The tale of the consultant pharmacist and complex regional pain syndrome

It was 2012, and I was very happy, four years previous we had left London and bought a beautifully converted barn just outside Petersfield. I had three gorgeous children and a loving husband. I had started running post-children and fitness was improving.

I was awarded a consultant post, alongside Steve Tomlin in 2006. This was just after my PhD finally ended. My academic career had started to take off. I published 5 papers with a selection of colleagues including my dear colleague and friend the late Sarah Yassin.

Dare I hope, that I would be the first consultant pharmacist to get a Chair?

We went skiing in Obergurgl. Jonathan and I were off-piste on the side of a blue run. It was our third day and the skiing was great.

Anyway, I must have done something wrong on a turn as my leg turned but my ski didn’t. There was a moment of severe pain then nothing. I thought to myself ‘oh well maybe I imagined the pain’ then I tried to lift my leg. The most extraordinary strange sensation happened, it felt as if the top half of my leg moved and the bottom half didn’t. I knew then that something serious had happened.

What I didn’t know then was how life-changing it would become.

Jonathan arrived back, I travelled in an ambulance motorbike down the mountain and into the hospital. The trauma GP, examined my knee, undertook a horrid stretch and said ‘you have ruptured your anterior cruciate ligament’. You will not be able to ski again this week. I returned to the hotel room and cried myself to sleep. I had been so looking forward to the holiday.

Anyway, I muddled through the remainder, feeling woefully sorry for myself.

My leg was horribly unstable but not painful. I nagged my husband into asking an orthopaedic surgeon to see me on return. I was reviewed by Mr Adil Ajuied. This was the first meeting with my charming orthopaedic surgeon, who is now a great friend. He told me at 48 I was too old for an ACL repair, although as I was fit and active he would do it. He told me to take the strapping off and sent me home.

I tried to walk, the pain was unbearable, it far outweighed the injury and it was relentless, it took my breath away. I lost a lot of weight. After eight months I literally collapsed in severe pain. I went back to see Adil. He then delivered the diagnosis.

I had developed complex regional pain syndrome (CRPS).

CRPS is a complex mixture of immunological and neurological disease. It is a rare complication of an injury and can result in severe neuropathic pain, dystonia, allodynia and in chronic cases disability. I know of at least five CRPS patients who have opted for amputation in an attempt to rid themselves of CRPS pain.

Adil referred me to Dr Tom Smith my pain consultant, who prescribed a selection of pain medication including pregabalin, tramadol and ranitidine. He advised that it “should resolve’.

After I started medication my pain did subside, although this only lasted a few weeks. Sadly this was the continued story of my journey with #chronic pain and CRPS. Over the next 6 years, I had a number of medical interventions. Tom my pain consultant has never given up on me, I cannot begin to tell you how kind he and his team have been. In return, I have remained mobile, which has been challenging at times.

I had a spinal cord stimulator in late 2013 this reduced but did not completely alleviate the pain. To explain, my CRPS area is just below the patella on my left knee. This meant when I walked my patella would rub into the CRPS area and flare neuropathic pain.

I had my ACL reconstructed, finally, which helped stability hugely but not the pain. I changed to Oxycontin which helped for about 12 months, then I developed hyperalgesia.

Predictably there was a progression to reactive depression from the constant pain, which became so severe that I decided to apply for ill-health retirement in 2017.

I was heart-broken to retire, I loved my job. I especially loved the patients, I am lucky to have received many awards and prizes in my career. My favourite was reaching the regional final of #ilovemypharmacist, which I was awarded for my devotion to patients, and resulted in a visit from Kate Hoey (local MP).

Why am I writing this article?

Firstly my aim is to share one of the best-kept health secrets: the misunderstanding of chronic pain. When I worked at Guy’s and St.Thomas’ I considered chronic pain patients to be ‘difficult.’ After I developed chronic pain I understood why. In chronic pain, one is constantly living in the fear of a pain flare. Whilst standing in the local pharmacy awaiting my prescription under my breath I would be shouting ‘cant you see how much pain I am in? Please hurry up, please be kind.’

Perhaps as health professionals, we should reach out more to patients like me? What I needed was someone to ask “ How are you, how is your pain? Are you coping?

Secondly, I want to praise my local community pharmacy (Day-Lewis in Petersfield, Hampshire). They are very professional. I think once in the pharmacy someone let slip I was a pharmacist, only once in six years. On another occasion, I apologised to Jose (the pharmacist) for snapping when I was in pain, he simply replied ‘chronic pain is really hard, I understand’. Lastly, on community pharmacy, as a patient, I could see the pressure they were under, yet they were never unprofessional.

Thirdly it is challenging being a patient and losing one’s role. The loss of status is huge, I went from being top of the game to feeling much diminished and a little lost. Although along the way I have made some great new friends or back in touch with a few old ones (Johnathan Laird, Duncan Craig and Meera Thacker) to name a few.

On that last note, I would like to communicate to those of you who are patient-facing to not forget what the patient might have lost or might have been. Ask them, communicate more, offer support.

How am I now?

The cruellest twist of fate is that the CRPS is much improved. Dr Tom Smith my wonderful pain consultant, performed a sympathetic denervation of my left knee over summer. The pain is improved hugely, as is the dystonia. Long may it last. Perhaps I needed to retire to get better?

What am I now doing?

I am a very proud trustee of CRPS-UK a charity that supports CRPS sufferers. We are currently planning a conference and meeting in London. I am trying to build a small practice for patients with pain who I can help get more out of their medicines. I also support a number of other patients with complex medication needs. I am slowly building an aesthetics practice (Edgeworth aesthetics). My website is www.edgeworthmedical.com. I like learning new skills. I am still supervising a PhD at Kings College and wish to continue an academic career. I am helping Meera Thacker at the Royal Free with a clinical project. Lastly, I have supported University College London with their new prescribing course.

I truly can’t decide what to do about critical care and clinical pharmacy, it’s a little like the Clash song ‘Should I stay, or should I go “ I guess time will tell.

Finally, I would like to thank friends and loved ones for the love and support they have given me. It is priceless.

Dr Cathrine Edgeworth PhD FRPHARMS can be contacted here www.edgeworthmedical.com