How I conquered chronic pain
Roula Khalaf, Editor of the FT, selects her favourite stories in this weekly newsletter.
The textbook diagnosis for chronic or persistent pain is one “that lasts for longer than 12 weeks despite medication or treatment”. It has been my companion for the past three years, along with a shedload of painkillers and a slew of doctors. Long-term pain becomes both a mental and physical battle. It exhausts and angers you, fogs up your brain, steals your sense of humour, makes you fearful and strips you of a normal life.
I have always been hyper-mobile. Fantastic when I was young and could exercise regularly and bend myself inside out. Less so at 60, when the very thing that allowed me such freedom of movement started to punish me. In recent years I have suffered from a bad back, bad neck and arthritic joints in my hands.
In the early stages, the pain was occasional and I could manage. A doctor looked at my hands and told me I had post-menopausal osteoarthritis (so many unappealing words, all in one sentence). A pair of black compression gloves became a go-to accessory. Then, about five years ago, I got out of the bath and, as my foot hit the floor, I felt a sharp stabbing pain in my groin. It was fleeting, but soon happening all the time. I started having trouble doing things like standing up from sitting or climbing into bed.
Just under 28 million adults in the UK suffer from chronic pain. I became one of them. It was the little things that upset me the most: struggling to walk down to my favourite cove to swim in Cornwall, or the night I tried to dance at a friend’s birthday and found myself crying from the pain.
I called one doctor, then another, and another. I had an almost childlike trust in them. But after two years of no improvement and no diagnosis, I lost faith, especially in the ones who said, “We’ll get to the bottom of this!” and then didn’t. Most offered me some kind of painkiller – a gift to the pharmaceutical companies, who certainly aren’t in a rush for any pain to end.
My story, like so many others in my situation, was, as my neighbour Tim (an orthopaedic surgeon) put it, a “complex” one. The doctors continued to speculate. Maybe it was a hernia in my groin? Maybe it was an internal problem in my uterus? It was neither.
A consultation and a pelvic MRI at an orthopaedic clinic revealed I had severe degenerative tendinopathy in my pelvis, and that the best course of action was cortisone injections. I was told that they had a 98 per cent success rate and that, with exercise, they should fix things. Two days after the injections, it became clear I was the two per cent fail. I got sciatica down my right leg and my walking reduced to a shuffle. The pain was at least 50 per cent worse. I left messages at the clinic; how could this have happened? No response.
I was not suffering from anything life-threatening. (I live with someone who has cancer, albeit one manageable with medication and from which he doesn’t suffer any tangible pain). But my pain was physical and loud. I was conscious of the number of painkillers I was inhaling – I was never without a large supply of co-codamol.
Neurologist and neuroscientist Dr Ash Ranpura says chronic pain is “the kind of pain doctors hate, because they don’t like prescribing loads of pharmaceuticals. But they don’t know what else to do – and pharmaceutical-based medical care is not linked up with alternative treatments like acupuncture, cranial osteopathy or Pilates, as it should be.” Ranpura explains that “chronic pain is not a mechanical disorder. It is an imbalance in the way the nervous system regulates itself.” To explain the way chronic pain wires into the brain, he says: “Imagine a field where the grass is the same length. If you were to mow one strip, people would start walking along it, and it would become well used. This is what happens with significant pain – a pathway is formed that the brain can use more and more.”
He continues: “Where allopathic medicine is excellent at addressing the initial root cause of an imbalance, the holistic approach can restore balance. With therapeutic touch, the brain changes its gating. It has to close the gate that leads to pain and open itself to healing sensation.” All of these techniques help “ground” the body.
Where to go and what to try
CLINICS AND PROGRAMMES
Ananda Pain Management Programme Includes physiotherapy, topical Ayurvedic therapies, stress-relieving yogic postures and an anti-inflammatory dietary approach. Seven, 14 or 21 nights from $740 per night, full board.
Buchinger Wilhelmi clinic buchinger-wilhelmi.com
Chronic Pain Clinic richmondstace.com
The Octagon Clinic octagonclinic.co.uk
BOOKS AND AUDIOBOOKS
Healing Back Pain by John E Sarno
Breath: The New Science of a Lost Art by James Nestor
Mindfulness Meditation for Pain Relief by Jon Kabat-Zinn
Dreem Distillery CBD Night Drops, £160 for 30ml, and CBD The Z’s Bath Salts, £80 for 400g dreemdistillery.co.uk
My GP, Dr Carolyn Barshall, says that in cases of chronic pain she often suggests acupuncture and has long been interested in complementary therapies. “Some orthopedic doctors look at only the joint in question and tend not to look at emotional or psychological impact,” she says. As well as a prescription, “ideally the patient needs further guidance; in Chinese or holistic practice they look at the whole body – I think it is something that [western doctors] need to think about more”.
As my situation grew more desperate, I decided to take more responsibility for my own situation. First, I did everything I could to reduce the inflammation in my tendons. I started intermittent fasting. I took turmeric. I spent 10 days at the Buchinger Wilhelmi clinic in Germany, which was the kickstart I needed to take more control mentally as well as physically. I walked, I stretched, I fasted and I meditated. By the time I left, I was still experiencing pain, but I was on a different path.
Back home, I replaced painkillers with Dreem Distillery CBD drops before sleep, which relaxed me. I listened to Jon Kabat-Zinn’s Mindfulness Meditation for Pain Relief and used classic deep, regulated-breathing yoga techniques (Pranayama) to calm myself through pain-related insomnia. I looked into “Somatic” therapies (created by Thomas Hanna in the 1970s), a way to use body movement as a means to improve physical and mental health. I started working intensely with a Pilates teacher, Polly Benge, and chiropractor Steve Hughes, who are based at The Octagon clinic in Hammersmith, west London. Benge, a former dancer, teaches mindful exercise with the attention on breath, alignment and control. She would put her hands on me as she guided me through the limited amount I could do, and hand me a Kleenex when I cried with frustration about the things I couldn’t.
They worked on the “whole” of me like I was an old car that needed restoring. Hughes reassured me that I was indeed suffering from chronic pain – because it sometimes felt so unreal, it was hard not to wonder if I was making it all up. He spent months trying to get my frozen pelvis to release and the related pain in my back and neck to ease. At the end of a session, he would hug me. One night Benge texted me, “We’ve got your back – literally.” I felt supported. I can see now that what they were doing was helping me work on my mental health as much as the physical. To them and to me, it is clear that the two are one.
Eventually, another doctor – this time a rheumatic specialist – in the prerequisite pinstripe suit in an overheated office on Harley Street took one look at me and said, “Well of course you have arthritis in your hips!” One X-ray later it was confirmed. “Wow!” said Tim the neighbour when I showed him the scan. “You have really crappy hips.”
It’s now been five months since I had a bilateral hip replacement. (My orthopaedic surgeon took one look at the “crappy hips” X-ray and told me in no uncertain terms that they both needed to come out.) I was very strong before the operation, working with weights so that my upper body could handle the crutches I was obliged to use. Slowly, I have found my way back to myself.
I still have pain, but it’s all the subsidiary stuff: ligaments still tender, my pelvis trying to get back to a normal position after having twisted itself in compensation for my hips. But I take anti-inflammatory pills as rarely as possible, and I see my chiropractor regularly – he told me I get a gold star for good recovery. I continue to do Pilates and I work out, I have acupuncture and I can go for walks. These are all normal-sounding things but they have been far from that for me for the past few years. None of this has been cheap. I pay £80 for a Pilates session, and £65 for cranial osteopathy. Every penny has been worth it as I slowly rejoin the real world.
Chronic pain is exhausting, destabilising and debilitating. But I now have a relationship with it, I understand it and I try to help it. I also know how to switch the channel in my brain from fear to management. There is a lot we can do to help ourselves change the narrative of pain, small inexpensive things – breathing, meditation, visualisation – that hover, much like pain itself, between the mental and the physical. I feel for the first time in more than three years that I can see a possible end to it. But I have learnt so much about myself and my own strength along the way.
I recently went to a wedding, and as I was enjoying the music under the trees, I realised I was dancing – something I hadn’t been able to do for years. Once again, I cried on the dancefloor, but this time I had a smile on my face.