I don't know if it's been announced over here yet but Ben and Scott made a new site for Ehlers Danlos Syndrome. I have seen discussions on other sites with the belief that some people with fibromyalgia could possibly have EDS. One study done on this issue (I've seen the link but don't have it handy) found that fifty percent of the participants of that study (all of whom had fibro) had EDS. That's why I want to share the link here. May is EDS Awareness month too. Here's the link.
Thanks WW! I had no idea the percentage was so high, good to know.
Thanks for the info!
I did ask my Rheumatologist about this, my concern was that it is so difficult for them to numb me, at the Dentist, and especially at Pain Management. The Rheum said no, don't have it.
Yw and thanks SK. I;m glad you don't have EDS. It can make the fibro even harder to deal with. They definitely need better stuff for numbing at the dentist. My mouth aches just thinking about it. I'm tickled pink that Ben and Scott made a site for EDS and just wanted to share. They said the first 25 members can be the hardest to get so I'm posting everywhere I can think of lol.
That's great, Waterwaves! Finally, a place for people with EDS to go. And with all of the exposure that this entire website has recently received, many peoat ple my find themselves at the new EDS site. There is an illness the needs as much exposure as it can get.
Scary to think if those stats are correct about 50 % of fibro people having EDS, but it wouldn't surprise me either. It'll be interesting to see what unfolds over time in regards to the possible connection between the two illnesses.
Thanks for making us aware of the new group, Waterwaves and I hope you're managing ok with your own EDS symptoms.
Petunia
Thanks WATERSWAVES , it’s amazing how many rare diseases there are, and thanks to Ben & Scott we can connect some dots that even the dr… Don’t think about.
Wow 50%, ok now I have to go back and look up EDS…
Hugs
dee
Hi Petunia! I hope the site will help too and am thrilled that they got it up on the first day of EDS Awareness month lol. I just checked and it's up to 14 members so getting there. They named it Ehlers Danlos Support so that people could find it on sites like Google quicker. I'm doing ok right now. I even went to the International Women's Show yesterday and had a blast. The facility it was at isn't even charging to rent the scooters any more so that was a nice surprise. I hope you're doing well too.
Hi Dee, Yep the number of rare diseases is mind boggling. The 50 percent was in the one study so I'm not sure how much the real percentage is but it's definitely more than I expected. I just wish more doctors would learn about some of these things. I know people who have been told it's all in their heads and I'm just glad the doctors I've been to haven't told me that.
I've seen posts in my inbox, does anyone know how to do this? I'd like to make sure more see this one. The EDS site could use some new members. It's ok to join as a friend of someone with EDS or with an uncomfirmed diagnosis etc. I just want to spread the word.