My Story

It was December of 2004 when my fingers and toes swelled up like sausages and my elbows and knees ballooned. I was in severe pain, the mother of two little boys under 4. Life became impossibly difficult. I struggled with everyday tasks, like cleaning, shopping and cooking - just trying to use a knife was excruciatingly painful. Changing positions from sitting to standing, or picking my kids was traumatic. I did it anyway.

 

The mornings were worst - it took me ten minutes to get out of the bedroom, five to get down the stairs. I could hardly bear to touch anything because of pain in my hands and I couldn’t drive the car before midday, when the pain and stiffness would start to ease off, and I would be more my usual self in the afternoons. Yet I was still doing it all, hanging on by a thread. It was a very lonely experience - nobody seemed to notice or care how much pain I was in or how I struggled to cope. After all, I was still doing all the things...

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It was 6 months before I got to see a rheumatologist. Diagnosis was straightforward - psoriatic arthritis. I already knew. It wasn’t my first run-in with the disease, but it was the first lasting episode and the first time I received any treatment. I had been misdiagnosed for ten years, so getting an “official” diagnosis was nearly as exciting as getting treated. The evidence I needed to show the people who told me, "it's all in your head". Something really was wrong, and I now had a verifiable reason to ask for help. 

 

Within a couple of weeks all the swelling had gone. All was well with my joints for 5 years. I got my confidence back, went out to work my career. Then a problem was spotted in my blood work and I was taken off the medication. A hiatus that began my nightmare with chronic pain.

 

Around this time I had stayed in a motel overnight for a work event. The bed was hard and I couldn't sleep. By morning, I had pain in my left lower back, hip and knee - a pulsing electric-shock pain that wouldn'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 the 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 arthritis, and I didn’t believe them. It hurt to get clothes on and off; it hurt to walk, to sit, and to move (luckily my kids were a lot older now).

 

The experts diagnised fibromyalgia, although the pain sites didn’t really fit the right pattern. I didn't like the diagnosis. "It's not a real illness, is it?", some people said. The GP tried several different pain medications and persuaded me to try an anti-depressant, saying, "You seem depressed". "I'm not depressed," I said.​

 

Nothing helped, and eventually I gave in and admitted to myself that I might be depressed. Now I see that anyone with the pain and symptoms I was suffering each day has every right to be depressed. I was diagnosed with generalised anxiety disorder and depression. Anti-depressant and anti-anxiety medication did help me get some sleep (I was also 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, thanks to medication, and the pain was going nowhere.

 

After about 9 months on antidepressants, I realised they weren't fixing me, so I stopped taking them and started looking for answers. The search went on for twelve years.

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I trawled through medical research papers, visited specialists, tried alternative and complementary medicine. I tried acupuncture, which became increasingly painful to the point I couldn't do it any longer. I tried massage, the chiropractor, osteopathy, physiotherapists, psychologists. I waited on NHS waiting lists for an amount of time that adds up to years . I saw podiatrists, occupational health, I had hydrotherapy and saw radiology, rheumatology and orthopaedics. I tried Chinese medical herbs and several elimination diets - NONE. OF. IT. WORKED.

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My pain story is ALL about where the pain was in my body and the various medications and treatments I tried, the work I was able to do or not do. The pain didn't move every day, or even every week, but it would shift around over longer stretches of time, with enough time behind me to see it. It never occurred to me, or anyone, to look at what had been going on in my life - at the story behind the pain.

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Yoga was the one thing I had tried that seemed worth sticking at - there was something. It didn’t stop the pain; sometimes it made it worse, but it had a pleasant effect on my brain and body that I had not experienced before. I went to a yoga workshop, which, to my horror, was about rebalancing “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 now been taking a prescription anti-inflammatory (indicated for short-term use only) for fifteen years! It suddenly dawned on me one very painful morning that social media and podcasts were now a thing, and I hadn't looked for resources and solutions that way yet. Suddenly I was connected with all these other people having similar problems, people who got it. 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 recovered.

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I started journalling, not believing it would work for me at all, 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, personal effort, no side-effects, a possible cure? Even a 10% let-up in pain would be worth the effort, I thought.

 

Soon 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 the same neuroplastic symptom conditions. Then I found Alan Gordon’s podcast, “Tell Me About Your Pain”. I fully resonated with the neuroscientific approach of the Pain Psychology Centre. I knew from my years of research a little bit about the brain, so I had a tiny little grain of belief that PRT might really work for me.

 

As I began to practice somatic tracking, I started to notice inconsistencies in the pain and in other symptoms that were previously hidden. It's like being in a dark room, getting your foot in the door and seeing a shaft of light peek through. I practiced every day, my confidence growing slowly - and that's how I spent the pandemic - not learning a language or baking bread - doing somatic tracking and trying to tell my nervous system that it's safe.

 

The more evidence of neuroplasticity I collected, the more confident I grew that the symptoms were neuroplastic and could resolve. Almost imperceptibly, the pain decreased in intensity, until one day I noticed the hand and arm pain that had prevented me from practising yoga for two years was actually gone. Back, shoulder and flank pain ebbed away until the only remaining pain was in one foot, which had plagued me continuously for four years. The story of how my foot pain eventually resolved is an incredible classic tale of neuroplasticity. I'll add it to the site one day.

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It was very difficult to write this. If you’re reading and have got this far, you probably already know that it’s hard to recall and recount relevant and interesting things when your medical file is the thickness of a building block. Where did it really all begin? With psoriatic arthritis at the age of 34? Or did it really begin at 6 years old, when we moved continents - when I started a new school with tummy aches and (what my mother called) “Monday-itis”.

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Since childhood, I've experienced up to 36 different types of symptoms, acutely, chronically, maybe suddenly disappearing. All the tests I’ve had done have revealed no medical explanation. According to the medical diagnostic criteria for psychophysiologic disorders (neuroplastic symptoms/TMS/Mindbody Syndrome) all these symptoms are either neuroplastic or have a significant neuroplastic component.

 

Today I am baseline symptom-free, with flare-ups occurring during times of extreme emotional stress. I’ve now been paying close attention to my nervous system for 6 years and have observed that if I ignore or minimise stress and upset, impactful symptoms arise shortly. I’ve come to understand that bodily symptoms tell me when something isn’t right, and mean that I need to take some kind of action to sort things out. 

 

This is how life works for me. It’s a different way of living that puts one's inner world front and centre, having many additional rewards beyond the resolution of pain and disability. 

 

Depending on what your body and brain are trying to communicate, it might work differently for you, and accordingly, my approach is tailored to your personal pain story and experience.