The exercises that have saved my joints.
Last January, after getting my official diagnosis from a geneticist in Baltimore, I was referred to Kathleen and Kevin Muldowney in RI. They run a physical therapy practice, and have become the east coast's EDS gurus. In fact, Kevin Muldowney has published a book called Living Life to the Fullest With Ehlers-Danlos Syndrome. I promptly bought the book and made an appointment with Kathleen Muldowney.
Note: traveling long distances is one of my worst MCAS triggers and messes up my joints. So, the fact that I've now gone twice to see her in RI is a testament to her value.
Kathleen herself is kind, sweet, and supportive -- surprisingly uncommon attributes in some of the specialists I've seen. She spent over an hour with my mom and me, and was patient with our millions of questions. She keeps a book of suggestions from EDS patients, so that when a patient from anywhere in the country needs a primary, a local PT, a GI specialist... she can look up what others in that area recommended and help each person connect their own dots. She beautifully balanced affirming my pain was real, while also reassuring me that she's seen worse and she has hope for me to improve. She is also open to communicating via email, recognizing that many patients live too far away for frequent visits.
All in all, she's one of my favorites of the people on my care team. Anyway, she started by doing the basic Beighton test to double-check that I have hEDS. After spending a quarter of a century without a diagnosis, it gave me a thrill to hear it confirmed again. She then assessed every inch of my body, to figure out where my specific problem spots are. It was amazing to me, how many places I could feel something was off -- but it had been so long that I'd just forgotten about it -- until she put it back into place and I remembered what it was like to not have pain there! She asked if my vertebrae ever rotate. I laughed and said "I don't think so!" She checked if I have back pain (always) and decided we should take a look just in case. Lo and behold, many of my vertebrae were rotated, although not all in the same directions. She moved ribs, shoulders, hips... more importantly, she showed how to fix things myself and had my mom record it on my phone. I learned to tape my shoulders and how to put my SI joint back into place (as an aside -- it turned out that a lot of my "low back" pain was actually my sacrum moving around).
By the end of the visit, I was more pain-free than I'd been in years, although I ruined it by driving 4 hours home. Once home, I found an EDS-aware PT and began working through the book. The protocol works one section of the body at a time, aligning and then strengthening the joint(s) involved. Once that section is stable, you move on. The theory is that strategically tightening muscles around a joint can stabilize it, even when the ligaments are permanently damaged. It has instructions for the patient, but also the PT, just in case there aren't EDS-friendly PT's in your area.
So, one year and four months later... I FINISHED!! I definitely still have pain, but my joints rarely pop anymore and move around far less. I have enough stability, now, that I can start biking (for 20 mins only on low settings on a recumbent bike indoors :-P), and can think about activities involving lifting, jumping, twisting, etc, although it's usually still not a great idea.
The protocol itself felt pretty ridiculous at times; it gives alternative poses for almost every exercise, assuming that most EDS patients will have pain in one pose or another. It also moves so incrementally sslllooowwwlllyyyy I thought I was going to lose it. I used to work out in the gym 3-5 times a week, played rugby, and generally felt pretty buff (for my size). So, being told I had to start with one pound dumbells (literally, no joke), made it really difficult to feel good about myself. Every now and then I'd decide "my EDS isn't that severe, and I'm pretty strong/athletic, so I can handle more than this." I'd then skip a chapter or two, start using heavier weights, etc. For a couple of days I'd feel great, like I was progressing and closer to the "me" that I used to be... until on day 3 or 4 I'd, without fail, get hurt. These setbacks made it so much harder to progress, but I just couldn't believe how weak I'd become in a year of inactivity after damaging my joints. So I'd do it again.
I am now proud to announce that I can arm curl 5 lb weights and step up a full 8" step. I may have been curling 15-20lbs in college, and at my peak was squatting 150 lbs, but I now feel confident in my ability to work out without getting hurt. And when something pops out, I know how to put it back.
It has not been easy, though. I've had to work out 45-90 mins every day. This obviously doesn't always work out; some days I'm too busy, or far too fatigued, or feeling too sick. A few times I've tried to fight through the fatigue and I actually fell asleep mid-exercise. My partner came home an hour or so later and found me face-down on the wood floor, limbs twisted under me, still trying to cling to a 3 lb weight. Waking up from that was a painful experience. But the point is, I've really worked hard and it has paid off. The maintenance stage, which will last the rest of my life, is difficult. When I get sick for a week, I instantly lose strength and have to work twice as hard to get it back. Twice a week I work my SIJ/hips/core, twice a week I work my upper-extremities, and twice a week I work the lower-extremities + bike 20 mins. Considering I only have about 6 hours of good energy a day, and I'm at work for 4-5 of them, it's pretty tough to make it happen.
But, for anyone with EDS, I really recommend this protocol. It has helped me to get to know each joint, find my weaknesses, and build on them. I have tremendous hope for what my body will be able to accomplish the more I work at it.
Want to learn more?
Here's a great post from another EDS/dysautonomia blog, Spoons & Stripes. It goes into a lot more detail about the protocol itself.