I’m never too sure if it’s a good idea writing about such personal matters or not. It’s not that I’ve the slightest problem talking about them. It’s more a wonder if people would rather I just shut up and keep this stuff to myself. But this is a conversation I keep having with friends lately when they ask “how’s things?”, a story I’ve found myself telling over and over recently. What’s often surprising is not that people don’t know that I have finally recovered… but how few people knew I’ve really been struggling with chronic pain for about 15 years. That’s the thing with chronic pain. It’s a bit like mental illness; They’re both invisible, hard to define, hard to label, and therefore hard to communicate with any great accuracy. So you tend not to talk about them much. A lot of my pain only happened while I was at work, so it was mostly separate from social life. Though I remember at one stage I could hardly even hold a pint glass.
What the hell are you talking about anyway?
Ok – between 2002 and 2005 I started getting agonising pain in my arms and neck, which I’ve had on and off since then. I always thought it was Repetitive Strain Injury, as it started when I was doing a temp data entry job with badly designed software that required me to repetitively strain my fingers across certain key combinations for a few months. And I only got this pain when using a computer, particularly repetitive clicking or typing. A diagnosis of RSI seemed like a no-brainer. But I also got sore legs if at a desk all day, and massively fatigued when standing or walking, or just general fatigue.
What did you do about it?
I spent years going to doctors, physios, chiropractors, massage therapy, more physios, and physios who were “experts in RSI”. I read books about RSI. I bought every goddamn crazy keyboard, mouse and input device over the years. I had a weird back brace and arm splints. I had pain-relieving gel packs and sprays. I bought all kinds of exercise gear, self-massage equipment, and ergonomic bits and bobs. I spent hours doing stretches and exercises. I tried yoga. I became an expert in ergonomics. I had some occasional success, which in hindsight was a temporary placebo. But lots of people used to ask me for advice about RSI. And I even had a Web site about “Beating RSI”. But the pain always came back. I got rid of the Web site. The pain got really bad again. At its worst, I often felt like cutting off my biceps off with a knife. Not that I actually would of course but that’s what it felt like. And pain that bad is very tiring. So terrible chronic fatigue came with the chronic pain. And with that would come occasional depression. Not proper clinical depression, just a great sense of doom & misery while I was in pain.
In 2009 I bought a book I kept hearing about called “The Mindbody Prescription” by Doctor John Sarno. It was all about healing pain with the mind. There were a lot of success stories all over the Internet by people recovering from RSI with this method. It turned out even my father-in-law had a copy and it helped with his back pain. But I have never had any time for alternative medicine, or faith healing, or religion. Or anything like that. I was always very Anti “woo”. No time for it whatsoever. I was/am a complete cynic. So I dismissed it as something that might work for other people but could never work for me. The baby sat in that dirty bathwater for many years.
Roll on to 2018 and my pain was worse than ever. So I tried the GP route again. She thought I had Fibromyalgia. I had all the symptoms. But she sent me for a cat scan to rule out anything physical. The scan revealed trapped nerves and slipped disks in my neck. But the GP still thought it was Fibromyalgia (Btw “Fibromyalgia” is a bit of a scapegoat disease. It’s for people who are in lots of pain and fatigue and lots of other symptoms but doctors can’t really figure out why). We try physio one more time. After a few months, the physio shakes her head like many others and apologises. She couldn’t do anything for me. Couldn’t figure out what the pain is from. Just before her, I had an appointment with another private physio who couldn’t find anything wrong but asks me “What’s going on in your life?”.
This question from a physio.
Taking off the Woo Googles
So I had spent 15 or so years trying every possible physical option apart from invasive surgery. I bought all the hardware. I did all the physio. I did all the stretching. I had the best ergonmic setup. I’d seen all the experts. I did everything physically possible.
“How often have I said to you that when you have eliminated the impossible, whatever remains, however improbable, must be the truth?
So I started to become more convinced that there was something else going on here and that all my separate health issues were somehow connected: Physical pain. Chronic Fatigue. Indigestion. Dizzy spells. Misophonia. Anxiety. Stress. And finally realizing that no physical solution was going to work. Time to crack open that book again; The Mind Body Prescription, and oh my fucking god, the guy starts describing me to a tee. He starts by asking if I’m the type of person who has always worried too much what other people think of me, if I’m a perfectionist, and a people pleaser. He’s got my attention. He then explains that TMS (Tension myositis syndrome ) is highly prominent with people like me. The idea he has discovered is that the autonomic nervous system has developed to deal with modern day stresses by creating physical pain to distract us from emotional thoughts, and traumas we have never properly processed.
Back to 2005/6
So I started thinking back to when the pain started and it’s all so goddamn obvious in hindsight. It was nothing to do with data entry. Here’s what was happening at the same time:
- Living with the misery of infertility and month after month of failed pregnancies, and failed IUIs and IVF
- Multiple miscarriages
- A manipulative project manager from hell
- Father had died
- Unbelievable family stress. Another family member moved into my mum’s house and forced her out from her own home, first into St. John of Gods Psychiatric hospital, then a nursing home she was too young for. We couldn’t get him out of the house. This went on for almost two years before we settled outside a court with a big pay off to get him out. Meanwhile, my mum had a stroke, and so ultimately did need a nursing home
- Worst of all was that while we were fighting for the welfare of my mum, he had somehow convinced many other family members that we were the bad guys. He even signed her into one of many nursing homes under our name; proper Machiavellian shit. And that’s just a very brief summary. I found all this incredibly stressful.
- I’ve also a long history of social anxiety that I was mostly over by then but not fully
All this in the same year or so. This was when my “RSI” got really bad.
(But even everyday stresses can build up and ultimately cause TMS. It doesn’t have to be anything major.)
Back to the future
Back to more recent times. The start of 2018: my pain is worse than ever. I now have a daughter who’s mental health issues have become increasingly worse, which has been causing chaos and misery for herself and the whole family. And no surprise (as any statistic on parents of children with special needs will tell you) this creates incredible marital strain also. Oh and remember the mother situation from 2005? Well we (my wife has been wonderful in this regard) are still looking after her. My mother also has mental health and behavioural issues which can be incredibly stressful to manage. Let’s chuck in a teenager and a midlife crisis for the laugh.
So it was all in your head?
No no no no. The physical pain was very real. But the root cause was emotional. Did you ever get the shakes or a funny stomach before public speaking? Is that all in your head? No – but the root cause of that is also emotional. This is the exact same thing. Just more complex.
It’s not a trapped nerve. It’s not a slipped disk. It’s not fibromyalgia. It’s not RSI. It’s just emotions. It’s an evolutionary mixup. Our lizard brain still hasn’t quite managed how to deal with modern stress and this it’s best attempt. (Recent post-morten studies have revealed that most people have slipped disks and bone structure issues that have NOT expressed as pain.) But to be clear, the brain actually causes real pain in your neck, arms, back, whatever. It’s not in your head.
Nicole Sachs has a fantastic way of putting it: “the pain isn’t in your head but the solution isn’t in your body”
Yeah stress can make everything worse, we know that. So what?
No this isn’t stress making things worse. The idea here is that stress, repressed rage and emotions are the sole cause of the pain. Particularly with long-running chronic pain. Or pain that continues long after the typical healing time.
So how do you treat TMS ( Tension Myoneural Syndrome / aka The Mindbody Syndrome )? Lots of stuff: Knowledge. Acceptance. Dealing with emotions. Expressing emotions properly.
So like a cripple throwing away his crutches, I got rid of my ergonomic keyboard, my stupid mouse and my lumbar roll. I stopped doing RSI stretches, and ergonomic exercises. I stopped physio exercises. I never went back to the doctor my pain (she’s actually a really good doctor though, just didn’t know about TMS). I read a good few books by TMS experts. I watched a movie called All The Rage. I joined a fantastic TMS support group. I started seeing a psychotherapist. I started journaling about emotions. I learned to cry more. I meditated more. I started running and exercising more. I read self-help books about stuff like self-compassion. I went all in. A younger me would have been in hysterics at this new age zen master eejit. I really wouldn’t have had any time for any of this stuff twenty or so years ago. And most other people finding success with these methods are also down to earth people. This isn’t the latest fad in hippy woo.
So what happened?
My pain went away!
Not 100%. But the worst of it slowly ebbed away month after month. I certainly didn’t want to cut my biceps off with a knife any more. My chronic fatigue went away. I stopped having indigestion. Running pains in my legs/knees went away. Dizzy spells stopped. My feelings of having a midlife crisis and finding work stressful went away. I’ve hardly even had a cold all year. I still can’t believe it – but it really worked. This isn’t woo. TMS makes scientific sense but it’s very hard to test properly, so modern western medicine is still very cynical about Sarno’s work. Not surprising given that it undermines so much modern medicine. Particularly medication. But there’s nothing to sell here except knowledge.
I started all this last January. And a year later, my life is very different. Not perfect by a long shot. All the same daily stressors are still there. But how I deal with them is quite different now. And it doesn’t result in physical pain any more. Well not much. I’m still a work in progress.
So “how’s things?” You ask?
Grand – yerself?
update: October 2019. I’m pretty 99% free of chronic pain
This stuff isn’t new. Here’s an ABC special about Doctor Sarno from 1999.
If you have a passing interest, I highly recommend Eddy Lindenstein’s Mind and fitness podcast. A very down to earth podcast interviewing lots of experts and doctors in this growing field of medicine:https://itunes.apple.com/us/podcast/the-mind-and-fitness-podcast/id1291091376?mt=2
The Mindbody Prescription by Doctor John Sarno
Where it all began
The Great Pain Deception: Faulty Medical Advice Is Making Us Worse by Steven Ray Ozanich
A patient come expert and one of the leading thinker in this area now
The Meaning of Truth by Nicole Sachs
The title is very Oprah-esque but this is a great little book about dealing with this stuff via journalling. Spoiler: write down your darkest rage-filled thoughts that you would never show anyone. Then burn it / delete it.