Hi

I'm still coming to grips (ha) with my recent EDS diagnoses & the changes in my body over the past couple years.

I'm being treated for chronic pain & walking with a cane right now. Physical therapy hasn't really helped build muscle. I've missed a lot of work.

Maybe I'm still in a denial stage. Does hEDS usually become disabling? Is that something I need to face the facts about?

I didn't have any trouble until I was in my late-30s.

I'm still kind of bewildered about this whole thing.

I wish I knew. My guess is that every case is unique. What I have observed, unfortunately, is that what has broken down seldom can be reversed for long.

It's really individual...but it's progressive in the sense that our connective tissues are stretching out because we don't have that elasticity to make them come back.

I began having problems when I was nine...and PT on land hasn't helped much so we're taking it to the water!!!!

You'll find...some people hardly have any issues with their EDS (like my sister) and there are the people in the middle...and there are some who can't walk at all. I have a lot of problems from my EDS and my state considers me to have severe disability from it. It depends on the severity of your individual case.

Sorry I/We can't be of better help but from what I have just read (did a quick search) there really doesn't seem to be any way to tell.

I am not sure where you live, but I did come across a research program in DC - in the Washington DC are the NIH is doing a research program into EDS and may be able to help you (they are on the internet) - http://www.grc.nia.nih.gov/studies/ctd.htm

Me too...

Thanks. I guess I am wanting a crystal ball haha.

I'm donating my blood for that study. I guess I am too run-of-the-mill to be picked to go there.

Boy are my joints making popping noises this week.

I really want to do the longitudinal part of the study...I saw Dr. Francomano and she said I'm nothing short of interesting...

...seriously...not many people with HEDS and CEDS have my degree of eye involvement...

Thanks hockeyhound. I'm not sure if I can be that patient hahaha. Pun intended.

I probably is worth it, though. My mom has been going to PT for 4 years now. Recently she told me that what got her started was fear of ending up in a wheelchair (which she says was a real possibility at the time), and these days she's not only mostly pain-free, but also has regained energy and has been back working part-time as a pharmacist for a few years now.

Best part? We didn't even know we had EDS until April this year. Her PT now worked out a more joint-friendly program for her, and she seemed very happy about the changes.

Caveat: We don't know what type of EDS we have yet, and it's probably not hypermobile (or, if it is, mild/moderate), so YMMV.

Anyway, I know I would have given up on PT by now (I have to work through some levels of pain, but I'm getting better at not overdoing it) if it wasn't for my mother. She is living proof to me that persistence can be worth it, and her experience keeps me going.

PT never worked for me, I think the hypothesis that it will strengthen muscles to stabilize joints is overrated. Because our connective tissues are weak that goes over to our muscles as well. My first time in PT was before the HEDS diagnosis and my P therapist was shocked at my lack of building muscle over time. The length of the therapy kept being extended.

Like said theres no typical progression, each case is so personal and things you did in your life affect it as well. I'm positive some of my choices in the past have caused me to be much worse now than I possibly would be.

Ditto

Nutrition could be a factor in how well PT works, beyond the obvious of getting enough fuel before and after exercise. For example, it's often said that many people with EDS have trouble absorbing nutrients. Vitamin D (take the D3 form, please) and calcium are important for muscle. Exercise has helped me much more in recent years, which might be by way of better nutrition.

Thanks -- I am pretty woo woo so I will check out Feldenkrais -- I've never heard of it.

Tomorrow I start PT in the pool, which is new for me. I had to buy a bathing suit this weekend, for the first time in almost 20 years. That was horrifying. hahahaha

I had trigger point injections a couple weeks ago and that really really helped with my pain level. Most of my pain is from spasming muscles/knots.

I know that over the years, i have had more problems...definitely more pain. I started with pain in my early teens and it went on from there, the dislocations increased as well. I found that PT has been a huge help to me as well as avoiding activities that aggrivate my joints. Sunny