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CatchMyPain Community and Pain Diary App to manage chronic illness


Jan 23, 2016 3:35 AM

Hi everyone. I'm new to this so I thought I'd say hi. I have EDS but haven't been diagnosed for very long and am still struggling to get my head round it. I've got an appointment with the specialist clinic in London in march but any doctors and consultants I've met don't seem to know a huge amount about it. I've never met anyone else with EDS, or any chronic pain disorder, before so I'm really glad I've found this forum :)

Jan 23, 2016 7:42 AM

Welcome 😊 I have just understood that I have something... And have to track my pain and issues for a while to be able to sort it out. Either connective issues or reumatic

Jan 23, 2016 8:02 AM

EDSmusicgirl, welcome to our community family. I don't have EDS, but there are others here who do. I have no doubt that they will be more than willing to share their experiences with you and answer questions you may have we are a very tight knit bunch of caring, understanding and loving people. We all come here for many different diagnosis but we all share chronic, irretractable pain. This is a safe forum to come to when you need to unload some stress, if you need someone to listen, if you need to chat or just want to check in. There are never any judgements here (so no apologies necessary if you need to vent). So, warm welcome, gentle {{{Hugs}}} and prayers that you find the support, information and advice you seek.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jan 23, 2016 8:59 AM

Welcome to the community EDSmusicgirl! We're actually a very close & supporting community, closer than family I think, from all walks of life & countries. Regardless of our issues we all understand what chronic pain is like and how it affects our lives. We come here for advice, to chat, to cry, to pray for others or request prayer, to vent, or just to say hi. And no one is judged, because we all already have enough of that in our lives from family & friends, and even doctors & strangers. I don't have EDS. I'm dealing with 3 autoimmune (AI) diseases, and many more chronic pain issues. But coming here I found out I'm not alone, that others have many similar issues, and I've learned a lot from everyone; even about dx I don't have. I'm positive as others come to your post you will meet many who can offer advice, suggestions, and information on EDS. Learn as much as you can, because you may need to educate your doctors. Become your best advocate, and don't be afraid to question your doctors. Speak up and gain knowledge of all possible ways to help yourself. Don't be anyone's guinea pig. Hugs & prayers you will find much support & knowledge here, and make many new friends! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 23, 2016 1:20 PM

Welcome! I know how you feel trying to wrap your head around things. Just remember, a good cry isn't a bad thing. It let's things out and you can get back to business, like a reset button. Lol. I have days where I think about the fact that I will probably feel like this the rest of my life and it's really, really hard.... I understand.

Jan 23, 2016 1:31 PM

Thank you everyone :) it helps so much knowing there is somewhere I can talk to people who understand. And thank you for all the advice <3

Jan 23, 2016 3:56 PM

Welcome. I also don't have EDS but like most everyone else, I'm dealing with multiple diagnosis that all cause pain.

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