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494d
Raise your hand if you’ve been given a PT referral to trivialize your symptoms 👋👋👋🙄 (trust me I work in ortho, it happens to patients every day) So has anyone found any alternatives to standard physical therapy that cater more to hEDS?! The strengthening exercises I’ve been given either don’t help or hurt. They only address a few body parts, although all of my joints feel unstable and/or weak. Yet pain continues to fluctuate and flare throughout my body. I don’t have time for regular PT appointments and I’m not motivated to do mundane home exercises that don’t make me feel better. I’m open to any form of specialized therapies, exercise routines, manipulations, meds/supplements, diet changes, other remedies that you recommend!! I will try literally anything. Please help me by sharing what’s helped you 🙏🙏
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Generalized pain
Ehlers-Danlos Syndrome (EDS)
Physical Therapy
Hypermobility Syndromes
Chronic Pain
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490d
Routine iv hydration has helped me so much and swimming has been my go to way to exercise
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I haven’t found any pt that helps it all just makes my body hurt worse but you have to jump through hoops for the insurance
492d
Honestly if you have the facilities near you, look into aquatic therapy!! Way less painful but still very strengthening due to natural water resistance.
Oh I didn't even realise that's what was happening honestly I was sent to physio but haven't heard back in like 3 years lol medical trauma means I'm not likely to chase it!
493d
Pt has only ever helped me with surgery recovery, none of the other/chronic stuff
Alexander Technique could be helpful for understanding posture and Qi Gong helps with reducing falls and injuries, if the pain continues maybe a Rheumatologist could look further into why that is.
If you’re not in ‘ehlers danlos syndrome and the cusack protocol’ group on Facebook you should join. There’s a whole supplements/vitamins plan that helps all aspects of EDS and there’s supplements on there that can help CFS.
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I’m about to start PT for my ankle, I have never had a good experience with PT, it always makes the pain worse. I’m trying a new place so fingers crossed they have some EDS knowledge.
I have an eds specialist physio who is really good at working with me.
@Teal100 I would also recommend if physio exercise aren't your thing like adaptive sports or activities. I have definitely had physio used to dismis me before but luckily not for a long time.
☝ 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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