CRPS/RSD info

The #WongWay to live

Is the right way for Susan Cook! Invictus Games medalist, GB Women's Bronze medalist in Para-Ice Hockey and now baker!

CRPS/RSD information

CRPS I /RSD is a diagnostic consideration for patients who have pain (moderate to severe) that is disproportionate to any inciting event (sprain, fracture,etc.) and has some of the following characteristics: Pain is described as deep, aching, cold, burning, and/or increased skin sensitivity. The presence of an initiating noxious event (sprain, fracture, etc.), continuing pain (moderate to severe) associated with allodynia or hyperalgesia. The pain is disproportionate to any inciting event. Abnormal swelling in the affected part, Abnormal hair or nail growth, Abnormal skin color changes, Abnormal skin temperature (greater than 1°C assemtry), abnormal sweating. Limited range of movement, weakness, or other motor disorders (Paralysis, dystonia, etc) CRPS I /RSD is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction.

 

Basically this means that an effected body part has pain in it so high that you literally can't live at first. For a lot f fpeople the road to recovery includes depression, attempted suicide, self-amputations before they learn to live with it. Some never leave the depressive cycle and the pain continues to spread until their entire bodies are consumed in the flames of pain.

 

I have been luckier than some in that I can hide the pain from others. You don't look at me and see the pain but you do see the stick, wheelchair, falls, funny walking and sometimes the swelling and colour changes.

 

After spreading to my left leg last year I have been using a wheelchair to get about which helps control my pain but hasn't got rid of it. I have to reactions with my CRPS. One is hot and the other is cold. Hot CRPS is where my legs swell, go a red/purple mottled colour and feel like I've set them on fire, put them in vats of hot oil and stuck white hot pokers through the insides. Cold CRPS makes them feel like I have the worst case of pins and needles but to move them makes them burn like I'm touching them with flames. During both of these my legs twitch randomly, and uncontrollably, and they are hypersensitive to everything from hips down. Meaning that if you or anything else, including a light breeze, were to touch my legs it would make me want to cry.

 

I've had all the treatments I can have and at the moment am using other areas of my life to keep me going and spur me on to never give up. Some days are harder than others but I hope to make it along the rest of my path succeeding as I go. I won't let CRPS stop me!

 

So why a blog and gallery?

 

I want to share with you the messages that have got me through so far, the images that highlight the life of someone with CRPS and any further updates or answers to questions as my journey continues!

 

Want to contact me?

 

Under home there are all my social media links or you can email me any questions to crps@wongster.org.uk - I will endeavour to answer when I can with as much detail as possible!