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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.


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


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


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


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


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

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How do I know if I have Ehlers-Danlos Syndrome? From reading your stories it sounds like I do. #EhlersDanlosSyndrome #JointHypermobilitySyndrome

My brother used to pull my shoulders and elbows out of socket when I was a tween and being bratty on road trips. The parents would just pull off the road, yank it back into socket and drive on.

Has anyone else had experience with not receiving treatment for joint injuries when they were children, still developing?

Most of my joints are still easily sprain/strained. I have had : Spinal Meningitis, chronic migraines, have a fused L4-5 from a freak fall, and my neck fused by itself. I have chronicI’m a lifelong headache sufferer, studying corporate health/fitness, acupressure and had a thriving therapeutic massage therapy practice in a past life.

I’m now disabled permanently, yet I don’t look sick! I can still dance and wiggle like a whirling dervish , only now it can take days to recover. I’ve lived with chronic muscular skeletal pain all my life. I’m wondering if it even matters at this age to pursue a diagnosis?!

I was on literally hundreds of different meds these last 30 years and got myself off 95% with my neurologists guidance ie: fentanyl patches, anti nausea meds, muscle relaxers, anti depressants, antipsychotics, you name it... they made me feel ill and my personality changed.

I’m not interested in taking anti inflammatory meds- - I would rather take Turmeric and Collagen protein powder in green tea. I’d rather manage pain without pharmaceuticals that constipate and have happy bowel health!

Eliminating sugar has helped, a ton. What are your experiences around sugar and GMO foods? Do they make the pain in your joints worse?

I finally found relatively few side effects using CBD, thc, ancient, ayuervedic blends of herbs and of course ice, heat, compression, elevation, mucho rest, acupuncture and tons of water when I am bedridden.

I’m praying y’all can share/shed some light on my questions Please help me out here.

#hypermobile #JointHypermobilitySyndrome

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

I often think I have too many issues to even list. But I feel the need to give it a try finally. I have I have #HashimotosThyroiditis #AutoimmuneThyroidDisease , #Hypertension , #Fibromyalgia , L5-S1 fusion failed back surgery syndrome with #radiculopathy , #DegenerativeDiscDisease , #OCD , #Anxiety with #Depression ,insomnia, #hypermobile Ehlers Danlos type 3 (hEDS), esophageal webbing from #GERD , peptic ulcer, chronic inner ear and sinus infections, allergic to almost everything and #Asthma . My best friend is my biggest supporter but her daughter, who was my Goddaughter just died from a car accident at 19, so she is understandably incredibly sad and I am so angry that I am unable to be there by her side for more than a short amount of time per day. And when my husband snapped at me tonight, it left me feeling even more overwhelmed and alone. So, I felt the need to reach out to you guys. For what I can’t even explain, more than just for the emotional support and understanding.

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