Good news on the Physical Therapy front today! I had my last visit from this most recent round of PT today and I gained a 1/2 of a point in strength (on a 5 point scale) in a month! I started off at a 4-/5 4 weeks ago and today ended at a 4+/5 in leg strength in my right leg. Considering the massive damage done to my muscles over the years during surgeries 1-5, my therapist thinks this is as good as I’ll likely ever get. She’s thrilled I can now do 30 leg lifts in 3 sets of 10 without collapsing afterwards. Heck, I’m thrilled I can do that again. I had been stronger and as is the norm with RSD had lost some strength in the year since my last round of PT. But I’m now strong enough to move forward with the SCS trial!!
I must say, the PT I’ve done in the last 2 years has taught me how patients with RSD should do PT. I have a therapy team where everyone had seen a RSD patient at least once before, they’re all very willing to learn, and they know how to push someone just enough without pushing hard enough to start a massive flare. Prior to finding this team, I’d had therapists who had pushed me into epic flares. The one pushed me hard enough that I went from a cane to barely making it with a rollator- in under 2 sessions. It took me 3 months to get back to a cane from that run in. And I didn’t know enough about RSD at the time to say “NO!”
How did I luck out on this team? Simple. I skipped all the normal therapy centers. Instead, I signed up for outpatient therapy at the local rehab hospital. Since they work primarily with victims of major accidents or the very ill/elderly, they’re used to patients who aren’t going to leave their care ready to go run a marathon. Instead, they understand that making it through a small store with 1 crutch instead of 2 is a huge victory.
We did warm water PT exclusively in those first months following surgery #5, twice a week for 30 minutes. The pool there is- get this- 89 degrees F at all times. The air is in the mid to high 80’s as well, so patients don’t get chilled. And they have onsite shower facilities, in the same heated air, to get the chlorine off sensitive skin at the end. I have to say, the pool therapy has calmed down the allydonia and burning-specific pain more than anything else I’ve tried (aside from the Sympathetic Nerve Blocks). It keeps me capable of wearing tights and yoga pants, and even the occasional pair of very oversized, loose fitting khaki cargos, instead of just fleece PJ pants. I love that pool with a passion. Added bonus: I can’t walk on land, but I can walk laps, without holding on to the handrail, in that pool. :D
In the beginning they used the lift to get me into the water, which worked great as my leg was still very swollen and my knee barely bent. But after several months they were able to teach me to get in and out on my own using the stairs and handrail. It’s not smooth or sexy, but it sure gets the job done. Plus, knowing how to do that has allowed me to use other pools, such as the pool at the beach house this summer or the heated kids pool at the gym down the road. We started very slow and have built up, slowly, over the years. I even wear ankle weights now in the water! We also now do some land based exercises, as I’m considered strong enough to manage them. They tend to be more painful, but they work different things, so it’s a valuable tool to have in my pocket.
I have to say, I HIGHLY recommend Warm Water Physical Therapy with a very experienced team and a very warm pool for RSD patients. It’s been a life saver for me. Remember, though- slow, steady, and very turtle-like progress. And NO ICE!! (Ice can permanently worsen RSD by demyelinating the nerves in patients with RSD. Why it does so is unknown.)