It was December of 2004 when my fingers and toes swelled up like sausages along with my elbows and knees. I was in severe pain and a mother of two little boys under 4 years age. Life became impossibly difficult to manage. I struggled to do everyday tasks like cleaning, shopping and cooking. Just trying to use a knife was painful. Sitting, standing and picking my children up were traumatic. I still did it. In the mornings I was most disabled, it took me ten minutes to get out of the bedroom and then five minutes to get down the stairs. I could hardly bear to touch anything because of the pain in my hands and I couldn’t drive before 12pm, when the pain and stiffness would start to ease off and I would be more my normal self in the afternoons. Yet I was still doing it all… just about. My husband was out working hard every day and barely seemed to notice how much I struggled. He was probably sick of seeing the tragic expression on my face everyday - the clear evidence was that I was still getting most stuff done. How bad could it really be?

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It was 6 months before I got an appointment to see a specialist rheumatologist. The diagnosis was straightforward - psoriatic arthritis. I already knew. It wasn’t my first run in with the disease, although it was the first time that it hadn't gone away again within a couple of months. This time I received a diagnosis, and treatment. Getting an “official” diagnosis from a specialist rheumatologist was epically vindicating. It would be an unarguable come-back to the people who told me it couldn't be that bad, that it was, "probably all in your head". Yes there were quite a few of those. This was proof that something real was wrong and that I could now be taken seriously and have a reason to ask other people for help. 

 

The consultant wrote in his letter, “she seems a little depressed.” That annoyed me - "I am not depressed!" I told my husband. But if I had been depressed...surely it would be justified, given the daily trials I was going through? Who, in my situation, wouldn't have a mild case of the blues?

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The specialist gave me an intramuscular systemic steroid injection, which worked miraculously and within a couple of weeks I was back to normal and all the swelling had gone. Obviously I wanted another shot, but that wasn't possible so they put me on a disease modifying anti-rheumatic drug (DMARD). I had to have blood tests to check my liver function once a month, and take a prescription anti inflammatory. Critically, x-rays showed that there had been no damage to any joint surfaces.

 

All was well for 5 years. I got my confidence in the future back, went out to work, made big career moves. Then in 2010 a shock de-motion at work coincided with a problem being spotted in my blood work. I had a lowered white blood-cell count and had to be taken off the medication. That’s when the nightmare with unexplained chronic pain began.

 

Around this time I stayed in a motel overnight for a work event. The bed was really had and I couldn't sleep. By the morning I had pain in my left lower back and hip joint and the knee. It was a pulsing electrical nervy pain that didn’t go away. Can a hard bed affect your knees? X-rays and MRI revealed no issues, but I was sent for a steroid shot to the hip anyway. The shot worked for the hip, but then my fingers began to swell up and I was terrified that my arthritis was coming back. The rheumatologist tried other drugs that didn't work and made me feel ill, and the pain continued to get worse and spread to other parts of my body. The rheumatologists I saw insisted there was no evidence of arthritis and I didn’t believe them. It hurt to get clothes on and off, it hurt to walk, it hurt to sit, it hurt to move. (Luckily my kids were a lot older now so I didn't have to pick them up anymore).

 

I received a fibromyalgia diagnosis (although the pain didn’t really fit the right pattern for the diagnosis). I didn't like that diagnosis. "It's not a real illness, is it?", some people said. The GP tried several different pain medications including anti-spasmodics and persuaded me to try St John’s Wort because, again, "You seem depressed". "I'm not depressed." :(

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Nothing worked; including the St John’s Wort, I’m sorry to say, as I love a good herbal remedy. To be fair to the plant, pharmaceutical anti-depressants don't cure depression either.

 

Eventually I gave in and admitted to myself that I might be a teensy-bit depressed and I was having occasional intrusive thoughts that were sufficient to scare me into getting help. "Or," I thought, "maybe I have some other, non-mental illness type, health disorder that affects mood - like ADHD, for example?". I booked a visit to a psychiatrist. I didn't have ADHD. He diagnosed me with generalised anxiety disorder and depression. Anti-depressant and anti-anxiety medication made me more settled and helped me get some sleep (I was an intermittent insomniac) but the heavy feeling - the stone in the chest was still there. I lived in a cloud of cotton wool all day, and most importantly the pain was going nowhere.

 

After about 9 months on anti depressants I realised that they weren’t actually going to FIX my depression, so I stopped taking them and started looking for actual answers. The search for answers (and the pain) went on for twelve years.

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Trawling through medical research papers, visiting specialists, seeing various alternative and complementary medicine practitioners, I probably spent thousands on acupuncture (which, suspiciously, became increasingly painful over the six week course of treatment to the point where I couldn't do it any longer) massage, chiropractors, osteopathy, physiotherapists, psychologists and waited on various NHS waiting lists an amount of time adding up to years to see podiatrists, physios, psychologists, occupational health team, hydrotherapy, radiology, rheumatology and orthopaedics. I even tried Chinese herbs and lots of different diets excluding this or that (whilst simultaneously inducing fear and worry about what I could or couldn’t eat). NONE. OF. IT. WORKED.

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Notice that the story is ALL about what happened to the pain and the various medications and treatments I tried. It never occurred to me, or any of the practitioners I visited, to look at what was going on in my life - what was the STORY behind the pain. I daren't think about the cost of all this. The only things that seemed to change over that period was the work I was able to do, and the location of the pain. It certainly wasn’t that it moved every day, or every week even, but it would shift around over a period of months or years.

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Yoga was the one thing I tried that seemed worth hanging onto - there was something about it. It didn’t stop the pain, in fact sometimes it seemed to make it worse, but it had a pleasant effect on my brain that told me to stick with it. I went to a yoga workshop, which to my horror, was about rebalancing the “chakras”. Including journalling exercises and self-disclosure to other participants, it was very uncomfortable and difficult for me, being someone who didn't share feelings easily, but I persevered and found it actually pretty powerful. It taught me something important - creating clear boundaries with other people. I started to make some changes in my life situation that increased my self-esteem. 

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By 2020 I felt more in control of life and overall less down, but I was one big pain all over and I had been taking a prescription anti-inflammatory (for short term use only) for fifteen years! In a desperate moment it dawned on me that social media and podcasts had arrived on the scene and I hadn't looked for resources and solutions that way yet. The first thing I discovered was Nicole Sachs’ podcast, “The Cure for Chronic Pain,” and suddenly I wasn’t alone anymore. I was connected to all these other people having the same problems, people who understood. I wasn't looking for a pity party, I wanted to see that there were people who were actively trying to recover. And crucially some of them REALLY HAD GOT BETTER!

 

Nicole preaches journalling and meditation and it resonated with me. I had a nagging hunch that the whole thing was really about "feelings."

 

Eugh! For some time I had been noticing the link between my "low moods" and the intensity of the pain. In the beginning I believed I was depressed because of the pain, but which REALLY came first? The chicken or the egg? .

 

I did not believe this journalling approach would work for me, but what were the alternatives? Not many. Try potentially dangerous drugs that weren't guaranteed to work and would not effect a cure anyway? Do nothing and stay miserable? Or, try some mostly free resources and a bit of personal effort, without side-effects, and that offered a potential cure. Sign me up. Even a 10% let up in pain would be worth it.

 

So I started journalling. Shortly afterwards I discovered Dr Sarno, Dan Buglio's daily video postings on Facebook, Curable, Dr John Stracks and Dr Howard Schubiner. They were talking about neuroplastic pain (pain learned by the brain), TMS, Mindbody Syndrome and psychophysiologic disorder - all alternative names for neuroplastic symptoms. Then, pivotally, I found, Alan Gordon’s podcast, “Tell Me About Your Pain”. I might have had some doubts that journalling would ever get me out of pain, but I fully resonated with the neuroscientific approach of Alan Gordon and the Pain Psychology Centre. I already knew from my years of research a little about the brain and the how it works, so I had a tentative belief that PRT could really work for me. As I began to practice somatic tracking I began to see evidence of inconsistencies in my pain and other symptoms that had previously been hidden from me. This was like getting a foot in the door and seeing a shaft of light peeking through. I doubled down on my commitment to practising every day - and that's how I spent the pandemic. Not learning a language or baking bread, but doing somatic tracking and letting my nervous system know that it is safe. I built a daily/weekly/monthly practice. But I wouldn't be hard on myself when I fell out of it, I'd just get straight back on the horse.

 

My confidence grew the more evidence of neuroplasticity I collected. Almost imperceptibly the pain decreased in intensity, until one day I noticed the hand and arm pain that had prevented me from practicing yoga for two years was actually gone. Back shoulder and flank pain ebbed away until the only remaining pain was in the foot that had been bothering me continuously for the last four years. The story of how that pain finally left is an incredible classic tale of neuroplastic pain (TMS/Mind-body syndrome) (Blog Post TBC).

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It was very difficult to write this.If you’re reading it and have got this far, you probably already know - it’s hard to remember the relevant and interesting things when your medical file is the thickness of the whole encyclopedia. Where did it really all begin? With the onset of full-time psoriatic arthritis at 34, or did it really begin back when I was 6 years old, when my family moved between continents. When I started to have tummy-aches, and what my mother called, “Monday-itis” at school.

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Since childhood I have experienced an estimated 36 different types of symptoms that have come gone, hung around a while, or disappeared suddenly, and all the tests I’ve ever had done have shown that there is nothing serious wrong. According to the medical diagnostic criteria for psychophysiologic disorders (AKA neuroplastic symptoms/TMS/Mindbody Syndrome) they are all either definitely of neuroplastic origin, or have a significant neuroplastic component.

 

Today I am baseline symptom-free with the exception of tinnitus, which can be structural, but in my case is definitely a neuroplastic symptom - I haven’t tried dealing with it yet - it's not hurting me and it's my longest-lasting oldest friend, having been with me since I was 18 years old. I notice that the tinnitus tells me when something isn’t right - it get louder and more noticeable if I’m upset or stressed.

 

I’ve now been paying close attention for 3 years and I've observed that if I ignore stress or upset more impactful symptoms arise. I’ve come to understand that bodily symptoms tell me when something isn’t right and it means I need to take some kind of action to sort things out. 

 

This is how it works for me. It’s a different way of living that puts the inner-world front and centre. Living this way has had many rewards on top of being free of disability and pain. 

 

It might work differently for you. 

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Accordingly, my approach with coaching clients is tailored to their personal pain story and experience, as well as taking into account their natural preferences in the blend of neuroscience and emotional work.