Managing Ehlers-Danlos syndrome: a physician's perspective

I was suicidal before my diagnosis and treatment plan. I had no hope. Getting the diagnosis and having doctors take me serious gave me hope and a reason to live again.

I have had eds/hms for over 40yrs, and so much stuff hits us out of nowhere, that frankly the patient becomes more expert. I would love to see a doctor or consultant who suffers from chronic eds/hms,,and let them experience the daily hell it is and the ignorance and cynism so many doctors treat us with.

Hearing him at 4:00 made me tear up. My pain is so unmanaged and I'm starting to give up hope. Knowing this is progressive is making me give up... but hearing i could get back to a life again just gave me so much hope and happiness

For 30 years no doctor has ever been able to give me a diagnosis. I’ve lived in severe pain for years. Barely able to walk, lost my job and have had 8 orthopedic surgeries. I was however kicked out of the Army in 1981 for EDS.

We also have larger amygdalas generally and more reactive flight or fight systems.

My stepdaughter was just diagnosed with EDS after years of trying to figure out what was going on with her. So glad there is treatment and things we can do!

Thank you for posting. Fraser has saved my life. I would not be here without him, he is an amazing person and I owe him everything.

This disorder affects the whole body and yes we get depressed it’s never ending too. Also Thank You to the dam vax everything escalated in flare since 3 dam years now pissed off is saying it mildly. Now compressions to deal with too besides the other issues we have grrrr

No one in my city will give me a treatment plan, all the rheumatologists reject me due to EDS... MY hand joints are so awful now and my movement and hypermobility. Idk why no one will help.

My oldest son had ehlers danlos syndrome he had the worst kind and was hospitalized most of his life in and out of the hospital he passed away at the age of 33 . I was told that the eds is passed down from my mothers side and

I have EDS and mine is the Classical type, mine is type two. I can do the splits as a child and I still can. I can stretch my shin on my hands, under my eyes and on my neck behind my ears. I live in constant excruciating chronic pain! I bruise easy and I fell at my work and it took me a while to heal and I still will trip when I am walking thus I rely on my cane to help with stability. I got my diagnosis from my Neurologist, because I, too have Epilepsy. But my Epilepsy is not due to my EDS. I am now being tested for POTS or another form of Tachycardia. I use a Wheelchair or a Rolling Walker at my church because the building is very big and by the time I get to the church sanctuary I would be in pain and out of energy as well as lightheaded and unable to enjoy the service and the sermon. My EDS has progressed in my vision, thus is why my eye doctor is keeping a close watch on my eyes.

I feel like I’m getting worse every day and have no help from GPs here in UK.

In primary school i use to lie on my tummy and put legs over my head all the way up to my calf 😬 Prior to surgery I could stand with both feet facing backwards 😅 Lest I forget the tree climbing version of "chicken".. who could jump from the highest branch. My advantage came in when I landed from great heights and my joints would dislocate.. I'd just pop em back in!! circus freak hours over here .. Have totally tried to off myself many times yikes. I feel so bad for my GPS over the years, they have to manage so many patients and so many different conditions. They never know about EDS but do their best. Def heading back into suicidal territory as I age and things keep getting worse uhg. I just want to be able to work, use my hands properly, and find someone who can help with ehlersdanlos without it costing thousands of my nonexistent money.

Hurrah for realising we are so many.

I wish you were in Atlantic Canada. I just want to stop living in pain and misery and being told that there's nothing wrong with me, but never having an explanation as to why my body is doing all these weird things it's doing.

I feel like I'm too sick in too many ways to be helped. It's very unfortunate that the links listed here go to link not found results. I was hopeful I could give that information to my doctors and maybe get some relief. They've put me on depression and anxiety meds and have already increased them, within a year, but there's been no improvement. The reason for this is severe pain and poor quality of life are the cause of my depression and anxiety, but my pain meds haven't been changed or increased since I started them >20 years ago. I've lost almost all hope of getting real help. I don't know what else to do and wish doctor assisted compassionate end of life were rights for every person. We shouldn't have to contemplate some violent suicide, when we could go peacefully and humanely with our loved ones around us instead. I'll never understand how it's the humane thing to do for animals, but not for humans.

I wasn't diagnosed until my 60s. My skin feels like it's on fire always. I need bi-lateral reverse shoulder replacements and my other knee replaced at 67. I had knee issues at 12. I put my thumb to my wrist all the time. I had major knee surgery at 19. I've been on disability for 13 years. Barely surviving financially. Cervical and lumbar spine are shot. The pain is unvbearable. I'm constantly nauseous. Carafate stopped working.

I was born in Timaru 1963. Always had hyper 8:24 joint mobility. I am still having a hard time with Doctors in Australia. I live in Darwin now.

I'm 45. I've recently trained to be an RN in Canada, and have been practicing for about a year. I'd never heard of EDS before my girlfriend mentioned it last week. I'm almost certain I have it. Anyone know if chronic headache is a symptom?

Good info, Thank you for helping ppl w/ EDS.