Benign hyper mobility is the same as EDS?

[Thelittlebrowngirl]

Wondering if benign hyper-mobility is still EDS? My primary doc said the U of M doc didn't say I have EDS.

But center pain syndrome & Benign hyper mobility.

Anyone know?

[DISC]

Do you have any of the other symptoms which are listed under EDS? In the US they now and have for some years classed Hypermobiolity as EDS3, and do not see a difference between the two. In the UK there are few doctors who understand about EDS and still call it hyper mobility.

[Jay66]

Center pain syndrome is I think Complex Regional Pain Syndrome or CRPS, and benign hypermobility is one of the old ways of descibing the syndrome which is currently described as hEDS, or Hypermobility Spectrum Disorder, if you don't meet the strict criteria for hEDS. You can check with this document: ehlers-danlos.com/wp-conten...

As hEDS and HSD both cause pain (it is one of their defining characteristics), it seems like they have tried to descibe the same thing differently. The difference will lie in the emphasis on physio, so it is worth asking for a referral again to get diagnosed properly under the new criteria.

My doctor thinks hEDS is an autoimmune disease, and that I don't 'look' like I could have it because I am short and chubby, so you are not alone living with incompetence.

[Tillyray in reply to Jay66]

Hi Jay.As you may know, I saw Dr Hakim at the Hypermobility unit in London who diagnosed both me and my son with hEDS -Hypermobility Ehlers Danlos syndrome- based on physical examination, medical history and family history...

From my experience and understanding, I believe Hypermobility Spectrum Disorder might be diagnosed without other evidence of a family history to connect symptoms to Ehlers Danlos. But from symptoms, and physical evidence at examination which shows Hypermobility.

My son has obvious, visible signs of hEDS and this supported my own hEDS diagnosis, along with past/present medical histories and our family history which appears to show strong signs of EDS. We were seen in consecutive appointments and also together..

My son is tall and thin, I am not. He has stretchy skin, mine must just be saggy😕.. So seeing an 'actual specialist' makes all the difference. Unfortunately There are only a few of them. Dr Hakim told me that a rheumatologist cannot diagnose it. I told him I had found that out for myself over many years of seeing different ones.

Best wishes xx

[Thelittlebrowngirl]

Oh I sure do. I also have Reynoids. My knees go backwards & I've torn both my shoulders & now I'm heading soon to have rotator cuff repair for the 4th time!

My kids have messed up joints & bend their fingers backwards as well. My 15 year old pops his shoulders when he sleeps!

My sister also has EDS.

[loadsofissues in reply to Thelittlebrowngirl]

I have had so many bad attacks of Raynaud's this year and in the last few weeks my arches on the feet have fallen and it is this the podiatrist says is causing the knees to go backwards and in turn it knocks other joints out like the pelvis.