Discover and read the best of Twitter Threads about #ehlersdanlos

Most recents (11)

You forgot to mention Bulbena is on the Psychiatric and Psychological Aspects Working Group of @TheEDSociety International Consortium. #EhlersDanlos
Heres Bulbena again: this line about “...so-called functional illnesses such as fibromyalgia, multiple chemical sensitivities, and chronic fatigue”? And calling for more focus on the “psychosomatic field”? public-files.prbb.org/publicacions/9…
Bulbena: "Patients with a diagnosis of JHS provide a highly valuable opportunity for
an in-depth study of the genetic basis of anxiety." pdfs.semanticscholar.org/c5b0/9aa545753… We are not your guinea pigs
Read 8 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/ I am one of the admins of a caregivers facebook page. I'd like to help others find the info they need to be good caregivers. I am not slanting this toward anything specific, though I am clustering around: #EDS, #EhlersDanlos #ME #CFS #Fibromyalgia #Fibro
2/ I know some of you are: patient, caregiver or both. I'd love to hear the thoughts/advice you'd give a caregiver (please be clear about your role if you are comfortable doing so). Also, if you have websites you think are great too please share - some are listed below.
3/ @JanetDafoe I know has given a lecture and it is captured in this video. Maybe there are other resources you'd like to share?
Read 7 tweets
Adding thread about vascular and nerve entrapment
Thread: Thank you @violetbakes for the pictures backing up the next installment of what I think would be useful to #EDS patients. Something that could be used if going to the hospital
Thread: thank you @ABMollyblum for the next installment of my pinned thread of things I’ve found useful in managing #EDS #EhlersDanlos in my wife and daughter. Info for Gastroenterologists for your GI appt. alanspanosmd.com/wp-content/upl…
Read 11 tweets
When a doctor says “why do you need an #EhlersDanlos diagnosis, there’s no cure.” It demonstrates a lack of understanding of medicine, science and patient self-advocacy. I am NOT claiming these tweets are the best or most current sources, nor is the list of reasons complete 1/11
For most with #EDS the extreme relief of being told “it’s not all in your head, it’s real and there are others like you” is reason enough. So many with EDS feel alone. Diagnosing someone with conversion disorder instead , is it’s own problem! 2/11 ncbi.nlm.nih.gov/pmc/articles/P…
While #POTS, #MCAS, #Osteoporosis in young women, and many other conditions may be less common in general they are very common in the #EDS population. If you have a horse, think horse conditions, but if you are looking at a zebra, think zebra diseases 3/11 ohtwist.com/about-eds/como…
Read 12 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
My wife and I wow a huge debt of gratitude to @roomcmoo and @H2OhTwist and they don’t even know what they did! You see my wife (#EDS #POTS #MCAS) and my daughter (#EhlersDanlos) are at the beach for an 8 day vacation and walk up to a mile each day. So what??
I met my am a wife almost 6 years ago. At that time she had chronic bronchitis and both she and my daughter had bad asthma. I also learned her joints dislocated regularly, she had G.I. issues, she would get adrenaline and a million other debilitating symptoms.
She had been to more doctors than she could count and had more test then she could count. Her medical file was at least 8 inches thick. She had never gotten a clue to what she instinctively believed were connected conditions. She was told “it’s all in your head” or “anxiety!”
Read 10 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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