So, what’s your diag-nonsense?

This morning my lovely rheumatologist called. My MRI came back and has been reported as clear, though he wants the musculoskeletal team to look at it before he’s 100% happy, so he’ll call me later in the week and let me know – calling instead of getting me in for an appointment is so practical when I live nowhere near the hospital and have no new symptoms that he can poke at. He thinks he’s spotted a cancellation with the osteo/physio team so he’s going to get them to call. Annoyingly I think I just missed their call as I was signing for the supermarket delivery. DOH! They’ll call back, right? Eek.

He’s going to write to my GP and the pain clinic once he’s had my MRI checked. He’s giving me a diagnosis of Benign Joint Hypermobility Syndrome but said that if I see a geneticist, they will probably diagnose the same thing as Ehlers Danlos Syndrome type III. Basically, my collagen is rubbish which causes my joints to be all loosey goosey and as a result my muscles, tendons and ligaments don’t know if they are coming or going so seize up which in conjunction with the pain from joints hyperextending without my knowledge is really, super fun. It’s sore and its rubbish but at least it now has a name. IBS/acid reflux are also common in people with my condition, so at least it makes sense. He also acknowledged that hormones seem to greatly effect joints and that some women really suffer around their period. Given that my hormones have gone entirely freestyle, no wonder I’m in so much pain some days! No one wants to have a medical complaint but when you do, what you need most is for people (especially doctors) to believe you. No one believed me and it pushed me right to the edge and without my Mum, sister and J giving constant support, I’d probably have killed myself over this whole thing.

It doesn’t look like there is a quick fix, or any kind of fix to be honest. I’m allergic to all the drugs. The only thing that helps my pain is, er, herbal and not legal in the UK… But it helps! Hopefully I see the physio soon and that they are helpful – though reading other people’s blogs and experiences with hyper mobility and physios, I don’t think I’ll get my hopes up too much. I’m living on the hope that if my hormones get sorted out a bit, I will at least be able to predict things a bit better and get some sort out routine. I don’t think that’s too much to ask. Oh, I’d like a baby too, but I guess my body needs to stop being a bag of dicks first.


In other news, I won a pretty sweet father’s day present for my Dad. Lunch, a golf lesson each and a game of golf for him and his wife at a pretty posh golf course! All I had to do was share with the world that time that on the 10th hole of our local golf course, I smashed him over the noggin with a 9 iron and thought I’d killed him. Six stitches later he was fine but he never took me golfing again… But yes, good luck has been finding me recently and it’s a relief. Dad is also delighted! All I’d got him was this bottle opener and some beers…


Ren x


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