Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

EDS

Jun 01, 2016 11:34 PM

Long time sufferer, and just starting down the road to official DX of more than just the hypermibile.

Jun 01, 2016 11:54 PM

Curious if anyone else on here has it and how the deal it

Jun 02, 2016 3:20 AM

Been confirmed as hypermobile but not EDS so not sure how much help I can be really. Wishing you luck with coping

Jun 02, 2016 3:37 AM

With the family history and other problems the hypermibile eds was a no-brainer on my part. I am waiting on the genetic testing to come back. For others.

Jun 02, 2016 8:10 AM

Hi my Dr thinks I may have this. I have classic signs of hyermoblity but don't know too much about EDS. I've been suffering in pain for a long time. Hoping to get answers soon. 💗

Jun 03, 2016 5:58 PM

I have a genetic appointment on Tuesday... Been waiting for 18 months... Hopefully get a dx

Jun 03, 2016 10:11 PM

EDS hyper-mobile type here also known as hEDS and EDS III. I'm afraid I haven't found anything that takes away my pain. Oxymorphone just makes me vomit, codine does absolutely nothing, and I can't take NSAIDs because of kidney failure. A TENS unit helps a little, but I don't have the patients to us it this time of year. I have learned how to "turn off" or ignore enough of my pain to make it bearable most of the time. Many people with EDS metabolize medications different so that some meds won't work at all while other meds will work too well and some will work like there are supposed to. Good luck finding what works for you.

Jun 04, 2016 9:46 AM

I have EDS, as well as, Chairi Malformation. It is not uncommonly for them to be linked. I had brain surgery a year ago, to decompress due to Chiari. As things calm down on that front I am beginning to research more on EDS and how to manage the symptoms! Happy that there are others of you on here to learn from!

Ready to start relieving your pain?

Join Community