Discover and read the best of Twitter Threads about #ehlersdanlos

Most recents (4)

Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
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At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
I spent 20 years with both chronic and acute pain. My right hip and shoulder dislocate on a daily basis. I have a dozen comorbidities. I was told it was my weight, anxiety or all in my head. It was undiagnosed Ehlers-Danlos Syndrome. #DoctorsAreDickheads
I had doctors say maybe I was just a little sensitive or maybe I was just lazy. #EhlersDanlos #DoctorsAreDickheads
I developed Raynaud's Syndrome and peripheral neuropathy and Central Sensitisation Syndrome as a result of undiagnosed and untreated EDS. My doctor called me a malingerer. #DoctorsAreDickheads
Read 27 tweets
A #special #warning for my folks w or w/o #disabilities who might be taking #Flexeril / #cyclobenzaprine

it says on the warning sheet that very few folks have had #depressive #sideeffects, and maybe I'm just a rarity.

but if i have to take that thing for 2x in a row
waaaugh!
It's small & #insidious.
It starts with "will I ever get better?" & it can escalate into, "Why do I try?" depending how long I am on it.

I only need it sporadically, but yeah.
Changed my world to know that was a possibility.
Now I can say after using it..."Is this thought real?"
For those who would suggest other methods, this one is the best one i have for now.
(In a few years, maybe something that works better will come along or they might know more about why #EhlersDanlos happens)

In the mean time I wanted you to know, in case this happens to you too.
Read 3 tweets
Given that it's #Fibromyalgia Awareness Day in the middle of #EhlersDanlos Awareness Month, let's talk about misdiagnosis.

People with hypermobile EDS or Hypermobility Spectrum Disorder often spend years misdiagnosed with fibromyalgia…

#fibroawarenessday #EDSAwarenessMonth
…I meet people with really clear signs of hypermobility who've been diagnosed with #Fibromyalgia by rheumatology, treated at pain management clinics, or even seen physiotherapy.

None of those professionals seem to know to screen for hypermobility syndromes…

#fibroawarenessday
…This is important because hypermobility syndromes have a physical basis for joint pain that can be improved by multidisciplinary management.

Occupational therapy can provide equipment and teach behavioural changes that reduce stress on joints, Orthotics can support ankles…
Read 8 tweets

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