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4:16am March 10, 2014

Anyone with hypermobility syndrome or EDS or Marfan’s etc. know how to deal with this?

Okay so, for the benefit of those in the tags, some background:

I have hypermobility syndrome.  I also have a neuromuscular condition, adrenal insufficiency, a movement disorder, and autonomic dysfunction.  The adrenal insufficiency has gone undiagnosed and untreated for years, making every other medical condition I have (and there’s a lot) worse all at once.  Which means I’ve spent the last six years in bed and using a tilt-in-space power wheelchair for mobility (all the time outside the house, some of the time inside the house).  I finally am getting that treated.  And I’m finding myself with more stamina than I know what to do with.

So I’m trying to get back in shape.  Whatever that means for me.  Before the time we think the adrenal insufficiency started, I walked more often than I do now, and used a manual wheelchair the rest of the time.  

When I started on the steroids to treat the adrenal insufficiency, I started doing jumping jacks.  I rapidly went from 5, to 10, to 20, to 30 at a time without even getting winded.  Great, right?

Well… not so much, it seems.  I’d forgotten that I have a horrible combination:  Loose joints, weak muscles, and years of muscle deconditioning.  You probably all know that people with loose joints need stronger muscles to compensate.  I don’t have that.  Even when my muscles were stronger than this, I still often had trouble with pain and injuries to my ankles, knees, and hips.  I’ve rapidly injured my right knee (I’m not sure how, but it’s a familiar sensation so I must have done it in the past) trying to do jumping jacks, so I’ve had to stop that and go for a much lower-impact workout.

How do other people (with any of the hypermobility syndromes) handle this sort of thing?  As in, is there any sort of adaptive equipment, specific kinds of strength training, etc. that can help offset this problem enough to allow me to do a simple cardio workout without screwing up all my joints in the process?

Somewhere in the house I still have the ankle braces I used to use when I walked more often.  I’ve ordered a knee brace for this messed-up knee (because I’ll need it anyway just for the support, whether I’m exercising or not).  I’ve injured both of my IT bands in the past.  One of my elbows likes to injure itself badly enough in my sleep that I sometimes need a sling for a week or two afterwards.  My neck is permanently screwed up already (has actually reduced range of motion on one side due to a hypermobility-related injury, weirdly enough).

Is there anything obvious I should be doing, with regard to muscle strengthening, or adaptive equipment like braces and things?  Are there any tricks anyone knows to make this easier?  Or should I just assume that hypermobility is going to severely limit my ability to work out, even if adrenal insufficiency is being treated finally?