How Has Cholinergic Urticaria Improved or Affected Your Life?
Post by: adityadennis on August 09, 2009, 08:58:47 AM
Like I had mentioned in another post, I got Cholinergic Urticaria very recently. I’m trying to get a gauge on how much it will affect my day-to-day doings. So I ask the members of this board: is it a big disruption in your life, or is it just an annoyance you put up with?
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Title: Re: How much has Cholinergic Urticaria affected your life?
Post by: HivesGuy on August 10, 2009, 03:24:57 PM
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Great question.
How much it will affect your daily life depends on many things. For example: do you have a very bad case of Cholinergic Urticaria, or does it just bother you every once in a while?
Some people have very mild cases, and they only get a few attacks which aren’t bad. Others (like me), get very bad attacks, and it is very frustrating.
I do have a bad enough case where it significantly has affected my life in many ways. But don’t get too discouraged. Like I said, others don’t have it so bad.
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Title: Re: How much has Cholinergic Urticaria affected your life?
Post by: mollythompson28 on September 23, 2009, 08:49:46 PM
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For me, it effects me every day without fail. Some days are worse than others. I have had Cholinergic Urticaria all my life (22yrs) and it has not ceased to be frustrating to me, but it is manageable and do my best with it. It really varies between annoyance and disruption of my life. Just take it as it comes!
You are not alone, if and when you are really feeling frustrated I suggest talking with someone you know or could get to know who is dealing with something that affects their daily life, as in a disability or chronic condition. I realize that it is not really realistic to think that you would find someone dealing with this particular issue to talk it out with, but the perspective of someone else with daily challenge (no matter how different) helped me a lot.
molly
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Title: Re: How much has Cholinergic Urticaria affected your life?
Post by: adityadennis on October 05, 2009, 11:04:09 AM
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Yep Molly, I have been thinking along the same lines…Cholinergic Urticaria is bad, but it’s still much better than some of the other chronic things out there.
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Title: Re: How much has Cholinergic Urticaria affected your life?
Post by: jamesmacin on November 01, 2009, 12:13:44 AM
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Quote from: mollythompson28 on September 23, 2009, 08:49:46 PM
It effects me every day without fail. I have had Cholinergic Urticaria all my life 22 yrs.
Dear Molly,
You are very brave and patient. Hats off to you. 22 years, oh my God. I have had it for only 4+ years and has made me mad. A pessimist and full of negativity.
You are the best person to talk to when it comes to Cholinergic Urticaria on this forum and I am sure that you are more than willing to help. My case started with an itch that would last 24/7 and would get worse in sun light so I had to stop going out in the sun. During the day I am mentally paralysed. Rashes are not much of a problem to me. I need to know how you control this never ending itch.
Doctors told me that it was due to aneamia, a very low level of haemoglobin. I had my level at 6.6, much less than the minimum required level of 13-14 in males, so initially I agreed, but then even after getting it to a level of 14, the itch would never go away and hives will come from no where. This made me realise that there was more to this itch then mere allergies or haemoglobin lelves. Please help me, thanks
James
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Title: Please help me with this itch
Post by: jamesmacin on November 01, 2009, 12:17:18 AM
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Hi,
I have this itch on my body all day. It is there and as frequent as breathing. No cream works no pills work. Mad as hell I am. Can’t socialize at all. Please tell me as to how to get rid of this itch. Thanks
James
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Title: How Has Cholinergic Urticaria Improved or Affected Your Life?
Post by: HivesGuy on January 12, 2010, 08:05:45 AM
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Hey everyone,
Okay, I can probably think of 100 ways that cholinergic urticaria has made my life more difficult/frustrating. But in keeping with my hopes to start being more positive living with this condition, I thought I would turn the question around and ask you, “What are some reasons or ways cholinergic urticaria has IMPROVED your life?
That may seem bizarre to some of you, and may take some thinking, but you may be surprised to learn that Cholinergic Urticaria may have helped you in some areas, and even (gasp) has been positive in some ways. Here is how I think cholinergic urticaria has helped me improve my life:
1. I started this blog/forum, and I ONLY have cholinergic urticaria to thank for that. This has helped me to really connect with others, and let others know they aren’t alone. In addition, I feel like I have learned so much more about Cholinergic Urticaria, and have really talked to some interesting people on the forum.
2. Cholinergic urticaria has helped me to realize the value of health and life. Life is sacred and health is fleeting. You should enjoy both while you have it. No one will enjoy health forever, and cholinergic urticaria reminds me to be thankful of every day of health I do still have. It reminds me I am mortal, and will face a death one day, therefore, I value life, and work a little harder to stay healthy.
3. Hives have led me to really think about life in a deep and spiritual way. While I was initially distant and against organized religion when getting hives again, I have come to have a very deep and moving experience with it. C.S. Lewis once said this: “God whispers to us in our pleasures, speaks to us in our conscience, but shouts in our pains: It is His megaphone to rouse a deaf world.”
Living with this intense and frustrating health experience did allow me to focus on things which I never really explored before, and much deeper than I ever have before: Spirituality and faith. I would never trade what I have learned and experienced in that area, and I have to thank hives for at least thrusting me there faster, and forcing me to contemplate that area in a deeper way. I now know what I truly believe, and why I believe it.
4. Hives have allowed me to regain a new focus on life by causing me to be much more contemplative and reclusive. Since getting hives, I stopped doing things I did do in the past: Being social, working at a “real” job, and more. This has allowed me to stop and contemplate life in a very solitary and peaceful way, while reflecting on the future, and evaluating who I really am without being distracted or swayed by society or friends. This has helped me get a better focus on “what I want to do” in many areas of my life, and have helped me form my own unique identity.
5. Cholinergic urticaria makes for a wonderful excuse if you ever DON’T want to do something! If anyone invites you to an event or to something you don’t want to do, you can always use the old, “I can’t do it, my hives really bother me in those situations…” So having hives can be a nice crutch to get you out of doing something sometimes =). Hey, why not take advantage??
Well, there are some of my reasons for being thankful to my hives, what are some of yours? I am interested to hear! Let me know by replying below.
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Title: Re: How Has Cholinergic Urticaria Improved Your Life?
Post by: dice on January 14, 2010, 01:01:22 PM
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I find that sweating (through exercise) prevents any hives attacks. So I guess you could say that it’s a pretty big incentive to work out regularly (otherwise go though a day of agonizing pain), and is therefore a benefit/improvement on my life. Can’t think of anything else besides that really…
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Title: Re: How much has Cholinergic Urticaria affected your life?
Post by: Snuff on March 27, 2010, 08:08:27 AM
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It affects my life alot. i have rarely left my house at all. my aunt/i call her mom was in the hospital on her death bed and i went to the hospital 2 times to see her. first time a fan helped 2nd time diff hospital and there wasnt a fan.. i was there for like 2 hours and the whole time i was constantly being stabed by invisible needles. but after the big outbreak it was mainly isolated to my back and chest and random few second full body outbreaks then back to only being on my back.. so i dont go out much but pretty soon im going to have to take a 5 hour drive in the sun and another 2 hour wait in the heat with crowded ppl then another 5 hour drive back.. im not looking foward to it.. im wondering if alchol will help me with that.. but this summer im going to try to start excercising in the sun as soon as it gets warmer
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Title: Re: How much has Cholinergic Urticaria affected your life?
Post by: velocicow on April 04, 2010, 01:09:28 AM
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Hey guys this is my first post so I guess I’ll tell my story.
I developed heat hives about 6 months ago I noticed that whenever I was out doing activities or get nervous my skin would itch. I thought it was just dry skin at first ( i never got the hive bumps). At thanksgiving we had alot of ppl in our house and the heat was turned up for my grandparents. I was sitting at thanksgiving dinner and could feel the itchiness coming on, I was not prepared for anything on this scale though. No one understands how ridiculous it is except for fellow hive sufferers. Anyways i was trying to keep a straight face, but the itching was somewhere between “my skin is on fire” and “i just want to rip my own skin off”. I excused myself from dinner and quickly ran and did the only thing I felt could relieve it, I jumed into a cold shower.
This is when i first realized the connection between heat and this insanely itchpy thng that ive been unfortunate to recieve. As it started to get colder the only time I would have to deal with it is if i had been walking around for a long time. Soon i noticed that whevnever i had a bad reaction i would get a few bumps on my arms and chest. Then it was everytime I had any reaction. I remeber playing air hockey at a local arcade for literally only about 2 minutes before I felt the most insane feeling on my skin and my body was covered with little red bumps, yet there was no relief.
There was nowhere i could go that would be able to relieve the symptoms. No cold shower to go in, no cool place for my body to cool down in I was trapped in a public mall with people all around me who could surely see that something was wrong with me. Bumps all around my body was horrible luckily its only on the underside of my arm and typically other places that are covered by clothing. I later saw a dermatologist, who either didn’t really believe me or just didn’t think much of it. She prescribed me some allegra which surprise surprise did nothing. In fact it seemed to make things worse!
I went to see her again a few months ater and triggered a heat hives reaction for her. She believed me then and prescribed allegra in morning, and 2 pills of zantac and then zyrtec at night. Thats 4 pills a day anwhich has definitly lessened the atttacks but I still get them pretty bad just wlaking to classes every day. I never had to deal with this during spring or summer. HOW BAD WILL IT BE? I AM REALLY DREADING THE WARM UPCOMING MONTHS!
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Title: Re: How much has Cholinergic Urticaria affected your life?
Post by: HivesGuy on April 06, 2010, 04:21:19 AM
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Hey velocicow,
Excellent post & welcome to the forum!
I know EXACTLY what you are talking about. When I have an attack, I do my best to keep a straight face and act normal. But I am SCREAMING on the inside from the pain and uncomfortable feeling.
Antihistamines do seem to help us some, but definitely don’t remove the symptoms 100% (in most people).
I posted on your other thread about the hot weather. It can be a blessing or a curse, and it really depends on how often you get out in it. I was out for 6 hours yesterday doing yard work, and I was soaked from the sweat (which felt amazing). You just have to use common sense and avoid sunburn, skin cancer risks, heat exhaustion, and so forth. Drink plenty of water. I wear a large straw hat if I am out in direct sun for more than an hour or so. I also put on sunscreen after about 1 hour, but I let myself get some vitamin d first.
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Title: Re: How Has Cholinergic Urticaria Improved Your Life?
Post by: envy on April 08, 2010, 12:30:59 PM
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I do appreciate ‘normal’ days more.
Everyone just lives there normal lives, and I think, wow this day was great.
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Title: Re: How Has Cholinergic Urticaria Improved Your Life?
Post by: Bauer on April 11, 2010, 11:49:25 PM
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I probably read a lot more than I would have done otherwise. As a consequence I am slightly more familiar with classic stories and more opinionated/informed when it comes to geopolitics, economics and environmental issues. This was also a conscious effort on my part as I didn’t want to the itching to stop one day and suddenly realise that I had wasted the time that I had suffered with the condition and that nothing good had come of it. So you could say that chronic Cholinergic Urticaria symptoms encouraged me to find alternative hobbies/activities.
I possibly have better skin and fewer patches of eczema as there is nothing like intense itching to make you spend a small fortune on skincare products and maintain a regular skincare regime.
Also, once you’ve lived with the type of itching we’ve all experienced, other types of pain and stress seem trivial by comparison.
I feel I’ve gone though the 5 stages of grief:
1. Denial – This is one off incident, this will all stop soon, it’s all in my head, am I crazy, just ignore the pain and eventually it will go away
2. Anger – Frustration, why is this happening to me? why is nothing helping? (doctors, antihistamines etc.)
3. Bargaining – If I promise to do X, stop doing y, just take treatment z, God please make it go away etc…
4. Depression – I’m going to be suffering from this thing for the rest of my life, isolation, can’t do anything, can’t enjoy anything, whats the point?
5. Acceptance –
Reaching the acceptance stage is a mental achievement in itself. For me, this forum was a big help. Firstly, because I realised that there were others like me that had gone through very similar experiences and can relate to the exact type of itching that is so distressing (and that non-sufferers don’t ‘get’). Secondly, because the various tips and advice on this forum helped me to cope with the symptoms.
The funny thing is that there wasn’t really anything that I hadn’t already tried or suspected albeit after 10+ years. It was more that I realised that I wasn’t so crazy in effectively having to be my own doctor and this site in particular ‘validated’ some of the things that I personally found had helped and therefore made it easier to maintain these strategies.
Specifically, that sweating was the key and that exercise (the main trigger) really could help. I find sweating at least once a day significantly improves my symptoms. In the past I tried really intense exercise to force a sweat that would typically take days for me to recover and would improve my condition for maybe a day or so or sometimes make me feel like I had been ‘cured’.
The problem with this was that anything that disrupted my exercise routine like injuries or a lack of motivation would cause the itching to return (sometimes worse) and make it harder to start again. One other thing that I have tried and would recommend is the use of moisture wicking sports vests. These make it much easier to sweat thus reducing the duration and severity of the itching or that initial tingling sensation that precedes the itching. I would combine this with a program of “Full Spectrum Dominance”, which is basically leaving as little as possible to chance and taking as many preventative measures as possible (diet, hydration, vitamins, skincare, clothing, medication etc). If nothing else it made me feel that there was nothing more I could have done on those occasions that I suffered from itching.
I now try and do regular light/moderate exercise. I find dance classes help as the indoor environment makes it easer to sweat while the exercise is not as intense as the sports and activities I have done in the past (before and since I started experiencing symptoms). For those days when I don’t attend dance classes, I will go on a treadmill for 10-20 minutes. I find this provides a ‘base’ from which it is easier to engage in other activities and situations that I would otherwise avoid
I guess this is a long way of saying that I can dance better as a result of Cholinergic Urticaria and that if you can cope with Cholinergic Urticaria, then you really can cope with anything.
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Title: Re: How Has Cholinergic Urticaria Improved Your Life?
Post by: Snuff on April 12, 2010, 12:40:50 AM
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It gave me super powers o.O. no but seriousely it gives me alot of time to think. read my bible i started reading it from front to back so ive learned alot of new words. and it gives me lots of time to talk to my fiancee. Its made me slightly more religious. i imagine hell is like cholinergic urticaria multiplied lasting 24/7 for all eternity. nobody wants that: and it gives me more time to sleep:)
chocofudgecake says
Hi! i found this thread suuuper encouraging, especially Hivesguy’s sharing of how it improved his life, and I can definitely relate with the going through 5 stages of grief.. xD
One thing I’m unsure about is how can regular exercise improve your condition? One of my favorite things to do in the world is dance, but cholinergic urticaria has created a huge roadblock in my pursuit of dance. Every time I dance i get rashes that itch for hours afterward and don’t necessarily disappear even the next day. So i reasoned that the more often and more intensely I dance, the more rashes will accumulate on my skin. I concluded that I will never be able to train in dance daily, in fear that the symptoms will get worse and worse. I take Zyrtec tablets every time I exercise in hopes that they will control the symptoms. But I would really like some guidance on how regular exercise/sweating can help me even though they are the cause of the rashes??
Hivesguy says
Thanks for your comments and questions, chocofudgecake.
Some people use exercise as a method of controlling their hives symptoms, especially if they have cholinergic urticaria.
The reasoning behind it is this: When people with a minor case of cholinergic urticaria have an attack, it temporarily depletes histamine levels. This can sometimes give a period of relief for about 24 hours or so afterward. So what some people do is exercise until they force an attack. Once they get through it, they usually can go through the rest of the day with reduced symptoms (or no symptoms at all).
I’d caution you, however, that this method doesn’t work for everyone, particularly with people who have severe cases of cholinergic urticaria. But for some this methods works for them quite well.
I’m not sure if this method would help you, especially given the fact that you’re visible symptoms seem to persist for up to a day or more. If you do try it, I’d make sure to have a friend and an Epi-Pen nearby, and clear it with a doctor first.
But I do want to say one thing: I feel very strongly that you will dance again. You can beat this in time. I suffered for over a decade on and off, and I finally have a life again. I gave up doing all of the stuff I enjoyed when I suffered with it, but not anymore. The biggest factor that caused my cholinergic urticaria was my diet.
Don’t give up on your passions, and don’t lose your hope. Have faith that you’ll overcome your hives, and determine that you won’t give up on trying to cure it. Your life will get better, and I feel strongly that you will resume your dancing again.
God bless,
Hivseguy