What is CRPS?

CRPS. What the hell is that? How often do we see an acronym, a sequence of letters that does not register recognition? Well, the answer to what the hell is CRPS? Is just that ‘hell.’ The words may you ‘burn in hell’ may as well define CRPS. I know I’ve been there when I had active 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 is a nervous response to injury

It is 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. With time, this can render 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 via CBD oil or ketamine infusions and ongoing physiotherapy. Why am I writing about this in my usual history blog? The answer is I write this not to elicit pity but to give hope to others. You may have CRPS or know someone with it.

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. 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’.

Then in desperation, I dared the universe by typing in ‘cure for CRPS’. Not expecting any response, just ‘n0 results’, the words ‘CRPS Italy surprised me.’ This led me to the site Complex Truths.org. detailing treatments at clinics in North Italy. I read on, thankful I am a biochemist and could understand the medical jargon.

You can recover from the agony of CRPS

It seemed despite the defeatism of all the other sites, that there was a chance, even a good chance of recovery for this dreadful condition. 100% 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!

The crippling pain of my CRPS 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 Neridronate infusions for March 3, 2020. This involves a needle inserted into the arm to deliver the medication over two hours. Dr. Giusti sent me all the information and kindly updated me as to what pathology results etc I needed to send before approval. Patients need to be in reasonable health to avoid complications. As I was coming all the way from Australia, he wanted to make sure all would proceed.

Off to Italy for a cure!

I booked flights from Australia to Rome then a train trip to Genova for the end of February 2020. 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 for three years.

A slow recovery from CRPS agony

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. The neridronate acts on the bone cells that caused the nervous over reaction to the original injury. These are slow growing cells so the response to Neridronate is slow.

My Italian doctor reassured me I would fully recover but it would take months not days or weeks. He was right. It took four months for my swollen painful hand to soften and for me to wriggle the fingers. Gradually my wrist became less rigid, then my arm and shoulder. But I had to be patient and do exercises to get there.

The doctor said this could have been easier if I had been able to access rehabilitation soon after the treatment. But this was not possible for months due to the lockdowns.

LOCKDOWNS, 1, 2,3 and 4

Instead of a restorative European holiday afterwards, my husband and I had to flee Italy. While I was in hospital in Genova, 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 Italy as there were no hotels open.

After reaching the border by a deserted train, we found San Remo deserted as well. The whole world seemed in hiding from the virus.

Escape into France

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. Being a tourist was untenable. Also, to our alarm, French 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?

THE LAST HOTEL, the only novel with a CRPS character.

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. 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 the typing easily, I sent the book to Tellwell Publishing for a tidy up. The result is, I believe, the only novel with a CRPS affected character (Maggie). But there are many other more interesting characters to meet, stranded in my last hotel. An inspiring novel based on a true story.

Joni Scott is an Australian author with five published novels: Whispers through Time and The Last Hotel. Joni has her own website; https://joniscottauthor.com.