Bristol Area sufferers from illness diagnosis CRPS?

Brain and nerves
1

Please is there anyone out there suffering from an illness called CRPS local to Bristol area I can talk with?

2

I dont live in Bristol but would be happy to talk to you and tell you what I know

 

3

Do you live in UK though? I would love to hear anything you can help me with?

Sincere regards Carol

4

Hi Carol

i live near Woking in Surrey i would also be interested to know if there are any UK sufferers as most of the people seem to be in US that i have spoken to 

5

It's great to get to talk to you as we have both said its rampant in USA! We have a clinic in Bath that specialises in CRPS!

6

No I live in the USA

7

Hello, I am a 54 year old lady living in Bath. I was diagnosed with CRPS just over a year ago. I see a GP, a Rheumatologist, a Consultant anaesthetist who specialises in CRPS pain relief and  Physiotherapist, (who was the first one to spot the symptoms. I am on 400mg a day of Pregabalin, 1000mg a day of Naproxen, 30 mg per evening of Amytryptiline and paracetamol every four hours.

I feel as if I've learnt quite a lot over this past year. I understand t pain and the pain relief. I now know the difference between feeling neuropathic pain and nociceptive pain. How can I help you?

8

Hi my name is Carol we are of similar age, although I am four years older than you, how did your CRPS start and in which area of the body, I have CRPS 3 in my ankle, I have had it now for three years and its seems to be getting worse, please can you tell me what treatments have you received and how much help have you received, I seem to keep battling on my own, I am on a lot of medication, including Morphine, which I don't necessarily believe is the answer to getting my foot working again, its in constant pain, please can you try to explain to me the differences your expressing and give me any help or guidance to getting the correct treatment required?  

9

I used to. live in Bath I now live in France .After a my leg was fractured in 3 places,just below the knee I was diagnosed with Cps my Os picked this up at about 11 wks and a scintigram confirmed it .I was taking paracetamol ,oxycontin and oxynorm (quick acting !) Plus tramadol until it started to upset me .I now have NO morphine  ,just 4x500grm paracetamol instead of 8x500grm .I have a TENS machine ,physio 2 a weeek and Iyrican ( this I believe opens the nerve pathways )I try to practice relaxation techniques and do my physio exercises most days ( trying to be honest !)Have you asked for a scintigram or physio ?

10

For meetings join us here https://www.facebook.com/groups/crpsmeetingsuk/ if you want to help us raise awareness here https://www.facebook.com/groups/799247046824775/

11

HI Francesca, mind if I ask you a few questions? I suspect I have crps and could do with some advice.

Thanks