Cholinergic Urticaria (Chronic Heat Hives)-Cholinergic Urticaria.net I Get Itchy Heat Hives (Cholinergic Urticaria) When I Get Hot or Exercise

Yesterday my wife had finished taking her Nclex boards (to get officially licensed as an RN Nurse), so she had the day off after she was finished. When she got home, we ate and spent some time together.

I know this sounds corny, but we were watching some “Leave it to Beaver” episodes on Netflix (I LOVE Netflix by the way). That show is so old (it is in black and white), but I still think it was such a great show. In fact, I wish real life was so innocent and nice as it is portrayed in that series. For those of you who don’t know what I am talking about, it is about a small boy “Beaver” and all of his mischievous things he manages to do in each episode. I know, a bit geeky for a couple of 20 somethings to watch, but oh well.

Anyway, after we watched a couple of episodes, my wife suggested we visit the local park. I had previously been wishing I could get out to get some sun exposure anyway, and I was a little tired of staying indoors all day for the past few weeks, so I agreed to go.

So we got in the car, and off we went. I didn’t take a Zyrtec before I left, for a couple of reasons:

1. I usually take the Zyrtec-D because it isn’t quite as powerful and doesn’t make me drowsy, but last time I took it I actually did get drowsy. It kind of ruined my whole entire day, as I was so sleepy I could barely focus.
2. And most importantly, they haven’t been stopping the hives lately at all. So the way I look at it, I may as well not take them if I am going to feel like crap (sleepy) and still get hives.

Anyway, we finally got to the park and walked around for a while. It was cloudy when we left, so I was glad and thought I could get some outdoor exposure without getting baked at the same time.

Knowing my luck, the sun came out full force after a few minutes. I was fine for about 20 minutes while we watched the ducks play in the water, and I tried to stay in the shade as much as possible. I didn’t even get prickly.

Then we walked down to another area, and the sun was beating on me the whole way. As we stood there, I started to feel it coming on. I can always sense an attack, because my entire skin gets this sensation on it. I call it my “Spider-sense” like in Spider-man. It started as a couple of pricklies on the back of my neck. I told my wife, “Oh no, I am getting a little itchy.” I could feel the Cholinergic Urticaria trying to creep its way into my flesh.

I backed off into the shade to try to dodge the attack. It didn’t work. The sun was still shining and seemed to even intensify a bit, and the shade wasn’t helping. Then it got worse. The stinging feeling starting randomly popping up all over in random spots. It feels like I get pricked with a small needle, and then it itches really badly for a second afterward. This all happens really fast, and it moves from one area to the other.

This cycle continued, and it kept randomly popping up all over. I started to scratch, and scratch, and scratch. First my head, then my chest, then my back, then my forehead, and on and on.

I started to get really annoyed. My wife could see the frustration on my face, and she said, “Do you want to leave.”

“Yes,” I replied. “Let’s get the heck out of here right now. My hives are getting bad.”

So we had to walk all the way back to the car, and the hives were full force the whole entire walk, and were getting worse. I was scratching like crazy, and just kept saying, “I am so tired of this.”

There were people out too, and I tried to make it look as nonchalant and normal as I could, but I had to scratch. The pain and itching was almost unbearable, and it wasn’t letting up.

We finally made it to the car, and of course thanks to the greenhouse effect it was super hot. So I immediately blasted the A/C on full blast, and began to drive with one hand while frantically scratching myself all over with the other hand. I was going nuts scratching myself all over and trying to keep up with all of the “pins and needles.”

The hives were still stinging me everywhere, and at this point I just lost it. I let out a big scream saying, ”Dang it..What in the HECK is wrong with me Why in the HECK do I have to feel this torture almost every day.” My wife jumped, as she didn’t expect a big loud outburst.

I then went on a screaming rant for the next 10 minutes about how much it sucks having hives, how I hate it, and how I am so tired of living like this. This is odd for me too, because I am usually really quite and calm acting. I was so upset I just felt like I was going crazy. Like I could cry and scream and pull my hair out or something.

My wife just sat there and listened. I hate how my hives have to not only affect my life, but also hers. She is always great about it, but it still stinks!

Eventually the hives faded once the A/C got going. Like always, I felt drained and depressed afterward.I looked down and had tons of little red dots (hives) on me again. I usually only get those when I have a bad attack, and this was a very bad attack. When I got home I could see how my entire chest was flushed bright red, but it had faded during the drive. I would hate to see what it looked like during the actual attack.

Needless to say, I was pretty down in the dumps yesterday, and even today as well. I often talk on the forum about trying to maintain a positive attitude, and to not let the hives get you down. I believe in this attitude wholeheartedly, but unfortunately, it is easier said than done. This is particularly true when one experiences a really intense and emotional reaction like I did yesterday.

I am positive most days, but when I have days like I had yesterday it really affects me mentally. I feel like I am being tortured for no reason. I have no idea what is causing it or if it will ever go away. I get extremely upset and bitter towards live. I begin to loath life, loath the hives, and everything else.

I feel like I have nothing to look forward to. I have no idea if it will ever go away, or if I will ever be able to have the health I once had just a mere 8 years ago. And regardless of what I try to tell myself, it has MAJORLY impacted my life (and mostly in a negative way).

I find myself stressing about silly things in fear of an attack. I find avoiding as many social events as I possibly can. Instead, I seek solitude and isolate myself in a way to avoid attacks. Between my stomach issues making me avoid going out to eat, and my hives making me avoid doing anything physical, I basically do nothing. Dollywood was the most fun I have had in a while, and the hives even managed to sting me during that.

The truth is, people can live with CU, and I believe in making the most of it that you can. After all, it isn’t like it is bad 100% of the time. It kind of comes and goes in intensity. But it is downright hard live with this at times. Sometimes people just have to break down, or at least I know I do. There are just some days when a positive attitude doesn’t cut it any longer. It is time to face reality. It is time to be bitter, and rant, and let out steam.

I honestly don’t know what in the heck is going on with my body, but I hate it. Why oh why do I (and we) have to keep living with this. Can’t we get a break? Can’t we all just have a break from this torture? Why me, why you? Why can’t doctors figure this thing out? Grrrr.

Furthermore, sometimes I get pretty depressed about life in general. As I have stated on the forum before, each outbreak reminds me of my own mortality. It reminds me that, “Hey, your body is not working right, and one day you will die because something else in your body will screw up. Have fun.” I wonder if I will suffer and even get worse until my life comes to an end by some other disease.

This gets me even more down, because I realize the fragile nature of life. We live to die. There is sadly a lot of suffering felt in most cases (except for those few lucky ones who die in their sleep). I don’t know how or when I will die, but I know that I am suffering right now. Sometimes I wish I didn’t have to suffer through this ever again.

Not that I am suicidal, because I am not at all. I just feel like life loses its luster when your health is stripped away (or damaged).

Update on My Diet & Stomach Issues

Well, I have been eating healthy again with no junk food or processed foods since Monday. So far my stomach still gets a bit bloated even when eating healthy foods, and my hives (as mentioned above) seem to still be rather intense.

As I mentioned in my last post, I am starting to wonder if perhaps I have some type of in chronic inflammatory bowel disease which could be responsible for everything (hives and stomach issues). Hopefully I can figure this stuff out and perhaps see a doctor within the next few months if something doesn’t get straightened out in my body.

I swear, it is times like these when I seriously start considering taking some more extreme medicines (like corticosteroids or steroids). But then again, there is no guarantee those will even work.

Anyway, I just wanted to sort of rant and share my experience yesterday, and also update on the diet/stomach thing. I hope everyone’s hives goes away soon, and I hope they aren’t giving you grief right now.

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My “stomach issues” always have me wondering if how they are connected with Cholinergic Urticaria. When my stomach feels bloated, achy, or crampy, I usually have a more intense level of hives.

In contrast, when my stomach feels really great and my digestion is great as well, my hives seem to be a lot less intense. This has always puzzled me, and I have often thought that perhaps it was just due to a food allergy, or just a coincidence.

After some research, however, there could be another possible explanation which could count for all of my symptoms (hives included). What is it? Inflammatory Bowel Disease (IBD).

What is Inflammatory Bowel Disease?

Inflammatory bowel disease is any type of bowel disease which leads to inflammation of the intestines (small or large). There are many different diseases that fall into this category such as Crohn’s disease, ulcerative colitis, and more.

Some of the symptoms of IBD include:  abdominal pain, vomiting, diarrhea, hematochezia (bright red blood in stools), weight loss and various associated complaints or diseases like arthritis, pyoderma gangrenosum, skin symptoms (such as hives or rashes), and primary sclerosing cholangitis.

I have many of those symptoms that are listed. The main symptoms I tend to get are frequent gas/bloating, severe stomach cramps, and occasional diarrhea (no blood).

I have now been on a very healthy diet for about 4 days now, and my stomach is still somewhat bloated and uncomfortable at times, and when I press down it sorta hurts (although no diarrhea thank goodness).

I am still unsure what I may have (Crohn’s, food allergies, etc.), but something is definitely inflaming and irritating my bowels, and my digestive system has not been very good for years, and sadly, is getting progressively worse.

Could Crohn’s or Inflammatory Bowel Disease Be Linked to Cholinergic Urticaria?

Here are some interesting things I found that tend to overlap with cholinergic urticaria or my stomach issues in general:

• Inflammatory bowel disease (such as Crohn’s, etc.) tends to flare up and go into remissions. So the disease can come and go over the course of years. Cholinergic urticaria seems to work in a similar way.
• My stomach seems to get better when I remove certain foods from my diet (such as dairy). However, IBD can also be improved by removing foods such as dairy.
• There seems to be a direct correlation with my hives intensity and the severity of my stomach issues.
• IBD can cause cancer sores in the mouth, and I have had my share of those over the years.
• My intestines seem to feel as if they are just bloated, inflamed, or something is up with them.
• These IBD diseases have also been linked to Vitamin D deficiences (due to malapsorption).

Furthermore, I have pulled up a couple of references of cholinergic urticaria being associated with Inflammatory Bowel Disease:

There is a forum thread that discusses Crohn’s and hives. Here is what one of the members “Beave” had to say:

When I first started getting Crohn’s problems about 20 years ago, I would break out in hives every time I got hot — a warm day, a hot shower, exercise, being in the sun, anything that warmed me up.  To this day I still get itchy when I get warm, but I don’t get covered in hives like I used to.  For me the condition is called cholinergic urticaria.

Hives are fairly common, for everybody, not just Crohnies.  It’s often difficult to figure out what’s causing them.  You’re thinking along the right lines by considering new medications, new foods, new soaps, detergents, etc.  You should probably let your general doctor know, and maybe consider seeing an allergy specialist if this continues or gets worse.

One other thing:  Benadryl is an excellent antihistamine and effective for hives.  But it has the drawback of making you pretty drowsy, not to mention it only works 4-6 hours.  Zyrtec is also considered really good for hives and is now over the counter, and it’s available as generic OTC as well (cheaper).  It doesn’t make you quite as drowsy as benadryl and it’s good for a full 24 hours.  My allergy doctor recommended zyrtec for me when I have trouble with hives and it seems to work pretty well.

I found that pretty interesting. And then, the very next comment down by “hspencer” says this:

I started with hives about once every three months…then once a month…then weekly…then three or four times a week….I never related the hives to my crohns….but my gastro prescribed a ten day stint of anti-b’s and that (knock wood) brought it all to an end.

I also found a medical research type article where a man had ulcerative colitis and also cholinergic urticaria together. I thought that was interesting because it almost seemed as if the CU was a direct result of his other issues.

So What to Make of IBD and Cholinergic Urticaria?

So there are definitely some apparent connections or cases of cholinergic urticaria occurring alongside Inflammatory Bowel Disease. The question that remains to be seen is whether this is mere coincidence, or if there is causation involved.

As I pointed out in another post, I feel pretty strongly that cholinergic urticaria is a symptom, and not a disease. So in my mind there is a good chance that IBD can cause cholinergic urticaria type of hives.

Does this mean everyone that has cholinergic urticaria has inflammatory bowel disease? Not at all. In fact, if I am correct in my assumption that cholinergic urticaria is an actual symptom and not a disease itself, then we could all very well have different causes for our hives. In other words, other issues could cause CU symptoms, and perhaps IBD could be one of many.

In my case, I seem to think there is something wrong with my intestines, and that it is connected in some way to the CU. I have tried anti-candida treatments (didn’t work), I have tried elimination diets (helped a lot, but didn’t fully cure CU), and more. So far nothing has worked, but cutting certain foods out does help some.

Conclusion: Cholinergic Urticaria and Inflammatory Bowel Disease

At this point I am getting a little worried that I may actually have some more serious issues with my digestion/intestines than I first thought. I suppose time will tell, and eventually (hopefully within the next year), I may venture out to a gastro doc and have my intestines scoped out.

The only disappointing news is that if I did have IBD, it isn’t exactly curable. And I will basically have to deal with it my whole life (and try to maintain remission by taking drugs). It also puts people at a higher risk for intestinal cancer.

I will never forget when I went to one of the dermatologists for my hives. He looked at my while I was having a reaction right in front of him, and he said, “You don’t have any kind of infection somewhere do you? Something is stressing your body out.” To which I replied, “No, not that I know of anyway.”

But if in fact I have had IBD (and I did have stomach issues at this point, I just didn’t think it was abnormal), then it could potentially be causing the symptoms. So perhaps I did have an “infection,” only, it was in my stomach where I didn’t know about it.

What happens is that the intestines get inflamed, swollen, and also even ulcers. This inflammation starts to eventually affect other parts of the body such as the skin, other organs, and more. Hives is definitely a symptom of IBD, as are rashes and of course the stomach pain & bloating.

But it makes me wonder, do any of you have IBD symptoms? Or are there any more Crohn’s/IBD people out there with cholinergic urticaria as well? If so, please let me know.

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