364 Days

Yesterday I blogged about something I don't think I've hit on before--the pain of fibromyalgia.

I've decided I'm going to blog on this subject for one year, every day.  See what works and what doesn't.  See if I'm still sitting in the same place a year from now.

Today I work up with stiffness, soreness, and pain in my left shoulder and that side of my neck.  That's unusual for me, because usually my pain is on my right side.  By noon it had moved and the pain was being shared between both sides of my shoulders.  How nice of it to share.  @@

They are currently treating me with flexeril, a muscle relaxer, and the pain management specialist I went to yesterday started me on some new pain narcotic that starts with an N.  Nucynta or something.  All I know is it makes me feel foggy, dizzy, and tired but does nothing for the pain.  It's incredibly expensive.  I really don't understand why I can't just have Norco.  I get that it's an addictive drug, but honestly I'd rather deal with the addiction concerns than live in pain.

There are days, like yesterday, that the pain is so acute I can't get out of bed, or I cry all day.  Yesterday was a crying day.  I cried for six hours or more, and now I'm crying again.  It isn't that the pain in and of itself is so horrific.  It's the day in, day out of pain that never lets up, that robs you of your life, that keeps you from doing the things you used to love.

I'd compare the pain I have today to severe whiplash from an auto accident.  It's painful to turn my head in any direction, including to drive.  There are some days I have migraines--pain gripping the entire side of my face that won't let go.  But the worst is my shoulders.  They hurt all. the. time.  The pain is incredibly intense and I have only found two ways to improve it.  One is, of course, the narcotic vicodin, which does relieve my pain tremendously.  The other is massage, which removes it for a few hours before the muscles begin to spasm and contract again.  There have been times my shoulders have hurt so badly I have been unable to wear a bra, forcing me to stay inside in a tee shirt.

My lower back is known to give out and often aches if I'm on my feet too long or walking in the wrong kind of shoes or wearing the wrong kind of clothing, even.  Pain in my back is common, and probably at least once every six months to a year now my back goes completely out, meaning I cannot stand straight at all and am in horrific pain if I try to stand, period.

I used to be the kind of person who agreed that narcotics should hardly ever be used, and that lots of people overprescribed them and overused them.  I'm not a drug addict, do not use illegal drugs, nor do I smoke.  On the rare occasions that I drink, I generally stop after one or two.  However, the last several months have been life-altering for me in how I view these drugs.  When I do not have an effective pain reliever to make living more bearable, I am not above going to a bar and having a couple of drinks.  I've always heard it said that "alcohol masks the pain" and it does, just as vicodin does.  The fact of the matter is that while certain medical conditions do have cures, there is no cure for fibromyalgia.  I have begun treatment regimens but it's slow going and much harder to do when I'm in constant pain.

Finding doctors who are familiar with fibro and understand--REALLY understand--the depth of the pain is hard.  I frequently find myself thinking of ways to die on days when the pain drags on and on.  I don't think most people understand the frustration of that feeling, the desperation that one feels to just rid oneself of the pain.  Anything--even death--sounds better than continuing in a life that is painful and has stolen your body, your livelihood, even your mind.  There's a condition called "fibro fog" that is common for fibro patients.  Between the depression, anxiety, and pain, it's often difficult to think clearly. The exhaustion that goes along with the illness makes it hard as well.

I have, at least temporarily, lost my livelihood because of this illness.  I have lost time with my children as well as their respect and admiration.  I have lost huge parts of myself to an illness that nobody understands.  And I'm about to fall asleep writing.  It's 1:24 p.m., and I can't go another minute without sleep.  Damn this illness.  Damn it to hell.