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Two years ago I changed my profile photo on my social media, to one of me wearing an orange sweater - because orange is the colour of CRPS awareness for my rare disease and chronic pain condition...
Complex Regional Pain Syndrome (CRPS), formerly called Reflex Sympathetic Dystrophy (RSD), is the cause of the 'mild cognitive impairment' that stole my beloved bioethics career at the end of 2018.
This condition has also caused localized problems with my right hand and arm. These include bone and joint issues, and pain in both bones and joints. Also allodynia, an extreme sensitivity of the skin. Then there's the neuropathic or nerve pain (imagine Shingles pain, combined with both burning and frostbite), along with spasms, tremors, and more.
There are some full-body symptoms of CRPS as well, because it's considered to have both autoimmune and neuro-inflammatory effects.
That's how this one rare disease can cause so many different symptoms - in addition to chronic neuropathic pain - from full-body fatigue, to cognitive challenges, to spasms... and a long list of other issues.
It's a nasty disease, that's often PREVENTABLE with rapid diagnosis and treatment within the first 3 months.
Unfortunately it took me almost 3 months of fighting with one 'gatekeeper' specialist physician to even get a diagnosis - because he actively prevented me from getting a second opinion.
So now I raise awareness and advocate for other patients, so that this hopefully won't happen to anyone else!
This is how Art Despite Pain (#ArtDespitePain) came to be, using my art practice and resulting watercolour paintings to help raise awareness of chronic pain.