“No Pain, No Pain”

9 07 2018

So a year and a half ago, I met Adam, The Fibro Guy, at a meeting of the Edinburgh Ehlers-Danlos Syndome support group. Over the years, I have had many interactions with health professionals over the years and none of them, not one, spoke half as much sense as Adam did. He understood my condition, how I moved and what I needed to do to reduce pain way better than any of them.

He gave me a series of exercises which helped almost immediately and later recruited me as part of a group testing a programme of movements specifically for EDS people. The 8 week programme made a tremendous difference to me. My pain lessened, my movement was better, I could run again. It was fabulous.

But in the absence of a follow up programme I could commit to (I couldn’t afford to join a gym), I let it slip and full time work, severe anaemia, a LOT of stress and a bout of severe depression has led me back to square 1. I’m now in almost continual pain and a cocktail of Co-Dydramol, Naproxen and Tramadol. None of which I am happy to take and none of it addresses the core problem.

Adam then sent me a copy of his book, co-written with Dr Mhairi Hunter, “No Pain, No Pain: Building the foundation for recovery from fibromyalgia.” I have read it with interest and no small amount of horror.

In it, they talk about an alternative theory of pain which provides a plausible new account to oppose the classic theory of pain that we’ve all grown up with. Chronic pain, as I understand it, is not a sensation received by the body on encountering a stimulus that may cause damage but a sensation PRODUCED by the subconscious brain to prevent actions that may cause damage similar to that encountered previously. So in Fibro, the pain you suffer is not caused by tissue damage (which to be fair, has never been found in Fibro sufferers) but by your own brain being over protective.

This is fascinating because to me, it makes sense. I don’t have Fibro, or rather, the fibromyalgia pain I suffer is not as clear cut to me because EDS does include physical damage as I understand it. It’s not clear to me how hypermobility EDS and the non existent condition of Fibromyalgia interact.

There is tissue damage? Or are the physical symptoms I feel (principally very, very tight muscles) also caused by my brain? That makes a certain amount of sense in that I know my back muscles are ridiculously tight to give my body some stability, tighter than they need to be. This is produced by my brain and I have often wondered how to trick or persuade my brain to relax them a little and, to be honest, it is probably what the initial exercises I did with Adam achieved.

But my tight back muscles have caused leg, arm and wrist pain because the back muscles are unable to move enough to adequately support my limbs. Is the leg, arm and wrist pain also caused by a protection action? Or is the inflammation caused by tissue damage from repetitive strain?

Hopefully, once I have completely finished the book (I’m on part 3), I will fire a set of questions over to Adam. Maybe he can make it make sense to me.

And the horror? The idea that my own subconscious has been the cause of 8 to 9 years of chronic severe pain is the most profoundly depressing thing I have ever read. I know it’s not a blame thing, blame is rarely useful for positive action, but it feeds into my existing autistic and depressive narrative. My brain cannot navigate social issues, it cannot keep me free from depression and now it is gratuitously causing pain? How much more useless can I be?

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