My Painful Journey with CRPS

CRPS burns like hell

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CRPS. What the hell is that? It is an acronym for the medical condition of Complex Regional Pain Syndrome which is ‘hell.’ The words may you ‘burn in hell’ may as well define the burning pain of CRPS. I am posting about my painful journey with CRPS to whisper encouragement to others who suffer with the chronic, debilitating pain of CRPS.

Dubbed ‘the most painful disease known to humankind’ and ‘the suicide disease’, CRPS or Complex Regional Pain Syndrome, is a neurological condition characterized by intense pain, burning, inflammation, swelling and loss of movement.

CRPS starts as a disproportionate response by the sympathetic nervous system to an injury to an extremity, a foot or hand. Often the initial injury is minor, a sprained ankle, a broken toe or wrist. But for some reason in some unfortunate people, the body responds by establishing a pattern of self-harm that can spread through the body in time, rendering the individual a cripple incapacitated by pain 24/7.

It can happen out of the blue to young or old, healthy or not. Millions world-wide suffer this incurable disease. All doctors can offer is pain relief or ketamine infusions and ongoing physiotherapy. Why am I writing about this in my blog? The answer is I write this not to elicit pity, because I am ok now, but to give hope to others. You may have CRPS or know someone with it. I am whispering encouragement.

Oh, no! I have CRPS.

CRPS chose to attack me in January 2020 after a routine surgery for a broken right wrist. Plunged into excruciating pain, I could not comprehend what was happening to me. Pain is such an internal personal struggle that is hard for others to understand. Shooting nerve pain is worse than muscle pain as it seems to burn you alive. I can imagine how bad the pain must be for burns patients like brave Australian Turia Pitt.

While I contemplated a life with such pain, I googled and googled trying to come to terms with my diagnosis. I cried for days as all sites confirmed the prognosis of ‘incurable’, ‘debilitating’. CRPS rarely goes away by itself. It is a chronic condition that often worsens and spreads to adjacent limbs.

In search of a cure.

Feeling desperate, I dared the universe by typing in ‘cure for CRPS’. Not expecting any response, just ‘no results’, I was cheered to see the words ‘CRPS Italy’ and a link to Complex detailing treatments at clinics in North Italy. I read on, thankful I am a biochemist and could understand the medical jargon.

It seemed despite the defeatism of all the other sites, that there was a chance, a good chance of recovery for this dreadful condition. The clinic cited a 100% recovery if treated within a year of diagnosis and at best 70% for individuals who had suffered longer. Compared to the cost of long-term pain relief and physiotherapy, over many years, the treatment in a clinic over two weeks seemed reasonable. Plus, a trip to beautiful Italy alone would surely cheer the soul!

Within months the crippling pain had spread to my shoulder and neck, immobilizing my entire upper right side. I felt there was no time to lose. With the help of my son and an interpreter, I booked treatment for the infusions for March 3, 2020. This necessitated flights from Australia to Rome then a train trip to Genova.

Off to Italy!

All seemed to be going well for me until Coronavirus erupted in North Italy just days before my flight. As the virus already threatened Asia through which I had to fly, I could not get a refund. I am so glad now because if I had not gone then in early 2020 during that small window of opportunity, then when would I have been able to? Australia and many countries closed their borders soon after and Covid 19 became a global pandemic.

Yes, I received my treatment, four Neridronate infusions over a fortnight in a beautiful clinic set high on the hill overlooking Genova harbour. Yes, I recovered 90% of my function so that today I am only limited by residual stiffness in my right side that could have been prevented if I had been able to access rehabilitation soon after the treatment.

Lockdowns, 1, 2,3 and 4

But instead of a restorative holiday afterwards, my husband and I had to flee Italy. While I was in hospital, lockdowns 1, 2 3 and 4 closed Italy. There were no ristorantes or cafes open to enjoy the usual vibrancy of Italian life. Borders to the east and north had closed. Only the French Italian border was still open. We set off from Genova railway station escorted by local police. All tourists had to leave.

After reaching the border and finding San Remo deserted, we continued on to Nice, hoping to find a hotel and reschedule our flight home. Our pre-booked three-week holiday, post treatment, could no longer happen as all borders were closing making being a tourist untenable.

Also, to our alarm, hotels were closing one by one, like a pack of dominoes. Unable to secure a flight on our visits to a barely functioning Nice airport, we took refuge in hotel after hotel, unsure of our immediate future. We met similarly stranded people from all over the world. They all had interesting stories.

At that point, I knew I would write up my story about CRPS if I recovered so others would know of the ‘cure’. But one day at the airport we met a young ballet dancer, a mother with a teenage daughter and a very helpful young chef from Torquay, all trying to get flights home. Why not add the plight of these people into my book and write not a non-fictional true story but a blend of fiction and true life?


That was the moment when The Last Hotel was born, my story of love and loss, of lockdown and family, my story of hope. While recovering at a snail’s pace, I tapped out my ideas onto my old, battered iPad. Neridronate acts on the bone cells which are the slowest growing cells of the body. The cure is not at all instantaneous which is why other countries do not promote it.

I could only use my left hand, so it was a one -handed slow process, particularly for capital letters and punctuation. Once we finally arrived home in Queensland, Australia, I continued the writing in lockdown finishing the book in five months.

As I could not edit my typing easily, I sent the book to Tellwell Publishing for a tidy up. The result is, I think, the only novel with a CRPS affected character (Maggie). But there are many other more interesting characters to meet, stranded in my last hotel.

It is an inspiring novel based on a true story. “Plagues and pestilences can come with no warning out of a cloudless sky but so too, can love take you by surprise.” Yes, despite being set in a pandemic, it is a love story.

Be encouraged by my book and women’s blog, Whispering Encouragement

photo source provided by Joni Scott

Joni Scott is an Australian author with three published novels: Whispers through Time, The Last Hotel and Colour Comes to Tangles. Joni also co-hosts a women’s blog; and has her own website;


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