How can I get help from EDS professionals, or anyone? The care in my area is appalling even for children.

[Maplesmummy]

I need help but no medical professional is really helping me. I have h-EDS and am finding it hard to go on. The pain is constant in my right hip, groin, abdomen and under my ribs. My left foot is so painful it feels as though I've broken it. Any use causes my unstable ankles to swell ( see pic ). I've been given orthotics but they make no difference. I'm socially isolated due to moving to a rural area and being unable to do anything without such severe pain. My mum had severe osteoporosis and walked around with her back broken in four places for over a year but they won't test me.

I am in so much pain that I wonder if there could be something else going on aswell. I really wish I could just melt away, it's too much.

[woodlandwonders]

Hello

I'm afraid I can't really be of any help practically. I wish I could. Mostly with Doctors it just seems to be about finding the right one, took me 12 years. Maybe try and see a differant GP next time you go. Or perhaps a locum, they seem to be a little more free to think outside the box.

I just wanted you to know I'm thinking if you

[wishywashy]

I have no useful advice but, also just wanted you to know I'm thinking of you!