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.