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Why Fibro Fog Is My Most Devastating Symptom

Most of us have put the milk in the cupboard and the cereal in the fridge. Most of us have occasionally misplaced our keys, struggled to concentrate during conversations or had difficulty concentrating on paperwork. However, for people with fibromyalgia, these problems happen more frequently and can be more severe.

The ability to put a sentence together and know that the fridge is called a fridge, the ability to understand what someone has told you, the ability to partake in conversation and the ability to make decisions are things we all take for granted. These are basic skills which the majority of human beings develop from a young age. You don’t ever think that these simple things will become problematic – much less non-existent. The usual symptoms of fibromyalgia, I expect, are familiar to those who have this beast. However the symptom that is the most distressing for me is “fibro fog.”

I sit there having a conversation and forget what I am saying mid-sentence. I forget the actual topic we are talking about. I do the grocery shopping and when I come in, my son helps me to put the food away. He asks me where to put the oranges but I can’t think of the name so I “hand signal” a bowl shape and point to the fruit bowl. I am selling my care which in the past would have been effortless, but now I am worried about the decisions I have to make, so I ask my husband to do it for me. I sit in my car and wonder for a while: where am I going? Then: how do I get there?

I was once a feisty, independent women. I knew what I wanted and how I would get it. I had a career I was proud of and worked hard for, but I am a different person now. I am losing self-belief, self-confidence, friends and a social life. I’m losing the ability to live the life I once had. I have to think differently, I have changed the way I do things and I have to cope with the fact that I am a different person now. I have to use my brain differently and I am learning new ways of doing this. All of this has had an enormous effect on my family and it seems, from forums and social media, that these are common problems in all fibromyalgia patients.

Cognitive impairment is a common manifestation of fibromyalgia and some may argue that it is more disabling than pain and fatigue. Having had fibromyalgia for 15 years, I have seen a steady progression in all of my symptoms including reduced cognition. Since experiencing significant “fog,” particularly during flare-ups, which incidentally are about every 10-14 days, I have not been able to work. My work as an advanced nurse practitioner involves conversation about health and illness. I need skills in decision making and the ability to explain quite complex physiology in an understandable way. Being a wife, mother and gatekeeper to everything in the household requires the same skills. It doesn’t matter what level of academic success you have achieved or what you do to earn money; impaired cognition has the same devastating effect on us all. According to “Fibromyalgia and cognition” by JM Glass, there is evidence that fibro fog may be exacerbated by the presence of depression, anxiety, sleep problems, endocrine disturbances and pain. What remains unclear is what is causing these cognitive challenges.

In a 2015 study, 60 people were observed – 30 with fibromyalgia and 30 without. Researchers found various impairments in attention and memory in the fibromyalgia patients when compared with healthy controls. They also found that these impairments were independent of depressive symptoms which is significant, as many clinicians will assume depression when cognition problems occur.

According to P.H.F. Bertolucci and F.F. de Oliviera in “Cognitive Impairment in Fibromyalgia,” there is some evidence that the central nervous system is functionally and structurally affected by fibromyalgia but there are no naturally occurring molecules or genes that can be identified on scans that detect and quantify these cognitive disturbances. There are, nonetheless, various theories about reduced oxygen levels and disturbances in certain brain chemicals which are responsible for the fogginess.

The lack of physiological evidence means that traditional scales and tests or even self-reported questionnaires are currently the only form of diagnosis. In clinical practice this may provide an easy screen for the presence of cognitive impairment in those of us with fibromyalgia; although, having said this, I have never been offered any tests to identify severity, and in my work I have never come across cognition tests specifically designed for fibromyalgia. This is important as fibro fog is very different to other cognitive disorders because it waxes and wanes over the course of our lives. It seems that “fibro fog” – like the plethora of other symptoms – is just something else we have to cope with and live with.

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Thinkstock photo via fizkes.