Seizing up

When I was younger I used to watch older members of my family struggling to move because of joint pain and stiffness and thought smugly that I’d never end up like that.  I was so flexible I just thought it wouldn’t ever be an issue.  Of course I had no clue then that I had EDS or that I was actually more likely to seize up than other people, not less, and at a much earlier age.

The first thing to stiffen up was my back and neck.  I’ve had back pain since the age of 11 so have seen my fair share of physios over the years, but as I approached my mid thirties when they tested me to see how far back I could bend I realized I was struggling.  By the time I hit 40 I could still bend forwards to touch my toes no problem, but could literally only bend backwards a couple of inches.  I went from being able to do backflips to being as stiff as a board in the space of just a few short years.  My neck stiffness makes turning my head problematic and this causes issues when driving – I even struggle to turn enough to put my seatbelt on, let alone look behind me to reverse.

The next body parts to stiffen up were my hands and arms.  I found my hands cramped doing the slightest activity, like typing or chopping veg, and although my hands are still as flexible as ever the ligaments feel stiff, every movement strained.  Then for 2 years I had awful chronic “tennis elbow” in both arms.  The ligaments were obviously both severely inflamed and everything I did aggravated the pain.  And then suddenly the pain stopped and the stiffness set in.  It’s really difficult to explain the stiffness associated with my hypermobility.  I’m still, on the whole, much more flexible than healthy people but at the same time every movement feels like it’s straining ligaments which are already taught like piano wires.   I now wake every morning with seized up arms and have to give my elbows a good rub each day to get them going.  I also regularly wake with dead arms, y’know the feeling you get when you sit on your leg for too long – totally numb but with painful pins & needles.

In my mid forties my hips and pelvis started to stiffen up.   Exactly the same scenario as with my elbows.  They started with bursitis (ie inflammation) in both hips and then after about 18 months the pain stopped and the stiffness set in.  I can now no longer bend forward to touch my toes – in fact I can’t even bend forward far enough to put my socks and shoes on.  I get out of a chair with an “umpff” and walk like a constipated duck until my pelvis decides to loosen itself up.  My Dad does the same thing – the only difference being he’s 77 and I’m not even 50 yet!I

My current problem is with my feet.  I took them completely for granted until about 18 months ago when they started to hurt – you have no idea how painful walking is when your feet are playing up.  I’m currently in the inflammation stage with what’s called Metatarsalgia or sometimes Sesamoiditis depending on who I see.  I have burning pain underneath my first toe and the balls of my feet which at times feels like I’m walking with a shard of glass in my shoes.  I’ve tried 5 types of orthotics now and nothing has helped, in fact some have made it much worse.  I’m now waiting for the inflammation to subside and the stiffness to set in.  It’s already started and first thing in a morning I walk “ooching” and “owwing” across my hardwood floors like a 90 year old.

My pain and stiffness has always been worse on my right hand side (I’m right handed).  I think it’s because I subconsciously favour the right side of my body and it’s suffering the most wear and tear, but I could be wrong and it could be due to something else entirely.  When I was really ill with M.E. the right side of my body was always more severely affected, so it could also be a brain related thing.

I don’t feel I have arthritis per se and neither do the Doctors I see.  X-rays all reveal perfectly normal joints.  The exception is my back, where my MRI showed “mild” wear and tear arthritis but the neurologist said that was perfectly normal for my age and she probably had worse spinal arthritis than me!  My bones/joints don’t feel abnormal and don’t hurt – my ligaments, on the other hand, most certainly do which is no surprise given I have a connective tissue disease.  And despite the burning pain all my inflammatory blood markers and auto-immune indicators come back really low, which always surprises me.  As I keep saying, on paper I’m the healthiest sick person you’re ever going to meet 😉

I’d be lying if I said I wasn’t concerned for my future.  If I’m like this at 48 what on God’ green earth will I be like when I’m 70?  It doesn’t even bare thinking about.  It’s weird, though, that I’m seeing a pattern of symptoms: first comes about 2 years of chronic inflammation, then this largely goes and the stiffness sets in.  Being allergic to pain killers I prefer the stiffness to the pain, even though it limits my movement – at least it doesn’t keep me awake at night.

 

Advertisements

6 thoughts on “Seizing up

  1. Wendy barker

    This is me to the tee!! I am a personal trainer in the health industry for 20 plus years. I train consistently to maintain some kind of joint integrity. But I’m always with some itis of some kind. Started in my early 20’s when having foot pain, right where I now have a huge bunion. I was diagnosed with hyper mobility in my feet by a podiatrist. What I came to realize is the hyper mobility is all over head to toe. In college while playing volleyball, my right elbow flared up because every time I hit the ball it would hyperextended. I have been injured all of my life in one way or another. Tendinitis in both elbows, back weakness and strains & sprains of every joint. Currently having issues with my right thumb joint going on 2 years. After suffering with severe plantar fasciitis in right foot for more than 2 years, I was in a rear ended collision and now I have sciatica from hell. It never ends and it’s hard to keep going and have some body part hurting/inflamed/ injured all the time.

    Like

    Reply
    1. Jak Post author

      Sorry to hear you’re suffering Wendy, it really does suck 😦 Because I was so flexible physios never took my pain seriously – they took one look at how bendy I was and concluded there couldn’t be much wrong with me! I was in my forties when I realized it was the mere fact I was so bendy that was causing the problems and saw the right Rheumatologist to get diagnosed with Ehlers-Danlos Syndrome. Jak

      Like

      Reply
  2. Wendy barker

    Yes I have found docs don’t know much about connective tissue disorders so when you tell them it goes in one ear and out the other. Therapists generally are the same. My diagnosis is FAHS, standing for familial articular hyermobility syndrome. My father had it and both my children have mild forms of it. One positive thing is you have nice soft skin even at 52, I look late 30’s early 40’s, so I’m told. What type of work do you do? And does the condition affect your job or your recreational activities?
    Wendy

    Like

    Reply
    1. Jak Post author

      Unfortunately I have not only Ehlers-Danlos but Mast Cell Disease, M.E. (following meningitis which left permanent brain injury), endometriosis and adenomyosis so am very much affected by my diseases. I was bedridden with M.E. for a decade and nearly died, and still have to go to bed each day at 4pm and stay there until the following morning. I use crutches often due to my Ehlers-Danlos and have to use a mobility scooter for longer distances. I struggle with simple daily living tasks like bathing and cooking, reading and just being upright so my illnesses have decimated my life in all honesty. Not everyone is as unlucky as me though or as severely affected! Jak

      Like

      Reply
      1. Wendy barker

        So sorry to hear this! What is mast cell disease? I haven’t heard of it? How to you keep from depression?
        Wendy

        Like

        Reply
        1. Jak Post author

          There is a guide to mast cell disease in the ‘Guides’ menu at the top of my blog. You can also read about my story in the ‘My Story’ menu at the top of my blog.

          I was born with most of my diseases and have been severely ill for nearly 23 years. You have to find joy and purpose and that differs for everyone. I’ve no intention of being miserable – life is too short and precious 🙂 Jak

          Like

          Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s