CRPS is often described as an invisible disability. I may look healthy but I suffer from severe, unrelenting, and burning nerve pain.
Have you ever had root canal?
Remember the pain and sensitivity?
How about the continuous throbbing or whist doing basic things like talking?
Even hot or cold causing that searing pain?
What about that desperation of just wanting the pain to end? To quit it all, I wish to be free of that suffering and yet… Mine never does… and it never will!
One of CRPS symptoms is continuing pain that is disproportionate to any inciting event. I was in plaster cast in 2007 following surgery after accident at work, when this was removed I was unable to straighten my arm, so had to remain in the angled bent position.
The arm was useless to me and could not hold anything in my right hand, I had physiotherapy this was the a most painful time of my life as she tried to aid my mobility and movement the pain was just too much.
To put this level of pain in perspective for you, that ranks higher than both childbirth and amputation! I cried throughout treatment… I know she was only trying to help, on reflection it was the right treatment to have yet I still suffer with severe pain, decreased range of motion, motor dysfunction and arm/ hand weakness and tremors.
I suffer with Allodynia; which is pain to light touch & temperature sensation (pain caused by something that wouldn’t normally cause pain) I have the inability to tolerate items such as some clothing on my affected arm, even the wind blowing a light breeze or air conditioning in a room can cause extreme Pain. Feeling like you been stabbed with a knife. Deep bone pain too.
I was unable to shower my right arm in the beginning (2006) and wear clothes that touched my arm (living in short sleeves tops) due to the pain, but after attending Bath Mins Hospital in 2010 for a 2 week in patient programme I learned desensitisation (using different textures materials on both arms 4 times a day) and coping techniques.
I have temperature asymmetry my right arm which means it can swell, sweat and change skin colour at any time becoming mottled, frozen cold or have intense burning pain where my left remains normal. My right arm feels heavy and I usually have to support it on my bag or pocket. This in turn causes my shoulder to become painful. It effects my balance, my mid line is off centre which means when I’m walking with someone by my left side I tend to bump into them constantly.
I require assistance at home & work with simple day to day stuff. If I have something planned or looking forwards to great day it can be taken from me even before I am out the door.
CRPS saps your energy gives you exhaustion and insomnia. Every day can be a struggle… I have good or bad days, even changing by the hour… The emotional effects of CRPS often have a profound effect too. Living in constant pain, losing the ability to work; my nursing career gone! mobility and dexterity challenges, strained social and romantic relationships, financial obstacles and lack of understanding and support from family and friends can all contribute to the development of anxiety or depression.
Family and friends can help by believing that the pain is real even though it is invisible and may not be readily apparent by my demeanour or activities. CRPS is classed as a rare disease, lacking the proper awareness and funding… not only among the public, but shockingly among the medical community as well.