The symptoms of fibromyalgia can be hard to understand and hard to explain. “Fibro fog” was something that took me a while to recognise even after my diagnosis. It is like a fog. But you don’t see it, you feel it. It can come on slowly, but sometimes it’s so subtle you don’t feel it until you are no longer in a fog but stuck blind in a cloud. Now that I know what it is I can feel it coming. First there’s a lack of ability to concentrate (more so than usual) and a feeling of exhaustion from simple things like standing up and walking across a room. I can tell when it’s going to get bad because I feel a sensation in my head. Not a headache. A feeling. A light pressure behind my forehead. My vision changes slightly. Things look different. What I am looking at directly is very clear but everything else has a slight blur. If I move my eyes or head too quickly I get dizzy and it feels like it takes awhile for me to process what I am seeing.
“It’s a cycle that I have to let my body go through and just wait it out”
While light exercise can help with the fatigue from fibromyalgia this is when I know I’m at the point that I can’t fight it. Nothing seems to stop the acceleration at this point. It’s a cycle that I have to let my body go through and just wait it out. The slight confusion turns into being seriously impaired, like being drunk but without any of the positive associations with alcohol. At this point I start to have a hard time keeping my eyes open. My best option is to lay down and wait for my brain and body to start working again. I can’t sleep during these periods. At least not sleep in the normal sense. My body will relax and my senses become dull. I may hear bits and pieces of conversations if other people are around or I leave a show on. My brain won’t fully shut down, just get very close. I’m often aware of my body but to a limited degree. If I’m not in extreme pain then the normal pain in my body is undetectable (If I am having extreme pain then it’s the only thing I can feel). My body and brain feel disconnected like my consciousness has localized itself in a small corner of my head.
Often, once the episode is starting to end and I am becoming more conscious, my whole body will tingle and I’ll have a mild euphoric sensation. At this point I often want to stay in that state and won’t force myself to “wake up” even if I feel like I can maybe move. But eventually there comes a point where I no longer feel like 90% of my brain is shut off. I know I’m going to be awake enough to keep my eyes open but my brain still doesn’t go back to normal right away. After resting I may sometimes have a sudden burst of physical energy but the cognitive symptoms will only go away slowly, if they end up going away. Sometimes an episode like this happens once and then I can go on with my day. Other times I may end up passing out again losing several hours of the day. Or if I have pushed myself a lot I may have a few days in a row like this.
“When this happened while I was stuck in traffic I had to hit myself to stay awake.”
No amount of fighting it has ever helped me. Large doses of caffeine or energy drinks will increase my heart rate but not keep me awake. Before my diagnosis this happened to me many times while driving. I just thought driving made me tired since it often happened on long stretches of highway. I would try to pull over somewhere and sleep in the back of my car. When this happened while I was stuck in traffic I had to hit myself to stay awake. I remember slapping myself in the face which worked at first until my body became numb to that sensation. I then dug my nails into my arm and the sharp pain sent a little burst of energy to my brain keeping my eyes open long enough for me to find somewhere to pull over. Clearly this is a dangerous situation that I try to avoid but my ability to know when this will happen is very limited.
There isn’t yet a scientific explanation that doctors agree on for why this happens to people with fibromyalgia. And my description of fibro fog may be very different from another patient’s in terms of severity and some of the physical sensations. The things that seem to be universal are the fatigue, memory problems, inability to concentrate, and really wishing this disease had a cure.
Does this sound familiar to you, or are your symptoms totally different? If you have fibromyalgia feel free to comment bellow 🙂