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24 Things People With EDS Wish They Knew Before Starting Physiotherapy

Many people with Ehlers-Danlos syndrome (EDS) partake in physiotherapy (often referred to as “physio,” also called physical therapy) to help preserve their joints and strengthen muscles. A good physiotherapist should be familiar with your condition and, because everyone experiences EDS differently, modify activity during each session according to your body’s specific needs. Although some people have had negative experiences due to untrained therapists, physiotherapy has been a helpful tool for many.

In partnership with the Ehlers-Danlos Society, we asked their community and our Mighty community what they wish they, or others, knew before starting physio. You may have to try out a few different therapists before finding one you click with, and the progress can often be slow, but many of those with EDS have found it to be worth the effort. Here’s their advice for those beginning their own physio treatment. 

Here’s what the communities told us:

1. “I’ve had positive experiences with physio. It’s helped improve my mobility hugely. I seem to respond very well but consistency is key and you need to put in the work. It’s not easy, but the results are worth the effort. If one physio isn’t working for you, ask to see someone else.”

2. “My PT expressed an understanding of my condition from day one. The key was to alter the exercises according to my body’s response. This required full, honest feedback with each exercise. He provided me with several alternate exercise routines to suit how my body was doing each day. Proper PT routines will help control pain. Help – not eliminate.”

3. “The best bit of advice mine gave me was that 1. I was pushing into pain too hard and 2. Muscular pain is OK during exercises, but joint pain isn’t! I’ve also learned that physiotherapy is a lifetime commitment, and key to the management of hEDS.”

4. “Some people just don’t click, and that’s OK. Your therapist is part of your intimate health care team, and you’re going to be seeing a lot of each other. If you don’t get on well, for whatever reason, find a new one.”

5. “I wish I knew to keep searching for a good physical therapist after the first one gave up on me after three months and told me I couldn’t be helped. After four years, I finally tried PT again with someone who’s familiar with EDS and I’ve never felt better!”

6. “It is essential that the plan for therapy and exercise are set up specifically for you with the knowledge of your specific presentation of symptoms in mind.”

7. “Communication. Know it’s OK – in fact, it’s required for your safety – to say ‘no’ or ‘that’s too far’ or, my favorite, ‘that makes me nervous.’ Giving your therapist info and asking for what you need is crucial. The therapist’s ability to listen, learn and adapt is obviously key as well.”

8. “My DPT has become my lifesaver. He understands so much about EDS because he has taken the time to do his research and ensure I can strengthen without injury. Any good physiotherapist is going to do this for you.”

9. “Find a physiotherapist who can treat your body as a whole, not just one joint at a time. I see a specialist physio who treats my whole body and said if you treat only one problem, then overall it won’t help.”

10. “EDS expresses itself differently in each individual. So any treatment has to be tailor-made just for you! No off the shelf options.”

11. “Don’t let other people’s opinions discourage you! Be sure to talk with your physiotherapist about your EDS and make sure he/she is well informed about what it is, otherwise search for another one – but do not give up on physiotherapy.”

12. “We learned that manual physical therapy was a better fit for our daughter. Our PT does 50 percent or more hands-on work to get things in the right place. It is only after she feels things are in the right place that she has worked on slowly building up the muscle in her body to support her joints.”

13. “Be honest with your therapist! Some days I can’t do it. Some days I can. I am always honest with him about how I’m feeling. Otherwise I hurt myself.”

14. “EDS takes longer in PT than others. I take longer to recover. I have to remind myself when I see others come and go and make more progress that my journey is mine and mine alone.”

15. “It’s not really about the goals you may set, but about maintaining movement and improving pain and strength. Even if that means you only do three reps of two exercises for six months. Something is better than nothing, and don’t let it discourage you! You’re doing amazing at just keeping that up.”

16. “I am a Zebra and also PT. Being trained in Australia I know a lot of manual therapy. That is, together with physical agents, the best kind of treatment. I know how much any kind of movement hurts, so passive ROM, manual therapy, iontophoresis and other electrotherapy is the best.”

17. “Pace yourself. Don’t let the therapist increase repetitions and/or weight or time if you don’t feel ready. Take things slow. The concept ‘no pain no gain’ does not apply to EDS patients.”

18. “Even with a good therapist, be prepared. Bring your mobility aids with you, set up a rest area, heating pads, ice packs, essential oils, snacks – whatever you need to recover.”

19. “For the children with EDS, don’t underestimate the power of fun! Think outside the box. There are many ways to get good exercise and have a great time. If the exercise is fun (water and equine therapies are great alternatives to traditional PT), it is much more likely to be continued and efficiently performed.”

20. “For me, what’s worked best is seeing a DO (Doctor of Osteopathic Medicine, a full medical doctor, just like an MD) regularly for OMT (osteopathic manipulative treatment), and doing a regular home workout routine. Everyone’s different, so it’s important to find what works for you.”

21. “Biggest thing I wish we had known when I started is that heat helps me more than ice. My physiotherapist uses a hot stone now to do manual work as well as heat packs to get my muscles to relax. She also does a lot of stretching where she is in control to keep my joints in a normal range of motion. And if I’m having a bad day physically, we don’t do exercises.”

22. “Exercises alone won’t help, I need joints manipulated back in place all the time in my neck, spine, pelvis and anywhere else. Once they feel better I can attempt to strengthen things up.”

23. “It’s not a quick fix. What works for many will not work for me, and it takes much longer for my therapy to be effective than someone who doesn’t have hEDS. It’s something I will have to do for life as my joints will never be ‘fixed.’ It’s best to find a physiotherapist who has had experience in treating EDS patients for those precise reasons, as well as to listen to what it is your body is telling you when you’re doing your exercises.”

24. “It’s gonna be a windy road! And it will take a while. Progress may be slow (even glacial at times!). Remember you are worth the investment.”

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