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Swimming for EDS and HSD Jul 12, 2023 | By gimblogger09 (@gimblogger09)Comment receiving replies
Thank-you. I do have supportive PT and recently another specialty PT . My problems started in 2007 with a shattered Femoral head. When 2 yrs later I was In so much pain I wanted to drive
Off a cliff I was diagnosed by my surgeon with CRPS. I so wanted a diagnosis that had a remedy that I went through every therapy, drug and PT to get well which never happened- my very convoluted long story progressed when I received a TKR on Dec 2021. During the rehab of that a leg length decrepency and re-education of
Muscle function made
Me believe that finally I was going to get better- the gist
Of it all being I’d been walking with a collapsed gait that was causing everything to malfunction and cause pain. But throughout this I also believed it was something in the soft tissue - or more accurately the connective tissue. When I was introduced to hEDS it just explained me way too well. BUT here is the dilemma - what other problems are involved. My back perhaps? My pain is so Dynamic. But last November was the straw that had made everything so much worse. I woke up and my other leg had a pain in the groin area. I have not been able to fix this and walking hurts. I really feel like I lost all hope and acceptance is all I have but it is so difficult to live in so much pain. And do I need a diagnosis?? What are your thoughts on that? My new PT , who has her own issues, says I probably have an undiagnosed connective tissue issue that will never be named! I guess I just accept this? Idk what my next step should be. I just went to a new Physitrist who is going to inject my back. After that there is nothing else to do.
I am on the EDS wedsite , but it is not interactive like this so - I am open to try anything. I’ve found that at least that gives me a little hope which is a beautiful thing. I am in Northern California- close to Reno Nevada, Sacramento and 3 hours to San Francisco.
Replies to "Thank-you. I do have supportive PT and recently another specialty PT . My problems started in..."
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
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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