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Ehlers-Danlos Support UK

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Soracha36

Hello All,

Good to have found this and I identify with lots that have been written about.

I got a diagnosis of Fibromyalgia a few years ago and hypermobility, Brighton score 6/9 so not as bad as some though in my opinion he didn't check other places that I think there may be some hypermobility issues. He also didn't spot the blue tinges in my left and right eye which I now know from my own research and agreement from a GP can be indicative of hEDS. He also didn't use the diagnosis of JHS he just said hypermobility and gave me a leaflet when clearly from my own research I met the criteria at the time for JH syndrome. Again based on my experience downplaying things...and with the attitude your fine now off you go and self manage all by yourself. Which is incredibly disheartening and frustrating. Ive lots of other health issues and in my mind correct diagnosis is important as they can often have links to other stuff and i need that stuff on record especially with my other health conditions that when all combined leave me unable to work for a little while now.

I have a couple of questions that I'd be most grateful for any help with - can the doctor diagnosis heads or do I have to go back on the very long waiting list (I've been discharged ages ago) just to get that diagnosis. I also feel that in the rheumatologist eyes I am not bad enough - I don't dislocate etc but I have a lot of muscle and joint pain in the areas of my hypermobility and my strength lessens and lessens. In my opinion my hypermobility affects me a lot more than they either know, can see or believe. I have so much skeptism with the medical profession and these days you very much have to be your own doctor it feels.

Does anyone suffer with their eyes - I've been having a lot of aches with them recently and had inflammation from dry eyes. Could that be connected?

I often hear lots of grinding in my joints - is that part of it it?

My dentist is always saying be doesn't understand why my gums receeding so much - could that be related?

Thanks a lot and good to have found you all 💜

2 Replies

I have very dry eyes and I understand that with EDS you do not have the normal amount of collagen in your eyes. I also have receeding gums and have to have 4 monthly appointments with a periodontal hygienist - only not possible because of the lockdown. Because EDS is a connective tissue disorder it can affect your whole body and unfortunately it is a very misunderstood condition, in my experience. .

Hi, I was also diagnosed with fibromyalgia by the first Rheumatologist that I saw, but for me the diagnosis just didn’t seem to fit right, particularly because I often get swelling in my joints (knee & wrist mainly). I was referred to another Rheumy, who said that he didn’t think I had Fibro either and said that he didn’t want to put a label on it. He referred me for intensive physio & hydrotherapy which I haven’t had yet due to lockdown. I did however have a video appointment with the hospital physiotherapist, who was far more thorough that either of the Rheumys that I’ve seen. She diagnosed me with JHS. I scored 9/9 on the Brighton test! I had no idea that I was hyper mobile at all and no one has ever bothered to check before :(

She wrote back to my GP advising of her diagnosis and has referred me for Pilates video classes.

From what I’ve read, any medical professional can diagnose you with JHS or hEDS using the appropriate criteria.

I have constant widespread pain and stiffness in my joints as well as clicking and grinding in some of them. I also suffer badly with fatigue.

Like you, I have rapidly receding gums and problems with dryness/aching in my eyes and sometimes blurring of my vision, but had no idea that they could be related.

I have also suffered with digestive troubles and a bowel prolapse :(

Following my ‘diagnosis’ and upon further research into JHS /hEDS I cried tears of relief as finally I have a diagnosis that seems to fit, so I understand how important it is to get the right diagnosis.

At the very least you should ask for some physio to help you manage the condition.

Hope you get some answers to your questions x

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