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I'm new. I'm not sure how this works but I've been struggling to get my life on track. I'm struggling finding the right people to talk to that can help me. I know I need to get a good exercise routine or even just a day to day routine. But some days I'm in so much pain, stuck running to the loo or just so unmotivated to do anything. I can't say I will do this activity on this day at this time because I can't rely on my body, I am a wheelchair user for long walks and walker or walking stick userfor short distances. I feel very alone. My doctors don't understand EDS and I feel very unsupported because of that. I have amazing family and friends who do what they can to help but I'm not getting anywhere. I just turned 30 me and my husband want to start a family soon but it just feels so out of reach. I would really like to talk to someone who is or has been made quite disabled by EDS. What can I do?
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Ehlers-Danlos Syndrome (EDS)
Chronic Pain
Hypermobility Syndromes
Pain
Generalized pain
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For me personally I found physical therapy to be very helpful in this regard. I was using a wheelchair often. I started with once a week, he would give me easy strength building exercises and supervise to make sure I was doing right and that it wouldn’t hurt. I’m now up to every 3 weeks and feel more confident doing exercises without supervision. Most of the exercises I do are with resistance bands or isometrics. Feel free to message me if you ever need someone to talk to.
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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