It is rare to find a clinic that can successfully treat Hypermobile type Ehlers Danlos syndrome, and while this is for multiple reasons, the one I see as the most common barrier is that care for this population (all populations, actually) is typically based on the paradigm that the cause of a patients pain or movement problem is from something being too strong/weak or too tight/loose. At best this is a reductive over simplification of the situation where these things, if present at all, are usually symptoms not mechanistic causes. At worst, it is objectively wrong and trying to ‘correct’ these issues causes harm. This includes with H-EDS, even though the hypermobility is the main causal contributor, it is most often the cascading downstream consequences of hypermobility that cause a lot of our symptoms and needs to be addressed as well. A lot of providers are also loading EDS bodies at times more load can’t be tolerated, or mobilizing structures that really shouldn’t be.
Let’s go back a few steps and we’ll loop back around to EDS itself. Let’s give two hypothetical situations to talk about a chunk of this. If you break your arm and it’s in a cast for 6 weeks, it’ll come out atrophied. A clinical event, but not a clinical (disease process or such) cause of strength loss, it’s just essentially acutely under trained. The cast comes off, and as long as you gently return to activity, the strength returns. But if each day you were to get up, make breakfast, drive to work and sit for your job for 8 hours, head back home, make food, sit in front of the TV and go to bed, but then go to a doctor or PT with back pain and they tell you it’s because your back is weak, this does not make anymore sense as it being a strength problem. Why would we be getting pain from activities we do regularly? Why would we not have the strength and endurance we need to do activities we do regularly? That’s not how physiology works. If you cannot carry out your normal activities