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Community Voices

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.

12 people are talking about this
Community Voices

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!

3 people are talking about this
Community Voices

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

9 people are talking about this
Community Voices
Community Voices

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

Community Voices
Community Voices

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

Community Voices
Community Voices

Beyond Overwhelmed and then Overwhelmed beyond that. Can anyone understand?

<p>Beyond Overwhelmed and then Overwhelmed beyond that. Can anyone understand?</p>
2 people are talking about this
Community Voices

Grey out while eating

I have #PosturalOrthostaticTachycardiaSyndrome and #neurallymediatedhypotension and today while I was eating dinner my vision suddenly went grey, I became very dizzy, and I felt like I couldn’t breathe. My vision came back almost instantly but it took me a few seconds before I could fully breathe again, and the dizziness lasted around a minute. This has never happened to me before while just sitting and eating. Has this happened to anyone else? Do you think my #POTS or #nmh is getting worse? What are your thoughts?
#Fibromyaliga #MyalgicEncephalomyelitis #Anxiety #Depression #hypermobile

4 people are talking about this