Living Life, Within the Limits of Chronic Illness

Another diagnosis…

Well the rheumatology referral I had went through really quickly, and I was extremely lucky in that I managed to get a cancellation, rather than having to wait about a year for an appointment as I was warned about.

The appointment went surprisingly well; she examined all my joints and has concluded I have joint hypermobility syndrome. Which on getting home and researching, doesn’t actually exist any more, but has been renamed Hypermobility Spectrum Disorder (HSD).

Having been told in the past by a doctor that my joints aren’t particularly hypermobile, I was half expecting to be seen by a rheumatologist who would tell me my joints weren’t hypermobile and thus my cardiologist had seen something that wasn’t there. I seem to go into any doctors appointment half expecting a bad outcome, one where I am disbelieved.

But alas my streak of seeing good doctors has continued! I suppose after 14 years of illness it probably had to happen at some point. I’m sure a lot of people can’t understand why finding a doctor who believes your symptoms and wants to help is such a big deal, but I’m also sure that a lot of people with chronic illness know exactly what I mean; so many doctors are happy to brush new symptoms aside as part of your existing illness, that things are missed, and eventually you learn that with treatment your symptoms could at least have been managed, and as a result your quality of life could have been better for who knows how many years since those symptoms began and were ignored.

Anyway, the upshot of all of this is that thanks to another good doctor I am now awaiting more letters with appointments for physiotherapy and hydrotherapy to help strengthen my joints, providing I can tolerate it. And I am also being referred to another London hospital which specialises in hypermobility, with talks of a special rehabilitation programme they do for learning to manage the condition, including pacing as well as physiotherapy etc.

It’s all a bit overwhelming if I’m honest with you, in the last 3 months, I’ve gone from having almost no medical support, to being swamped with specialist appointments, tests and it looks like I’ll soon be under the care of 4 different hospitals, 2 fairly local and 2 in London! Guess it’s time I started getting over my dislike of hospitals!

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  1. I am so glad that you are finally getting answers after 14 years! It is about time, I’d say! I hate hospitals too, but hopefully all these specialists will help you to improve your quality of life.

    Also, I wanted to let you know that I’ve nominated you for the Chronically Hopeful blog award in my latest post. Wishing you a lovely week ahead. Hugs

    • Clare

      Thank you! I’d say it probably is about time as well, even if it is rather overwhelming with it all happening all at once like this. That’s what I keep telling myself when faced with another hospital appointment; “Hopefully this will help improve my quality of life in the long run”.

      Oh wow, thank you! I will get on to that when I’m able to. I’ve fallen a bit behind with everything this past couple of weeks, but hoping to get back on track this week all being well. Wishing you a lovely week too, hugs.

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