For most living with fibromyalgia it takes many years to come to grips with the fact that the person you once were eventually dies and a new version of the person is reborn. The checklist of what fibromyalgia steals from you mentally and physically seems to grow longer with each passing day. Early on in my journey when I was passing through the five stages of grief, anger was a common emotion as I watched my life change from the inside out and was able to do very little about it.
“Losing my memory along with everything else is simply to much to bear and I am terrified”
As I approach my tenth year living with fibromyalgia I can say that I’ve made peace with and accepted the fact that I am a new person and will never ever exist how I was prior to fibromyalgia. Still I would be lying if I didn’t say that I am extremely concerned and terrified at the fact that I am losing more of my short term memory with each passing day. But before I get into my personal challenges with memory loss, let me share some of the general facts about fibromyalgia and memory loss.
Memory Loss & Fibro
According to the National Fibromyalgia Research Association, 46% of fibro patients suffer from both fibromyalgia and impaired memory. The National Fibromyalgia and Chronic Pain Association explains, “… we have found that FM patients perform more poorly than age- and education-matched controls on 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. Fibro fog can manifest itself in different ways in different people but some of the most common symptoms include:
short term memory loss
becoming easily distracted
difficulty carrying on conversations
inability to remember new information
One study from Korea, published in 2012, concluded “that the working memory deficit found in FM patients may be attributable to differences in neural activation of the frontoparietal memory network and may result from both pain itself and depression and anxiety associated with pain.”
Another study showed that fibromyalgia patients are not receiving enough oxygen to different parts of their brain. The Arthritis Foundation speculates that a possible reason for this could be that a fibro patient’s central nervous system is off kilter which leads to changes in the brain’s blood vessels. Thus, impaired cognitive function.
Although cognitive difficulties have sometimes been thought of as “all in a patient’s head,” a 2015 study in Arthritis Care and Research found that fibro fog is a real issue. In a study of 60 individuals – 30 with fibromyalgia and 30 without fibromyalgia – researchers found various impairments of attention and memory in fibromyalgia patients when compared with healthy controls. What remains unclear is what is causing the cognitive challenges.
So the studies are conclusive living with fibromyalgia includes so much pain, depression, and anxiety that individually and collectively cause the brain to behave abnormally. Indeed, the study went on to add that “memory and concentration problems in FM patients were related to impairments in their ability to organize and plan ahead, express themselves, respond quickly to questions, and to drive.”
The memory loss and “brain fog” that I have experienced for years but seems to be more noticeable over the last two years is not all in my head but very tangible and real.
What Happened to My Memory
My experience has largely fallen in line with the research and facts listed above. Over the last few years I’ve found myself stumbling over words when I am speaking, constantly losing my train of thought, and literally losing my short term memory. A few years ago I was in denial and tried to overlook these issues. I refused to believe that the only thing that I had left to rely on (“my mind”) was also being affected by this insufferable disease.
I pride myself in having the mental fortitude and stamina 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, running a blog, and creating content all require a immense measure of mental fortitude that up until recently was in tact despite the chronic fatigue that when flaring limits my stamina physically and mentally. This truth was something I have been able to overcome. But losing thoughts, forgetting if I did something, and needing to rely more heavily on notes, journals, and calendars is quite different. This means that the content if I do not capture it immediately simply will not be there. Coming to grips with the harsh reality that my mind is not as resilient as it used to be and at just 32 years old I have to worry about the real and tangible effects of memory loss is very challenging.
Even though I’ve lived with fibromalgia long enough to know that I will do my best to rise above this symptom as best as I can, I would be lying if I didn’t share that I am tired. Tired of pushing through. Tired of the pain. Tired of rising above. Tired of being tired. Losing my memory along with everything else is simply to much to bear and I am terrified.