CRPS – My Embuggerance (Part 1)

Perhaps the most challenging of my conditions is CRPS – Complex Regional Pain Syndrome (previously known as RSD). Most people haven’t heard of it nor have most doctors, and, as a result it’s missed, misdiagnosed or dismissed a great deal. CRPS sounds fairly innocuous but it has the tenacity of a rabid ankle-biting terrier that won’t back down; its teeth are constantly clenched as it growls and reaches right into the very core of me. I live with pain constantly with joint dislocations, severe migraines, neuropathic pain, a crumbling lumbar spine, pelvic pain, bladder and bowel pain, a never-ending stomach ulcer, all over nauseatingly heavy fibro pain, but CRPS is in a different league for me as it never lets go; it feels as though it sucks all of the oxygen out of the room and then thrives as an anaerobic predator with a warped and twisted sense of humour.

It has been called the suicide condition as its so relentless; it almost feels vindictive as it never pauses, never allowing even a brief period of respite. There’s no ebb and flow with the pain like most of the pain conditions I have. Even a gentle breeze or a light brush of fabric is agonising for both of my limbs affected with it (my left foot/leg and my left arm/hand), my thumb feels on the point of explosion at any given time and the burning pain oscillates between feeling as though someone has poured oil into my veins and set it on fire or I’ve been frozen in sub-zero temperatures and the gnawing frostbite is slowly eating into the very core of me. The ice burns are worse for me as I get this far more and it drains all the heat from my body and soul as I try to breathe into it and through it. Some days it’s impossible to ‘cope’ or smile, even though I’m a smiler, if there was such a word, I can’t smile with the relentless burning ripping me apart from the inside, out.

My affected limbs frequently change colour and temperature, from red to blue, to burning hot to ice cold. Then there are the spasms, tremors and the electric shocks which are enough to drive even the calmest person to insanity. My brain has buckled under the pressure and I’m extremely forgetful these days, I forget words, I can’t find words, I forget where I am and I repeat myself. I go blank and my vision blurs. Reading is nigh-on impossible as I can’t retain information, forgetting a sentence as soon as I’ve read it. Due to having CRPS in my left hand along with the tremor, I can’t type, so I’m now dependent on voice-activated software which presents its own challenges to someone who forgets so quickly as I will dictate a sentence, and, when I read it back, if it isn’t what I think I said, by the time I’ve realised the mistake, I have no idea what I said in the first place. My senses get overwhelmed quickly and I can’t cope with bright light, noises, crowds…

It’s relentless and although the pain and weirdness of CRPS is indescribable, for me, this isn’t the worst part. My biggest struggle is with the headology (I so love you, Sir Terry) as it seems CRPS causes some dysfunction in the brain and so-called ‘body perception disturbance’. For me, this is where my brain has written my left leg and arm out of its circuits; it’s as though I no longer have those limbs. When I close my eyes I can’t see these bits of me. When I look at those limbs, they’re blurred and out of focus. How could I not have noticed that? As a result, with a leg frequently not there I topple over and fall on a regular basis and walking is nigh-on impossible. Not to mention the struggles with my hand from eating, washing, dressing and typing, as well as dealing with the intense tremor in my hand which won’t give up in its attempts to be a champion ‘thumb twerker’ (perhaps it’s been watching Miley in my absence?).

Realising my brain has somehow managed to lose two of my limbs came as a massive shock to me as I couldn’t believe I hadn’t noticed they were missing and I couldn’t get my head around the fact that my brain could do that to me. Why would my brain do that to me? It’s hard not to feel somehow responsible but it crept up on me when I wasn’t looking. Of course, this is a basic description of CRPS in Sarah-speak, doctor-speak would describe this in a far more technical and scientific way but, despite my years of being a professional patient and likely knowing more than most medical students, I’m not a doctor. I can only describe this from my experience and it’s fucking horrendous.

Other than a few dedicated specialists who work in the immensely confusing world of CRPS only fellow suffers can really get ‘it’ as it’s so weird, there aren’t many people I can ask, in all seriousness, if they’ve found their missing limb, how we’re coping (or not) with the electric shocks, and how on earth we’re still managing to smile despite feeling as though we’re being eaten alive by pain. I sometimes wonder if my missing limbs have gone into the witness protection programme and changed their identities as, despite immense effort, they still haven’t come back. Yet, I haven’t given up trying, I won’t. I know my brain can overcome this and I won’t let it get the better of me…