The neurologist who diagnosed me offered me the chance to participate in a case study to test the efficacy of what he called a vibro-acoustic chair. You put it on your chair and then lie your back on it which lets you feel the soothing vibrations. As a little side feature the chair also plays music in time with the vibrations. There was a more energetic mode for mornings and a more relaxing mode to be used before bed. The music didn't really accomplish anything and I didn't expect it to, but the vibrations helped undo the knots in my back and aids me in falling asleep. The chair had already been tested and deemed effective in the treatment of a similar condition known as fibromyalgia. This made them want to compare the results to those in people with Ehlers-Danlos Syndrome (AKA me.)
The same neurologist refereed me to a physiotherapist who sort of specializes in managing EDS. He has 16 other patients with EDS all with varying types and severity. (He claims I'm on the severe side but he's seen worse.) He told me one hopeful story of a girl with EDS who was out of school for 4 years because she was plagued with horrible fatigue and pain. This is a similar situation to the one I'm in, and eventually her fatigue symptoms simply worked themselves out. We got to work right away on strengthening the muscles that surround my joints. My joints would never be able to stabilize themselves, so the most effective method is simply getting your other muscles to do the extra work. Trouble is, this causes the muscles to be very tight so he also pressed on many trigger points to help solve that even just a little bit. I have to say this is one of the most painful things I have had to go through. The muscles are always so tight that they're pressing on all kinds of nerves and so when he pushes on my shoulder the pain radiates all the way into my head like a splitting headache.
We tested my walking ability to give us a point of reference for improvements in the future. I had a horrible stumbling gait and heavily leaned on one side, but it didn't stay that way for long. Week by week we documented my progress and now my gait has normalized except during localized pain spikes. It wasn't just during appointments that I did physiotherapy, it was something I worked on every day. Eventually I progressed to the point where my physiotherapist decided we should no longer focus on joint strengthening and should instead simply do our best to manage whatever symptoms pop up. This means entire appointments are now dedicated to pushing trigger points on my shoulder which still pops out (subluxates) constantly. Once my family got a pool in our backyard I was encouraged to swim as much as possible since this type of exercise is very easy on the joints. My legs were too bad to do effective kicks so I pretty much stuck exclusively to breast-stroke and back-stroke. I would never stop swimming because of muscle fatigue, it was always the increasing levels of pain that stopped me. Meanwhile I couldn't get the idea of my Tarlov cysts growing and causing future problems out of my head. It would be even worse if I forgot about this though because it might one day explain new symptoms that could pop up if it grew.
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