in health

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. 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.

Woo Goggles

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.

2018

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?

Sherlock Holmes.

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.

ENOUGH

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.

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.

Treatment

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 who thought I had fibromyalgia (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 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?


Resources:

All The Rage (Saved by Sarno) from rumur on Vimeo.

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
https://www.goodreads.com/book/show/33644161-the-mindbody-prescription

Where it all began

The Great Pain Deception: Faulty Medical Advice Is Making Us Worse by Steven Ray Ozanich
https://www.goodreads.com/review/show/2242264234?book_show_action=false&from_review_page=1
A patient come expert and one of the leading thinker in this area now

The Meaning of Truth by Nicole Sachs
https://www.goodreads.com/book/show/31130757-the-meaning-of-truth
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.

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  1. Hey John,
    I forget what I clicked on to get to this email, but you are spot on! I specialize in helping people with this. I’d like to talk to you about what I do because I think you’ll be amazed and want to tell others. I’m not putting my info here because I am not trying to be disrespectful and market my wares. Please let me know how I can reach out to you. Please email me at:
    b9nvfm36thr@opayq.com

  2. Thank you for sharing. As a massage therapist, I see many clients who have this going on. When it is appropriate, I mention Dr. Sarno. Over the years, I have witnessed that many things have to line up for it to be the perfect timing for someone to understand the mind/body connection. We will all do this mind/body dance our entire lives. For the past two days my low back was unbelievably tight which it the classic, “You don’t feel supported. No one helps you.” spot for me. I realized it was worry over my tax return and sadness about our politicians and corporations. I focused on the things I am grateful for in my life and the ways I can make a difference for good in the world. I am grateful I have the ability to pay my taxes. I am grateful that I am not lost in the greed and hoarding behaviors that temp others. I am grateful. The back pain is almost gone. I wish you all the best on your journey.

  3. Hi John, many thanks for sharing your experiences, reading this I feel like we have much in common! I’ve been an RSI sufferer for 10 years. I’m quite convinced it’s TMS, however I have unfortunately had little relief using the associated therapeutic methods. I would very much appreciate and further tips or insight that worked for you (either on here or pls feel free to contact me directly). Awesome that you have managed to get some relief after such a long time, you must feel epic

    • Hi Rich.

      I’ve been mulling this over. Ok – Sorry if this is a completely obvious but let’s get the basics out of the way. If you haven’t already: immediately leave any RSI-based support groups. I think one of many big turning points for me was leaving an RSI group and joining the TMS group. Likewise unsubscribe from any RSI mailing lists, or RSS feeds. Get rid of any RSI books. And obviously as mentioned above get rid of any special keyboards, or mice. Banish anything you bought for rsi-based exercises or stretches. Basically, get rid of anything that reinforces the idea that you ever had RSI. You never did. I never did. Try and forget everything you ever learned or read about RSI.

      The one area in this realm of banishing rsi props that I’ve really struggled with is screen breaks. That is the one thing I clutched onto until recently. I always had software that forced me to take a break every X number of minutes. I used to increase/reduce this depending on my pain levels. And I would really struggle to get through a day without many mini-breaks. Even when I was well on the road to recovery. I always wondered if this was still necessary or was it just reinforcing the idea that I needed a physical break? I discussed this on the group and some people think there is some logic behind taking a computer break even though it is TMS pain. But more recently I’ve been leaving the break software disabled completely.

      One other thing is, I’m wondering if you struggle with procrastination at all? At work or at home? I have a strong suspicion that this can have a big impact on TMS that manifests as RSI. We’re at a computer we’re in a lot of pain. So instead of working we go off to other web sites and waste time because it feels easier and less painful. But it’s not really. Because then we get all these emotions: guilt, remorse, fear of failure, despair that we can’t work / pay the mortgage / feed the family. Which leads to massive stress and crisis. I think my most pain-free days have been where I’ve actually got a solid day’s work done and the day has gone quicker, and with less negative emotions and more feelings of self-worth. I would recommend some hardcore distraction block software to help enforce this. Hardcore = impossible to stop once running. None of those namby pamby browser extensions that you can easily disable. For a PC: https://getcoldturkey.com/ and set up the schedule. For a mac: https://selfcontrolapp.com/ + https://github.com/andreasgrill/auto-selfcontrol. Repeat on your phone. https://offtime.es – whether at work or at home, I’d recommend doing everything you can to avoid wasting time on social media or games if you find yourself getting sucked in for periods longer than you’d like. Especially if you feel guilty afterwards. All that guilt and shame feeds into your TMS. I’ve never heard anyone else discuss that but I’ve a theory that procrastination throughout the whole day has an impact. See also: http://humanetech.com/take-control/ and https://phonebreakup.com/

      Other than that. All the usual stuff: Read the books. Do the work: self-talk, journaling, meditation, therapy if possible. Also once you’ve read the books, I think the podcasts are great for constantly feeding your brain and hearing the success stories. Subscribe to Mind and Fitness. And also Mindbody Mastery.

      Final suggestion is almost a contradiction to the above suggestion. If it’s not working, Every now and then take a break from it all. Unfollow the facebook feed of your TMS support groups. Stop reading the books. Stop listening to the podcasts. Give your mind some downtime to soak it all in for a while. Obsessing over TMS and identifying with tms as a label is almost as unhealthy as obsessing with RSI as a label for your pain. So have a break every now and before getting back to the barrage of podcasts etc.

      Good luck! catch me on jbraine@gmail.com if you want to talk some more.

  4. What a great post! I’ve been working on the mind/body approach now for only a few months, after years of going down other routes. John Sarno’s work is inspirational. Thank you for writing this. It’s great to hear about the experience of others that I can relate to because the invisibility of TMS can be very isolating. Recently been using the ‘Curable App’ which promotes Dr. Sarno’s ideas and gives practical help on all of the things that you mention. It’s a great help and definitely worth checking out.