Ehlers Danlos Syndrome (Hypermobility syndrome)

welshman1982

Hi everyone, not long joined myself and wondered if anyone else out their had Ehlers Danlos Syndrome or Hypermobility Syndrome as some doctors call it. I'm 27 and have EDS type 3 and its been a nightmare. Took just over 4 years to finally get a dianosis. Recently retired from work too, partly due tot his but mainly due to an accident at work.

If anyones wants to comment on their experiences good or bad or anything else feel free.

Thanks

bluedog

Hi,

I have a friend with EDS so have a limited understanding of the condition and the difficulties my friend has as a result of it.

From what my friend says, it is still considered a rare condition and not many medics are very familiar with it, though my mate is a member of the Ehlers Danlos Syndrome website and from what I've been told, they have a friendly forum which may be worth looking into for advice, support and sharing info with.

http://www.ehlers-danlos.org/

I have found the information on there helpful to understand it all better too.

welshman1982

Hi Bluedog. I have heard of the site which you have mentioned and found it ok to a degree. The message boards tended to blame absolutely everything on the EDS and tended to be a bit monotanous. I'm not willing to pay for membership to this site as on past experience I do no think that it would be worth it.

Thanks anyway.

cally6008

Hiya and bumpy <waves> HMS sufferer here . have you tried the Hypermobility Syndrome website forum ?

mouseymousey99

Hello - Me too! I had it diagnosed a few years ago - but have to say if you say Hypermobility most people (medics) just glaze over. I have arthritis and so the hypermobility is always linked to this.

kassandra

Doc told me last week that I have this but there are different types and I'm waiting to see Rheumy so I'm not quite sure yet.

Haven't looked into EDS, I looked at benign joint hypermobility syndrome. I think my hypermobility is linked to fibromyalgia.

It's more of an annoyance than anything with me because I am used to the pain from my fibro. It makes me drop things which I suppose is quite dangerous as it mostly tends to be when I have a hot tray or pan in my hands.

Does anyone know if it affects the jaw? My jaw kind of dislocates slightly at one side and clicks. I get a lot of pain in it at times but have always just put it down to another fibro symptom

bluedog

Hi Kassandra,

As said in my previous post, I have a limited understanding of EDS, most learnt from a mate who has it (and has a combination across the different types) and what I've read and seen about it on the EDS website. (ask me about ME/CFS, fibro and arthritis and I can tell you much more :rolleyes: ).

From what I gather, absolutely any joint can be or is affected by the condition so the problems with your jaw could be due the EDS.

Going back to the EDS website, whilst I appreciate it isn't for everyone (no offence either way, welshman ) I found it useful to get an over-view of the condition, the different types etc and you don't need to pay anything to use it, including the forum. (just register for free to use the boards.) Membership goes towards other benefits and this is what I've copied from the membership information page which explains it.



"The Ehlers-Danlos Support Group has funded this website and messageboard to provide information and support to people with EDS. If you have found this useful, please consider joining the Support Group so that those of us with EDS have a stronger voice.
By becoming a member you will

• Have the opportunity to meet others with EDS
• Gain information about EDS
• Be informed of medical advances
• Be given the opportunity to help in any research projects that may take place
• Enable the Support Group to increase awareness amongst medical professionals
• Receive the twice yearly newsletter - Fragile Links
• Have priority booking at the Conferences and Regional Days
• Be granted access to the section of the Messageboard for members"

devon_guy

I've got it too! Took me 10 yrs to get diagnosed. My rheumy is just the best ever, she is fab and I don't know how I'd cope without her.....

I do agree with others, I've noticed now I have a diagnosis even though most medics haven't really got a clue what it is, they blame it for almost everything which is an easy cop out for them.

If you'd like any help/support please contact me.

newleaf

kassandra wrote: »

Does anyone know if it affects the jaw? My jaw kind of dislocates slightly at one side and clicks. I get a lot of pain in it at times but have always just put it down to another fibro symptom

Yes it can kassandra. I know someone with this disorder and she has loads of problems with her jaw dislocating, even smiling can do it. It is very painful - you have my sympathy.

cally6008

search for TMJ on google or facebook - tempra m sumit

daska

My mum has atypical Marfans Syndrome (not characteristically tall and slender with long fingers but with every other skeletal symptom), and when I looked it up one of the characteristics is hypermobility. I've not been 'diagnosed' formally but we have similar problems - joint pain, ankles and knees twisting suddenly when walking etc. Is that hypermobility. F!!! All my pain has been put down to the ME/CFS but I've said all along that I've had the 'weird' sensations since I was a kid. What happens when hypermobility and pregnancy combine - does the relaxin do strange things that aggravate the hypermobility?