The devolution from stability to instability tend to happen near instantly. There are precipitating factors, aren’t there always, but stability usually ends with a dislocation and instability always follows in its wake. There’s a predictable route mapped out to regain stability: first there is physiotherapy in the hope that strengthening the ligaments and muscles around the joint with exercises will also stabilize the joint. If/when that fails, there’s always splinting, starting with soft splints and working up to rigid splints or in the case of dislocations vice versa. If splinting doesn’t work, surgery tends to be the next and last option. Tight a few ligaments and maybe then they will do their job.
Someone with EDS has a few additional complications for each step. Exercise is of limited value when muscles have low tone that can’t be increased no matter how hard you work. Keeping muscles as strong as possible is vital, but when muscles at their best are still only half-way where they should be, they can’t keep joints stable for very long. Splinting is great except if your joints are flexible enough to subvert the process by partially dislocating underneath the splint. There is also the balancing act of skin issues vs joint issues. Splints create pressure and generally if they’re tight enough to keep the joint in place, they are also tight enough to cause friction burns, compressed nerves and decreased circulation. Surgery is mostly a bad idea as it has a low success rate and tightened ligaments simply stretch again so that more surgery is inevitably required round about the time rehab ends. It also carries significant complications as wounds heal poorly, stitches tear out and blood vessels have a tendency to break.
There comes a point in time where I had to accept that like there is no cure for EDS, there is no cure for joint instability or recurrent dislocations. Sitting across from my physiotherapist/rheumatologist/orthopedic surgeon/occupational therapist/orthotist when they say ‘there’s nothing else I can do for you’ requires a healthy level of resignation mixed with a certain level of stubborness and faith. There may not be a ‘well’ in my future, but there’s always room for improvement and there could be a ‘better’ and that’s an improvement over ‘same’ or ‘worse’. And so the process of finding that balance begins. Surgery is out, splinting is of limited value and exericise is a two edged sword.
There is always too little and too much. Stop using a joint or keep it in neutral for too long and muscles weaken, making instability worse. Use it for too long, tire it out, injure it by overworking it and the muscles weaken and possibly break, making instability worse. However, use it just a little bit more or a little bit less each day and muscles will get stronger and healthier until you reach that plateau of best where keeping things the same means keeping joints relatively stable. Middle ground is a magical place I will probably never set foot on. But I can be very far away or move ever closer and closer is definitely better. As such the quest begins.
Sometimes I get it almost right, sometimes I get it very wrong, but most of the time it’s somewhere in the middle. Overdoing it has obvious signs – dislocations, subluxation, increased pain and stiffness sometimes a day or two afterwards. Underdoing it has obvious signs – stiffness, lethargy, increased pain. Pity the signs are so similar. Use but don’t overuse, such an elusive aim.