Thursday, February 20, 2014

The Diagnosis: Exercise Induced Anaphylaxis

Probably the worst thing to tell a runner, other than they are injured, is that they are allergic to running.  Sounds a little funny doesn't it?  I mean seriously?  How can someone be allergic to exercise?  

8 years ago Jen would have been pumped to hear those words.  But this Jen isn't so pleased. 




But, am I going to let this diagnosis stop me from doing something I enjoy?  Absolutely not.  This diagnosis will not beat me down.  Instead, I'm going to learn everything I can about it, how to deal with it, how to help others who may be experiencing it.   I'm going to continue to live.  I'm going to continue to run.  I won't quit.  

So, let's back it up a bit.  You may or may not have read my post this past Sunday.  After my post, I was tweeted by Sarah and then Mary.  


Mary's story/symptoms are the exact same - except she had a more severe attack.  I felt incredibly relieved I wasn't alone in this.  Another runner has been living this craziness...and she's still running and kicking butt.  Something I was planning on doing anyway.   We've exchanged some emails and she's been super supportive and answered so many questions I had.  Thank you so much, Mary!  

Let's recap my symptoms:  
- this all started in August
- within a few minutes after completing a run, my eyes lids and below eyes would swell
- sometimes my throat would close up
- I would feel feverish 
- the swelling would last for at least 24 hours  
- happened after running inside/outside - only after running


minor reaction pic here...but you can see the under eye swelling


What I did/have been doing: 
- wash face in cold water/shower/use ice packs/eye wash/allergy drops 
- Benadryl 
- since the swelling lasted for about 24 hours and I couldn't exactly wear sunglasses at school (I am a teacher) - I wore my reading glasses all day long (which I haven't worn for years, but I was desperate.  It was either that or call in sick.)

And then it lead to me taking antihistamines prior to every single run for the past 2 months because I was tired of reactions and fearful of how bad it could get.  This worked for the most part.  Since taking the antihistamines, I've had one reaction and I believe I had that reaction because I took the pills only 20 minutes prior to running which perhaps wasn't enough time for my body to absorb it.  

Doctor's visits.  
- I spoke with my prior primary care physician and he told me to stop running.  
- I stopped seeing him and found another doctor.  
- The new doctor listened to my symptoms and even though she probably thought I was on crack, she didn't tell me I was crazy and instead referred me to see an Asthma and Allergy Specialist.  
- Yesterday I saw the Asthma and Allergy Specialist.  It must have been meant to be.  When I was checking in, I saw this on the wall.  



- Tuesday I was accepted to be part of the Health Tap team.  Obviously not as a doctor, but as a fitness enthusiast.  
- I met with the doctor.  He assessed my asthma and said I was managing it well and then listened to my allergy symptoms.  Without batting an eye, he said I had Exercise Induced Anaphylaxis.   He said it may or may not be related to food and wanted to rule that out and ordered a food allergy test.  Just as the nurse finished marking my arms, she asked if I had any antihistamines in the past day and I said yes.  I had told her earlier when I checked in that I had but she had forgotten.  She said she had to check with the doctor.  Within a few moments she was back and said I would need to come back for the test and would need to be antihistamine free for at least 5 days.  Doable.  Not the end of the world, I suppose.  



- The doctor came back in and explained what the nurse had just said and before I could even ask about running - he suggested I run in the morning before I eat or wait at least 4-6 hours after eating before I run and no antihistamines.   Phew....at least he didn't say don't run!   I can handle this news.  I asked him about an epipen and he said we should hold off for now, but it's definitely a possibility.  

So there you have it folks.  At least I have a diagnosis and a plan of action.  News I can handle.  And you know what?  I feel even more determined.  



26 comments:

  1. Goodness, I have never heard of that before. I'm so pleased that you had people to point you in the right direction and an understanding doctor. The best news being you can keep on running, woooohooooo :-)

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  2. Oh my goodness, I had no idea that you could be allergic to running! At least you're working with a great allergist who's going to help you figure out what's causing the anaphylaxis and isn't just telling you "don't run." Good luck with the rest of your journey! I hope you can find a relatively simple fix!

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  3. Oh wow. I have never heard of such a thing. At least you weren't told NO to running!!

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  4. So sorry you're dealing with this, Jen! I'm glad you found a provider that is willing to listen and help! Hope you kick this in the butt!

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  5. Wow, I hope it's food related and not just the exercise. Either way, sounds like you have a great doctor to figure things out with:)

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  6. I have a very similar situation and when I asked my doctor about it he said he was stumped (he actually said "you've stumped the expert") and prescribed me allergy pills which did NOTHING. I need to see another doctor now. My situation is a little different and has been happening for about a year. When I run (indoors or out- no matter what the season or time of day) my throat fills up with clear phlegm, so much so that I can't just spit it out, but I have to stop to gag it all up. (I have to bring empty water bottles to the gym with me when I run on the treadmill - I know, gross.) It happens mid run a couple of times, after I get home, I'm fine. I think it is some version of exercise induced asthma or something, but I need a doctor to fix this for me! Good luck with your EI anaphylaxis! I hope you get it worked out... and p.s. I can't believe your doctor told you to stop running.... my dumb doctor told me to go on the Adkins diet (not for my "issue" but just in general). I couldn't even believe those words even came out of his mouth. What year is it? Time to find a new doctor!

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  7. Oh geez Jen! I'm glad you have a plan and can still run ;)

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  8. WOW, that is crazy. I have a almost 5 year old with lots of food allergies so I understand living with the allergic reactions. Your new doctor sounds fantastic. Good luck!

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  9. I have the same issue! It's mostly handled by being super careful with what I eat pre-run (apples, peppers, and peanut butter are no go items for me!) and I carry Benadryl on longer runs and take it preemptively during bad allergy season. It's manageable but I def gave to be careful! (Helps that lifting is my first love of exercise, not running!)
    Good luck out there! (Oh and my doc recommends the kids instant dissolve Benadryl tablets instead of normal ones for when it happens mid-run. They work faster apparently because they break down in your mouth)

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  10. Here's my post on the same issue - http://www.fatcityfit.com/2013/07/allergic-to-running.html?m=0

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  11. Wow! I've heard of this but didn't know much about it. That's awesome that you are arming yourself with knowledge and having a plan of action. :) Good luck!

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  12. I have definitely never heard of that but I can relate to chronic issues that make exercising difficult. All my well wishes for you because as tough as it is physically I always find it to be tougher emotionally. Good on you to be proactive in finding a medical team that is working better for you.

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  13. I've never heard of this. Did they say if it's rare?? Knowledge is power and I'm glad you got some answers. I have no doubt you'll find a way around this. Hang in there.

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  14. The dr did say it was rare and hard to know when an attack would come one. Which is frustrating but I can live with it and still be active!

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  15. Chronic issues that make it difficult to exercise are the pits! Be well!

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  16. Oh my!!! Thanks for letting me know about the dissolvable tablets. I will get them!!!


    I never thought about apples, peppers, and pb. Hmmm... I wonder if they will test for them?

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  17. I know, right??? It was the injury...and then this kind of popped up in the midst of it. It was really hard to handle....but I'm getting there!

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  18. Sometimes dr's are just not very good or informative. I have to remember they are general dr.'s. Have you seen a specialist? I hope you resolve your phlegmy issue!!!

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  19. I kind of am hoping it's food related as well!!!

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  20. They tested for all those for me but nothing showed up in a clinical tests. Apparently it's often the combination - so the food, with the running or the running combined with where you are in your cycle or seasonal allergies or if you're getting sick etc etc etc. really hard to pin point unfortunately.

    Good luck - hope your testing reveals more than mine did.

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