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Ehlers-Danlos Support UK
2,176 members690 posts

Suspected eds

Well i never thought id be posting here but i wondered if someone could help me

Ive been having symptoms since i was a child im 25 now but never got anywhere as i was either making it up being a drama queen or dcs shoved it off as growing pains,

The reason i suspect eds is that im in constant pain daily now dcs wont take me seriously and im walking with a stick due too severe pain in my knee and right ankle got physio end of the month

Pains in my legs thighs

Always falling over

Spraining my ankles constantly

Flat feet

Bruise easily ill wake up and find a bruise

Headaches

Joints pop and creak when i walk and bend

Joints are more flexible than normal peoples

Jaw locks so i have to make it crack to unfreeze if you like

Anxiety

Itchy skin terrible even though theres nothing there to itch

Always tired

Always cold no matter where i am

Always have somekind of infection

Dizziness

Sorry for the long post but any help and guidance would be apreciated

6 Replies
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something that you and your GP might find very useful is the new RCGP EDS toolkit. rcgp.org.uk/clinical-and-re...

Your GP can use it to diagnose EDS. And you certainly do have some of the criteria so it would be a good start. It is also worth remembering the old saying known as Hickam's Dictum: Patients can have as many diseases as they damn well please. That means, that although you may have EDS, it doesn't mean to say that all your symptoms are down to EDS.

For example some of those symptoms could also be due to a thyroid problem, so it is definitely worth seeing your GP and taking the link for the toolkit with you and asking them to go through it with you.

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Hi Lucy

I'm a dad of an 18 year old and from the outside looking in I recognise your symptoms. My daughter has had about 6 years of the looks that you get from peers and supposed professionals!

My advice would be simple. There is nobody on the planet who knows how you feel better than you. The NHS is effectively a broken yes/no tick box "computer says no" environment.

You need to be brave, know what you want to say, write it down, and demand referrals. BUT, be careful what you wish for as the "old medicine" that dictates the process will send you to traditional people who know what they know but may not know what you need.

In my experience it has not been until my daughter got in front of a surgeon who is definitely interested in her specific conditions and the multitude of accompanying different versions (I note you did not mention any intestinal issues which is our particular experience with my daughter), that we now have confidence that someone is listening and creating a day by day plan to recover some measure of control in her life.

We feel that we have had to prove her condition and that often sounds like whinny old goats to be honest, but I have learnt, keep it brief, make one point at a time and the mild threat of litigation seems to do the trick!

Good luck and I hope I have helped in some small way!

Regards

Micky

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Thankyou both! I know its not thyroid or anemia or iron as i have been checked for these quite recently, & thats what i mean they all keep saying im a drama queen my knee today poped out of place and poped back in that was from walking up the stairs 😐 so now im in agony! I will get there i just know i have to fight this and i dont have any intestinal issues, just my joints mainly are driving me crazy but thankyou for your help!

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I know exactly how you feel. Same symptoms. Cannot get diagnosis.

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Yes same here. Same symptoms. Gastro issues as well. Given up now. Noone will listen. Can't get GP to refer me anywhere. I think you just have to keep trying for a referral.

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Snap its like the gps do not care but im going to push it with the physios see what they say as my gp said he couldnt diagnose eds or hypermobility the physios will not sure how true that is?

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