Discover and read the best of Twitter Threads about #EhlersDanlosSyndrome

Most recents (5)

instagram.com/p/B-QMkO2Jkb-/

To every doctor and/or provider who says that #EhlersDanlos diagnoses don't matter: Until I learned that my fibro diagnosis was a #misdiagnosis, I was improperly treating myself and causing further injury. It's the difference between acute/chronic injury.
I didn't know I had it for 35 years. I say 35 years because #EhlersDanlos is a birth to death condition. It took 35 years to get me diagnosed and multiple providers. I hope that the @AmerMedicalAssn starts pushing for #EhlersDanlos eduction and soon.
I firmly believe that there are multitudes of people just like me who were #misdiagnosed as having fibromyalgia or some other pain condition, even having symptoms that don't completely add up to fibro, who actually have a type or several types of #EhlersDanlosSyndrome.
Read 7 tweets
Dr. Kertesz addresses the doctors who believe no one should be started on #opioids in this tweet. I'd like to chime in as well.

I believe it should be a carefully thought out decision between doctor & patient. I'm a patient that benefits from #LongTermOpioidTherapy. A few notes:
I finally got a diagnosis that isn't half-assed. I have #EhlersDanlosSyndrome, among other things. It's extremely painful. It started to set in during college. I should have know that wearing a backpack shouldn't have been excruciating. It was. I didn't go on an #opioid regimen
for years, however.

I finally tried #opioids long-term around the age of 28. I was working as a freelance photographer. Hauling equipment around became so painful, I hit a WALL around the age of 30. I had to slow down, whether I liked it or not. I got married, & after that, my
Read 10 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
I haven't been great about updating positive health things so here goes:

#thread #EhlersDanlosSyndrome #ChronicPain #mcas #POTS #migraine
I have been on a medication called #naltrexone at low doses for about two months and it's been amazing. I have my life back. I'm able to do things again. Still need a lot of rest, but I feel much better a lot of the time. It reduces the pain some and gives me energy.
I have some new diagnoses including gastroperesis. This means that the doctors are helping me figure out how to handle the GI issues and it's not as confusing what's going on there. The weight loss is under control and I'm getting my liver and some nutritional things checked out.
Read 5 tweets
And for my #visuallyimpaired folks, I will #type out the #text of that #image, down here. Cuz the data is #important. (one of these days I'll get all my comics done with text properly on the site)

Starts here: Hello, It's Trish Malone, creator of #NKVSSP and slightly hurty -
- artist monkey.
And it's just struck me now, so bear with me.
My forearm, right at the elbow, is needles and fire. It happens. And Overuse is the #1 suspect. Turns out today though, overuse is actually #2.

As a patient with #EhlersDanlosSyndrome, I have to be on top of, -
Read 7 tweets

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