Swimming for EDS and HSD

The groin pain and walking issues began my intro into my hEDS. Finally found out it was coming from a hyper mobile SIJoint extending to meet unequal leg lengths created from a hip ball joint replacement. Walking around for 4 years with that created damage in the other hip ... It also stretched the Illiopsis ligament that connects the back to the pelvis. The fix was prolotherapy that tightened the loose ligament and keeps the SI Joint mostly in place. I say mostly because it does still move slightly out of place but a knee to the chest realligns the joint. I will also add that the ligament was totally tight before it overstretched. Lying along the side of the bed and dropping the leg will stretch that ligament.
Hope you find help ... Regenerative Medicine is one place to try

Sorry -
I keep thinking of more things I should say.
I am getting an MRI to look at hip and a possible Labrum tear. I was wondering if you had one and what it revealed- if
You care to share.

Sorry -
I keep thinking of more things I should say.
I am getting an MRI to look at hip and a possible Labrum tear. I was wondering if you had one and what it revealed- if
You care to share.

The thing about labral tears is that a good proportion of people (with it without underlying conditions) are walking around with labral tears, but it doesn’t cause symptoms, so it’s very hard to isolate if a labral tear is the cause of the pain of not… And the treatment is either surgery or physical therapy anyway.

So frustrating to untangle things, isn’t it? =/

I’m curious if you got relief from PT . I seem to have gotten some after a shot and thought I wa on the mend. And after massage and Pt ultrasound sometimes. But it’s been since Nov and still has not gone AWAY . I really need to be able to walk.

Thank you for sharing.

I learned from my care team that pain can change. While we might always need to live with some level of pain, it doesn't always have to be so severe or limiting. But one mistake with chronic pain is that it's easy for us to look for something physical to "fix," but chronic pain is different than acute pain such as a broken arm. With a broken arm, you can ideally address the fracture and in time, hopefully the pain goes away. But chronic pain is different--it's usually systemic, like in hypermobility. And/or it involves insistent pain signals in the nervous system that keeps the pain cycle going, sometimes even if you do address physical causes. I don't want to get stuck in the weeds of chronic pain, but that was one major thing I learned that helped me decide on my next steps >_<

Do you think you want to look more into hypermobility as a potential diagnosis? Could that be an option? If so, maybe you could look for a physician or physical therapist in your area who has experience with hypermobility. The EDS Society has a provider finder here: https://www.ehlers-danlos.com/healthcare-professionals-directory/

The thing is, it can be really difficult to find a phyiscian; the wait could be really long. In my experience, it can be more direct to find a physical therapist. You might get more information and potentially more relief, more quickly by doing a consultation with a PT well-versed in hypermobility. Even if it's short-term, if you could get information and guidance to bring to your own PTs, that could help.

Even before I was diagnosed, PT was always my preference because regardless of a certain diagnosis, they could look at what I'm experiencing right now and help come up with a plan to improve my function. If you feel confident your medical team has ruled out conditions that would be more life threatening, it's been my experience that I didn't have to have a formal diagnosis. I was always less interested in the label, only because I wanted relief and improvement in function more. But that's just me...and knowing that if I had done nothing else except chase doctors in the 3 years it took to get my first diagnosis of inflammatory arthritis, that would have been a long time in pain potentially not making much progress or feeling frozen.

There are also a TON of online resources for hEDS and HSD. It's not that I'm saying not to listen to your doctors or forgo medical treatment or anything like that, but sadly a lot of us have to DIY pain management because of the shortage of providers or other barriers to access.

I wouldn't say there's "nothing to be done" (that is one of my least favorite phrases relating to chronic pain) except stability exercises. That's one intervention of many, but I would agree PT has been the foundation of pain management for hypermobility for me. PT is the #1 thing that's had the biggest impact on my pain and quality of life, but it has to be appropriate for hypermobility--if it's not, it can hurt more than it can heal (which has also happened to me too many times, sigh).

One other thing that really helped me was patient education and research--learning about chronic pain as a symptom of a stressed out nervous system and why hypermobility causes pain, fatigue, etc., why PT and other strategies help, and what type of PT is safest and most effective, all helped me gave me hope and ideas for what I might be able to do on my own and with support from the right care team.

Maybe learning more about things that can help might keep you hopeful and give you some ideas on how to move forward?

I found this physiotherapist (in the UK I think?) with a YouTube channel and blog that had a lot of brief educational videos, along with examples or exercises if it might give a starting point: https://www.youtube.com/@JeannieDiBonHypermobility/streams

Excellent summary of treating HSD/EDS-related chronic pain! I believe that pain must be treated from a Biopsychosocial approach; focused on integrative care of the biological, psychological, and social aspects of each patient.

Unfortunately, our current medical system is not designed to do this. Some advanced providers are making inroads to integrative care, but there are many hurdles to overcome. I have chronic pain related to EDS/HSD and found that managing my care team is essential to functioning my best. Learning to ask questions, and advocating for my needs has been an ongoing challenge. But, I have to be accountable for my health and that means risking feeling uncomfortable and asking for what I need.

It also means doing my own research/reading about what approaches are best for me. At some level, it doesn't seem fair to have to do all the legwork for the medical system. We've been trained to expect our medical providers to know exactly what's wrong, have a plan to fix it, and have said plan be successful... the quicker the better! But, my life experiences have not been like this. Fair or not, I'm responsible for my health and searching out knowledgeable providers.

As a patient and a healthcare educator/provider, I've tried to use my feelings of frustration and unfairness to motivate me to help myself and others. Trust me, I still have these feelings and struggle to manage them like everyone else. I reach out for support, use appropriate exercises, and practice effective psychological coping strategies... then, pick myself up and dust myself off to live to fight another day.

Hang in there folks, I believe we can do this!

A.J. Steele, PsyD, LCADC, TPS

I’m curious if you got relief from PT . I seem to have gotten some after a shot and thought I wa on the mend. And after massage and Pt ultrasound sometimes. But it’s been since Nov and still has not gone AWAY . I really need to be able to walk.