Discover and read the best of Twitter Threads about #ehlersdanlos

Most recents (21)

1st, what a sloppy claim. The hypothesis that intracellular folate deficiency can cause symptomatic elements of #EDS is not new, but I think it's wrong. The #MTHFR polymorphism is SO common and we've gone down the MTHFR rabbit hole before. /1
You hypothesis is that decreased activation of decorin causes structural differences in collagen making it loose enough to cause hypermobility. I find it interesting that other, peer-reviewed studies say that "decorin promot[es] inflammatory activity"… /2
suggesting that a decrease in decorin could actually be protective in disease associated with an inflammatory state, such as #EhlersDanlos. That is not to say that treating patients with the MTHFR polymorphism with methylfolate couldn't cause improvement, but /3
Read 20 tweets
Ik heb een hekel aan kou. Het doet fysiek zeer. Ik kom niet meer van mijn plek. Ik heb nergens zin meer in. Ik raak geïsoleerd. Doodongelukkig ben ik de hele winter. /1
Ik ervaar temperatuur zo:

Onder 0 - ondraaglijk
0-8 - fucking koud
9-14 - heel koud
15-17 - beetje koud
18-21 - fijn
21-25 - top
26-28 - genoeg
29+ - teveel

Nu zegt iedereen altijd: "je kunt je kleden op kou", maar als ik mijn warmste trui aandeed had ik het nog koud. Door de kou 'bevries' ik, kom ik niet van de bank, zelfs al weet ik dat bewegen helpt tegen kou. Maar een mens, zeker een werkloos mens, kan niet de hele dag bewegen /3
Read 11 tweets
What do you think is the biggest disconnect between the clinic and research when it comes to hEDS?
Here are my thoughts:
- many things are “known EDS things” that EDS providers see. But this data often isn’t published or easily accessible by researchers so there is no follow up on why and how those things happen
- genetics often stops with clinical geneticists and doesn’t reach a lab that can follow up with biology

- a lack of continuity of care so patients see multiple specialists that don’t always know the whole picture outside of their speciality, which is then missing from research
Read 6 tweets
Got the classic "rare disease" line of questioning at my gyno today. Please for the love of God stop asking chronically ill patients who coordinates our care. No one does. No one. They just splice up our bodies piecemeal and send us to the next specialist. 1/4
When I had my "best" care I had a: geneticist, pain mgmt dr, cardiologist, neurologist, neurosurgeon, a GI, a GP, one orthopedist for each joint (which back then were hips, shoulders, hands), a bracing specialist, a PT team, and a gyno. 2/4
That's 13 drs. None of whom spoke to one another, coordinated care, or ensured their recommendations didn't clash with those of my other specialists. My GP just wrote numerous referrals but couldn't coordinate care bc they *were not trained to do so.* 3/4
Read 5 tweets
Greetings! I'll be your disabled hostess for this week. I am grappling with #AnkylosingSpondylitis, #Hashimotos, #EhlersDanlos, and some yet to be discovered issues. I write, direct, and produce films and am figuring out how to do that while disabled. - @jenna_payne A wall of money with the writing $300 MILLION. In front of tMe with dark hair pulled up in a messy bun lying on a white
The above pictures are from my wedding & after the last biggish live action short film I directed.

In 2015 & 2016, I felt an increasing amount of pain & began to struggle to digest food. In late 2016, it began to rain inside our apartment. Six months later my spine caught fire.
I worked my last film production job - a career I both loved b/c there's nothing like it & hated b/c the hours & stress were brutal - in the spring of 2017. Between that & the eventual Aspergillus that was discovered in my apt (& a blood test), I have been disabled ever since.
Read 8 tweets
It's #EDSAwarenessMonth and I am one of those people who bizarrely feels like I don't 'deserve' a diagnosis because I don't have a full house of Beighton symptoms and I am not as badly off as my friends, even though I subluxate my shoulders every night, live in constant pain...
...and have been worried for the last five years that I may dislocate my jaw.
Right now I am fundraising for a woman in my city whom I have never met who is dying from the cascade of health issues that comes from being medically gaslighted for so long (even though she worked in a hospital before)...
Read 17 tweets
Spent years seeing surgeons, rheumatologist, PT , PCP, etc. for dif issues only to have to diagnose myself (my rheumatologist agrees) with #EhlersDanlos which I only could do because I am in medical school.... has this happened to anyone else? #ChronicPain #medtwitter
Kind of blown away by the response, so far over 1000 reactions in total. Feel like I am starting to get a decent sample size to show that there is clearly a lack in clinical education that prevents most practitioners from integrating issues....
With so many people being mis or under diagnosed... feels like it should be on a standard differential for people presenting with joint complaints (and other chronic disease as well). #EhlersDanlos #EhlersDanlosSyndrome #chronicpain #MedTwitter
Read 3 tweets
I was diagnosed with #EhlersDanlos and #ArnoldChiari in undergrad. The eds dx came the winter of sophomore year, and the Chiari dx the spring of senior year. I would have given anything to have disabled mentors through those years. 1/11
I care about disability representation in higher ed because I had to find my way into claiming a disabled identity. Alone. Because I didn't know what to read or who to reach out to or what to ask for. Representation leads to belonging. 2/11
In undergrad I had wonderful profs, some of whom privately disclosed medical issues, but none of whom were vocal and public about identifying as disabled. I didn't have a professor with mobility devices like I had. 3/11
Read 11 tweets
Just a reminder that #ehlersdanlos is just another reason to stay away too
Too many people with ehlers danlos and joint hypermobility see chiropractors without realizing the dangers in it
Contraindications to spinal manipulative therapy according to @WHO
- basilar invagination of the upper cervical spine
- chiari malformation
- congenital, generalized Hypermobility
- signs or patterns of instability
- syringomyelia
Read 7 tweets
Boosting so all our members can answer! I have #EhlersDanlos so I have a really hard time hand writing. I try to limit my writing tasks because my hands cramp a lot. Investing in silver ring splints made it so so so much easier for me to type comfortably without dislocating.
I also was incredibly lucky to have a friend offer to help build me a desktop! Throughout grad school I had a $150 acer chromebook that I'd take to class with me. I loved it - it could be switched to tablet mode, it was fine for attendance and class discussion when teaching.
And it was lightweight. Made such a huge difference when traversing my campus. Then I have a nice desktop at home that's built to run with my access needs in mind. My friend recommended decent screens, and I set it up as a dual monitor.
Read 6 tweets
Just så.
Så vad du ser på min utsida säger ingenting om hur jag faktiskt mår.

#EDS #kronisksmärta #EhlersDanlos #fatigue #hjärntrött
Tänk dig att du krockar, lägg sedan på influensa, träningsvärk i alla muskler i kroppen, stukade hand- och fotleder, tandvärk, magont och en utmattning som ofta gör dig inkapabel att ta in information och ofta tvingar dig till vila vare sig du vill eller inte.
Ungefär så kanske.
Prova det vettja.
Sluta gnäll när jag och andra ibland gör saker vi mår bra av (stickar, bakar, målar, syr eller vad som helst) trots smärtan.
Vi måste för att stå ut och du har fanimej ingen aning om vad vi krigar mot i våra kroppar, VARJE MINUT AV VARJE DYGN, ÅR EFTER ÅR.
Read 6 tweets
I’m struggling with the exhaustion of this #LongHaulers #COVID19 experience.

I was first sick in January (after a trip to Barcelona) with fever, pain, cough, shortness of breath so bad I had to use my CPAP all day.

Couldn’t get tested at the time bcs of UK restrictions
Then in March I had what felt like a relapse — fever & feeling like I’d been hit by a damn truck. I slept like 16 hours a day for 10+ days. Then thought I recovered!

Until 6/7 weeks ago when fatigue & fever came back with added ear infections after super bad jaw dislocation
I’ve also not been able to get my regular disability treatments for my #EhlersDanlos, so been dealing with more severe dislocations & pain day by day.

Toughest thing is being so tired I think. Usually I can push through the #EDS pain but #COVID19 has robbed me of energy to do so
Read 6 tweets
Unfortunately I’m accustomed to having weeks at a time stuck at home sick #disabled #EhlersDanlos.

So, one upside is I can share some tips for coping with being shut up indoors for extended periods!

Settle in kids, this might be a long thread 🧵🧵🧵🧵🧵🧵🧵🧵
1) VitD deficiency sucks and will make you likelier to get sick too…

Being indoors more you’re more susceptible — take Vit D supplements starting right now ☀️ 💊 ☀️
2) Reduction in outdoors time will also mess you up. Either make a plan to SAFELY spend as much time as usual outside, or get yourself sat down in front of a daylight lamp soon as ☀️💡☀️

I like this one as it’s easy to move with you [aff link]
Read 34 tweets
Had to cancel monthly trip to Newcastle for #EhlersDanlos treatments, so no #ShittestTopGearChallenge last weekend.

Got home last Thurs night feeling increasingly rough ... like a relapse of the chest infection I had on returning from Barcelona in January.
In Jan, just woke up one morning with a death rattle on every exhale & high temperature. Assumed I’d somehow gotten bronchitis without first having a cold or flu, spent a couple of weeks working from home & resting. Needed CPAP some daytimes as struggling to breathe (unusual)
One thing with my manifestation of #EhlersDanlos is my ribs dislocate really easily, so I can easily go from a cold to bronchitis or pneumonia. I’m one of those “underlying conditions” people who’s more at risk. Multiple docs have left me w a ready-to-dispense antibiotics script
Read 6 tweets
I had a really good set of treatments yesterday. Feel better than I have in years.

Some tough stuff to get through (dislocated bones in feet, tendons in ankle, knee out, hip & pelvis had been out, mid back super tense trying to stabilise, etc) but somehow easier? #EhlersDanlos
Two big interventions. First chiro helping relocate bones in foot & ankle & lower leg to be correct, so deep tissue specialist could get my adhering soleus to finally release and work properly (coming at it from the side helped too). I can walk without it pulling! #EhlersDanlos Image
Second, seems some tendons/ligaments had ended up clumped together under my arm, where my arm bone connected in to shoulder socket. I’d gotten to the point of it feeling WRONG like something was gonna give way even doing push-ups against the wall. Fixing was intense #EhlersDanlos ImageImage
Read 7 tweets
Yesterday’s treatment was good! Feels like the various shiatsu massager investments are helping tide me over between treatments (and obvs had a spa holiday in Barcelona between last treatment in Dec and this one; also a shorter gap). #EhlersDanlos
Ribs and intercostals were out, and chiro focused on this but plenty of deep tissue work to round it out as well. Right hip, knee and ankle were all a bit wonky, with knee having been out a lot. And apparently my right foot has hurt for 6+ months bcs cuneiform tarsals dislocated Image
The significant bruising after last lidocaine infusion mid Dec still hasn’t fully cleared, tho not quite as lurid as at its worst (pictured). Apparently my abs felt like they were full of marbles. Shoulder & bicep & elbow & forearm all twisted out, fixed now #EhlersDanlos ImageImage
Read 5 tweets
Good treatment yesterday. Chiro up in Newcastle first, bunch of chest drops to adjust ribs, hip drops, neck adjustments. Then 3 hrs deep tissue massage. Seems some shiatsu devices I’ve invested in helping a bit - fewer toes dislocated than usual, ankles better #EhlersDanlos
Scar tissue in calves still needed breaking down, but not as painful. Unholy trinity of sartorial, IT band and hip flexors all being terrible was excruciating to untangle. #EhlersDanlos #DeepTissue Image
Both kneecaps over 2in out of place but relatively easy to get back in, once the unholy trinity and soleus all sorted. Key seems to be to attack soleus from the sides with knees flexed (ie laid on side, semi-foetal position). #EhlersDanlos #DeepTissue Image
Read 6 tweets
Me: “Ow, that hurts!”

Specialist <deadpan>: “Yes. Not ONE of your knee tendons is in the right place. Well done, gold star”

Well that’s me told then #EhlersDanlos #DeepTissueTreatment
Sadly today was much much more painful than last treatment. Dislocated ribs, thumbs, pelvis, knees, ankles, 7 dislocated toes and both shoulders. Tendons and ligaments wrong all over. #EhlersDanlos #DeepTissueTreatment
And learned about two knew things I didn’t knew existed that were apparently causing me immense problems: tibialis posterior and flexor digitorum longus. Not sure if they caused my calf muscle to malfunction or vice versa 😰 #EhlersDanlos #DeepTissueTreatment Image
Read 3 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
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
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…

…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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