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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Watching the Incredible Hulk with Netflix

Today, my wife & I took the day off. We started the day watching a movie we rented from Netflix– The Incredible Hulk staring Edward Norton & Liv Tyler (2008). By the way, if no one has tried Netflix.com yet, it is AWESOME! It blows blockbuster or any other movie rental place to bits. We always watch movies online, and also rent them all the time and all it costs is a mere $9 & change each month and we get several DVD mail rentals & unlimited online movies.

Anyways, I liked the Incredible Hulk movie a lot. When I was younger I loved the one on television starring Lou Ferrigno (who makes a cameo in the new movie by the way). I have always been fascinated with heroes & people of great strength & big muscles.

One thing I found very early on in the movie is how much I relate to the character (David Banner). He is mutated by Gamma radiation & when he gets angry he turns into a big green monster.

During the whole movie he struggles to avoid having an “attack” of anger & transforming. The movie begins with him practicing “breathing techniques” to try & prevent his anger. He even wears a special watch that monitors his heart-rate throughout the most of the movie, so that when he starts to get angry, nervous, or excited he can monitor his heart rate & calm down before he gets an “attack.”

That just reminded me so much of myself & everyone else who has Cholinergic Urticaria. We have to constantly watch our body temperature, and if we get to hot, we transform into big itchy monsters. It really bothers him having this condition too, and he is constantly trying experiments to try & rid himself of it (which he constantly seems to fail in his experiments)…sounds familiar doesn’t it??

Then, in one scene he starts to get “intimate” with his female friend, and he has to slow down because his heart starts to beat too fast to prevent an “attack”. Again, I could somewhat relate there too. He is also running on several occasions, and has to stop & calm down to prevent an attack.

When the movie ends, the Hulk has to flee, and it shows the character (David Banner played by Ed Norton), sitting in a room and instead of trying to “breath” or “prevent” his attacks, he is working now on “completely controlling it & forcing attacks at will.” I thought that was pretty cool. Instead of only trying to prevent cholinergic urticaria, I think it is also important to try to condition our minds to effectively get through an outbreak. It is hard, but I think I myself could manage them better mentally if I worked on it.

This is very hard to do, though. When I start to get an attack I notice that I find it very hard to concentrate on anything other than the pain & itching. I can illustrate this point, in the fact that if I am in the middle of a conversation & have an attack, I cannot focus on what the person is saying, and I start to get really annoyed by the pain.

If someone asks me a question, I am usually a little snappy, and I am like “What did you say?” I can’t help it, and it is because I am getting stabbed by needles all over my body and I lose the ability to focus on what they are saying & it is hard to reply verbally & coherently as all I want to do is scratch myself to death. My wife always understands, and I try to apologize afterwards when I do it to her. But I would like to better manage attacks and somehow take better control of my body & mind.

Anyways, if you haven’t seen the 2008 Incredible Hulk movie, I would recommend it. It was a very good movie (I rated it 4 stars out of 5). When you watch it, think of it in terms of cholinergic urticaria & you will be able to easily relate with the character.

Update On Sweating & Getting Really Hot

Okay, after the movie we had some errands to run. Today it was like 85 degrees & beautiful outside, so I thought I would try & force some sweat in the car by avoiding the air conditioner. Be careful if you try something similar from risk of heat stroke.

Anyways, I got very hot, and had an attack on the way to Wal-mart. I tried to suffer through the pins & needles, and when we arrived I sat there, but still no sweat. My wife was thirsty (and she tends to get impatient when she needs to do something), so we went ahead & went inside Walmart.

To my surprise, it wasn’t’ much cooler in there! They must be trying to cut back on their cooling budget or something (that darn recession!). I actually got prickly a couple of times while shopping and tried to cool down as much as possible. I finally checked out, and felt the sense of relief I always feel after leaving a store (since I know the potential to have a public attack is over). Anyways, we got out, and we got back into the car and it was mega hot.

So on the way home, I rolled up the windows & suffered in the heat (and my wife suffered right with me…bless her little heart). I battled the pins & needles as much as I could, as they randomly popped up in different areas almost the entire ride home (my forehead, scalp, neck, chest, etc.).

Then, towards the end I could feel my palms, back, and arms were slightly damp. My wife felt my arms and could feel a light coat of perspiration. So I did sweat some. I definitely wish I could have sweat more, but I’ll take anything I can get at this point.

I really think that over the course of the summer I will be able to sweat quite a bit. I hope & pray I can go right into sweating eventually and forget about cholinergic urticaria (if even it is just for the summer…). I know the mugginess of summer usually allows me to go straight into sweating, and I look forward to those days. I also enjoy the nice cold air condition most stores have on (except for cheapskate Walmart today!). I can usually shop in confidence & comfort when an A/C is blasting in a store.

Update on Probiotics & Vinegar Treatment

Well the probiotics seem to be doing well. I have had a pretty regular digestion, and the only thing I can say is I have had a little gas, but nothing abnormal, and no cramps or bloating. So far it has done nothing for the hives, but I have only been taking them for a few days (I have a 30 day supply). So I will continue to update everyone on that.

As far as the vinegar goes, I plan on stopping that soon. It shows no signs of working, and in fact makes my skin very acidic, stinky, and uncomfortable feeling. So I will probably quit any day, but hey, it was worth a shot!

Update on Sun Exposure

I am also excited to be getting more sun exposure soon, and I have gotten some recently. I have been sitting on my front porch on occasions for a while (when my neighbors leave), but it has been much less than I was able to do a few weeks ago.

Okay get this— in my apartment complex I have neighbors who go & just sit outside all day & smoke and talk and sometimes even have company over with them. Of course no other people in the apartment complex do this, only the people beside of me (as my luck would have it…go figure!).

Now I am kind of an “anti-social” or “private” type of person, and I am not necessarily in the mood to say “hello” or strike up a conversation every single time I open my friggin door. But they are home almost all of the time, and it makes it really difficult to go outside without doing so. This always annoys me so badly, and I can’t stand not having privacy & being able to walk outside. It is like every time I walk out the door I either have to say hi or look rude like I am ignoring them (lately I am taking the “looking rude” option).

So my wife and I finally had a routine where we would take a blanket & go to the side of the apartments, and sit & read or talk for a while & get some rays. There is a small patch of grass there, and no windows or people on the side so it is somewhat private.

This was working really well for about 2-3 weeks. Then guess what happens (my great luck again…)?? The guy who owns my apartments has decided to build a big duplex right across from the place we were sitting (about 20 feet away)!! Man that is so frustrating. So now about 10 guys with their shirts off will be outside nearly every day for the rest of the summer. They have already cleared the land, and have the foundation laid & framing has started.

Oh, and I almost forgot…the person on the other side of me is moving out, and they have been there daily with a truck moving stuff out. This is annoying, because yet again someone will be moving in, and I tend to have very bad luck with neighbors! I am afraid to wonder who or what may move in now.

So now, if I want to go outside my options are this:

1. Go sit on my tiny area in front of my door (it isn’t even worth calling a “porch”) and risk having to talk to people the whole time I am out there on both sides of my door (which is terribly annoying for a private/shy guy who enjoys solitude to reflect on life).
2. Go to the side, where the construction workers can watch me the whole time, and I may possibly have to talk to the apartment owners (annoying again). I also get to hear the lovely sound of hammers & saws all day.
3. Or I can go drive 15 minutes to the nearest park, which isn’t the most convenient option either.

It is so annoying because not only do I enjoy my solitude & privacy, but it is pretty frustrating having attacks in front of people, which is almost certain to happen on these hot days. So I don’t want them to ask me something & then …poof hives. Plus, for some unknown reason, it is like I have a sign on my back that says, “Talk to me please.” Every where I go, people randomly single me out to ask a question out of a crowd. No joke!

Even while shopping recently, my wife was trying on a graduation dress in the dressing room, and some older lady comes up to me to ask if the cleats she had in her buggy were for golf or baseball (she said she was buying them for her son lol). I was like, “they are for baseball.” It completely caught me off guard and I was already a little itchy anyways and you know how you can get a sudden spike of adrenaline when put on the spot like that?? And sometimes when people ask me something I get shy & more itchy from that nervousness or adrenaline spike. So I swear it is like I have a sign on my back that says, “Reward: Strike up a conversation with me & win 1 million dollars.”

Anyways, back to the sun situation. I still plan on getting as much sun as possible, but it is not going to be as easy as I thought it may be. Luckily, I will at least be able to get some sun soon at my mom’s house, and plus my wife & I will go to Dollywood sometime within the next month (I hope I sweat that day for sure). The Dollywood trip should offer about 8 hours of direct sunlight exposure & heat. Pray that I sweat that day & I am not itchy the whole time.

Also, hopefully I will get a house before the end of summer and move out of this crappy place (please God…). Then I have high hopes of finally defeating cholinergic urticaria for good. My battle plan is simple: Remove all allergens, eat healthier, filter the water, and sweat daily.

That’s it for now! Just wanted to provide an update.

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Posted under general information, hives talk, managing hives