It’s 5 a.m. and again my mind chatters away. The constant conversations between it and my arm would have you believe they’re inseparable friends.
My night of theoretical rest started late again as my arm’s incessant discussions spawned more research. Thank goodness for the internet. Diagnosis and management of CRPS and comorbid conditions by Dr. Pradeep Chopra, MD if you must know. A light way to pass the time.
My Mum, a retired charge nurse specialising in amputation and head injuries, and Dad spent a lovely week with us over Christmas. On one of our beautiful walks along our local beach, my arm did as it will do and turn a mottled shade of painful purple. She mentioned CRPS.
After a decade as a clinician, I’d not heard of it. But I suppose those with extreme tenderness to touch might not consult with a health professional who invariably, well, touches.
And I’m sure I must have missed it too.
Thanks to Dr. Google, I discovered it’s old name was RSD: Reflex Sympathetic Dystrophy. This rung a bell from my University years, although with so much stuffed into my brain over my eight-year haul, the ring was almost inaudible. The vascular surgeon I’d seen around five years ago had mention RSD in passing, though not with sufficient emphasise to encourage me to consider it important, let alone seek treatment.
So I struggled on.
I’ve consulted with a Chiropractor (of course), Naturopath, Massage Therapist, Physiotherapists (seven in fact), Acupuncturist, Exercise Physiologist, Reflexologist… And G.P.’s (some of whom have retired or left the practice and we have moved too), an Orthopaedic Surgeon, several Occupational Physicians, a Neurologist and Vascular Surgeon, as mentioned. Add in the I-couldn’t-be-without Psychologist and Psychiatrist and you’re getting a sense of what a chronic pain sufferer will do to seek relief.
And this isn’t to mentioned the supplements and medications.
Yet, I can’t find relief from the pain that plagues my existence. And again, it reached its terrible tentacles into my sleep last night.
It’s a strange thing to be woken by pain. The dreams this soreness can inspire. And instead of recuperation and the Elysium of momentary albeit unconscious escape, it drags you from your short-lived slumber back to the steadfast suffering. And while in the clarity of the day I try not to use such terms, the dark can drag the spirits down.
But I am blessed by a wonderful husband who makes me two egg, soy milk scrambled eggs on one piece of gluten-free toast delivered with a soul-lifting cup of English Breakfast tea. Ah, he and it are my sanity. Not to mention the adorably daft dog that sits by – and often on – our bed.
As another night of restless sleep crawls slowly by, I don’t think you can understand chronic pain completely without being someone who experiences it.
And once again I dare to hope. Not for a cure, it’s been six years since the injuries now… but for relief.
I consulted with a pain specialist a month ago. He wants to start at the beginning and identify causes of the pain, theoretically addressing them as we go. With spinal anaesthetic injections scheduled for July, which seems like an eon away, he aims to identify any cervical facet involvement. Yes, treatments will be discussed. No, onto the next thing. Sadly, there is a raft.
Yet in between the wait, I experienced a vasovagal attack. Apparently.
And I don’t recommend them!
Bowel pain followed by overwhelming nausea. Overheating, prolific sweats, pins and needles through both arms accompanied by hyperventilation. Stripping naked to lie on the bathroom tiles before I passed out due to lightheadedness. If you can, stay away. Far away.
Still, recovery was swift.
Until five days later an evening of severe pain caught us unaware. And I say ‘us’ intentionally because a chronic pain sufferers family suffer with them.
The best way I can describe it is a potent mix of two things:
1) You know those D batteries? When you were a child did you ever stick your tongue on the end of one, maybe enticed and encouraged by your younger brother, and feel the buzzing kick? Yup, that, plus…
2) Imagine you are a Lego man, or in my case, woman. Pull your left arm off and replace it with another that has been set alight.
When all you can do is walk tentatively around your kitchen and cry, holding your arm like a fragile injured puppy, while pain soars and cuts off everything on the outside, you know it’s not good.
My husband called the out of hours doctor and the three to four-hour wait begun.
At 12:15 a.m. a lovely gentleman arrived with his briefcase and enquiring mind. To cut to the midnight chase, he administered my first ever injection of morphine and left for the next patient on the list.
And I waited… 15 minutes he said or was it 50?
It’s been 20 minutes. It will start working soon…
Over an hour.
So apparently morphine doesn’t help my pain. Now that was something my naive mind didn’t realise was possible.
A return trip to the pain specialist and I’m grateful for a moved forward injection date in May.
The narcotic medication he recommended for desperate times didn’t work. He’d said it may not. And the way it took my legs out, making them the perfect wobbly pair for my head, things will need to be dire before I try those again. One little pill can pack a terrible feeling punch.
And while I wait for the next two months to pass, I decided to consult an integrative medical doctor who I’d heard speak at a conference years ago while I was still able to practice and personally unafflicted by pain.
(There’s a big difference between experience and empathy)
Turns out her sister has CRPS, so she knows a lot about it in stark contrast to everyone else. That was a lucky fluke!
My signs and symptoms:
Mottling of my hand
Swelling of my fingers
Unrelenting pain that waxes and wanes
Burning… oh the burning!
Fingernails that refuse to grow
Skin changes (a hint of dry, a sample of sweat anyone?)
Tenderness to touch
Pins and needles
At University we were taught to follow Occam’s razor:
Among competing hypotheses that predict equally well, the one with the fewest assumptions should be selected.
In other words, find the diagnosis that covers all the symptoms, if possible, and that’s most likely to be correct.
My signs and symptoms and CRPS? They all fit.
In Dr. Pradeep Chopra’s presentation, the one I mentioned earlier, he discussed how thoracic outlet syndrome and ulnar neuritis can be an upper limb cause. Tick. Tick.
So what comes next? What can be done?
I don’t exactly know yet. My head is swirling with possibilities in amidst the confusion, sense of both hope and loss, and want of sleep. Though as my ‘good’ arm is now mottling, partnering in the finger swelling crime and beginning to hurt, I hope I find an answer soon.
I’m not after a cure – that would be wonderful but I know it’s not helpful to place hopes where there may be none – just some relief (did I say significant relief? :)) and improved quality of life… and right now? Some recuperative shut-eye.
Dr. Rebecca Harwin
Chiropractor & Multi-book Author