Monday, May 25, 2020

hEDS knee

I was thinking this is a very typical story of why hEDS is so annoying, and so inexplicable at times.  I have been running six days straight on the postal route for weeks, and at the beginning of the route several of my muscles were on FIRE from overactive use (compared to usual).  Epsom salt baths and hot compresses were good enough for that - although my steering muscles in my chest were the worst of all because they made me feel like I was having breathing issues at first.  I got through all that - the inexplicable one happened last week.

I had come home from an entire day out on the route, getting in and out of the car, walking up to houses etc.  My knee had been mostly in one awkward position in my right hand drive truck, but it didn't complain much.  After I got home I relaxed a little on the couch, and then I went outside on the porch to make a phone call.  I was walking in circles a bit, as one does, while waiting on hold for the store associate to answer.  And after I talked to her, and got my answer, I hung up the phone and made the step towards the door to come back inside.

And it struck.
My knee was twisted and giving me the worst pain I've had in it for a long time.  I could barely put any weight on it.  I had to catch the doorframe.  It was all of a sudden and with no explanation.  I looked down at it and it didn't look any different from the other knee, to my eyes.  They were the same size, *appeared* to be the same shape and such forth...

But one of them hurt a LOT.
I made it inside and sat down in a chair and took the knee in my hands and tried to massage it.  It didn't hurt any to the touch, and it seemed like maybe it was a momentary strain?  I got back up and took a few steps and BAM, no - it still hurt.

I thought maybe I'd sit down on the bed for a while and watch some TV, see if it got better.  But my better instincts started chiming in my head 'it needs heat - bath will help'.  But the bath is all the way downstairs.....

I made it there, holding onto the wall, and ran myself a hot epsom salt bath.  Again, no pain until the moment I put weight on it, and then it felt like someone was taking the long muscle on the inside of my knee and twanging it the wrong direction with every step, the pain ran up and down that muscle with each oscillation.

Just as the water began to cool in the bathtub I started to get up and I heard an AUDIBLE click from my knee, and then immediately afterward, one from my ankle as well.  Both the clicks were on the outside of my knee, and I could FEEL something sliding 'to the inward track' on both of them.  My knee and ankle had been just ever so slightly out of place.  When I got up the searing ricocheting pain was gone, left by a 'damn you pulled that muscle' feeling on the inside tendon.

The next day I had a round quarter-sized bruise on the outside of my kneecap, very dark, like I had hit it with a hammer.  No explanations.  My body was riding for that short time from the porch to the bathtub in an inexplicable 'second position' for that knee and ankle, that was just barely wrong but not able to be seen or felt.  And that short time wrecked havoc on my inner tendon so much that it was hurting all that night and all the next day - but not in the 'I cannot walk' way, just in the 'man what did you do, don't do that again' way.  That was probably how that thing started last year when my other knee swelled to twice its size and I could barely walk without a brace for months.  Inflammation is the problem there, once it sets in the swelling makes things NOT get back in their positions and grind and stretch and more inflammation.. a cycle of bad reactions.

And the thing about hEDS is that all of my joints have these second, and sometimes even third positions that they can ride in if they get 'just' the right position twisted or turned, and if I am relaxed enough for it to happen.  And because I am used to things being 'not right' in a small way, I just put up with that discomfort - it takes a LOT for it to be 'real' discomfort.  My pain tolerance has been noted as being high, and it is not that I am insensitive - I can be VERY sensitive as it builds up together - but it takes a high threshold of different pains together or one very sharp one to get me into action to do anything about it.  Because, it is 'always something'... if you fall apart over the tiny things you will never get anything done at all.

Getting the joints and connecting tendons back in place sometimes is as easy as just moving the arm or shoulder or leg the usual way, or in a wide circle stretch.  My joints pop and click all the time in just regular life for me.  I will wake up in the middle of  the night and start to turn over and it is a symphony of crackles and pops, almost all of them feeling really good as things go back where they should after a night relaxing in gravity positions.  When you sleep your body has produced the most relaxin hormones and it is the easiest and most vulnerable time for joints to move as you are not consciously holding them in the proper positions as you might have subconsciously learned to do during the daytime with hEDS.  I have a habit of building up my pillows and blankets around me to create support structures to lean on so that I can't get my arms or shoulders or knees so badly out of place.  I didn't know until I read more about hEDS that this is a very common tactic and they even MAKE pillows and things for this as preventative medicine.  It is a habit to wake up and turn over three or four times a night to get things back in place.  It is also a very good 'survival' instinct, probably.. and without it I might wake up with something severely out of place and need to do much more to get it back.

But the knee thing shows that sometimes it can take a while and the right stimuli to get them back where they belong - and it can cause damage the longer it is in the wrong place.  And that will only get worse as I get older.  It took until I was nearly forty for the normal cracks and pops (which have been around since I was like eleven years old, and I was told it was all growing pains and being gangly) to cause me much pain or problems at all. 

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