Ehlers-Danlos Support UK
1,566 members502 posts

So confused

hi, i've had hypermobile joints which jas caused pain since I was 11 which is when my knees started dislocating. I've had an operation on my right knee and touch wood neither have dislocated for a few years. I have also dislocated my should 20 times. I have pain in my groin, I have sod still rom 3 years ago. My feet are ago y and I have plantar fasciitis and very hylermobike in my feet. I have insoles to hell. My back is agony at the bottom. I used to get palpitations often but nit so offer now. I babe dizzy spells which has been put down to vertigo. Brain fog is terrible. I'm so fatigues so waiting to see specialist. I also have irritable bowel syndrome.

I sae rhumatologist in may and she said it's not EDS because I don't have stretchy skin but have all the other symptoms of type 3 and diagnosed me with benign joint hylermobikity syndrome.

can the fact I don't have stretchy sking but have lots of symptoms mean it's not eds?


2 Replies

Hi, many health professionals now believe that there is no difference between EDS3 and Benign Joint Hypermobility Syndrome. You are correct that your symptoms suggest EDS3. Please read this article about the confusion between the 2 syndromes - print it off and take with you whenever you see any health professional:

Regardless, you should be still receiving treatment for your pain and other conditions. You should have had a referral to a physio, and a painkiller regime to keep that under control. Have you had any?


The stretchy skin thing is really interesting. It turns out that the original patient that Danlos described didn't have EDS at all that was causing the stretchy skin, but another condition. Still the stretchy skin has remained in the criteria. It doesn't have to be that stretchy though. as Jay says, the consensus is that JHS and EDS hypermobility type are the same thing, and they dropped the benign bit a while ago too.

The important thing is that you are treated and the treatment for both is the same (which is why in absence of any molecular or genetic difference they are treating them as the same) so hand in there, and maybe seek a second opinion after arming yourself with the evidence that they are the same thing.

On the other hand, as there should be no difference in treatment, is it worth the energy trying to get a different name for something that doesn't change anything?


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