are ehler danlos 3 and hypermobility syndrome one and the same ?

[missteal]

This a question a lot of people ask including doctors!! Nobody knows is the only real answer, everyone has their own opinion. I've heard lots of different ways of diagnosing either tbh.

I believe "benign joint hypermobility" is basically that you're double jointed with no pain or other symptoms. "Hypermobility syndrome" is when you have hypermobile joints with pain and score highly on the beighton scale. Ehler Danlos type 3 (or hypermobility type) seem to include various other symptoms like gastric problems, stretchy/velvety skin, easy bruising, IBS, poor healing, flat feet, high pallet and tooth over crowding. Saying that hypermobility syndrome is also said to have many other symptoms similar if not the same as EDSH/EDS3. Many doctors now think that hypermobility syndrome and EDSH/3 are one and the same but each patient has a variety/severity of different symptoms.

They are searching for the genetic marker that signifies HMS/EDSH as every other type of EDS have a specific genetic marker which makes them far easier to diagnose.

I believe I have EDS type 3 although I've only been diagnosed with hypermobility syndrome. Some of my doctors refer to it as HMS others EDSH/EDS type 3.

I hope this has clarified for you that there is not really an answer to your question just vague grey areas with both lol x

[Hidden in reply to missteal]

Thanks for your message,it seems there is still a lot about this that is been researched.hopefully one day it will be better clarificationxx

[ehlersdanlosuk Ehlers-Danlos Support UK in reply to missteal]

We have the definitions available on our website detailing the differences between JHMS and HEDS; please click here: ehlers-danlos.org/what-is-e...

[Springsong]

I get referred to as having either or (depending on the consultant/Dr I am talking to). I have been lead to believe (by my Drs) that people with HMS may be ok with anaesthetics whilst people with EDSH may receive the maximum dosage of anaesthetic but still feel what is happening (i.e. dental fillings or having stitches put in).

[francherry]

Hello,

I'm rather late to this question but I think they are not the same. ie you can have hypermobility syndrome without EDS 3, but it you have EDS 3 you have the symptoms listed by missteal as well as being hypermobile. Local anaesthetic doesn't work for me (even after 2 lots of it) - I can still feel pain afterwards and have had to interrupt various operations screaming for more pain relief - I usually need at least 3 or a general anaesthetic. Have flat feet which were first operated on at age 9 (bunion removal and extra toe (inside the foot) removed. Also had 7 teeth removed when I was younger due to overcrowding, poor healing, easy bruising, gastric problems etc. Obviously v bendy as well - whereas I know some people who are hypermobile without having any other symptoms. I have found that some doctors still insist on saying I have 'benign hypermobility syndrome' which does show confusion within the medical profession!

[Hidden in reply to francherry]

Cant say I find HMS to be benign..there is no difference .....just if affects people differently.......The docs who treat this as benign should try it. Connective tissue disease isnt much fun and most people have so little help.HMSA is good for info........most sensible advice from others with same symptoms and problems. There is so little help given its shocking......

[francherry in reply to Hidden]

I agree it isn't benign, in fact I correct any doctors that use that term! Not many health professionals seem to have heard of it although as I get older and see many more doctors for rheumatoid arthritis, more people seem to have heard of it than 20 years ago when I was first diagnosed.

[Hidden in reply to francherry]

I wish I 'd been diagnosed sooner....there seems to be so much overlap with other conditions such as RA or Lupus. Many seem to have other conditions alongside HMS. Problem is unless a diagnosis is made many suffer for years and are made to feel as they are hypochondriacs or nuts. My hands are my main worry as they are rapidly deteriorating...losing so much enjoyment from hobbies...let alone the ability to manage ordinary everyday tasks. It makes me so angry when you feel dismissed by GP's or physios...the comment there is no magic pill isn't helpful. They seem to think a pill or a few exercises is an answer. Its hit and miss depending on who you see or perhaps how determined you are.