For most of those who live with fibromyalgia, it takes many years to understand the fact that the person who was once finally dies and that a new version of the person is reborn. The checklist of what fibromyalgia steals mentally and physically seems to grow more with each passing day. At the beginning of my trip, when I was going through the five stages of pain, anger was a common emotion when I observed how my life changed from the inside out and I could do very little about it.
“Losing my memory along with everything else is just too much to bear and I’m terrified”
As I approach my tenth year of life with fibromyalgia, I can say that I have made peace with and accepted the fact that I am a new person and will never exist as I was before fibromyalgia. However, I would be lying if I did not say that I am extremely worried and terrified by the fact that I am losing more of my short-term memory with each passing day. But before addressing my personal challenges with memory loss, let me share some of the general facts about fibromyalgia and memory loss.
Memory loss and fibro
According to the National Association of Fibromyalgia Research, 46% of patients with fibro suffer from fibromyalgia and impaired memory. The National Association of Fibromyalgia and Chronic Pain explains: “… we have found that patients with FM perform poorer than controls matched by age and education in tests of several different types of cognitive function.”
According to a 2015 review in Rheumatology International , some patients report that the loss of mental clarity can be even more devastating than the pain and fatigue associated with fibromyalgia. Fibrous fog may manifest itself in different ways in different people, but some of the most common symptoms include:
- loss of short-term memory
- lose objects
- distract yourself easily
- forgetting plans
- difficulty in carrying out conversations
- inability to remember new information
A study from Korea, published in 2012, concluded that ” the deficit of working memory found in patients with FM can be attributed to differences in the neural activation of the frontoparietal memory network and may be due to both pain and depression and anxiety associated with pain. “
Another study showed that patients with fibromyalgia are not getting enough oxygen to different parts of their brain. The Arthritis Foundation speculates that a possible reason for this could be that the central nervous system of a patient with fibro is out of place, which causes changes in the blood vessels of the brain. Thus, impaired cognitive function.
Although it is sometimes thought that cognitive difficulties are “all in the head of a patient,” a 2015 study in Arthritis Care and Research found that fibro fog is a real problem. In a study of 60 individuals, 30 with fibromyalgia and 30 without fibromyalgia, the researchers found several impairments of attention and memory in patients with fibromyalgia compared to healthy controls. What is unclear is what is causing the cognitive challenges.
Therefore, the studies conclude that living with fibromyalgia includes so much pain, depression and anxiety that, individually and collectively, cause the brain to behave abnormally. In fact, the study added that “the problems of memory and concentration in patients with FM were related to deficiencies in their ability to organize and plan in advance, express themselves, respond quickly to questions and drive.”
The loss of memory and the “brain fog” that I have experienced for years but that seems to be more noticeable in the last two years is not all in my head, but very tangible and real.
What happened to my memory
My experience has been largely in line with the research and facts mentioned above. In recent years, I have found myself stumbling over words when I speak, constantly losing my thinking and literally losing my short-term memory. A few years ago I was in denial and I tried to ignore these issues. I refused to believe that the only thing left for me to trust (“my mind”) was also affected by this unbearable illness.
I take pride in having the mental strength and endurance to have been able to turn my negative experiences living with fibromyalgia into an outlet and platform that has allowed me to share and sustain myself. Writing books, managing a blog and creating content requires an immense measure of mental strength that until recently was intact despite the chronic fatigue that, by burning, limits my physical and mental endurance. This truth was something that I have been able to overcome. But losing thoughts, forgetting if I did something and having to rely more on notes, diaries and calendars is very different. This means that the content if I do not capture it immediately will simply not be there.
Although I have lived with fibromyalgia long enough to know that I will do everything possible to overcome this symptom as best I can, I would be lying if I did not share that I am tired. Tired of pushing through. Tired of the pain. Tired of climbing over. Tired of being tired. Losing my memory along with everything else is simply too much to bear and I am terrified.