Dealing with Progressive EDS: How to Manage the Pain and Restrictions

i feel like up until a few years ago my EDS was something i could ignore pretty easily, but now it's very restrictive and painful. is that a thing? can EDS be progressive somehow? and if so what do i need to do to slow the process down because this is a pretty important time in my career and i really can't afford to mess it up more than i already am...

Dealing with Tender Muscles: Seeking Advice

Does anyone else have very tender muscles? I know muscle weakness is common but just rubbing my back makes the muscles so tender and painful. Like a simple touch feels like somebody hit me. Is this EDS or something else?

Seeking Answers for Severe Pain and Hypermobility

got told by physio today (after 5years if looking for answers) that the reason for my severe pain is because I have hypermobility. I have since realised that I also have mild skin hyperextension, unexplained stretch mark, atrophic scarring and papules on my heels. could this be hEDS? I've looked at the checklist and I think I meet all the criteria

Looking for Hypermobility Support and Communities

hi, so i recently got diagnosed with hypermobility by a physiatrist; they also have referred me to a geneticist to see if i have ehlers danlos syndrome; it’s great news to be a step ahead with my treatment, but at the same time i can’t help but feel a little lost as to where to go from here. id like more support in understanding this part of my condition. is anyone aware of any communities/support groups for hypermobility?

Managing heds Diagnosis: What Should I Do?

I was just diagnosed with heds while I was at an appointment for my pots. The doctor didn't really explain much about it so I was wondering what I should be doing to manage it? thanks!

Best cane for hyperextending joints? Need advice!

hi! im wondering if anyone knows what type of cane is best for people whos joints hyper extend? (im not sure if i have eds i just know my joints hurt alot) cause i want to get a cane since i think it would help when my knees hurt too bad, my gi pain gets bad and i cant stand very well, and when im feeling faint but need to continue on with my day. im just worried that my wrists will hurt too bad from using a cane, any tips?

Seeking Tips for hEDS and Shoulder Pain/Instability

Shoulder subluxed last week. It went out and then popped back in, but I’m still not sure if it’s in the right place. Please send all your tips for hEDS and shoulder pain/instability. I usually KT tape my other shoulder but this one really feels like it needs to pop still/isn’t quite right. It’s given me a migraine bc it’s tight and keeps slipping. Thanks!

Seeking Advice for EDS Pain Management

I, like many others with EDS, have been dealing with pain for a long time and have only been diagnosed recently. I have been going through physical therapy since 9th grade and taking over the counter medicines for a long time. Are there any other methods that I can utilize to help with my pain that you guys have found to help yours? Also a funny side note, my EDS journey started not because of a doctor (even after many many pain derived visits), it was my music teacher that mentioned me possibly having it. Interesting.

Debilitating Pain from Herniated Disc: Need Tips!

Any tips for debilitating pain from a herniated disc in the lower back? Braces hurt it worse I’ve tried two. Physical therapy massage and chiro helps but then I go back to work and it starts all over again I’m taking celebrex and a muscle relaxer which don’t help at all anymore

Experiences with Epidural Steroid Injections for Back Pain?

Has anyone has epidural steroid injections in their back? What were your side effects and did it help

Struggling with Sleeping Positions: Need Advice

does anyone have advice on sleeping positions cos I'm really struggling on being comfortable every position hurts.

Constant Hip Pain While Walking - Need Advice!

So, I have a problem where my hip flexor will begin to hurt as I walk, and will get to the point that the *only* thing that relieves it is sitting down to rest. Just standing for a bit doesn't make the next step any less painful. I don't even know what to call it; it isn't a spasm or cramp, because it only really hurts when I take a step (aside from a residual achiness that gradually gets worse as I keep trying to walk). Stretching can make it worse, even though it temporarily feels good. I'm taking Baclofen 20 mg 3 times a day (with an optional 2am dose if I wake up in spasms/cramps). I also have tizanidine (Zanaflex) that I can take between Baclofen doses as needed. Neither of them helps with this. This started in late spring of 2011, and has not gotten better. I had a scope surgery of that hip Dec. 2011 for torn cartilage, and a total hip replacement in 2016 for advanced arthritis. This particular pain has, at times, improved a little, but I always reach a plateau, and then it goes right back to bad. Does *anyone* have any ideas - either of what this is, or what to do about it? I really miss going for walks.

Help for Peripheral Neuropathy Pain?

Has anyone found any useful treatments of any kind to help with peripheral neuropathy? I had an EMG that came back normal. They're still thinking it could be small fiber neuropathy. I have an MRI scheduled, and there'll be a biopsy sometime after that. But I am in constant pain, which spikes to severe with pretty much any movement. Full legs, buttocks. Feet have been spared so far. But it's been spreading and getting worse for the last year. Gabapentin and ibuprofen are useless. I react badly to most new meds I try. Nortriptyline, starting with a super low dose is next to try. I don't have high hopes.

Finding the Right Exercise Routine for Hypermobile Folk

What are peoples thoughts on Pilates? My physio is super proud of my improvements and wants me to start Pilates. I have managed to commit to daily physio (takes about 5 minuets my routine) and hula hooping daily for 35 minuets (started at 30, increasing by 5 minuets every month until I get to an hour). There is a gym a 10 minuet walk away from me that does it twice a week, but I’ve read stuff online that the benefit for hyper mobile folk heavily falls on the trainer and their understanding of HSD/hEDS. However I did find a 20 minuet YouTube video on Pilates made for hyper mobile folk - so might up my hoop to 40 minuets and then add that 20 minuets of Pilates to it too to make an hour of exercise every day. What do people think? What do you guys do?

Connecting with others experiencing similar health issues

Hi - I am looking to connect with people experiencing similar health issues and receiving similar treatments.

Do Compression Socks Help You Sleep Better?

Does anyone wear compression socks when they sleep, and have you noticed a benefit if you do?

Service Dog for EDS/POTS: Helpful or Not?

Does anyone use a service dog for EDS/POTS? If so, have they been helpful?

Asking for Knee Braces and Finger Splints

Thinking of asking for knee braces and finger splints

Dealing with Chronic Pain and Allergies: My EDS/POTS/MCAS Journey

Hi everyone! I've been dealing with pain and weird allergies for most of my life, but very recently discovered I have the EDS/POTS/MCAS trifecta. Basically just dealing with lots of pain, dizziness, and too many allergies! I'm hoping to find a community and maybe some advice. 😊

Managing Endometriosis with Gastroparesis and EDS

Any endo warriors with Gastroparesis and EDS? Most of my endo is on my bowels and I’m scared to let my endo grow too much because of the wear and tear GP and EDS can cause on their own. How did you approach the situation?