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.