Joint Hypermobility and Physical Therapy
So, after a quite a bit of research on "loose joints" it is almost certain that I have "Joint Hypermobility Syndrome" that is also sometimes called Ehlers-Danlos Syndrome Type III. It turns out that it is genetic. Not necessarily directly inherited from one parent, but normally a combination of questionable genes from both parents. The thing is once you have it you have a 50-50 chance of passing it on. The gene complexes that are the "problem" are those that have to do with producing collagen. How bad, you have it or what variety of Ehlers-Danlos you have, depends on what kinds of collagen are involved. The serious varieties involve the collagen types used in veins and arteries. The milder varieties, like I the kind I have just have wonky collagen in the joints. Frequent injuries and general klutziness are actually included as things to look for when diagnosing hypermobility. It seems to effect proprioception too.
It isn't something I can take a collagen "supplement" for to fix. Because collagen supplements just give the body the raw materials to make collagen. The body takes them, breaks them down, and then builds its own collagen. Since the DNA blueprint for certain kinds of joint collagen is a bit off, my body can never build "normal" collagen of those types, barring radical developments in gene therapy. This syndrome, in general, isn't considered severe enough to be one they'd consider for expermental gene therapy treatments that could really screw up your life if they went bad.
While there are some things that can be done to help someone with "dodgy" collagen, including proprioception excercises, some of it is just treatment on an injury by injury basis too because you can't strengthen everything all the time. Your muscles have to work harder to compensate for the loose joints and hold the joints in place.
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So as far as the ankle itself goes, I called the orthopedic doc on Friday because the Vicodin was messing up my system and I was having horrible nausea. I asked if there was anything else they could prescribe or suggest that I could do, because I was in miserable lot of pain. The orthoepdic's office called back yesterday. The ankle has been doing better but the rest of my body has gotten very "off" from the heavy boot and my opposite hip in particular has become extremely painful, and my whole body has just been generally aching.
They told me they called in a new pain prescription to my pharmacy. It is Darvocet, which I'm really hesitant to take, just because I know how powerful it is.... so I haven't gotten it filled yet. But, he also said he'd prescribe physical therapy for me to help my balance with the walking boot. They were kind enough to fax me the Physical Therapy "prescription" this morning.
I looked up all of the physical therapists that my insurance would cover near where I work. Since I have about a 30 minute commute, many times it is easier to find something close to where I work rather than close to where I live. The first one I called informed me she only did pediatric physical therapy. But the second group had a therapist who was able to see me today. I was in so much pain I figured I had nothing to lose. The office is under 10 minutes away, one town up the road in Glenview.
At this point, I need to explain that while where I work is more industrial, Glenview is considered part of Chicago's "North Shore" suburbs, which tend to have very wealthy residents. The physical therapy office is very beautiful and pleasant, with lots of natural materials, wood and stone and the like, sort of Zen Chic. I think they also teach Yoga and Pilates classes there. However, I had forgotten how wealthy Glenview actually is, so it was a little bit of a shock when I got there, because it didn't quite feel like I belonged.
It's definitely a much higher end atmosphere than necessary, but since they take my insurance, it doesn't matter as far as my own costs go, so I can enjoy it. I stumbled on this place by luck, but I suddenly realized that there is a huge advantage to going to a Physical Therapy practice that caters to upscale clientele. The therapist is able to take as much time with you as you need because it is what wealthier clients expect. It isn't a giant production line with "here's your 30 minutes of therapy" and then you are done until the next visit.
The physical therapist I was lucky enough to get, was absolutely WONDERFUL. I explained about how I had so many hypermobile joints and went through the Beighton hypermobility criteria to show her (I can do 8 of 9 possible maneuvers... you are considered hypermoble if you can do 3-4 of them). To my surprise, and good luck, she has some hypermobile joints herself, and was very familiar with Ehlers-Danlos issues. Again, I'm not sure exactly the "label" they are going to give me, if it will be "Joint Hypermobility Syndrome" (which is the best name in my opinion) or E-D type III. She understood how the walking boot was throwing out all of the rest of my joints in the rest of my body, and the resulting pain. And she started explaining to ME how my muscles will always have to work harder to compensate for the joints. I was so immensely relieved. I was worried I would have to spend my entire time explaining being "bendy" to her, before we even started anything theraputic.
She took a bunch of joint angle measurements in my ankles and feet and said, "Wow, I bet you could clap your feet together if you didn't have a sprained ankle!"
She felt all around my ankle, and I told her exactly where the pain was. She was very impressed that I'd kept the swelling down as much as I had given the severity of the sprain. She asked if I'd used arnica, but I hadn't. She did some very gentle manipulations that relieved many of my tight muscles, using painless maneuvers that I'd never seen before. She'd find a tender spot, (obvious because I'd jump) and then she'd manipulate the leg to a point where there was no pain at all, and say "Ok we have to hold it here for 90 seconds" It didn't feel like it was doing anything, because there was no pain, but after the 90 seconds she'd release the leg, and touch the tender spot again, and it wouldn't be tender! I know here in the States there are minimum requirements to become a licensed Physical Therapist, but I'm going to have to find out where she studied to learn these techniques. It totally the opposite of what I've had massage therapists do, where they will hit a painful pressure point and just keep pressure on it, until the pain diminishes. There were two manipulations where she said I might feel pain, because the other "bendy" patients she's had similar to me did have some pain there. I felt a twinge of pain in one of the two, but nothing at all severe.
She thought about my situation a bit, and decided that if she could stabilize the ankle, well enough to put me back into a regular shoe, instead of the walking cast/boot, that is what we should try to do, because the rest of my body is complaining so much about the inbalance from the boot. After feeling the ankle extensively and deciding exactly she did a single spiral wrap of tape from the bottom of the arch of my foot, up my calf. It kind of looks like the bottom of a candy cane. It wasn't like trainers often do for sports, because it wasn't wrapping, over and over or around and around with a lot of tape. She did put two more layers of different kinds of tape directly on top of the first layer of tape for stability, but it is still just a single spiral twist up my leg. Then she told me to walk on it. I was amazed! While I was still a bit wobbly overall, that one piece of tape stablilzed my ankle almost as well as the entire air-inflated walking cast I got from the doc.
She told me to try it with the boot off tonight at home with only one of my neoprene athletic splints and a regular shoe and see how it went. I am *not* to push it too far. I'm not going contrary to the orthopedic doc, because he told me that if I could splint it stable enough on my own, I didn't have to wear the boot. Before now I couldn't have, but with the therapists tape job, I think it may be possible. I suspect I will be alternating between using and not using the boot depending on what activities I'm doing. In the short term, she's going to be working with me to reduce the joint pain, and find some sort of solution I can live with as the ankle is healing. In the long term its going to be muscle strengthening around the joints, and lots of coordination work. But, I have hope! This last week and a half I've been at high to moderately high levels of pain. After seeing this therapist, the pain went down to being very mild. Now I have been walking about my job with the boot on, and the pain has gone up a little again as a result, but still not to the levels I was at before.
I see her again on Thursday!