Life with fibromyalgia: It’s not easy, but possible to find joy

“Excuse me while I kiss the sky”, Jimi Hendrix

image1 (1)So, am I in such a lovely warm place kissing this beautiful sky? No, instead I am in the midst of cold winter.

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Weather and fibromyalgia:

Already my muscles have begun to freeze up. While it has not been an unusually cold winter so far, the rise and fall of temperatures has been very traumatic for my body. One day it’s -11C, then the next it is +8 C. Yet, I read from the wonderful pain blogs of Bronnie Thompson of New Zealand (adiemusfree) where it is summer, that the temperatures there are soaring in the 30C range. That too would set my body a whirling! What are we to do? Weather is beyond our control and yet these fibro bodies of ours note every little barometric change by signalling “alert, danger ahead”. We are often gripped with anxiety but cannot tell why: sometimes it is just a weather change.

Trigger warnings can be subtle and confusing. Our bodies are adapting to changes on a constant basis, often unconsciously. The highly sensitive fibro bodies of ours, filled with inflammation in our muscles and joints, usually brought on by anxiety, can detect changes within our environment which many other bodies cannot. We respond so dramatically to what’s going on, often without realizing what is happening. Our nervous systems are so finely tuned that we cannot always locate the less obvious triggers for a fibro flare-up. It’s not easy having a hyper-aroused nervous system, constantly in a hyper-vigilant state, wanting to alert the brain to real or imagined danger. Our challenges are many.

My left hip

I have recently listened to a podcast with Bronnie Thompson (in association with ChewsHealth.co.uk, The Physio Matters Podcast #22) in which she points out that fibromyalgia is a neurological disorder, not rheumatological, that the pain we experience is neuropathic. Furthermore, she advises that there are few pharmacological options, a fact we have all discovered on our own. It was her assertion that fibro commonly results in joint disorders. For me it has been my left hip. The pain has been slowly becoming progressively worse over the past decade, sometimes excruciating to the point of immobility. Exercise has become curtailed. While I have had the diagnosis of bursitis, torn medius and minimus left buttock muscles, herniated L4-5 disc, aging and some degree of arthritis, I have been told a hip replacement would not help fix the problem. I have been left to my own devices. I have to find something that works.

Chiropractic or osteopathic treatments have not been effective. Massage has not helped. Exercise is somewhat limited as walking exacerbates the pain. Self management is imperative for some degree of relief. As Bronnie Thompson points out the key to treating chronic pain has to be bio-psycho-social in nature. I have been struggling to find something that works. Currently a physiotherapist is using gentle cranial bone mobilization and then he will use nerve mobilization. The premise is that by treating the cranial area, the nervous system will send signals to other areas of the body (notably the hip) that there is no danger and relaxation will occur. The treatment is gentle, non invasive, and incorporates bio as well as psycho approaches. The social? I guess not. That part seems up to me. It seems unusual that he will be treating my hip by craniofacial means, but the jury is out and I await the results. It isn’t easy working with this hyper-aroused nervous system! I tell myself that this pain is never going to ease, but it often does, perhaps only somewhat at times, but it isn’t always raging. I tell myself these horror stories, but stories are just stories, they often aren’t fact.

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Finding joy

In the meantime the cold, the ache in the hip and this fibromyalgia body of mine do have some sights that counteract the “dead of winter” blues. There is beauty as the days get longer and there is more light than there was a month ago. Weather is, after all, temporary and flare ups are as well. Here are scenes from the south shore of Nova Scotia and although the sky is dark the view is quite awesome! These images help to live in the moment and to remember to breathe!

Theodore Roosevelt : “Do what you can with what you have with where you are”.

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