Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Hi, newbie with EDS, tips greatly recieved!

Nov 05, 2014 4:27 PM

Hi, have been keeping a diary which helps, I have certain headings for each day, on advice of pain psychologist, been really helping to keep positive, well, most days. Accepting life long chronic pain is a grieving process I am still getting to manage. This looked like a helpful app.

I have Ehlers-Danlos syndrome (Hypermobility type) or simply EDS-HT, but basically it's faulty connecting tissues / collagen, given so much of our bodies are made of this, it's a multi systematic 'disorder' also brings with it for me and many others a heap of side affects like PoTS, other automonic function failures, diverticular disease, costochondritis and a whole heap of odd and weird sods such as not taking to local anaesthetics which is a life time of fun for our already shoddy teeth.

It can all make working full time in quite stressful job hard bloody work. Some days, ok most, well I mean all don't i? Are an absolute crush to the soul to get out of bed.

On the plus side, I have a lot of good help thanks to working for an insurance company, but other issues there that don't help too! I do all I can to keep myself moving as much as I can, I will never be strong, but I do all I can to try and get stronger and fight off the pain. it's hard to ask for a seat on the train when you look 'so well' you want to just pass out thanks to dodgy body functioning.

Anyhow Interested to hear other experiences and advice! Thanks for reading

Nov 05, 2014 5:05 PM

Fellow EDS sufferer here. I have hypermobility also. I enjoy the Facebook support group. It's a closed group. So your Facebook friends can't see your posts.

Nov 05, 2014 5:07 PM

Didn't realize they had it! Thanks!

Nov 07, 2014 4:52 PM

fellow spoonie as well. welcome!!

Nov 08, 2014 9:41 AM

I have HMS & my daughter has EDS vascular x

Nov 18, 2014 2:35 AM

welcome! I have eds too. I'm 28 and I can't emphasize enough not to hyperextended your joints (bend them backward) or force your knee joints sideways with sitting cross legged or crossing your legs. I wish someone had told me. never lock your knees! try to sit when you can,a Saving your joints for lifetime use. if you want more tips and details I'm derridaslut@yahoo.com !

Nov 18, 2014 2:36 AM

ps: would a cane help you? if so, it really helps you be less invisible.

Ready to start relieving your pain?

Join Community