Yes, it’s real. Yes, it’s far more serious than you’d think.
‘Fibrofog’ sounds almost made up, but it is, in fact, a symptom that is very real and very prevalent in the lives of fibromites (those of use dealing with Fibromyalgia). This side-effect, in many ways, is the one that impedes daily life the most.
As always, I like to start by providing research that backs up the concept that this ailment is not in our heads thereby proving that we are not, in fact, crazy.
“Patients with fibromyalgia frequently complain of cognitive problems or “fibrofog.” The existence of these symptoms has been confirmed by studies of the incidence of cognitive problems in fibromyalgia patients and by the results of objective tests of metamemory, working memory, semantic memory, everyday attention, task switching, and selective attention. The results of these tests show that fibromyalgia patients have impairments in working, episodic, and semantic memory that mimic about 20 years of aging.” — (Source)
It’s surprising how many of us are capable of managing daily pain, and even sleepless nights (albeit not well), but cognitive impairments are brutal. It’s one area that makes you feel less-than. It’s more than just a loss in concentration, it’s a loss of self. That sounds dramatic but the word a lot of fibromites use when describing the impact that this has on our life is ‘demoralizing’.
Why is that?
You rely on your cognitive abilities for a lot more than you may be conscious of. While it is not as severe as Alzheimers, your ability to function as an independent adult is greatly tampered with. You’re scared, frustrated, and constantly on edge that it’s going to blow up in your face in a big way. It impacts the quality of your work, your ability to form relationships, and the opportunity to build your confidence.
For a more in-depth response to the question, I’ve listed the ways the symptom manifests itself:
Short term memory loss
- Word Recall
- Memory loss
- Forgetting tasks
- Problems following a conversation
- Problems reading a book
- Lack of creativity due to the inability to focus
- Spatial disorientation
- Inability to recognize familiar places
You can start to see why this has a bigger internal impact. It isn’t physical pain, but it is just as problematic. With scientific backing, let’s dig a bit deeper into each of these symptoms, understanding the implications of each on daily life.
When we talk about short-term memory loss, this is more than just general forgetfulness. There are multiple ways that Fibromyalgia impacts this area of the brain:
Semantic memory loss
“Semantic memory refers to a portion of long-term memory that processes ideas and concepts that are not drawn from personal experience.” — (Live Science)
People who suffer from semantic memory loss forget general facts. This often occurs at random, like in the middle of a conversation when you’re talking about something and suddenly it’s like your mind hit ctrl-alt-delete.
Now, everyone forgets words or phrases. More often than not though, you’re able to find a synonym or describe the idea of what you mean. With fibro fog, it feels like there is an empty chasm where that word/phrase/topic used to be. Sometimes you forget a word, sometimes you forget what you’re talking about completely.
Working memory loss
Working memory, which is critical to executive functioning, is where you store short-term information you need to complete a task…for people with working memory deficits, this area in their brains is more like a loosely woven basket where items consistently slip through the cracks.” (Additude Magazine)
This is often misunderstood by people as simple ‘forgetfulness’. Unfortunately, it’s a bit more serious than that. This easily takes on the shape of writing a to-do list, going to the store…and then forgetting you even wrote a list to begin with.
It also manifests itself in being unable to follow a conversation, because even though you’ve studied the topic, your brain has momentarily lost any information regarding it. Not a pleasant experience if you’re giving a presentation.
“Metamemory is a self-awareness of one’s own memory. It affects a person’s ability to use memories as an aid in learning. Since it’s is very important when it comes to decision making, impaired judgment may result when this part of the memory is affected.” (Upper Cervical Awareness)
I personally do not suffer from this, so I can only speak to what the science says. That being said, it is a serious problem and one that leads to the inability to perceive future consequences, because you’re unable to connect experiences from the past and use that information to make better decisions.
Inability to Concentrate
On top of having a hard time with memory, many fibromyalgia sufferers find themselves in the frustrating position of being unable to concentrate. This manifests itself similarly to people who suffer from ADD.
A. You cannot stay on task. Your mind fluctuates between a variety of projects and you have to follow the current thread.
B. You can’t focus on the conversation at hand, no matter how hard you try.
C. Your boss is saying something important but you hear a noise and what is that?
This manifests itself in spatial awareness and directional disorientation. Not dealing with this symptom is similar to being able to breathe out of your nose. It’s not something you think about until suddenly the ability is taken away from you, and you become hyper-aware of it.
You know at night when you’re half asleep but have to get-up for the bathroom and you can’t remember which direction the door’s in? That’s a bit like the disorientation people experience, except in our case it happens in broad daylight.
Now, this is a symptom generally experienced with the duel Fibro and ME/CFS more so than if someone just suffers from Fibromyalgia.
I always joke that I have no sense of direction because I really don’t. Now, this does run in my family, but part of it is also a problem many fibromites face. Easily becoming lost, not remembering how to get somewhere (like finding the way back to your theater room after going to the bathroom) and suddenly not recognizing familiar surroundings are all aspects of disorientation that comes with this problem.
Forgetfulness. All. The. Time.
This honestly is a big anxiety trigger for me. Did I forget to turn off the stove? Did I forget to lock the door? Did I forget to do that important task at work? How do I do this thing again? What did my boss just tell me? Nothing like a sudden thought followed by a complete blank to soothe an anxious soul.
Learning to live with this disorientation is frustrating. And it affects each patient differently. However, it is a big part of the illness and another reason most people feel like they have no control in their life.
If you’ve read my posts on Fibromyalgia and Chronic Fatigue Syndrom, some of these symptoms will look familiar. I honestly couldn’t tell you which one is responsible for what, but it showcases how complementary these two diseases are.
What causes it? Again, we don’t know for certain, but we do know that it is an actual problem. There are a few working theories that make sense to me;
“One possible reason is that part of their nervous system is off-kilter, causing changes in the brain’s blood vessels.
Additional research — though not on fibromyalgia specifically — showed that chronic pain may affect the brain. Functional MRI found that in people with chronic pain, a front region of the brain mostly associated with emotion is constantly active. The affected areas fail to shut off when they should, exhausting neurons and disturbing the balance of the brain as a whole.” — (arthritis.com)
More research favors this theory and the link to the cognitive problems is actually widespread pain.
“In conclusion, our research has shown that patients’ complaints about their cognitive problems are accurate: there is cognitive dysfunction in FM patients and this is not due solely to psychiatric disorders such as depression, or to other symptoms of FM such as sleep disturbance, anxiety or fatigue.”- (fmaware.org)
I’m just stressing the point, but I think it’s worth it. I believe that fibrofog is the result of the physical and mental strain it takes to live with chronic pain, and I’m not the only one who thinks so.
“Actually, the only symptom we found to be related to cognitive performance was pain, particularly the impact of pain on a patient…for example, managing chronic pain may take some cognitive effort and this may interfere with performance on cognitive tasks.” (fmcpaware.org)
You’ll notice there are a lot more cited quotes in this post. That’s because fibrofog tends to be a very abstract concept for people to grasp, and I hope that by providing the science, as well as my own experience, it can help explain what exactly is going on.