Hello all,
My name is Newt and i am the partner and full time carer of a CRPS sufferer in the UK.

She was diagnosed 9 years ago after i took her to one of my appointments with a consultant rheumatologist and insisted they examined her instead of me. Before that she experienced a string of sceptical or baffled GPs who refused to either believe or understand the severity of her pain given that she appeared entirely normal.

It has been very hard over the years to help her stay positive and not retreat into depression. Some of the things she has been told by GPs which you may be familiar with are... 'it's just a mental health problem', 'your condition is not a REAL condition', and 'i don't see any problem other than you trying to get prescribed medication'. Soul-destroying for a patient when they are having to fight the pain AND their physician.

For those who have been recently diagnosed i would urge any of you to change doctors the moment you get the sense that they are being dismissive or lack previous knowledge of CRPS. A good GP makes a huge difference, and when under the care of a pain consultant, be pro-active. From our bitter experience, waiting for them to send you an appointment rarely bears fruit. On one occasion the clinic told me that they had not invited her to see them for 9 months because they just 'assumed she was better'. *facepalm*

I cannot begin to understand how it feels and the courage it takes you all to live with this illness. It has robbed the woman i fell in love with of almost her entire personality. She often behaves like a cornered and wounded animal, and that her pain is a seperate person and they are locked together in a sort of mutually destructive relationship. (if that makes any sense lol).

Despite this she finds the strength to do exercises/OT techniques when she can, and to make room in her suffering to love me which i will be forever grateful for

Although together 24/7 from the start of her problem, i still feel like i am lacking the fundamental understanding of what it is to live with pain having not done it myself, and hope to gain a better insight by reading your collective thoughts, ones which she sometimes struggles to convey or that i cannot decipher.

It sounds like a really selfish reason to join a group lol, but i am looking for ways to expand and use the compassion i have in a more supportive and constructive manner, with the ultimate goal of a higher smiles-per-day ratio here at home

Wishing you all easier days,
Kind regards,
Newt