Cholinergic Urticaria - Itch, Extreme Pain And Passing Out

Jul 28, 2014

I am a 28 year old male living in the UK with my parents. I weigh 70kg and am 186 cm tall. I have been suffering with Cholinergic Urticaria for 9 months. 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 Cetirizine, it did nothing. I was prescribed Cetrizine in conjunction with Montelukast, it did nothing. I was referred 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 180 mg, twice a day, and Propranolol 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?

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I am a 17 year old girl and overall healthy.  I have always had fairly sensitive skin but lately I cannot be in direct sunlight for even 10 minutes without all of my exposed skin turning dark red and getting extremely itchy.  Sometimes I will also get nauseous.  The weird part is that once I go indoors the symptoms will usually disappear within a couple hours.  I was researching online and I think it may be solar urticaria, and when researching it I am fairly certain I also have cholinergic urticaria which I used to get on my legs during/after sports practices. I was wondering if anyone had any idea what may be causing more specifically the sun problem and what to do about it, I have not changed shampoos or anything and don't take any medication.  Also, is there any underlying cause that could cause both that as well as some of or maybe all of the following symptoms, I was thinking possibly hypothyroidism (after reading it often affected the same people as urticaria) because it runs in the family but am not sure:-geographic tongue/benign migratory glossitis-blood on toilet paper (not from period)-constant mild headaches, bad headaches consistently-eyes sensitive to bright lights and light at all-hands hurt, arthritis-like symptoms and worse after writing/hand activity-back and neck aching for months, when I take a deep breath I can hear a squeaky-like sound and my back will often crack when I take a deep breath as well-tired (I have had trouble finishing my homework because I keep falling asleep too early and my grades have begun to drop because of that)-pins and needles ALL the time, I wrote my SAT today and there were probably 5 different times when my whole right leg went numb. Arms as well-I used to get head rushes where I couldn't see after standing up on occasion but they have begun to happen almost every time I stand up and it seems to take longer before I can see again-chest pain-ringing ears, not always, but quite often, at least  once every other day-I have gained weight over the last two years as well but I am not sure if it is a symptom of anything-I think I may have had a slight cold this last week but if not there's also stuffy/runny nose, feel like have to swallow a lot.

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I am a 41 year old girl with Chiari Malformation and Back Pain and I have Postural orthostatic tachycardia syndrome (not really related to my question issue here). For quite awhile I have had back pain (upper/cervical) and lower. I tried to tell the doctors but they always told me it was nothing. Then it got severe one day. I don't know how to explain it but it felt like something happened in my lower back area. The pain was in my back and leg (left side) and it was not in my butt at all. Some days the pain in my leg felt like a stake was being driven in it. Otherwise most of the time it was just plain pain (don't know how to explain it - it was 2 types of pain). Well I finally called my doctor and I had an appt and he got me a couple of MRI's and said that I had a herniated disc and that a chunk broke off of it (he gave me copies of my reports as well)and the chunk was lying elsewhere. Well to make a long story short, he sent me to an Ortho Neuro who ended up doing a surgery...he was like you can do PT (which would mean I still had to live with it), Live with it or surgery. I didn't want to live with it. Well, it took awhile but after so many months/weeks I ended up having PT after the surgery.

Well during PT my pain went from being bad to worse! I cried during PT and after my sessions. I had a couple of weeks here and there I had it put off because of my neuro appts out of state, but it was not long periods of time. Anyway, my PT told me I needed to stop my PT sessions and contact my doctor because they could tell that I was having a ton of pain and I was not getting better - only worse. I did let my ortho know and waiting on my appt I let them know that on some days the pain would spread (it was kind of like radiating) to my right side. Apparently they assumed I meant it was on the right side. During my appt after my MRI, he kept saying the right side - that my results showed nothing about the right side and he left it go at that. I kept trying to say it was on the left but spread to the right (radiated on some days). He did not listen to me. I let him know that my leg was weak and I kept falling. Still didn't listen. My appt was directly after my MRI so he read it and didn't have the radiologist results. I was so devastated as I had no idea what was going on. I decided to obtain my results and after I did I had an appt coincidently with my regular doctor and I told him about my appt and showed him my results. He seemed concerned and told me that I needed to contact the ortho and ask them to explain my results and go over them with me. He said I had a right to have them explained to me. He didn't because he was not the one who ordered them and it is not his area anyway.

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The last thing is that again my disc is herniated and compressing the sciatic nerve. The rest is not concerning as it is normal they said: Enhancement in the surgical bed as well as along the left side of the thecal sac and encasing left S1 and S2 Nerve Roots. Although it has been 9 or 10 months since my surgery on my lumbar area, they said that is normal to have.

I am really worried about the pain and the falling - the fact that my leg is like a noodle and only getting worse. I am so off balance and more. I have a ton of symptoms but they say the other stuff is neurological and related to my P.O.T.S. I have been more nauseated and throwing up more than ever (although it is not causing me to lose weight, because I don't walk as much because of the problem with walking and the pain from exercise (as found out in PT). I assume the nausea and vomiting is from the extreme pain. I am so tired of being ignored by the doctors. I don't think my regular doctor would tell me I need to go back to the ortho if he didn't think something was wrong too. I feel like crap and I just want to feel better. I may never get better from the P.O.T.S. or the Chiari/Cervical pain, but there is hope that someone can fix my back problems. My walking is important to me because I love to take walks with my family and I love walking in the snow, etc. I want to be able to do more things. I can't go see the specialist (for my neuro stuff) until I get this taken care of, as they are out of state.

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