Swimming for EDS and HSD

My daughter found out 4 yrs ago that she has EDS because of a sweet knowledgeable pediatrician she established her young son with. He sent my grandson (at 7) to a Geneticist and he was diagnosed with EDS along with his Mom (I never knew, nor did her Pediatricians or Family Physicians, growing up😥) Her younger daughter also has been diagnosed with EDS. Mom and children also have a few other not so nice syndromes that can sometimes also be present with EDS,(MCAS and dysautonomia). I feel so bad for them all, especially the children to have to start this journey at such a young age. 😥🙏❤️

I have central sensitivity, POTS & HSD. I actually never learned to swim… But a few years ago when I had finally found a PT who recognized central sensitivity syndrome, she referred me to “aqua therapy,” a form of physical therapy in a heated pool. Luckily, I’m treated at a medical center that offers it.

Unfortunately, the pool PT wasn’t as well-versed in central sensitivity, and I didn’t know at the time that I had POTS, though I had been diagnosed with small fiber neuropathy. For the first month of sessions, I felt sick—almost like flu-like symptoms. After sessions, I would feel dizzy, lightheaded, body aches, tingling in my legs and fatigued for days. Then it would get better, I’d have another aqua session and the same thing would happen. He didn’t understand what was going on, and neither did I because I didn’t know my pain conditions as well as I do now.

Finally, I reached out to my regular PT (who I had paused seeing while I was in aqua therapy), and I guess she recognized the potential triggers immediately: It was the classic “too much, too soon”—while the buoyancy of water helps, the resistance can make some things much more challenging, and even so the drastic change in environment was causing my nervous system to protest to try to protect me, because of the central sensitivity. And the pool was heated to “therapeutic” level, which was much warmer than a normal pool—the heat was exacerbating my small fiber neuropathy. Really it was my POTS, but we didn’t know it yet.

Finally, she gave him strict instructions not to keep me in the pool longer than the session, and shorter if needed. When I got out of the pool, I had to do it very slowly to allow my blood flow time to adjust. The number of repetitions of exercises had to be scaled much further back and increased slowly so my body/brain could adjust and minimize the post-exertion malaise.

My aqua PT, like many I’d seen before him, was confused because while I appeared strong enough to do what he asked, my body would still respond so strongly. Thankfully, they believed me.

Ultimately, aqua therapy was a game changer. I was able to teach my body in the water that core and lower body exercises done in the pool were safe, and do enough without severe flare-ups to get strong enough to do them out of the pool.

It was a huge help, but those first 4-5 weeks were really bad. I decided to share this because many with HSD/EDS also have POTS, fibro and central sensitivity that might create a situation where we’re more sensitive to a change in exercise program or environment. The pool is supposed to be so much more “gentle,” but like with anything it has its challenges and our bodies tend to respond strongly to change.

I blamed my body and myself for things going wrong. While the PT didn’t realize what was going wrong, it’s also their responsibility to listen to me and help keep me safe, and he didn’t take it seriously for a while. It makes me sad to remember that I blamed myself.

It’s a great idea to remind us it’s always best to speak with a physician before starting a program, but I did talk to my PCP. The only person who figured out the problem was my original PT, over a month later. I wish that more providers were aware of these conditions so we wouldn’t have to rely so much on luck, experimenting, intense research on our own and always advocating-advocating-advocating for ourselves. It’s been 8 weeks since I returned from the EDS Clinic and the waiting game and confusion with communication upon leaving and trying to continue my work-up has been frustrating, but I’m trying to be patient. I’ve now spoken to all of my specialists at home with what new information I have so far. None of them treat POTS, HSD, or fibromyalgia, including my PTs. I can’t find an OT who treats any of the above either. My rheumatologist and others have said it “falls out of their scope of practice.” It’s so disheartening.

That said, while I’ve still not learned to swim, the pool definitely helped me. The hard work was worth it, though there’s more to do.

I have central sensitivity, POTS & HSD. I actually never learned to swim… But a few years ago when I had finally found a PT who recognized central sensitivity syndrome, she referred me to “aqua therapy,” a form of physical therapy in a heated pool. Luckily, I’m treated at a medical center that offers it.

Unfortunately, the pool PT wasn’t as well-versed in central sensitivity, and I didn’t know at the time that I had POTS, though I had been diagnosed with small fiber neuropathy. For the first month of sessions, I felt sick—almost like flu-like symptoms. After sessions, I would feel dizzy, lightheaded, body aches, tingling in my legs and fatigued for days. Then it would get better, I’d have another aqua session and the same thing would happen. He didn’t understand what was going on, and neither did I because I didn’t know my pain conditions as well as I do now.

Finally, I reached out to my regular PT (who I had paused seeing while I was in aqua therapy), and I guess she recognized the potential triggers immediately: It was the classic “too much, too soon”—while the buoyancy of water helps, the resistance can make some things much more challenging, and even so the drastic change in environment was causing my nervous system to protest to try to protect me, because of the central sensitivity. And the pool was heated to “therapeutic” level, which was much warmer than a normal pool—the heat was exacerbating my small fiber neuropathy. Really it was my POTS, but we didn’t know it yet.

Finally, she gave him strict instructions not to keep me in the pool longer than the session, and shorter if needed. When I got out of the pool, I had to do it very slowly to allow my blood flow time to adjust. The number of repetitions of exercises had to be scaled much further back and increased slowly so my body/brain could adjust and minimize the post-exertion malaise.

My aqua PT, like many I’d seen before him, was confused because while I appeared strong enough to do what he asked, my body would still respond so strongly. Thankfully, they believed me.

Ultimately, aqua therapy was a game changer. I was able to teach my body in the water that core and lower body exercises done in the pool were safe, and do enough without severe flare-ups to get strong enough to do them out of the pool.

It was a huge help, but those first 4-5 weeks were really bad. I decided to share this because many with HSD/EDS also have POTS, fibro and central sensitivity that might create a situation where we’re more sensitive to a change in exercise program or environment. The pool is supposed to be so much more “gentle,” but like with anything it has its challenges and our bodies tend to respond strongly to change.

I blamed my body and myself for things going wrong. While the PT didn’t realize what was going wrong, it’s also their responsibility to listen to me and help keep me safe, and he didn’t take it seriously for a while. It makes me sad to remember that I blamed myself.

It’s a great idea to remind us it’s always best to speak with a physician before starting a program, but I did talk to my PCP. The only person who figured out the problem was my original PT, over a month later. I wish that more providers were aware of these conditions so we wouldn’t have to rely so much on luck, experimenting, intense research on our own and always advocating-advocating-advocating for ourselves. It’s been 8 weeks since I returned from the EDS Clinic and the waiting game and confusion with communication upon leaving and trying to continue my work-up has been frustrating, but I’m trying to be patient. I’ve now spoken to all of my specialists at home with what new information I have so far. None of them treat POTS, HSD, or fibromyalgia, including my PTs. I can’t find an OT who treats any of the above either. My rheumatologist and others have said it “falls out of their scope of practice.” It’s so disheartening.

That said, while I’ve still not learned to swim, the pool definitely helped me. The hard work was worth it, though there’s more to do.

I have central sensitivity, POTS & HSD. I actually never learned to swim… But a few years ago when I had finally found a PT who recognized central sensitivity syndrome, she referred me to “aqua therapy,” a form of physical therapy in a heated pool. Luckily, I’m treated at a medical center that offers it.

Unfortunately, the pool PT wasn’t as well-versed in central sensitivity, and I didn’t know at the time that I had POTS, though I had been diagnosed with small fiber neuropathy. For the first month of sessions, I felt sick—almost like flu-like symptoms. After sessions, I would feel dizzy, lightheaded, body aches, tingling in my legs and fatigued for days. Then it would get better, I’d have another aqua session and the same thing would happen. He didn’t understand what was going on, and neither did I because I didn’t know my pain conditions as well as I do now.

Finally, I reached out to my regular PT (who I had paused seeing while I was in aqua therapy), and I guess she recognized the potential triggers immediately: It was the classic “too much, too soon”—while the buoyancy of water helps, the resistance can make some things much more challenging, and even so the drastic change in environment was causing my nervous system to protest to try to protect me, because of the central sensitivity. And the pool was heated to “therapeutic” level, which was much warmer than a normal pool—the heat was exacerbating my small fiber neuropathy. Really it was my POTS, but we didn’t know it yet.

Finally, she gave him strict instructions not to keep me in the pool longer than the session, and shorter if needed. When I got out of the pool, I had to do it very slowly to allow my blood flow time to adjust. The number of repetitions of exercises had to be scaled much further back and increased slowly so my body/brain could adjust and minimize the post-exertion malaise.

My aqua PT, like many I’d seen before him, was confused because while I appeared strong enough to do what he asked, my body would still respond so strongly. Thankfully, they believed me.

Ultimately, aqua therapy was a game changer. I was able to teach my body in the water that core and lower body exercises done in the pool were safe, and do enough without severe flare-ups to get strong enough to do them out of the pool.

It was a huge help, but those first 4-5 weeks were really bad. I decided to share this because many with HSD/EDS also have POTS, fibro and central sensitivity that might create a situation where we’re more sensitive to a change in exercise program or environment. The pool is supposed to be so much more “gentle,” but like with anything it has its challenges and our bodies tend to respond strongly to change.

I blamed my body and myself for things going wrong. While the PT didn’t realize what was going wrong, it’s also their responsibility to listen to me and help keep me safe, and he didn’t take it seriously for a while. It makes me sad to remember that I blamed myself.

It’s a great idea to remind us it’s always best to speak with a physician before starting a program, but I did talk to my PCP. The only person who figured out the problem was my original PT, over a month later. I wish that more providers were aware of these conditions so we wouldn’t have to rely so much on luck, experimenting, intense research on our own and always advocating-advocating-advocating for ourselves. It’s been 8 weeks since I returned from the EDS Clinic and the waiting game and confusion with communication upon leaving and trying to continue my work-up has been frustrating, but I’m trying to be patient. I’ve now spoken to all of my specialists at home with what new information I have so far. None of them treat POTS, HSD, or fibromyalgia, including my PTs. I can’t find an OT who treats any of the above either. My rheumatologist and others have said it “falls out of their scope of practice.” It’s so disheartening.

That said, while I’ve still not learned to swim, the pool definitely helped me. The hard work was worth it, though there’s more to do.

Oh wow this is so great to finally read. I have not been completely diagnosed but after 16 1/2 years of chronic pain I’m getting closer. I have HSD but it’s like pulling teeth to get a practitioner to say it. My PCP said I had a connective tissue disorder and sent me to a Rhemy - he said I didn’t have Lupus but was hyper mobile. And sent me on my way. My PT s are totally supportive but say there is really nothing to be done expect stability exercises. It’s been such a long road and such a painful one that I am filled with tears writing this. Everyone, and I mean everyone in my life has had a diagnosis and wondered why I just didn’t get well. It wasn’t until my daughters classmate in Grad school alerted me to EDS as she did her thesis on it that I even know it existed. None of my myriad docs and therapists have used the words hEDS, EDS or HSD until I did . God I am behind frustrated and don’t even know what I should be doing next! Thanks for posting- it’s also the first post I’ve seen on this platform???

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.

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.