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Ehlers-Danlos Support UK
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Diagnosis.. can anyone help me with the understanding of it all please

Hi, I was refered and recently now been diagnosed with hypermobility spectrum disorder bordering EDS (2017 EDS criteria) and chronic widespread pain-musculoskeletal predominant.

That was on the 14th of July.. does this mean I have EDS? I am in so much pain..even more so, in my shoulders..one is so much worse than the other. My neck feels so loose an painful.. my wrists are the same.. my hips elbows ankles and I knees are feeling the same. I have been referred to 3 week stay in hospital for rehabilitation programme. Also my back.. I keep getting aches and painful twitches? Does anyone relate? I just don't understand my letter an also I'm getting worse. X

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Yes, you have hEDS or as near as damnit. Everything which applies to hEDS also applies to you. They have recently re-drawn the line for diagnosing hEDS very tightly around a few symptoms, excluding many who would have had an EDS type 3 diagnosis before. If you don't have exactly those symptoms then they are currently diagnosing Hypermobile Spectrum Disorder instead. So it is basically the same. The main symptom is pain (hence me typing this at 3 in the morning) and we all get that one. Join the HMSA and other EDS/hEDS groups. Also this web page is useful: edhs.info/home

It sounds like you are about to get a lot of help from your hospital in terms of physio, pain management and perhaps bracing. This is really good - many (most) of us got some painkillers and shown the exit straight after diagnosis.

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Thank you.. an thank you for the link. I am very grateful to get the rehabilitation and pain management. I have physio but easily slip away from my exercises being at home as I get in a lot of pain. Sorry to hear you have broken sleep.. I know the feeling. I hope your getting support.. I have to daughters an I'm lucky to have support from family but I've got so much worse the last couple months I'm finding it hard even to cook an clean an i love a clean house.. I've recently claimed for pip but I don't feel confident..are people like us with this diagnoses liable? X

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No support, but can manage light housework at the moment, and 'order in' on days when I cannot cook, or do very simple stuff. I don't know about PIP - if you are sometimes able to manage things it seems to work against you. andreasuperstar just had PIP turned down - maybe if she's on here later she can help?

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I hope your rehabilitation program will be very useful for you.

Wishing you all the best for your pip application. I have EDS too and receive PIP, it has got all to do with how it affects you and its not about your diagnosis or about the support you receive. When I applied I was just hoping for the mobility part as my mobility is really badly affected but when I got the results I was pleasantly surprised that I was awarded the lower care part too. I was not expecting that as I live by myself and don't have any help (on bad days just not much gets done around here)

Hope it will not be too stressful for you!!

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Hi, Thank you.. I maybe should have gone to the cab.. my boyfriend filled in the forms for me. I'm under a royal orthopaedic hospital so I sent off all my hospital letters but I don't have a support worker as of yet. I got my diagoses letter through recently an i see that doctor back in July.. but I have got worse since then so thought maybe do i send the letter to them still an Then get my local doctor to write me a letter updating them. I just don't want to go through it all again. We did fill it out all on my worse days an most days that's how I am. That's really good you got pip.. I hope my outcome will be the same lol. How long did they take to make a decision on yours? X

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I don't have a support worker either and filled the forms in myself. I filled it in on my average days (not my worst)

My pip decision was quite quick (few months after sending in the form) but my ESA took ages (nearly a year)

Good luck

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