hypermobile

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Not today

I overdid it for several days in a row over the last two weeks. I can often get an amazingly huge amount of things done, even if just feeling OK. Unfortunately, I pay dearly afterwards.
Today, I will spend most of the day, lying in the recliner because even just sitting up is too much on my body. I hate this.
#EDS #hypermobile #PosturalOrthostaticTachycardiaSyndrome

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I never feel safe in my body #hypermobile #HEDS #EhlersDanlosSyndrome

I had a knee dislocation today while I was literally just sitting on the couch. It was so jarring and random. I’ve dislocated my knees plenty of times but it’s still terrifying every time. Now tonight I’m feeling very anxious and kinda traumatized tbh.

I just want my body to be able to feel relaxed for once. I hate the constant muscle guarding and never being able to get comfortable. I hate having this very real fear that something can come out of place at any second.

Does anyone relate to not feeling safe in your body because of the instability?

Idk what I’m looking for here w/ this post but I’m just feeling kind of alone with all of these feelings right now. It just sucks.

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Does anyone know any tricks on how to prevent my neck from subluxing in my sleep?#hypermobile #cervical #Pain #degenerativediskdisease

I have hypermobile ehlers danlos and I often wake up with my head cranked to one side. I realize that this happens when I wake up after my husband gets up for the day. I'm not coherent enough to realize it happens until I wake up a few hours later. I'm a side sleeper and when he moves it shifts the bed and I fall forward and my weight and his pillows crank my neck. I have degenerative disk disease in my neck and TMJ in addition. Thank you in advance!

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Distract Me/Send Love

Oof-rough health week. STILL rehabbing a knee subluxation from February, but wait there’s more! Neck popped out for Easter, IBS symptoms all week, and for a limited time, an uncomfortable UTI!

At least my emotions are calm/steady. I’m just accepting it all, and resting in bed close to the bathroom.

Send memes/tv show suggestions/encouragement! This is NUTS!!!!!!!! #eds #hypermobile #notokay

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Tampa Bay EDS Dr Search

I live in the Tampa Bay Area and have been completely disappointed with every doctor I have come in contact with from PCP to OBGYN to GI to Rheumatologist. Does anyone have any doctors in the area that specialize in EDS, preferably hEDS? #Hypermobility #hypermobile #EhlersDanlosSyndrome #ChronicIllnessEDS #hypermobileehlers-DanlosSyndrome(hEDS) #HEDS #healthadvocate

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Trying a new Physical Therapist-Any advice?

I have been in and out of physical therapy for the last 10 years when my symptoms became really bad.

I have had some good physical therapists and I’ve had some incompetent ones that hurt me/just wanted my $.

Are there any red flags/guidance I should look for in my evaluation on Friday? Any advice is appreciated.

Thank you Mightys!
#EhlersDanlosSyndrome #hypermobile

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It happened, yet again… Subluxated my right shoulder in my sleep, after doing really well not injuring it again for a month or two. 🙄 #bendy #bjhs #hypermobile #JointHypermobilitySyndrome

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Disabled but Delightful

Hi Extra Loose Connective Tissue Mighties,

I have been lucky to feel well enough to teach in an FSC class this week. These kiddos are working with all they have-disabilities, health issues, nonverbal etc.

Everyday they show up as they are. Everyday we take them as they are. Everyday they try their best that day. Some days are easier just as some are harder, but together we keep going at their pace. We teach them, guide them, console them, and love them as they are.

I realized that while we are teaching them, they too are teaching us. They teach me humility. They teach me patience for myself. They teach me strength & courage. Most of all, they teach me to love myself unconditionally too, as each day they also take me AS I AM.

I hope, fellow Mighty, that you can also find times to accept yourself as you are. You matter, you are enough, and you are able!!!!!

#hypermobile Ehlers Danlos Syndrome