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My Experience With Exercise-Induced Urticaria
Posted: 24th April 2024
Introduction
Over the last couple of years, I have developed a strange and seemingly very rare medical problem. After googling my symptoms and finding out what it looked like I was suffering from - I also found that there was very little study and information regarding the issue. The only background I could find was an example of someone who seemingly had the reaction after exercising, but it was caused by a hidden wheat allergy, that the body didn't react to until they exercised. Since I couldn't find anything else about this thing, I decided to stop consuming wheat myself. I went off wheat and dairy for 2 weeks to see if my symptoms would change - they did not. (though I did notice something else odd but that's entirely unrelated). My problem persists.
Because my issue seemed to be so rare, I considered trying to contact local medical universities and asking if anybody would like to study me. But, unfortunately, I'm too dumb to find out how to work out which universities would be appropriate. And I don't have the social skills to message anybody from said universities and to not sound like a total nut-job at the same time. So instead I thought I'd stick it in a blog post.
If anybody DOES want to fuck around and work out what the heck is going on, or just find out some data about what causes this issue or collect my DNA to compare with others who have had this? Then like, by all means - get in contact. I'd like the story of my experience to actually help other people suffering. As well as that I'd really like to find out how I can sort my body out.
Because my issue seemed to be so rare, I considered trying to contact local medical universities and asking if anybody would like to study me. But, unfortunately, I'm too dumb to find out how to work out which universities would be appropriate. And I don't have the social skills to message anybody from said universities and to not sound like a total nut-job at the same time. So instead I thought I'd stick it in a blog post.
If anybody DOES want to fuck around and work out what the heck is going on, or just find out some data about what causes this issue or collect my DNA to compare with others who have had this? Then like, by all means - get in contact. I'd like the story of my experience to actually help other people suffering. As well as that I'd really like to find out how I can sort my body out.
Part 1: What is "Exercise-Induced Urticaria"
Although you can Google it, I am happy to oblige.
The first part of this answer is; urticaria is an allergic response that affects the skin. Causing rashes, hives and itching in the sufferer. Most people with allergies are allergic to common pollutants such as pollen and animal dander, or to food. Any of these allergens can cause someone to suffer with a few allergic responses such as urticaria (skin response), IBS (gastric response), asphyxiation (when the airways close up and the tongue swells [EEEK]) and sinus responses such as itchy mouth, sore throat, running nose, watering eyes etc. But if your urticaria is "exercise-induced"... how can that be an allergen? Surely that's not a thing? Good questions! Well, it's real, and I've suffered from it for many years! Here's a photo of a bad day! This was from walking for 20 minutes :) |
My right arm covered in fairly aggressive hives after a 20 minute walk - this was on a day where I had my fexofenadine and citirizine. It was not itchy this day, but clearly very prevelant.
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Part 2: My History
I'm no stranger to allergies. When I was a youngster, I used to get swollen saliva glands every summer. Then that stopped and I got hayfever that was steadily worse and worse every year. My family also have allergies so we knew what to do, I got given anti-histamines and relied on citirizine off the shelf for a while. (Fun bonus fact: the other widely available anthihistamine is called loratadine - and I'm allergic to it LOL).
Over my life I steadily became more and more allergic to things, to cats, to rodents, and even now to dogs (sadge :( ). My plant allergy got so strong I tested as being 100x more allergic to grass pollen than I needed to be to qualify for being allergic to it. My allergy to rabbits is the worst in that that's the only one so far that triggers asphyxiation in me within minutes (it happens with rats but only after much longer exposure).
For a long time, I've been taking fexofenadine every day, all year round. With a top up of citirizine if I know I'm going to see an animal. I'm also allowed to take 2x my dose of fexo and 3x the standard dose of citirizine if I need to... which does happen. But it doesn't actually stop a lot of the symptoms. For instance, it doesn't stop my urticaria, it only stops it from being so itchy (which is fine by me. Like, it's ugly and all but the real pain is the itching).
Over my life I steadily became more and more allergic to things, to cats, to rodents, and even now to dogs (sadge :( ). My plant allergy got so strong I tested as being 100x more allergic to grass pollen than I needed to be to qualify for being allergic to it. My allergy to rabbits is the worst in that that's the only one so far that triggers asphyxiation in me within minutes (it happens with rats but only after much longer exposure).
For a long time, I've been taking fexofenadine every day, all year round. With a top up of citirizine if I know I'm going to see an animal. I'm also allowed to take 2x my dose of fexo and 3x the standard dose of citirizine if I need to... which does happen. But it doesn't actually stop a lot of the symptoms. For instance, it doesn't stop my urticaria, it only stops it from being so itchy (which is fine by me. Like, it's ugly and all but the real pain is the itching).
Part 3: Exercise and Itchiness
I've got like, whole body problems. My body is very shite and I'm unfit as heck and I wanted to do something about it. I knew exercise could help my physical pain, but I was so anxious about doing anything about it and worrying about hurting myself more. So I referred myself to a physiotherapist who was like "yeah your body sucks" (this was lovely to hear as it means I wasn't just being a twat). I got signed up to a 6 or 8 week course which was like.... so I went with some physiotherapists and some other patients and we just went to a gym for 1.5 hours every week. They taught us confidence and some exercises to do and it was super helpful. Honestly, great.
On one of the days, I was working with some of the team. We were using dumbells, it wasn't super tough. I'd been seeing these people weekly for a little while - so I felt like we could be friendly and I just said to them "don't you hate it when you've been exercising and you just get relentlessly itchy? hahaha" and they were like "umm... no, that's not a thing that happens. You should see a doctor". I was like yeah cool cool...???
That's the first time I realised that exercise didn't make other people incessantly itchy. I genuinely thought this is just like... what it feels like to exercise?? I fully believed that athletes were just Full of Willpower. That they just had the willpower to fight through the painful itching in order to get to where they needed to be - HOW FOOLISH I was. Wow.
I did NOT go to a doctor at this time.
On one of the days, I was working with some of the team. We were using dumbells, it wasn't super tough. I'd been seeing these people weekly for a little while - so I felt like we could be friendly and I just said to them "don't you hate it when you've been exercising and you just get relentlessly itchy? hahaha" and they were like "umm... no, that's not a thing that happens. You should see a doctor". I was like yeah cool cool...???
That's the first time I realised that exercise didn't make other people incessantly itchy. I genuinely thought this is just like... what it feels like to exercise?? I fully believed that athletes were just Full of Willpower. That they just had the willpower to fight through the painful itching in order to get to where they needed to be - HOW FOOLISH I was. Wow.
I did NOT go to a doctor at this time.
Part 4: Screcendo
I live in a piece of shit mouldy house that the landlord doesn't want to sort out. It was, like, an average rent. Prices went up a lot in the last couple of years, but our rent didn't go up as fast. So currently we're paying like 2/3 of what a house this size is usually worth. So the mould feels like... a reasonable suffer on behalf of like, not being homeless (we cannot afford to move elsewhere).
I have blamed all my allergies getting worse over the past 4 years on this. We also moved here in 2020 during the COVID-19 pandemic. So like, that's also reasonable explanation as to why I'd be getting more allergic (COVID fucks the immune system - I've had as many jabs as they offered me and I got it twice, though it didn't feel too bad at the time).
Eventually I got to the point that my urticaria was not only triggered by exercise, but also, just... spontaneously? It's very likely I was reacting to mould spores. I would wake up in the middle of the night itching like my body was on fire. I'd take my anti-histamine and go back to sleep eventually. But obviously this isn't ideal.
So I did go to the doctor at this point. She said cool no worries we'll test you for all the allergies and see where we're at. I'd been tested for loads of allergies before and I basically knew where I stood. But I've got the funky NHS app nowadays so I get the joy of actually seeing the results myself.
A week after my blood test (yeah they do it by a blood test? idk), I got 2 texts saying "your tests are normal! don't fucking contact us again". I decided to wait (read: suffered with my mental health) for 2 weeks and then went into the GP surgery to ask if I can book a follow up with the doctor I had spoken to before. They staff there told me I was due a follow up (despite the texts) but it wasn't necessarily going to be with the same doctor. I was like :( and they put a note that I'd rather talk to Dr Matcha.
I have blamed all my allergies getting worse over the past 4 years on this. We also moved here in 2020 during the COVID-19 pandemic. So like, that's also reasonable explanation as to why I'd be getting more allergic (COVID fucks the immune system - I've had as many jabs as they offered me and I got it twice, though it didn't feel too bad at the time).
Eventually I got to the point that my urticaria was not only triggered by exercise, but also, just... spontaneously? It's very likely I was reacting to mould spores. I would wake up in the middle of the night itching like my body was on fire. I'd take my anti-histamine and go back to sleep eventually. But obviously this isn't ideal.
So I did go to the doctor at this point. She said cool no worries we'll test you for all the allergies and see where we're at. I'd been tested for loads of allergies before and I basically knew where I stood. But I've got the funky NHS app nowadays so I get the joy of actually seeing the results myself.
A week after my blood test (yeah they do it by a blood test? idk), I got 2 texts saying "your tests are normal! don't fucking contact us again". I decided to wait (read: suffered with my mental health) for 2 weeks and then went into the GP surgery to ask if I can book a follow up with the doctor I had spoken to before. They staff there told me I was due a follow up (despite the texts) but it wasn't necessarily going to be with the same doctor. I was like :( and they put a note that I'd rather talk to Dr Matcha.
Part 5: The Answer
So anyways I got an appointment with her and she went over my results for me. She aggreed to refer me to an allergist/immunologist which is good. My results showed I was basically allergic to everything they tested for, including;
Cats, dogs, mice, rats, rabbits, guinea pigs, rodents (general), flower pollen, grass pollen, tree pollen, dust mites. I was borderline allergic to hamsters (nice that there a single animal I could potentially have in my home lmao). I also tested "abnormal" for my response to nuts, but then it said "negative"? What's abnormal? Need to check. They didn't test me for any other food allergy (I doubt they would because fuck me I guess).
The other part of the blood test was testing the part in my blood that reacts to allergens? Idfk tbh. It came back off the charts. Basically, my body is just so keen on getting rid of allergens, it's in overdrive. It seems possible that my allergies and symptoms have all gotten worse and worse over the years as the level of whatever this is has gone higher and higher.
Then she said "it looks like we didn't test you for vitamin D"
I was like "vitamin D? why vitamin D?"
She said "vitamin D has a part to play in our immune systems, it could be if your vitamin D level is very low that it would affect this thing in your blood".
"Oh".
So she told me to take high strength vitamin D tablets. The ones I already have in my house but haven't taken for a few years. I'm ridiculous. On the bottle it says "Vitamin D helps with the normal functioning of the immune system". Cool.
You see, I'm not a hypochondriac, but I do have some level of health anxiety. If I see a doctor on TV tell me that here in the UK, the quality of the sun is so poor, that many brits never get enough vitamin D, even in the summer - then I'm going to listen to that doctor and take Vitamin D every day. Which is what happened. Of course I'm at risk for low vitamin D! I have autism and I fucking hate the sun! I also started an office job back in 2018, where I do not see any sunlight at all while I'm there. Which sort of aligns with when things really took a turn and started to get very bad. (I'm inclined to believe her and hope that getting the D is the solution).
The reason I stopped taking vitamin D every day was peer pressure. You can't mention taking vitamins without somebody telling you they're bullshit, that you're being scammed, that you simply piss out most of the vitamins. I let it get to me and it stopped being important and I stopped doing it.
Now, don't get me wrong, I do believe there is still something weird going on in my body, and the itchiness from exercise has been with me as long as I can remember, before and after and during regular vitamin D tablets. So I dunno. Hopefully the immunologist can help.
I'm going on the same walk as I did the day that photo was taken. It's been about 10 days since I got back on to the D. So I'll let you all know how it goes... Follow for more.
Cats, dogs, mice, rats, rabbits, guinea pigs, rodents (general), flower pollen, grass pollen, tree pollen, dust mites. I was borderline allergic to hamsters (nice that there a single animal I could potentially have in my home lmao). I also tested "abnormal" for my response to nuts, but then it said "negative"? What's abnormal? Need to check. They didn't test me for any other food allergy (I doubt they would because fuck me I guess).
The other part of the blood test was testing the part in my blood that reacts to allergens? Idfk tbh. It came back off the charts. Basically, my body is just so keen on getting rid of allergens, it's in overdrive. It seems possible that my allergies and symptoms have all gotten worse and worse over the years as the level of whatever this is has gone higher and higher.
Then she said "it looks like we didn't test you for vitamin D"
I was like "vitamin D? why vitamin D?"
She said "vitamin D has a part to play in our immune systems, it could be if your vitamin D level is very low that it would affect this thing in your blood".
"Oh".
So she told me to take high strength vitamin D tablets. The ones I already have in my house but haven't taken for a few years. I'm ridiculous. On the bottle it says "Vitamin D helps with the normal functioning of the immune system". Cool.
You see, I'm not a hypochondriac, but I do have some level of health anxiety. If I see a doctor on TV tell me that here in the UK, the quality of the sun is so poor, that many brits never get enough vitamin D, even in the summer - then I'm going to listen to that doctor and take Vitamin D every day. Which is what happened. Of course I'm at risk for low vitamin D! I have autism and I fucking hate the sun! I also started an office job back in 2018, where I do not see any sunlight at all while I'm there. Which sort of aligns with when things really took a turn and started to get very bad. (I'm inclined to believe her and hope that getting the D is the solution).
The reason I stopped taking vitamin D every day was peer pressure. You can't mention taking vitamins without somebody telling you they're bullshit, that you're being scammed, that you simply piss out most of the vitamins. I let it get to me and it stopped being important and I stopped doing it.
Now, don't get me wrong, I do believe there is still something weird going on in my body, and the itchiness from exercise has been with me as long as I can remember, before and after and during regular vitamin D tablets. So I dunno. Hopefully the immunologist can help.
I'm going on the same walk as I did the day that photo was taken. It's been about 10 days since I got back on to the D. So I'll let you all know how it goes... Follow for more.
Part 6 - Update
LMAO a joke. So I've been taking the vitamin D every day since I spoke to the doctor and it has only got WORSE. ANNNNDD it turned out I was referred to a not-quite-local hospital, which felt like a mistake - turns out it isn't. But also, the wait for that clinic is FIFTY WEEKS FROM REFERRAL. WHAT THE FUCK. Bin the tories bin them now.
My allergies are getting worse. I'm reacting when my body becomes even slightly warm. This includes being outside in the humid heat of England. But I don't even feel hot when I'm walking I guess it's just an internal temperature thing. Any way it is impossible to cope :/ eep.
My allergies are getting worse. I'm reacting when my body becomes even slightly warm. This includes being outside in the humid heat of England. But I don't even feel hot when I'm walking I guess it's just an internal temperature thing. Any way it is impossible to cope :/ eep.
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This page last updated April 2024 - You'll find a more direct update of my work by following me on social media
