As my life with fibromyalgia progresses, I find that my opinion of what the most difficult aspect of this illness is has changed. When my symptoms first started, I would have said that the chronic fatigue was the absolute worse. Just a few months ago, I might have responded that it is the fibro fog and all its accompanying cognitive dysfunctions. These symptoms suck and probably always will, but lately, I’ve found another aspect of my illness more and more troubling.
I’m talking referring to the uncertainty that accompanies a life of chronic illness. On any given day, I never know how bad my pain or fatigue will be. Maybe I can make it through the day with spoons to spare or maybe I’ll have exhausted all my spoons before it is even time for lunch. Fibromyalgia has really forced me to take things one day at a time (sometimes even one minute at a time).
The uncertainty of the day-to-day is not the only thing that plagues me. It is also the uncertainty of my symptoms. The problem is that fibromyalgia is so poorly understood and the symptoms can vary from patient to patient. So sometimes when I experience new symptoms/sensations it is hard for me to know if it is something serious. With each new symptom, I have to make a judgement call as to whether I can ignore it or seek treatment if there even is any. It feels like I am frequently playing a guessing game “Is it fibro or something else? Does it need immediate attention or probably not that serious?”. I’m fairly certain that most the time my doctor is playing that same guessing game as well.
Case in point, I have started to notice that I intermittently experience sensations of dizziness. Out of nowhere I’ll be hit with dizzy spells so bad that simply blinking seems to make everything spin. I used to notice it when I had forgotten to take my fibro meds but I’ve had the symptoms the past few days despite taking my medications. Ultimately, I decided to go to the doctor about it because it has rendered me useless for one too many days. I ended up seeing a nurse practitioner who said it is probably benign paroxysmal positional vertigo (BPPV) and will hopefully go away in a few days. So maybe these dizzy spells are completely separate from my fibro or maybe they aren’t. Dizziness has been reported as a symptom associated with fibromyalgia but rarely does it seem to be specifically BPPV. I guess only time will tell.
For now, I’ll just try to take everything in stride.