The story of Amanda
I’m 42 years old and on 31st August 2014 my life changed. As part of my job, I was setting up a fundraising event, moving tables etc when I dislocated my left thumb. After a little wiggle, it clicked back into position and although the ligaments felt a little loose, the pain had gone and I thought I’d be ok with a support while it healed. Over the next few months the pain increased and I visited on out of hours doctor to seek help with the pain I was feeling as ordinary pain killers just didn’t make a difference. Following that first appointment, it took over 6 months to get to the point when someone could tell me what the issue was and, in fact, it was an emergency room doctor who first suggested I had RSD (Reflex Sympathetic Dystrophy) or CRPS (Complex Regional Pain Syndrome) as it is known now. Since a confirmed diagnosis about a year ago, the changes the illness has made to my life have been huge. From being an independent, confident person with a full time job, I’ve become dependent on my partner and daughter with low self esteem having been bullied out of my job because of the illness I have. I wasn’t able to be the go-to person anymore and the pain and restricted movement in my hand and forearm impacted just what I was able to do having assistive technology albeit only recently would have made a massive difference but by that time, work colleagues had already made me feel more useless than the disease alone. As an invisible illness, CRPS is not something that most people understand as they can’t understand that even if you try to look ok, you are still in considerable pain. I find CRPS quite an exhausting illness as I have to concentrate much more given the level of medication you have to take to be able to ‘manage’ your pain and because the energy you need to use just to get up and get on with the day. Although it felt to me to take a long time to find out what is actually wrong, I’ve been quite lucky as lots of people who have CRPS have had years of consultations and appointments before they have had a diagnosis, something that needs to change. CRPS is a relatively new illness and early thoughts that it was ‘all in the mind’ seem to be taking too long to be dismissed as many sufferers feel that people don’t believe them about the level of pain they are in, adding considerably to the time it takes them to start receiving any kind of treatment that helps in a small way. We are lucky to have centres of excellence here in the UK but we need to eliminate the post code lottery of understanding CRPS and treatment that may be available.