Ehlers-Danlos Support UK
1,531 members489 posts

Flexibility isn't always a bonus

I was diagnosed with Hypermobility (Beighton score of 9), at the age of around 11. Now at age 19, it wanted to take over my life. However, with my own determination, I am trying not to let it win. Despite the daily struggle of pain, sublaxicating/dislocating joints, it will not win, at least not as easy as I expected. All of my joints are hypermobile, and I can do some pretty weird tricks with my arms, they're a great party trick, my skin is also stretchy and I do bruise quite easily. At the minute it is suggested that I have HMS (Hypermobility Syndrome) but I am waiting for tests for a CTD (Connective Tissue Disorder) such as EDS.

Since the struggling increased in around January 2015, I saw my GP who referred me to Rheumatology as she suspected Arthritis, despite all my inflammatory markers and the other markers that they look at being normal.

I have now been seen twice by Rheumatology, and have 4, potentially 5 new referrals.

Further appointments to help me in my future. Hyper mobility is one of those things, its a struggle and its invisible awareness and support from family, friends, colleagues and medical professionals will help me through.

2 Replies

I'm like you. I'm in the UK (Bristol are) and there just aren't the specialists around. The EDS (as MS is EDS III, it's just that the UK is lagging behind in it acceptance of the name!) has caused me to have gastroparesis also, and other organs are affected. My skins i pretty transparent and veins really stick out. Due to the gastroparesis, I have a feeding tube and am 5 stone 6 at then mo, despite being 43. I know what you mean about not giving in - don't. I have always worked despite the pain 24/7 but am being made redundant soon due to to cut backs in education, but until a few month ago I rurally took time off, and have been off sick the past few months due to my body finally giving in, after another stomach op and not being able to recover. If you want any advice on meds, therapy etc, juts ask, and I'll try and help. Good luck!


Thank you. I'm in the UK (South Yorkshire). I'm awaiting further diagnosis, at the moment it seems (luckily) to just be my joints and my skin, however I do also have a slight heart murmur which has been investigated. I am working for the NHS at present, and am going to start my nurse training in March. I am aware of the struggles that I will go through, but I'm not (well I'm going to try) and not let it win.


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