The “IS IT FIBRO?” Game

UncertaintyAhead

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.

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5 thoughts on “The “IS IT FIBRO?” Game

    • I am sorry to hear that. Does the BPPV pretty much just come and go as it pleases?

      My symptoms started in 2009 and I wasn’t officially diagnosed until 2013 which I guess is about average. The long diagnosis times are very emotionally draining. Even now I still wonder if there is something else going on that they are missing.

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      • My personal opinion is that BPPV does not just happen. It is the result of something else going on. It went away after the Lyme settled in and went chronic in my system. My BPPV diagnosis was 20 years ago, and went away within a year. Then a lot of other things started going wrong… 18 years later we find out that this was Lyme. Lyme tests are not accurate at all. After seeing a Lyme specialists I started to get my life back. Not saying this is your road at all… just sharing my experience.

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  1. I can 100% relate on the whole guessing game thing. A few months ago I finally started seeing a new doctor because everything was getting worse and the first doctor basically didn’t do anything for me besides say I have Chronic Fatigue Syndrome and the second doctor looked at me like I was crazy but said I have Fibro and just need to do aqua therapy for a year (which I didn’t do). So finally I found a doctor whose wife has Fibro, so he has done and been doing a lot of research on Fibromyalgia and has patients with it. I’ve only been seeing him for a few months but he is not 100% sold on my Fibromyalgia diagnosis. So he has been doing tons of tests. The next test is a sleep study to see if I have Narcolepsy b/c I have either been having seizures (caused by one of my medications), having sleep attacks, or something else. So that is the main focus right now since it has been happening a lot while driving and I damaged my old car twice from these and I have a long commute to work. The guessing game sucks.

    http://dogmomchic.blogspot.com/

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    • I’m sorry to hear that but I’m glad you found someone who genuinely cares and is doing everything he can to figure things out for you!

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