Feeling the Fibro Funk

Ahh, alliteration.  Sometimes humor’s the only thing I have to fight the fog and fatigue that comes with Fibromyalgia.

If you’re wondering what the hell I’m talking about, here’s the definition:

http://en.wikipedia.org/wiki/Fibromyalgia

Fibromyalgia (FM or FMS) is characterised by chronic widespread pain and allodynia (a heightened and painful response to pressure).[1] Its exact cause is unknown but is believed to involve psychological, genetic, neurobiological and environmental factors.[2][3] Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatiguesleep disturbance, and joint stiffness. Some patients[4]also report difficulty with swallowing,[5]bowel and bladder abnormalities,[6]numbness and tingling,[7] and cognitive dysfunction.[8] Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.[9][10] Not all fibromyalgia patients experience all associated symptoms.[11] Fibromyalgia is estimated to affect 2–4% of the population,[9] with a female to male incidence ratio of approximately 9:1.[12] The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain”.

Ah, the definition.  It barely begins to cover it.  Muscle and joint pain. Misfiring nerves.  Tendencies to suddenly get exhausted. Depression, fatigue, forgetfulness.  Mood swings, insomnia, migraines.  Sensitivity to sound, light, temperature.  The fun goes on and on.

I was diagnosed about four years ago, when my now-four-year-old princess was just about six months old.  To be honest, I’d probably been dealing with it, and it’s associated symptoms, for more than a decade.  The full-on fibromyalgia flares partnered with severe post-partum depression to make me a walking, talking, hormonal and emotional wreck.  However, when I was finally diagnosed, it was a light-bulb, amen, hallelujah moment.  Finally there was an answer and it wasn’t all in my head, as others had convinced me.  My problem had a name, and there were treatments.  (I still call Cymbalta my magic pill.)

The “definition” does nothing to describe what it’s like to deal with Fibro daily.  Some days are amazing.  If you get enough sleep, and there’s little external stress, you wake up and want to tackle the day.  But, if you’re exhausted, and don’t sleep well … if there are a lot of outside factors keeping you down — some days it’s just physically impossible to move.  And if you have one of those insanely good days, and don’t pace yourself, odds are good the following day you’ll be completely drained.

No two fibromyalgia sufferers experience the same symptoms.  What works for some — for me it’s a combination of dietary choices, medications, yoga, and aromatherapy (lavender and eucalyptus essential oils are awesome) to manage it — doesn’t work for others.  If you have or think you may have fibro, talk to your physician and work out a plan for treatment that works for you.  It will be trial and error.

Oh, and for the record — pregnancy with fibromyalgia — not for the faint of heart.  The pumpkin was a surprise, so I had to carefully come off my medications.  Oh my was that a miserable several months the mister put up with. Making him all the more awesome because I didn’t even want to put up with me by the time it was over.

The hardest thing, is explaining to the people who love you why you can’t have them hugging you so tight, or telling a four year old that her snuggles hurt. It’s heartbreaking. Simply heartbreaking. I have a “to do” list a mile long, but because the pumpkin is teething and we’re not getting real sleep – sometimes it’s all I can do to make sure the laundry is done and the kids are fed.  Luckily right now I can telecommute and work from home, and work freelance when and where I can on site, but soon I’ll be back in the all-day, every-day work force. It’s going to be a tough row to hoe.

I miss the days when I could walk for hours, kick the elliptical’s ass, and actually felt energized and positive about things, all day long.  When I get an energy spurt, I try to get done what I can.  And please don’t think this is a “woe is me” sort of blog post today.  Many fibromyalgia patients suffer in silence.  They’ve been told too many times, “it’s all in your head” or “oh just do this or that and you’ll be better.”  But until you’ve walked a yard or two in the shoes of someone afflicted with fibromyalgia, or another chronic disease (Chrone’s, Greaves, Celiac, MS, Lupus, and more) that has no outward physical symptoms, you really cannot understand what we go through daily.  It’s nobody’s fault.

But if you know someone suffering from fibromyalgia, or any other chronic condition, please cut them a little slack.  To you what may be just a sore neck may be debilitating to them.  Your little headache is their full-blown, puke your brains out, need absolute silence and cold migraine.

Having fibromyalgia (or any other chronic condition) is a roller coaster – physically, mentally, and emotionally.

Note, there are support groups out there, I’m a member of one on Facebook called  Behind Fibromyalgia (https://www.facebook.com/pages/BEHIND-FIBROMYALGIA/245543075457507).

Image

Image via Behind Fibromyalgia.

Additional resources:

National Fibromyalgia Association  http://fmaware.org/PageServerded3.html?pagename=fibromyalgia

National Institutes of Health http://www.niams.nih.gov/health_info/Fibromyalgia/

Categories: In all seriousness | Tags: , , , | 2 Comments

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2 thoughts on “Feeling the Fibro Funk

  1. Well put!
    I have had Fibro since I was in HS…. I wasn’t “officially” diagnosed until almost 20 years after my first flare. I have 18 auto-immune diseases among other things. The symptoms of some of my auto-immune diseases mirror those of Fibro so it went undiagnosed as those flares and there symptoms were blamed on one or more of my other issues.
    As stated above only someone with Fibro can completely understand what it is truly like to suffer from/ deal with this disease. The pain it causes – there honestly isn’t a way to really describe it. The closest thing I have figured out is this ” it feels as if I have been skinned and all my nerves are exposed – even something as soft as the softest make-up brush feels like razor blades running along my skin “.
    I tried all the normal medications and found out I am allergic to them all. My saving grace has been Savella!
    I think the biggest misunderstood part of this illness is that it isn’t just the pain of the muscle, skin, joints,etc- it’s all of the other issues that also come with it.
    The MOST painful part… Being told for years on end that it is “in your head” or that nothing like your describing exists. Finally being told you have Fibro feels like you are finally being justified; everything you have said for so many years has a name and IT DOES EXIST!
    The best thing you can do is always stay positive, even on those off days. Remember, every day you wake up is a blessing. Going off Gluten when I was diagnosed with Celiacs helped a lot too. I found that eliminating Gluten helped with so many of my issues.
    I hope that more people comment and share their stories. Through sharing is how we learn and how we can help each other! 🙂

    • I wish we knew then what we know now. I remember the only way I got through my senior year of high school and college were naps mid-afternoon. Luckily in school I could stretch out in the newspaper editor (my) office during extended lunch/study hall and power nap. I was always so tired. I still need maps to get through the day.

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