HeatHives.com-Cholinergic Urticaria and Hives

I hate cholinergic urticaria! I can’t help but feel robbed sometimes of a normal life. I especially felt like this yesterday.

It was a beautiful day yesterday. The skies were crystal clear blue. The temperature was very cool and comfortable. It was nice. So my wife and I decided to go to the grocery store and run a few errands. We went to Walmart first, and got our groceries. Everything went fine, and no cholinergic urticaria outbreaks. Unfortunately, they were sold out of the chicken we usually buy. So we decided to stop by another Walmart later in the day to pick up the chicken (since there is a Walmart virtually everywhere now).

Heat Hives Attack Awaits Me at Walmart # 2

So we continued to run errands. Finally, it came time to stop by the other Walmart to pick up the chicken that the other Walmart didn’t have. Unfortunately, it was a nightmare, and reminds me why I hate the winter months with cholinergic urticaria heat hives. I had been feeling pretty good all day. No hint of itching. I have been on this diet now for a month (100% gluten and milk/dairy free). I didn’t even suspect I would break out in hives.

So I got out of the car to get the chicken. Since I was only going to grab some chicken, my wife decided she would just stay in the car. It felt great outside. It was slightly breezy, and the temperature was perfect (although a little cool for most people). I walked in Wally World (that is a nickname for Walmart) feeling great!

But then, as soon as I got about 20 feet inside of the building, I noticed something….HEAT. This is the thing that makes winter unbearable for me. It feels so great outside, but when I go into a building that is extremely dry and heated, my body simply cannot adjust quickly enough. My internal “sweat” thermostat just doesn’t work right.

I started to feel an attack coming on quickly. I said to myself, “It is okay, I am going to the frozen section and hopefully it will be cooler there.” I have used this strategy before when I get hot in stores. So I started to hurry a little more to make it to the freezer sections so I could get the chicken.

Tingle tingle, itch itch, sting sting. It started getting worse. I started trying to get there faster. I had to start scratching a little to try and comfort the itching sensation (even though we all know the scratching doesn’t solve the itch, but we can’t help but scratch anyways). Finally I arrived in the freezer section.

At this point, I was starting to get a little worried. Here I am in the middle of the always crowded Walmart, and I am getting the most unbearable sensation all over my body (even my thighs were burning and prickling-which is unusual because it is usually my upper torso and face). So I am doing everything I can to get cool without being obvious to the crowd of people all around.

I scratch occasionally and try to make it look like I might have a simple itch (although I really want to rip off my shirt and just scratch like crazy!!). I am opening freezer doors pretending to look at food so I could try to cool off. It was bad. I get the chicken, and head to another freezer section hoping to get cooled off and stop the outbreak so I could checkout without the pain and itching.

Unfortunately, I could not get my body to cool down! I swear, the heat was being blown down from the heaters they had on, and I could not get cool air from the freezers to hit my body well enough to stop the attack. The heater just kept on blowing heat on me from above. So at this point I know I am in trouble. I can’t get cool, and I have no way of stopping this thing.

I start walking as quickly as I can to the front registers with the chicken in my hands. Of course, walking quickly is a physical activity and my body begins heating up EVEN MORE! Add that to the fact that I am already getting stressed because I am in the middle of a crowded store and I know a bad and painful reaction is coming. Plus I always feel as if I am turning red or something because my skin is burning. I always feel as if everyone will look at me and see me for some kind of freak or something (even though it probably isn’t near as noticeable as I imagine).

So I am battling the itching and prickling, and trying to look normal at the same time. I am walking in a brisk walk to the cash registers.  Thankfully, this Walmart had a self checkout section (which is cool because I love self checkouts). I used to be a cashier at a few retail stores (I even worked at Walmart for a few months several years ago). So I am a pro at the self checkouts.

So I get to the self checkout register, and thankfully there isn’t a line. So I toss the chicken on the belt, hit the “start” button, and proceed to scan the chicken and bag it, while I try to occasionally scratch the bad itching sensation in between scanning and bagging (without looking like a complete idiot to anyone that may be watching me).

I pay for the chicken, grab my receipt, and head for the door. At this point, I am experiencing unbearable pain and itching. It is a full blown reaction, and it hurts and itches. I am going to that door as fast as I can. I get outside, and it is a little cooler, but the hives have gone full force, and there is no stopping them at this point. I am itching all the way to the car.

I jump in the car, start scratching like a mad man, and blast the air conditioner on FULL BLAST. My wife completely understands and feels sorry for me. I sit there and scratch for like 5 minutes straight until the car finally starts to get cold.

In the meanwhile, my skin gets the “chill bump” look, and then the little red bumps start popping up all over my arms and chest. I raised my shirt, and I was really red and flushed on my stomach and chest.

Soon, the reaction slows down, after the car has cooled down sufficiently. WOW! I felt absolutely exhausted (like I usually do after a massive hives attack). I also get extremely depressed for the rest of the night. I can’t help but think thoughts like, “Man if I have this for the rest of my life, my life is going to really suck. What is wrong with me? Why do I have to have this condition? Why? Why? Why? Will this ever go away?”

I also developed a bad headache about an hour after the attack. So needless to say, living with cholinergic urticaria (or any kind of  hives) is HARD! I wouldn’t want my worst enemy to go through what I have to go through with these hives, and what the others that have CU have to deal with as well.

I Miss the Good Old Sweat Days

Sometimes I think about how lucky I used to be before cholinergic urticaria came into my life. I could run outside, and just sweat as soon as I got hot. I could laugh and play and jump around. Nothing. No itching, no prickling, no stinging. Just a normal life. Never a worry about my body going crazy on me. Boy has that changed!

I just wish I could sweat like a normal person sweats. I remember that in high school, my armpits and palms would always get sweaty.  My shirts would be wet around the armpit section sometimes, from where I would sweat all the time. I distinctly remember wishing to myself that I would just stop sweating like that all the time. It was kind of embarrassing sometimes, but I guess it isn’t that strange since I am a guy.

Well, I can tell you that I would give anything to sweat like that again! It just reminds me of that old saying, “Be careful what you wish for, because you might just get it.” I wished I would stop sweating like that, and now, I would give anything to sweat like normal. Now, I wish I could just have the health I used to have in high school, before this nightmare and life changing chronic hives took over my body. I would gladly welcome some moist armpits or sweaty anything!

Sometimes I feel as if my body has been overtaken by some super alien slime. Just like the Spider-man movie where the slime alien took over Spider-man and turned him into the “Venom” character. Since I first got this, I just feel like something inside me changed. I feel as if my entire life is being controlled by this condition. I fear going in places, because I think “What if I have a break out?” I don’t even consider doing 90% of the things I used to do. I don’t even look forward to things anymore either. Vacations aren’t fun, because I know the hives will be right there with me. Who can have fun at the beach when your body goes crazy when it gets hot?

I am lucky that I have an understanding wife. I told her yesterday that she may be doing the grocery shopping alone for the rest of the winter season if my hives don’t go away soon. She was completely understanding, and has been so helpful anyways in doing things for me when I feel I might have an attack. So one thing I can recommend to anyone that has this is find a person (a spouse is best) that can offer not only support and love, but also help you do the things for you that would cause an attack if you did it.

I know they say cholinergic urticaria goes away in most people after a few years (usually ranges from 7-30 years), but sometimes I feel as if I am doomed until the day I die. The only thing that makes me more positive, is the fact that I did go into remission for about 2 years before, and the hope that maybe this diet will work, or maybe when I get a house I can get outside and sweat everyday and be cured, or maybe (just maybe), and I can finally get this thing cured or find out what is causing it. I don’t know.

Plus I try to focus on the positive. At least I am not dying right now. At least I don’t have a worse condition (although this one is pretty bad). At least I have a loving wife. At least this may go away someday…maybe.

Update on the Diet Situation:

I am still going strong on the gluten and milk free diet. Although after the attack yesterday it is a little disappointing and discouraging. I have been extremely strict, and have not had 1 instance of milk or gluten in a month now. Everything I eat is either a vegetable that I know doesn’t have any gluten or milk, or the label clearly says “gluten free.” I am continuing on the diet for another month or so for sure, just to see what happens (if anything).

I don’t know if it is diet related or not. But after yesterday I felt like the diet wasn’t helping much. It is still worth it to keep it up for another month or two, because then I will at least know for sure, and I can completely rule out the diet thing for the rest of my life if it doesn’t help, and I can also let everyone that stops by this site know what has and hasn’t worked for me personally.

Anyways, I hope your hives don’t give you a hard time this winter. Hopefully, we can all get through this and come out okay. Hopefully, we can all one day look back at this in old age and think, “I remember for a few years when I was younger I got really itchy, but then it went away for the rest of my life.”

Here are some more interesting things I learned about Lipomas today:

• They have been medically documented being located on the heart, esophagus, brain, adrenal gland, kidney, liver, stomach, intestines, and other tissues including muscle, nerves, and more. (kind of freaky/scary)
• They can obstruct organs (such as esophagus) making it harder for the organ to function properly. They can also bleed, rupture, and more. Source is Here.

I found that interesting. So basically I am thinking if I have a few of these things on the outside of my body where I can see them and feel them, I am bound to have at least one on the inside as well.

It just makes me wonder: Could there be some kind of non-cancerous (SMALL) tumor on the inside of our bodies that could be pressing against some gland or organ, or connected to it making something out of whack in our bodies. Maybe it produces too much of a certain chemical (histamine, etc.). Or maybe it produces too many mast cells. Or maybe it doesn’t produce enough of something? Who knows? But it is worth thinking about at least. Especially since I got CU a few months after I had my first angiolipoma removed. What if others were growing inside of my body and started to mess something up?

I was thinking about it, and it does sound possible. Here is why:

• Cholinergic comes our of nowhere. Tumors can also come out of nowhere and develop suddenly. I know the ones on my body just appeared over time.
• Cholinergic urticaria can go into remission. Tumors can also shrink in size, and go into remission.
• Cholinergic urticaria doesn’t seem to be life threatening or cancerous. A benign tumor (non-cancerous) can also be non-life threatening. You can life with a non-cancerous tumor your whole life as long as it doesn’t interefere with anything major. Some people have had small cysts or tumors their whole life, and lived to be very old. So neither would kill us immediately.
• It does make sense that a gland or organ could be affected by something like this. People that are really tall sometimes have a small tumor on their pituitary gland, and that is responsible for their extreme growth. People can also exhibit other strange symptoms depending on which gland or organ is being affected.

So this is all interesting and makes me wonder if there is a possibility that at least some cases of cholienrgic urticaria could be due to some unknown tumor or growth (non-cancerous) pressing up against a gland, organ, or something like that.

What do you think? Do you think that it could be a cause of cholinergic urticaria? Do you think it has nothing to do with it? Vote in the poll below:

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I just read another interesting article that stated there are sometimes as much as 10 times more mast cells in angiolipomas than there normally are in normal lipomas. Here is one the section of the article stated:

“To characterize the potential role of mast cells (MC) in angiogenesis, this study tests the hypothesis that MC may be more abundant in angiolipomas than in classic lipomas. MC counts were compared in 13 subcutaneous angiolipomas and 15 subcutaneous classic lipomas stained with Giemsa. Angiolipomas had ten times as many MC as did classic lipomas.”   http://lib.bioinfo.pl/pmid:7525671

That was somewhat interesting because we know that there is some involvement with mast cells and cholinergic urticaria. There were 10 times the number of mast cells in the angiolipoma, compared to regular lipomas.

A few years ago, when I was 18 years old (before getting CU), I noticed this strange lump on my lower back. It wasn’t very noticeable, but I could feel it with my hand. It felt a little tender. I was concerned about it, so I decided I better go to the doctor and check it out. The doctor looked at it, and said it could be suspicious. I opted to go ahead and have it surgically removed and biopsied to see if it was a cancerous or non-cancerous tumor.  They completely removed it, and it turned out to be something called an angiolipoma.

What is An AngioLipoma or Lipoma?

A lipoma is simply a non-cancerous fatty tissue growth that has built up under the skin (a tumor). An angiolipoma is basically the same thing as a lipoma, with one main difference: Angiolipomas have blood vessels in them. So Angiolipomas (what I had), are simply these small lumps that develop in tissues or under the skin. They are firm and have a cyst-like appearance. Sometimes they are sensitive or tender. In some cases, they may not hurt at all.

They aren’t usually harmful in any way. Just like moles are usually harmful. They are just under your skin. They only thing is that sometimes that can be “ugly” and people may want them removed for cosmetic reasons. Sometimes, they may grow in tissues or parts of the body that make them necessary to remove (such as the eye or organ).

Anyways, back to my story for a minute. I had the angiolipoma removed from my back. It was sorta freaky, but I was glad to have it gone. It never has re-appeared or anything. However, I now have discovered SEVERAL of these things on different parts of my body. Some are easy to see, others took a very careful examination to find. I have several on my arms (usualy small, but a couple of “pea” sized ones). I also have some on my stomach, side, back, and a couple on my thighs as well. Most of them are not noticeable at all. My wife has never seen them until I pointed them out. I didn’t see many myself, and only felt them after careful examination.

Another bit of good news is that during my research, I stumbled upon a medical article and a guy was 80 and had several of these on his body and had them for years. The good news is the number—80. That means “hopefully” it isn’t going to shorten my life span or anything. Most people say they are completely harmless anyways, and there is no known connection with these and any other disease.

Picture/Image of 2 Angiolipomas on My Right Arm:

After doing some research, I found that it is quite normal for people that have these to have several (multiple lipomas). I read some forums where some people wrote that they have had 40 or 50 cut out. Some have hundreds on their body. Luckily, I think I have about 10-20, but some are so small that they are not even noticeable at all. Others are only barely noticeable. They usually don’t grow to a large size, but you can always have them removed if they get too large.

One thing I found interesting is that these are “autosomal dominant.” If a disease is autosomal dominant, it means you only need to get the abnormal gene from one parent in order for you to inherit the disease. One of the parents may often have the disease.

I later found out that my mom has a couple of these, and apparently my dad also had several removed from his back in his younger years. So apparently I got scammed by my parents in the “lump” department!  Thanks a lot mom and dad!

Could Angiolipomas be Related to Cholinergic Urticaria?

Of course, my mom or dad has never had cholinergic urticaria, and they have these lipomas. So obviously everyone that has these things don’t have cholinergic urticaria. But it makes me wonder, if they could be related to cholinergic urticaria in some way. Here are 2 ways it could be related:

1. A bad “gene” in the skin or tissues is also a gene that controls CU. This is one way it could be related.
2. Or a person with a lipoma, angiolipoma, or other non-cancerous tumor may develop a random tumor on a gland, organ, or other tissues that could lead to cholinergic urticaria in some way (i.e. it could over-produce histamine or something).

I seem to have gotten a “double dose” of whatever gene causes this condition since both my mom and dad had it.

One thing that really grabbed my attention was a post I read on one forum. A person said they had an MRI done (kind of like an x-ray), and this is what they said:

 ”Doctor said I have “several” angiolipomas on my liver and kidney! OMG, I’m worried.”

I found this interesting because I always thought of angiolipomas as being on the skin or just under the skin. But apparently they can even occur in deep tissues or organs such as a kidney. So it is always possible that I have one of these things internally on some organ or gland, and that is messing up my system. So perhaps it is at least possible that there is a tumor or gland issue causing this? At least in some cases? Maybe it is different for everyone? Maybe it has nothing to do with it?

Could Angio-Lipomas Be Related to Gluten Intolerance or Allergies?

I have no idea if I even have a gluten intolerance or not. I am on a gluten and milk-free diet at the moment to see if it helps the hives at all. So far I am not seeing positive results for the hives (although my skin rash has completely gone away). But I have only been on it for not even 1 month so far. I will need to do it for a few months to know for sure.

But I was “googling” angiolipomas and it brought up a forum up with people talking about lipomas and gluten. Perhaps there could be an association with food allergies? Or maybe it is nothing more than a mere coincidence, and gluten has nothing to do with it? Who knows?

Conclusion: Angiolipomas Are Harmless (Usually)-But Could They Be Related to Hives?

Maybe in a few years I will get some of these I have noticed cut out of me. I have to wait until I get some kind of health insurance first.  Sometimes I think maybe it would be helpful to have just a full body MRI and PET scan to see if there are any unusual tumors, or increased glands in my body that could be related to this cholinergic urticaria condition.

It sure would be nice to have a surgery and be done with this torture called cholinergic urticaria hives once and for all!

Gluten Free/Milk Free Diet Update:

The diet is going great. I am basically eating out of a crockpot about 4 days a week now. It is easy to cook with, and tastes great. My rashes are all gone, my skin looks better, but the hives are still there so far. I have had a few itchy episodes these past few days.

It may or may not be related to gluten or milk, but it is definitely worth trying for a few more months to make 100% sure.