problems for sometime. Strict sleeping routine and hours. My itching started receding. Yes, it is true, it took some months but it receded.
For dry skin, i took vitamin e capsules for 20 days and applied evion cream liberally. I also massaged my body with oil everyday which in addition to the cream kept my skin well chapped. This also helped in easing itching and scratching. After years of flaky cut skin, today my fingers are comparatively soft and clear.
As for stress, i started meditating, relaxing my stressed mind by diverting myself to little tasks that on completion gave me boost. I became positive towards life and forced myself not to think negative. On the lines of some what, now if i have this life i should try to make the most of it for myself and for others especially charitable and community work to make my life worthwhile by helping others. Believe it or not it was like cheating my own mind but it actually got me out. I avoid lifting heavy bags as it is a very quick trigger, avoid wearing rings or very tight fitting clothes. Try to wear cottons and breathable soft fabric. I won't say that today i am completely cured but i am free to an extent even when i get a flare up i know i can manage so i try not to panic as it makes it worse. Taking my thyroid medicine regularly, left the rest to god, problems are still there and depression comes around at a slightest excuse but have to live this life, it gives me great consolation and confidence that i explored myself and found a better treatment than most qualified specialists and i am free of meds too. So, give your self some peaceful introspection and try finding triggers than taking one at a time try managing them. I am sure if i can do this you can too. Best of luck
Kittygan CU12
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tonello26977 Kittygan
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renni01775 Kittygan
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I know it is so frustrating to have something that just doesn't leave you alone peacefully. I have lived with it and when nobody around you try to understand it or shows sympathy for your suffering, it gets worse. What i really hated was that i was just being experimented on with one or the other steroid or some anti allergic with no long lasting effect. There seemed no cure or relief. So, i took myself off all the medicines and started focusing on the possible reasons for my triggers.
Digestion and stress are the biggest culprits. Mine usually triggered due to digestion and flared due to panic and stress. So i identified the foods that were responsible for it which mostly comprised of those hard on stomach or which after eating caused flare ups. Another thing i noticed that the attacks were more prominent after dinner. I totally avoided those foods, ate food that was light on stomach and less than my fill. I preferred skipping dinner rather than having it late. High proteined diets and late night carbs induced indigestion. I also took probiotics for some days to enhance my digestion. Exercising really helps. You have to avoid having gas in your system, so after eating try keep doing light work so that the food you ate gets down and you start feeling lighter.
Keep your skin well moisturised or oiled as it becomes extremely dry. Creams were just not greasy enough so i shifted to oiling. I take vitamin e with d3 for10-15 days every month. It seems to help immensely in healing my cuts. Evion cream also helps a lot. I also took deworming meds regularly. They don't have a negative effect but clean your digestive tract if you have an infestation.
Last but not the least, go out and exercise even if it's only brisk walks or jogging, feel the sun, the fresh air, greenery and flowers. The work out helps in keeping you light and the rest helps you get over stress by diverting and refreshing.
Please try not to panic, it actually makes it worse. Accept your condition and help yourself in identifying the underlying reasons to manage them. Trust me, slowly you will be able to control your symptoms. Today, i have started eating back all those foods which i had left once. It's just that i eat them now at day time and in lesser quantity but i am content that i can manage my condition and am far better now. So have faith, this problem can be suppressed, though it may be slow but you will overcome it. Feel free to contact whenever you want.
Best of luck.
Kittygan renni01775
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