I cured my RSI / Fibromyalgia / Chronic Fatigue with Jedi Mind tricks!

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.

The worst day of my life

(This is a post I wrote years ago but never published. There’s so much talk about anxiety recently, that I thought I’d publish it)

It was one of the most painful experiences of my life but I remember that I didn’t scream. I was in too much pain to waste energy screaming. My face was contorted with pain and confusion. And I was listening for a snap, because my arms and legs were doing their best to break their own bones, bending into crazy angles totally out of my control. And the pain was unbearable.

Many years have passed since that night and there have been quite a few contenders for “Worst day of my life” but its right up there at the top of the list. I’d been sick for about a year. I had an extreme case of Social Anxiety. I had to stop working. I hardly left the house. I couldn’t use public transport. Interactions with most people was excruciating.  I was attending a Mental Health Clinic, and the doctors I saw, were unfortunately awful; terribly misinformed and part of a very flawed mental health system.

I was never properly diagnosed. They were just chucking all kinds of pills at me. Each dose of medication had a zero positive effect and many terrible side effects. Some were almost worse than the illness they were supposed to fix. One cursed me with blurred vision, stripping me of books, drawing, or TV, leaving me with little to distract me from my anxious thoughts.

Another pill counteracted the blurred vision but in turn made me restless. I say restless, like a say vinegar on an open wound is a little bit sore. It was a sickening restlessness. When you sat you had to stand and when you stood you had to walk and when you walked you wanted to sit again and when you sat again you’d just rock back and forth. You’ve seen it haven’t you? Well they’re not crazy people. They’ve just been given crazy medication. Update: I’ve just looked this up, and it has a name: Akathisia.

Next on the list was an injection to counteract the Akasthisia. But this one had a side-effect too. They don’t tell you that though. They don’t want to scare you. As it’s really bad and only happens to rare individuals.  So back to the attic…

My hand was the first to go, it started to bend forward at the wrist and I couldn’t get it back, then my whole arm twisted backward. My other arm had gone around my back and was doing its best to break. All my limbs started twisting and contorting. I had to use all my strength to stop my limbs from breaking themselves. It all happened so quickly. I’d collapsed onto the bed in a fight with myself, suddenly in a terrible horror movie.

After the initial shock, I dragged myself off the bed and somehow got down two flights of stairs, which isn’t easy when you’re busy trying to break all your major bones. I’d got to the phone and managed to dial 999 somehow but by the time someone answered I was just on the floor screaming with the phone dangling on its cord and I couldn’t manage to ask for an ambulance. The operator eventually hung up.

After maybe ten minutes it began to ease up. One of my brothers arrived home. I told him what had happened. He didn’t get it. And just looked at me as if I’d two heads.

I went back up to the attic to gather myself. Then my hand started twisting again. I shouted down the stairs ITS STARTING AGAIN. He ran up the stairs and when he saw me writhing around the floor doing my impression of Christie Brown going through an Exorcism, his jaw dropped and he turned white .

Our GP arrived very quickly. I was never happier to see a large syringe come out of a bag. Whatever he gave me stopped the side effect straight away. The next day, my medication was changed again. A month later, I voluntarily stopped all medication, and stopped attending the mental health clinic. Instead I started a very slow and long journey of accepting my condition and learning to cope with it. This acceptance led to a level of confidence that was enough to start my first job since I got sick, in a phone printing factory. My confidence grew, I got better jobs, I got on with the rest of my life. Social Phobia never fully went away, it just grew more manageable.  End of story.

Update: I’ve been looking this up again. And I’m pretty sure the medication was Mellaril. An extreme medication for Schizophrenia known to cause an “Acute Dystonic Reaction” which is what’s described above. NB: I had zero symptoms of Schizophrenia. I had a classic case of extreme Social Anxiety. Such was the state of mental health care in Ireland 20 years ago.