Discover and read the best of Twitter Threads about #Hypermobility

Most recents (5)

#Hypermobility #CCI #CranioCervicalObstructions #EDS #MEcfs

„Compared to a general population, we found a large (‼️) overrepresentation of hypermobility, signs of IH, and craniocervical obstructions. 1/4
Our hypothesis was strengthened for future studies on the possible relation between ME/CFS symptoms and hypermobility, IH, and craniocervical obstructions in a portion of patients with ME/CFS. 2/4
If our findings are confirmed, new diagnostic and therapeutic approaches to this widespread neurological syndrome should be considered.“ 3/4
Read 4 tweets
When I got #LongCovid, it felt like I began to fall apart. But that was not only figuratively, I really was, literally.
Now I know the status of my neck- and spine. And it’s very seriously damaged…1/
#EDS #MEspine #MECFS #hypermobility
Following imaging & evaluation at @Clinica_Teknon I have been diagnosed with -

1) CCI (Cranio-Cervical Instability) and Cranial Settling.
This means that my skull, C0, is sinking down, pressing on my spine and compressing my brainstem.
2) AAD & AAI (Atlanto-Axial Dislocation and Subluxation).
This means that my C1 & C2 vertebrae are misaligned and dislocated to the left.
Read 13 tweets
@H2OhTwist @Rainbow_Bodies @LoveInYourTummy @PaperJamLuna @sophiacbess @DrEReinhold @bennessb @BendyBrain @throughfibrofog @FibroBloggers @Be_Kinderr Yes. I. Will probably have worked a year in order to find/begin/see results from PT with training in hyper-mobility.

I’m on the edge of hEDS. My sister has fully realized #hypermobility.. however has never found it causes any dysfunction. ImageImageImageImage
@H2OhTwist @Rainbow_Bodies @LoveInYourTummy @PaperJamLuna @sophiacbess @DrEReinhold @bennessb @BendyBrain @throughfibrofog @FibroBloggers @Be_Kinderr However by adulthood (22) I needed to have major jaw surgery, resetting it then bolting things down.

Over the past few years I’ve done hard work revising the consequences of that through “minor” oral surgeries and intense soft tissue work.. regaining the lost natural mobility.
@H2OhTwist @Rainbow_Bodies @LoveInYourTummy @PaperJamLuna @sophiacbess @DrEReinhold @bennessb @BendyBrain @throughfibrofog @FibroBloggers @Be_Kinderr I’m looking at some of the dance videos I’m doing on TikTok and seeing I don’t know how to control this excessive freedom (my sister says this was the only downside.. in cheerleading as in dance here body rotated past the desired lines).

I’m trying and failing to control.
Read 7 tweets
BIG PROBLEMS with framing of new baseline study of NIH intramural #LongCovid #PASC cohort

lack of abnormalities on ROUTINE tests
≠
no objective abnormalities

It ignores #LongCOVID similarities to #MECFS & advances in research on both, including those funded by NIH!

1/
no evidence found
≠
evidence against

LOOK HARDER

Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.

2/

acpjournals.org/doi/10.7326/M2…
This follows the HORRIFYING tendency of medicine to psychologize illness, when physiological abnormalities aren't found.

#MedTwitter

3/
Read 15 tweets
I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
Read 16 tweets

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