Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-26-2013, 10:24 AM #1
Brambledog Brambledog is offline
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Brambledog Brambledog is offline
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Default UK support groups for RSD/CRPS

I was reading about the US support groups in the other thread and I would really love to know if there are any groups in the UK. As another poster said, this site is great, but it would be lovely to meet others who have this and just chat generally about life...

I've asked a couple of docs who have said they will find out for me and then, predictably, never do. I think persevering myself might get better results!

Any info gratefully received

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 04-26-2013, 03:09 PM #2
Jimking Jimking is offline
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Bram, have you checked out Facebook? There are some RSD Facebook pages that can lead anywhere. Check this one out and see if there are members from the UK that may know what you seek.

https://www.facebook.com/heretohelp.rsd?ref=ts&fref=ts
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Old 04-27-2013, 03:47 AM #3
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A number have started up and failed. members just give up hope or there is some nasty cliques on them. You can try fightingrsd but don't suggest they should try and help others. I did was accused of being a bully and they said people complained that I was frightening them so they banned me. Inumber of people e-mailed me after saying it was BS no one complained and some left the forum because of what they said
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Old 04-27-2013, 05:27 AM #4
Brambledog Brambledog is offline
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Thanks guys

I try to avoid FB, I went on it for a while in the early lonely days, but I haven't for months now. It's a set of proxy relationships that have little real value when the chips are down....I found that depressing in itself lol!

I know there have been a couple of support sites that have been plagued by bad feeling and torn apart - it's such a shame that there are people out there who spread bad feeling in the one place genuine sufferers go to get real understanding and support

Thanks for your replies, I'll keep looking. Maybe I'll put up a sign in the local hospital and see if anyone is interested in starting a group.

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 04-28-2013, 04:40 PM #5
Jimking Jimking is offline
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Keep in mind that this particular RSD facebook page isn't just a clicky sight, it attempts to get the word out about RSD the best it can. A little different I think.
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