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 🙏🙏

Generalized pain

Ehlers-Danlos Syndrome (EDS)

Physical Therapy

Hypermobility Syndromes

Chronic Pain

View all
  • Teal100


    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.

  • Pfeiffer


    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.

  • Bananachunkyboy


    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.

  • mthebrave


    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.

  • MJ17


    Pt has only ever helped me with surgery recovery, none of the other/chronic stuff

  • Mollyisme33


    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!

  • agentleanbean


    Honestly if you have the facilities near you, look into aquatic therapy!! Way less painful but still very strengthening due to natural water resistance.

  • LaurenRomero


    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

  • Doglover25006


    Routine iv hydration has helped me so much and swimming has been my go to way to exercise

☝ 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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