I'm working on a diagnosis of EDS, and thankfully only some of my joints dislocate, but I totally understand your frustration. I have had to tailor my workouts through trial and error. Swimming is okay for me however I don't use my legs when swimming laps. Thankfully the surgery to tighten my shoulders worked well so it doesn't hurt my shoulders. Can you walk? Walk in the pool? All the medical staff I've dealt with have said that anything I can do is good. It's taken a lot of time and pain to figure out what works best for me. I'm still trying to figure out what strength training works for me without causing a lot of pain. I wish you luck in trying to figure things out. It's not easy and often hurts a lot, but knowing that I can do anything helps me mentally almost more than physically.
5/15/13 12:08 P
I just read your message regarding exercising. I understand your frustration. Before my diagnosis I went to the gym almost everyday. And each of those days a new and wonderful injury would pop up or in my case a joint would pop out. I was eventually diagnosed after years of constant issues with pain and subluxations and dislocations. By that point I had not gone to the gym in almost 6 months and the hard to lose 80 pounds came right back on. I still don't go to the gym and my EDS is progressing but I have found that strength training with physical therapy bands very beneficial. If you ask your doctor for a physical therapy referral they can instruct you on the proper use and techniques. Good luck.
Fitness Minutes: (550)
4/8/13 7:57 A
It's very frustrating, it could take 6 months plus to get the referral to the expert sorted....
Chair exercises sound interesting!
4/8/13 6:30 A
Because of your medical conditions, it would be unsafe for us to speculate about what kind of exercise would be safe for you. It's great that you're going to see an expert, and I would wait to get their advice before starting any kind of exercise routine.
Look for chair exercises to do. It may seem like a slow start but they do work and you won't get overheated.
Fitness Minutes: (550)
4/8/13 4:50 A
I'm 26, I've just started changing my food intake to try to lose 44lbs to reach my goal weight and be healthier.... my problem with gaining weight has been the loss of mobility due to having worsening Ehlers Danlos Syndrome, Dysautonomia and idiopathic Angioedema (like that anaphylactic shock people who're allergic to peanuts get, but mine is triggered by heat and stress!).... basically my joints all dislocate and I am hyper flexible (in a bad way)... I'm exercise intolerant due to the blood pressure issues involved in the dysautonomia, and getting too hot makes my face swell like a baboon's bum!!! I walk v small distances with crutches due to the EDS. I have chronic pain and my joints are all falling to bits..
I'm totally stuck as to how to get some exercise into my regime :( I've had several flummoxed physios (one of whom broke me!) and I'm waiting to see an expert, which may be a while.... I did do yoga but I overstretch and it's not good for my ligaments apparently..... (!!!!!!)
Should I just stop trying?! I need something really light ...but not over stretchy either.... swimming knocks my left hip out of socket.... GAH?!!
Thanks for reading, I totally understand if no one can think of anything hehe.
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