This is my first major post here, and I hope it’s not too long, but I wanted to share my experience with this condition, since there is so little information available, and so many folks desperately trying to determine its origins and manage it. My symptoms are now typical of most, except for how they seem to have begun.
First, a little background on me: I’m a 40-something male, thin, though not very active. I’m not the outdoorsy type, and don’t like being in the sun. Even as a young adult, I would sometimes feel mildly nauseated, and suffer minor gastrointestinal issues and headaches after spending much time in the sun.
This is what ultimately led to my aversion to the outdoors and the sun in particular… unlike my mother, father, and brother, who all crave the heat & sensation of sunlight! I’m also not very social, and rarely go anywhere except home, work, and an occasional trip to the grocery store. None of that is due to my cholinergic urticaria. It’s just the way I’ve been since I was a teenager.
I’ve also never been on any regular medication prior to the onset of cholinergic urticaria, though I had used a few different topical treatments for skin conditions as a kid… cortisone cream (I think) as a child, for minor, but chronic eczema, and Retin-A and Benzac W10 (benzoyl peroxide 10%) gels/creams for acne as a teenager. I’ve worked in a factory for 20+ years, which can get quite warm in the summer, but spend most of my time in an air conditioned office. I’m a technical person, a bit on the anxious side, and tend to over-analyze things.
For the past 15 years or so, I’ve also experienced frequent stomach discomfort, from minor grumbling to burning (the former often immediately after I wake in the morning). I’ve attributed this to my anxiety, but after reading many of the comments on this site (including Ben’s excellent posts), I’m considering food allergies more seriously. Now, on to my story…
In Feb. 2013, I was vacationing with family and friends in Cancun. After spending a little too much time in the pool, I developed a sunburn. I wouldn’t classify it as severe, but it was substantial. That evening, I applied some aloe gel to it, and minutes later began itching. The itching quickly became severe, so I got in the shower to rinse off the gel, though I never had any adverse reaction to this gel before.
The itching continued to get more intense, from my torso to my feet, to the point that I could not stop scratching myself for more than a couple seconds! It was becoming maddening. So, I got out of the shower, still unable to stop scratching, as my family called the hotel medical facility. I ultimately ended up meeting with a doctor in the hotel. Though he administered a cortisone shot, by the time I saw him, the itching was already subsiding.
In hindsight, I presume it felt better from the air conditioned office environment. After the trip, I didn’t give this incident much more thought, though I feared it might happen again someday. So, months later I did a little research, and my symptoms completely matched a condition is known as “Hell’s Itch”, or “Devil’s Itch,” and that it is not well understood. Once I learned of this, I figured I would just need to be more careful with sun exposure.
About a year went by without any further incidents, when I started to develop a mild itchiness after showering, and when I would wake up in the morning (from under blankets). I would itch from head to feet, but it wasn’t severe and didn’t last long, just a few minutes. And there was nothing visible… no rash or bumps of any kind. Suspecting an allergic reaction, I spent the following months evaluating soaps, shampoos, deodorants, and laundry detergents. But nothing made any difference. So, I began to wonder if it might be related to dry skin, since it seemed to get worse when the temperatures got cooler, and my skin got drier. So, I tried keeping my skin moisturized with lotions, but didn’t notice an improvement.
Another year passed, and I contracted what appeared to be RHS (Ramsay Hunt Syndrome), a rare affliction that is caused by the Chicken Pox virus, and attacks nerves in the head/face. Symptoms included ear ache, swelling inside and outside my ear, 70% hearing loss (fortunately temporary), jaw joint pain, and partial taste bud paralysis. I was prescribed Prednisone (steroid) and an antibiotic, and after a week or so, the symptoms subsided, though it took several months for my hearing to fully return.
This entire episode may be completely unrelated to my cholinergic urticaria, but I mention it because others here have had major illness or treatments (including antibiotics) just prior to the onset of CU. However, since my hives didn’t actually show until months after this illness, I suspect it was not a cause.
Then, around Sept. 2015 (about 1-1/2 years after the chronic itch began), I was covered in red dots when I got out of the shower, and of course, they itched. From that day forward, the hives return daily. In fact, they almost never completely vanish. Instead, they vary in intensity, depending on my body temperature (affected by ambient temperature) and my anxiety level. Though most pronounced on the back of my hands and arms, when the symptoms are more intense, they appear over most of my body — hands, palms, arms, chest, torso, legs, feet — pretty much everywhere except my face, though my scalp usually itches during these times, especially in the morning.
Though they look terribly uncomfortable when covering 30% of my hands/arms (the most affected area), the itch is usually more of a nuisance, and will subside within minutes of cooling/calming down. The hives themselves usually take about 30 minutes to almost disappear. A hot shower really sets them off! Unlike some folks here, sweating doesn’t seem to be a problem for me, and I haven’t noticed any change with it.
Over the past several years, my stress level has been on the rise due to several factors, and it had reached a new peak about the time my hives first appeared. Though I initially felt like I was managing the stress well enough, I’m not so sure of that now, and suspect it has weakened my system enough for this condition to overtake it. And now the hives further feed my anxiety… a vicious circle!
Several months ago, I saw my doctor/GP, who I typically visit less than annually. And though his office was cool, talking about this raised my anxiety enough for me to show him what a very mild breakout looks like. He admitted he had not seen a case quite like mine before, and he began doing a little research as I described more to him. Then I handed him a written summary of my experiences, including a list of symptoms and a self-diagnosis. When he looked at my diagnosis, he smiled and said he had come to the same conclusion… Cholinergic Urticaria. I told him I was experimenting with different antihistamines (mainly cetirizine), and thought they were slightly reducing my symptoms, and he also agreed with the treatment direction I had taken.
Bloodwork ultimately came back with nothing out of “spec.” He didn’t know what else we should do about it, other than refer me to a dermatologist. I had already read many of the posts on this site, and wasn’t interested in seeing the specialist, since I was convinced that this is not really a skin condition, but something more systemic and obscure. When I mentioned that some folks on this site had success with Doxepin, he agreed that sounded reasonable, given its combined anti-anxiety and anti-cholinergic properties.
He started me on a very low (10mg) dose, which didn’t have a measurable effect. So, he increased it to 20mg, which may have reduced symptoms slightly, but I couldn’t be sure. I then tried 30mg for about a week, still with no obvious improvement, before giving up on it altogether. I realize that is still a light dose, but I was also having trouble accepting the side effects, as well as the idea of having to take prescription drugs forever to manage it… not that there is anything wrong with that, but I’m not accustomed to taking maintenance drugs, and I’m always concerned with potential long-term effects. I haven’t seen him or any other doctor since, but as summer approaches (in Ohio), I realize this condition may become more than I can manage on my own.
Since my full-blown urticaria didn’t manifest until temperatures were cooling last fall, I don’t have experience with it in a warm climate. Even in cool temperatures, when I exert myself for just a few minutes (or get nervous/anxious), I break out. So, I’m really concerned as summer approaches. Already this spring, I’ve spent a few brief (20 minute) moments in the warm outside air doing light work, and the breakouts have been comparable to taking a very warm shower, which is pretty bad. The degree of itching was still tolerable (barely), and I hadn’t taken any meds for it, so I’m somewhat confident I’ll be able to deal with it this summer… but I don’t really know yet.
Months ago, I dabbled in stinging nettle (loose leaf) tea for several days, since I happened to have some. I drank quite a bit of it, but it didn’t seem to do anything… except send me to the restroom a lot more often! But I’m still considering trying the extract that has been mentioned here. I also bought some Hylands Hives Tablets, when anticipating a breakout, but I haven’t tried them yet. For now, I’m back to taking a standard (10mg) dose of cetirizine when I foresee a hives-inducing condition, and though it doesn’t do much for the appearance, it seems to help with the itching. But I rarely take it, so this study is not conclusive yet.
So, has anyone else heard of a similar onset of this condition, especially in reference to the sunburn? I’m pretty sure the post-shower/bed itching that started a couple years ago was a precursor. And the earlier sunburn incident shares a striking similarity, though the itch was actually much more intense and lasted longer. But maybe it’s just a strange coincidence. My symptoms are now exactly like most of those reported on this forum… heat/anxiety induced red bumps, wheals, prickly itchiness, which can come & go in a matter of minutes, depending on my mood or temperature.
Thank you to Ben for maintaining this site/forum! I have read through much of it, and it is an invaluable resource for those of us who suffer from this condition.