Tina (serenity151979) wrote,

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I'm still alive!!!!!!!

Hey everyone! I know I haven't been around LJ much lately, sorry about that. I've missed you all! Some of you I've kept up to date with Facebook, but for everyone else I'll do a recap of what's been going on.

As most of you know I've had ME/CFS for many years now, but for the past two years or so I seemed to be getting gradually worse, and having a lot of joint pain that I didn't think could be attributed to the ME/CFS. It just felt 'different' and new. The pain was awful, especially in my hips and knees, which were the worst, but also in my feet, shoulders, wrists, hands and neck. I was also having a lot of falls. My legs would just 'give' and I'd end up in a heap on the ground. I have to wear knee supports a lot of the time ATM. I kept going back to the doctors but was told that it was just my illness and that my blood tests always came back fine and showed no signs of rheumatoid arthritis. However, I was still getting worse, the pain getting more severe and the falls more frequent, and I was feeling more exhausted than ever, and seemed to be feeling ill just all the time. A lot of days I'd wake up and find I couldn't get out of bed, either because I was too tired, or more often because my hips and knees were simply too painful to walk. I accepted that I must just be having a bad relapse of the ME/CFS.

Recently my brother-in-law was talking to a doctor during the course of his job (he works in disability rights for a university) and he mentioned to her my niece who also has a lot of pain and falls, and she suggested something called 'Hypermobility Ehlers-Danlos Syndrome'. I did some research into this, which led me to a website for a condition called 'Joint hypermobility syndrome (sometimes known as JHS or HMS, I'll be using the term HMS from now on for simplicity) I read through the website and joined the forums and read those too. It was just like reading about myself! So I went back down to the doctors and discussed my findings with him, and although he'd never heard of it he put me on stronger painkillers (tramecet - was originally put on tramadol but it made me way too spacey) and agreed to refer me to a rheumatologist for further diagnosis.

I had the consultation with the rheumatologist on Wednesday. She asked me loads of questions about my medical and family history, then examined me. The head rheumatologist joined her and they did the Beighton score to determine how hypermobile (joints bending the wrong way - sometimes called being 'doublejointed') I am - I scored the full 9 out of 9. She said I was the bendiest person she's ever seen! People can be bendy without problems, they're just hypermobile. That can be handy for dancers and gymnasts etc. However, if you're bendy with pain and problems it's HMS. The ligaments around the joints are too lax and they don't hold the joints in place properly, it can even lead to subluxations and dislocations. There's also some sort of problem with collagen in the body. Luckily I've not dislocated yet, but I have subluxed (displaced without fully dislocating) some of my joints. So I've been diagnosed with HMS, although there's a possibility that it's also Hypermobility Ehlers-Danlos Syndrome as some of the HMS specialists say they are one in the same, others disagree and say they should have two separate diagnostic criteria. Whatever it is, it's not pleasant! I've also been diagnosed as having fibromyalgia on top of everything else. I'm waiting to be referred to a physiotherapist, although it's going to have to be a very gentle regime due to the ME/CFS, and also a podiatrist. I need special insoles made as my feet are completely out of alignment, apparently.

This condition can also lead to early onset of osteo-arthritis, so that's something I have to be aware of, although I got x-rays in my hips done on Wednesday and thankfully they came back with no signs of arthritis yet, so that's a blessing.

I've always known I was bendy, but until my brother-in-law's chance meeting with that doctor I would never have thought that it could be the source of so many of my problems! Also, I finally know, after 30 years, why the whites of my eyes are blue/grey instead of white like everyone else. It's one of the signs of this condition!

I'm just hoping the physio can help with the pain and falls etc. I'll have to see how I manage it with the ME/CFS and play it by ear each time.

Anyway, thanks for letting me ramble and I hope this goes some way to explaining why I haven't been around much. *loves you all*

Tags: eds
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