Blog, Disability, Uncategorised

I finally got my answer

Over the years I’ve asked, time and time again, what the hell is wrong with my back? And over the years I’ve added to the question, but never the answer.

I finally got my answer!

I’ve been diagnosed as hypermobile, and it’s that which is causing me all this pain.

This will be a short post as I’m still learning about all of this, but I wanted it out there that I’m no longer a mystery.

I’d always been flexible as a child, though never able to do any of the tricks you associate with being double jointed. My mum could though – she could do this strange claw hand thing with her fingers, don’t ask.. What I didn’t know is that it’s genetic, and while many people are hypermobile without any issues, for some of us it causes other problems. In my case chronic pain, in my brother’s case dislocations. Yep, it got both of us.

Frustratingly in the 6 years I’ve suffered not a single health care professional has noticed that I am hypermobile, even when told of my brother’s condition. Amusingly (in a dark way) one doctor, when told of my brother’s condition, laughed and said “well we can rule that out, you’ve obviously got the opposite problem”. Except I don’t, they misunderstood what was going on.

My back is often rock solid, utterly unable to move. So the assumption was that my muscles needed to relax and loosen. Except that what is actually happening is that they are too loose and are then overcompensating, which is causing them to seize up. Loosening them provides temporary relief, but ultimately does not improve anything.

I’ve always had joints that click and crunch, which is likely caused by them slipping out of place because the muscles aren’t holding them, and then crunching back into place. Which, again, provides temporary relief.

It also would have increased my chances of suffering SPD (both pregnancies) and made it harder to recover from. My hips still occasionally give out beneath me. I also got knee pain after the last pregnancy because the SPD had caused my pelvis to shift, which pulled my knee caps out of place slightly – which happened because the muscles were looser.

It all starts to make sense.

Especially when you add in that, apparently, hypermobility could also mean waters breaking early in pregnancy (hello 10 week early daughter).

I’m still a little confused by all the terms, the consultant told me I was hypermobile but didn’t give it a name as such. But when I’ve googled for advice on easing hypermobility pain I’ve started reading up on Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome (Type III), which both seem to be the same thing. And both seem to mean hypermobility plus pain. So I guess I count as those, though I haven’t been told so yet?

To be fair, I’m being sent for an MRI as well, just to check there is nothing else. So will be seeing the consultant again afterwards. I can ask further questions then. She also said she suspects I have a touch of arthritis too.

Either way, it’s the best news I could have hoped for. I figured by this point that what I had wasn’t going to have a cure, and would be life long. At least with this there is a chance I can improve my health, or at least manage it. I’ll be going to physio where I’ll be working on strengthening my muscles, and maybe I’ll get a little bit more of my life back. I’ll always have to be aware of my body and the way it moves so I can try to minimise harm, and I’ve been warned that improvements will be extremely slow. I also imagine the physio is going to hurt far more than help for a good long time. But it’s something. It’s more than I thought possible.

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