Discover and read the best of Twitter Threads about #EhlersDanlos

Most recents (8)

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
Good Morning #EDS #EhlersDanlos Twitter
This is long thread on issues the past week with The EDS Society, my ideas to move forward & after this I'll be quiet on Twitter for awhile. It's time to do behind the scenes work now, I'm fortunate to have the resources to do so. 1/
On Nov 05 the fantastic (& brilliant) @DrEReinhold dropped this long anticipated paper on prevalence of hEDS Conclusion : not rare. The community was ecstatic. No more refusals from dctrs to test for EDS because it's *too rare*
2/
The same day, The EDS Society posted an unsigned letter (later signed) challenging this paper. Issues? Use of 'JHS' patients (the Demmler paper dates back 27yrs, dx was called EDS 3-JHS) & that many would now be considered 'HSD' based on new criteria
3/
Read 20 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

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

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
1. This is a very useful thread #MedTwitter because it tracks common reasoning errors that lead doctors to readily accept psychosomatic dx for #MEcfs and other contested conditions like #EhlersDanlos, #mito, #dysautonomia, #LymeDisease, etc.
2. Start with the duty that defines your profession @strauss_matt - to ensure that every patient with a need for med care (medical testing, treatment, or support) receives it when she seeks it from you. Mistaken psychosomatic dx violates that duty in every case where it occurs.
3. No doctor should have to be told to err on the side of medical caution. Your job requires (a) humility about the limits of dx science and (b) historical awareness of immense suffering caused by psychological explanations for #MS #epilepsy #PepticUlcer #Parkinsons #lupus etc.
Read 8 tweets
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 />
<br />
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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