Possible EDS or hyper Mobility - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Possible EDS or hyper Mobility

Jdizz7 profile image

Hi 34 F diagnosed with ME/CFS, fibro, pernicious aneamia, migraines, ibs, orthostatic issues etc. Rheumatologist said my fingers are hyper mobile, podiatrist said my legs/hips particularly right side (dominant side) are hyper mobile too. The dentist said there’s a lot of movement in my jaw- I also have TMJD.

I’ve checked the Beighton score- I get points for the thumbs, fingers and spine. None for elbows. Knees I’m unsure. My old yoga instructor said I hyperextend my knees but I’m not sure if it’s 10%.

I’ve got a call with pain management next week and wanted to discuss the possibility of EDS or hyper mobility with them. Does anyone have any guidance on how to go about this?

I don’t have stretchy skin but my sibling does. My mum, gran and sibling also have lots of joint/muscle pain. We all got told growing pains and my mum did gymnastics. Also family history of migraines, allergies, fainting/pre-syncope and ibs. We all bruise like peaches.

I also have fallen arches, LLD, hallux limitis and lots of stretch marks since age of 10. I’m awaiting cardiology for POTS assessment.

3 Replies

My daughter is 25 she was diagnosed when she was 16 by a lady called Dr Pauline Ho she is a rheumatologist specialising in EDS . My daughter has all of the symptoms you have and has had various orthotic devices bodysuit splints etc she suffers from pernicious anaemia also lack of vitamin b her body does not make vitamin d D3 or B .which makes it really difficult for her to absorb the vitamin B which she receives by injection she also has the IBS as well as ovarian cysts total exhaustion her body does not make collagen so therefore her muscles do not hold the bones in place she however fights against this everyday and continues to exercise by means of her horse to keep her core muscles strong enabling her to be continent rather than incontinent you must get a diagnosis normally from a rheumatologist if you can find one in your area who may specialise in EDS this is a long haul for the rest of your life.

And for you family and friends too . You will need as much support as possible My daughter is amazing although at times she is extremely low she always pickes herself up and carries on, some people over the years have almost thought she was faking it with so many issues such as pots she is so weak and dizzy .but I could and do see the pain she is in in there's nothing fake about this illness it's something you can't see but it's there and it is absolutely debilitating at times I wish you luck x

I’ve booked an appointment to see Dr Ho next month

I am not sure that the pain management team will be able to diagnose EDS but your GP can with the RCGP EDS toolkit.

Have a look at it yourself and then discuss it with your GP. The pain management team could use the toolkit too.


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