“Coping with a chronic illness is work”, Carolyn Thomas
A very new book has just been published by Carolyn Thomas: A Woman’s Guide to Living with Heart Disease, Baltimore: Johns Hopkins University Press, 2017. It is one of a kind! Finally, a book that allows the woman with heart disease or those with a family history of heart disease, to pour over it and sigh with relief as questions about the leading cause of death among women is now in print as a source of expert information. Furthermore, it is written in a style everyone can understand.
“There’s someone in my head, but it’s not me”, Pink Floyd
Just as I thought that I had nothing new to write about I have discovered that the weird ‘brain’ sensations I have, which only lasts for moments, are common among those of us with this frustrating condition of fibromyalgia! I have had these peculiar short lived experiences that are followed by dizziness for several years now. The episodes are almost like a small temporary memory loss, almost feeling faint-like. I don’t have the language to describe them. It is as though my skull almost empties for a few seconds. It is somewhat creepy to imagine a skull without a brain.
Many have written that coming off a medication brings about these zaps/pings/shocks/memory loss/dizziness occurrences. But, I have not come off of any medications. Still, I have read that being on Gabapentin can cause them. I do take 300 to 400 mgs per day. Is this what is causing them? The attacks aren’t too frequent but certainly do cause slight dizziness and loss of balance. I have often had electrical shocks throughout my body- this isn’t the same thing. I have written about ‘brain fog’ several times – again, this isn’t exactly the same thing. I have had vertigo- it is different from that as well. I wish I had the language to describe the episodes. It’s as though my brain loses a second or two into the air, is not in my own body!
“Having that sense of anger leads people to actually feel some power in what otherwise is a maddening situation”, Jennifer Lerner
There can be little doubt that emotions play a large part in a fibromyalgia flare-up. The emotions can be happy , sad, fearful, anxious or any of the myriad of those which affect us through out the day. While I have often written about the ways in which we can work with emotions I have been struck with the continuous evidence based research regarding meditation and exercise and so I try to do so every day.
“Memory, the warder of the brain”,William Shakespeare
This is it!!! In my view this is the most significant in-sight I have had about the pain of fibromyalgia. It has been a long and interesting journey beginning with my book in which I laid the foundation about why women are more prone to developing FMS and my conclusion that it is actually caused by an over-aroused nervous system. However, while this was the first step, and the primary one, more has been revealed to me and I am very excited over the unlimited hope there could be for us all. I still don’t have all the answers and it may be that I am presenting information that is not quite accurate, but it has been a steep learning curve and requires much un-learning, which is said to be more difficult than learning. It all began with my physiotherapist, Nick Matheson who brought me to a path which I had never travelled down before, that is, to explore the relationship of pain and the brain, rather than looking simply at fibromyalgia as the result of a hyper-aroused nervous system. The journey down this path is not yet complete so I welcome comments from others who are more learned in this domain than I am.
“Once it is understood that sufferings cannot be compared, then it is possible to speak of different sufferings in the same story, because there is no comparison”, Arthur W. Frank
Here it is… one awful day, living with the winds and rains of Hurricane Hanna and my brain tells my body something unusual is happening. The neurotransmitters are in overdrive. The itching has returned; it is everywhere on my body and nothing relieves it…not the Epsom Salts baths nor the Aveeno Anti-Itch lotion. I can’t get comfortable and my nerve endings are on fire. Only by constant massaging of my body parts do I get some degree of relief. When the hurricane passes us by I know the itching will subside until the next stressful event or a dramatic weather change.