It’s been a while since I updated this blog. This is partly because I moved house (again) and it took a while to get the internet going, secondly because I have been busy. Towards the end of August, I noticed I was becoming tired more easily and developed a griping pain throughout my body. I have always had serious problems with my joints, mainly sublaxions and several dislocations, but I was told that I would ‘grow out of it’… When I was 17…
The pain started to interfere with my roller derby first, which annoyed me as I had been progressing quite well. I noticed my coordination had worsened, which considering it was terrible to begin with made it quite obvious! I was falling over more, then finally during a scrim, my ankle twisted at a 100(ish) degree angle! After several minutes of Peter Griffin like ‘AAAh ssssss…. AAAh ssss’ I dragged my sorry corpse off the track and sat in the middle where I nursed it with an ice pack. I couldn’t make the last few sessions because of the twisted ankle and I got very frustrated.
Sick of feeling ill all the time, I went to my GP, explaining my symptoms past and present. He referred me to a rheumatologist. The rheumatologist asked me lots of questions, pulled my arms and legs which went quite far in the wrong direction, shone a light in my eyes, performed the ‘Beighton hypermobility test’ on me then invited me back into his office. He explained that I scored 9/9 on the test (meaning all of the 9 joints tested were hypermobile) plus had hypermobility in most of the other joints too. He told me the agonising pain I had felt for most of my life was NOT in my head and was caused by weak collagen in my muscles which was struggling to hold my joints in place. He told me I have a blue tint in the white of my eye (apparently that means something…) and that his diagnosis was Joint hypermobility syndrome (or HMS, hence the witty title…).
Hypermobility syndrome is often diagnosed as Ehlers-Danlos syndrome type 3 and sure enough, when I was referred for a heart scan to check I didn’t have the heart or vascular issues some people with EDS have, they told me I was there because of my ‘Ehlers-Danlos’…
So wait!? I have two new diagnoses!?
Well yes and no, like I said even the doctors seem to argue over the name of the diagnosis. Some call it HMS, others EDS-3. Personally I don’t care what they call it, I just want a cure!!! Oh and guess what… there isn’t one. I am going to be in pain for the rest of my life, most likely get worse and as for that annoying patch of psoriasis on my right knee… that’s possibly going to turn into arthritis… Whoop [/sarcasm]
So anyway, I managed to get back in my skates with the use of ‘pacing’ (pacing out my days so I don’t get over tired) and I use a cane during the week to take some of the pressure off my toes, which have all dislocated at least once just today… Don’t get me wrong, I am thankful that I haven’t got a more serious case of EDS (some types can cause serious illness or death) but it’s still pretty annoying. I am also waiting for physiotherapy to see if we can strengthen up some of the loose joints. In the meantime, I am taking it easy.
Also, you’ll be glad to hear my heart is fine.