I'm starting to think I should start to use my CPAP regularly again...
Nahh!
So anyways, I have a bit of a treat for y'all :) I've seen these "how it really is" memes floating around lately, so I decided to make one for EDS. Let me know if you find it accurate for you - of course this is just how I see it - leave me some comments! Tell me if you like it! And feel free to re-post:
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So a couple more things on the agenda: (1) spreading the love for the video my friend made about EDS, and (2) my stupid lungs!
Firstly - I must give a shout out to a fellow teen EDSer, Alexandra Coleman, who made this Ehlers-Danlos Awareness video. She got some photos and quotes from teens with EDS. (one of the photos is me! :) heyy!) So, spread the love and such. Here that is:
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Alright, and lastly - I have a question for all you fellow EDSers who might have experience with lung problems! I've been having issues with my lungs for quite a while now and my docs haven't been able to figure out what's goin on. For a while they just labeled it as "asthma" because they didn't know what else to label it. But they seriously doubt that it's asthma, and I want some actual answers! They've been prescribing daily inhaled steroids that have been helping, (flovent to qvar, now to pulmicort)...but those are prescribed for all kinds of lung problems all the time, so that doesn't mean that it's asthma... yet the rescue inhaler they gave me (with albuterol in it) which is used just for asthma I believe, NEVER works, and I've still ended up in the hospital more than once, without it helping at all in an emergency.
So anyways - I'd like to know what's wrong with my lungs exactly (I mean I know it's because of the EDS but what exactly is this seperate condition called, because even the asthma specialist I went to doesn't think it's asthma?) and what have you done that has helped at all? I wanna breathe again!
Thanks loveys! We'll chat again soon :)
<3
I'm not sure about the lung thing honestly. I have issues like that as well. I can't be around ANYTHING heavily scented or exercise or I can't breathe, and inhalers don't work. I do know that when I was a baby I couldn't lie down as I would stop breathing. I think being naturally bendy as well as having the EDS made my throat collapse or something. The doctors never did figure out what it was.
ReplyDeleteI wish you luck in figuring it out. You should check out my EDS blog over at http://theadventuresofbendythedinosaur.blogspot.com/
it doesn't seem to be scents or even exercise (i love exercising). it's just a constant, chronic cough with all kinds of gunk in my lungs, and overall difficulty breathing. sometimes gets worse, but no real pattern.
ReplyDeletei'd just ignore it and move on, but it's just getting worse and i'd really like to figure out a way to be able to manage it before it lands me back in the hospital :/
I will definitely check out your blog! <3
thanks for stopping by!
-jessica
do you have POTS? I was in the hospital repeatedly for what they thought was asthma and on nebulizers round the clock. this was all before I was diagnosed with EDS and POTS. Now all of the hard time breathing, coughing, etc. seems to be due to POTS, not as much asthma. Once I got on salt tablets and told to drink 80-120 oz of fluids daily, I seem to have lost my "asthma" troubles. I still have trouble breathing sometimes but I figured out that it has to do with my heart-not lungs. At least for the most part it is my heart. When I change position I can barely breathe because my heart rate goes really high and my blood pressure drops. I hope some of this helps... btw what have you used your CPAP mask for in the past??
ReplyDeleteI also had POTS that was misdiagnosed as asthma and got better with correct treatment. But the breathing problems with POTS usually don't involve coughing up actual "gunk" and don't put you in the hospital. It actually sounds like a rare genetic condition I once read about called primary ciliary dyskinesia. It is often missed by regular docs because it is so rare, but it can be diagnosed and treated (although not cured). Here is a website I found about it: http://www.pcdfoundation.org/. I hope this helps!
ReplyDeleteJessica, about your lung issue, you should let your medical team know that there is a form of EDS that is also tied with PVNH (periventricular nodular heterotopia): it's called PVNH4 or perivenricular nodular heterotopia with Ehlers Danlos Syndrome and it is characterized by neurons not migrating to their proper location in the brain due a mutation or, as in my family case, a deletion of the Filamin A gene. My daughter passed away from PVNH4 as a baby - her lungs were plagued by emphysema even before she was born but we did not know it because we did not know I also have PVNH4 as did my mom. I know close to 80 families with PVNH and although not all have the EDS component attached to it, many of them have lung issues. In my case, my lungs have emphysemous apycal bullaes and I am finding myself more and more troubled by lung issues and inability to do a lot of activities, even with treatment. I am mildly affected by EDS compared to most, except for serious back issues and a chira like issue. Throughout my life, I was told I had asthma, now I know it is not true. I can send you references for PVNH4 if you like. Big hugs
ReplyDeleteHiya, sorry to hear about the lung issues, cant say I can help though as I don't seem to have lung problems, apart from asthma, which isn't exactly the biggest problem for me at the moment!! I hope that you'll find some good treatment and diagnosis. I love the HOW IT IS photo and the video, so true, and definitely accurate!
ReplyDeleteHope everyone isn't in to much pain at the moment (I wish)
~Tiri~
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I had food sensitivities. Once I had an IGg test and once I avoided those foods life changed. My "asthma" went away and I finally understood why people wanted to run and actually enjoyed it. It was eye opening. Until I went in a bouncy house and sprained my leg up to my hip baffling doctors ( wasn't diagnosed eds at the time ) and being down for count then for mths. At that point I was at the mercy of other people and unable to stay allergy free. I'm not sure if I am thankful for those three weeks of knowing what is like to be normal or not. It's kinda like fling first class and then getting stuck in coach. I will try again one day but it's ard as I react to most food so it is limiting.
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