Monday, June 20, 2011

Fibro Follies, Part One

I didn't know what to call this post, so I settled for the above title.  ...Meh. 

If you have any quippy, funny, smarty-pants ideas for future post titles on the topic of Fibromyalgia, I'd love to hear them, my darling, precious 4 remaining readers.

I received a few emails after my post the other day (about the pain I'm in), as well as a comment or two here, and I wanted to clarify a couple things.  I hope those of you who wrote me personally won't mind if I answer here... ???  I'm busy lazy and it's easier.   

If my goofy health and/or Fibromyalgia is of zero interest to you, skip this one.

For starters...  I think one or two of those who emailed may have missed this post where I finally "came clean" about my struggle with chronic pain.  This is not a new situation, nor is it an undiagnosed one (although I'm not 100% convinced the diagnosis is accurate, but you can read about that here). 

Thanks for your concern and prayers.  There's no reason to worry about me, but I wouldn't exactly complain if you kept the prayers coming.

Now...  As to the "you sound really depressed" issue.  Do I?  Do I seem a little down?  Huh.  I can't imagine why that would be! 

Sorry.  I'm done being a smarta*$ now.  I do appreciate your input and I don't mean to make fun.  You know me.  I'm a snot. 

Yes, I feel a bit depressed at times.  BUT, I can assure you any depression I'm feeling is the RESULT of the pain I'm in and whatever is making me sick, and NOT the CAUSE.  This is not one of those "chicken or the egg" things, open to debate.  I have no doubt which issue came first- the pain and fatigue.  It is very, very, very, very hard (I hope that was enough very's to make my point clear) to feel upbeat when:
  1. You HURT all the flipping time.
  2. Your daily routine- no, your entire life- has been totally turned upside down, and there's not a darn thing you can do about it.
  3. Your ability to be productive, feel useful, and even interact with your kids has been shot to he**.
If I may elaborate on that third point just a bit...  I have always (even years before getting "sick") based my self-worth on my productivity.  Meaning: How clean can I keep my house?  How well can I keep up with laundry?  How much "quality" time can I spend with my kids?  And even- How smart are my children (not entirely under my control, I know, but being a homeschool mom means even that is a responsibility I carry on my shoulders)?  

If I'm not living up to my own twisted standard of being the perfect mom, I start to feel down on myself.  I've always known I expect waaaaay too much from myself, but that's how I am, just the same.   I am trying to cut myself more slack now that life is "different," but, right or wrong, I've always considered myself useful when I can look around and see all the worthwhile things I've done.

And now?  I don't do anything useful.  At least that's how it feels to me.  I don't clean.  I'm not outside playing with my kids.  I rarely cook.  If I do, it's exhausting.  For example, I burst into tears the other day because I was making dinner and trying to slice through a stick of butter but I wasn't strong enough to do it.  My shaking hand and weak arm couldn't do it.  My collar bone was screaming at me; begging me to stop.  Darrell had to take over.  It was BUTTER, for Pete's sake. 

So yeah, there's some depression sneaking in there.  However, I do not consider myself a depressed person.  There's a huge difference, I think.  I don't think I "suffer" from Depression.  Any suffering I'm doing is from physical pain only (and I really don't like using that word- "suffer"...  Parents who lose a child suffer.  Captured soldiers suffer.  I just hurt).

I understand that Fibro is not a widely understood condition, so I don't get offended when you toss out ideas like the depression thing.  Don't worry about offending me.  Why on Earth would I be offended by a caring friend?  Again, thanks...  But, I'm good. 

I also do not think I'm suffering from a stress-related pain "disorder" (I think I also got a comment or an email about that).  The way my last post was worded could have easily been interpreted to mean that my pain and stress level are linked.  In fact, I apparently gave my mother the impression that her impending visit was causing me more pain (Whoopsie!  Sorry, Mom. 8( )!  Not what I intended to say at all!  This recent pain flare-up started before we heard mom was coming, and before the water pipes broke.  I was just kind of chillin' and minding my own business, then BAM!). Truthfully, I would be thrilled if Fibro was brought on by stress!  That would mean two things:
  1. During times of low stress, I would be pain free.  I would LOVE that.
  2. I could anticipate and prepare for pain flares when a stressful event was coming on.  That, too, would be awesome!  As it stands right now, there is absolutely no rhyme or reason to my flare-ups.  I can't predict when it will happen.  I've had to cancel many, many events I looked forward to because of it, and fake my way through others I couldn't cancel, while I felt like I was dying.  It would be so much easier, from a scheduling standpoint, if I could predict a flare-up.
Now, to answer another emailed question ("What does it feel like?")... This is the part I hate describing, because I fear sounding like a big pansy.  I don't want to come across like I'm exaggerating for effect, and I'm certainly not trying to complain, get sympathy, or throw a pity party.  I'm just answering your question as honestly as possible, okay?  Okay... 

Fibro pain is in the bones and muscles.  I have "spots" that hurt all the time, as well as areas that don't bother me much until a bad flare-up hits.  The daily pain level ranges from something akin to a really bad bruise- only painful upon pressure (I like the times when it feels like a really bad bruise.  Those are what I consider "good" days), to a pulled muscle, a sprain, an arthritic joint, and even sometimes like the day after exercising too hard- sore and stiff.  Then, I also have "flares" when certain spots become extremely painful for God-only-knows how long.  When I'm having a flare-up, the pulled muscle feeling becomes more like a broken bone feeling, or an "Oh dear Lord, there is a metal spike being driven into the middle of my shoulder, hip (etc)" feeling.  Right now, my left collar bone and shoulder area feels "broken" to me- it's almost not functional.  The pain is a constant, sharp ache.  The other collar bone aches (and I'd probably smack you if you touched it-lol), but doesn't feel as "debilitating," so the pain doesn't always affect both sides equally.  There is stiffness and weakness involved. Sometimes the weakness makes me shake.

It seems to be a "spreading" kind of thing.  Meaning, as recent as a year ago, my collar bones didn't really bother me at all.  The year before that, my elbows weren't affected.  I guess you'd call it degenerative, maybe?  That makes it sound so serious, though.  Like I have a horrible disease.  I don't mean to make it sound that way, but I think it's pretty common in most Fibro folks that it continues to worsen and affect more of their bodies as time goes on.

There is also an extreme fatigue component, so it's not just about the pain.  I feel worn out all the time.  There is never a time when I feel refreshed and rested.  Never.  And I don't sleep well.  I've given up on hoping for sleep.  I haven't slept normally since I started getting sick.  I talked about all that before, though- in that previous post I mentioned above.

Oh, and yes- it does hurt to touch me.  I used to love Darrell's back rubs.  Not anymore.  I cringe when someone approaches me for a hug.  If you accidentally "tap" my elbow, I might jump out of my skin.  I used to think of myself as having a pretty high threshold for pain... well, actually I still do, but it wouldn't look that way to you.  To an outsider who can't see any reason I'd be in pain (no black and blue marks, no bones jutting out of my skin, no red, swollen areas, etc), I'm sure I appear to be very wimpy and jumpy over the littlest thing.

This is getting long, so I'll cover the other questions I was asked soon, in a Part Two.  If you have a question, feel free to ask and I'll try to include the answer. 

8 comments:

myminivanrocks said...

I'm sorry I haven't commented for a while, but I have been thinking of you. In fact, I keep marking your posts as "keep unread" in my reader so that I can come back and comment on them, but alas, life always gets in the way.

My mom has fibromyalgia, rheumatoid arthritis, and lupus. She is only in her 50s. There is a genetic component to those things, so I am concerned about what the future holds for me. I've seen a rheumatologist and had blood work annually the past couple of years, and so far things look good.

I have had severe back pain for a about a year and a half now. I had a herniated disk, a pinched nerve, and I have scoliosis. It got better for about six months, but I've recently had a flare up again. It's nothing like your situation or my mom's but it's bad. I can't sleep because I hurt, and then I hurt worse because I am so tired.

I have taken antidepressants since I was about 17, and the first doctor I saw looked at my chart and immediately determined this was all in my head. It was maddening - no tests, xrays, or MRIs, just a psych consult.

I'm so sorry. I wish there was something I could do. Since I can't, blog away, and I'll read. :)

Michelle said...

Thanks, Tracy. It's so good to hear from someone who gets it. Anyone who's ever been told something's all in her head, or she's "just depressed" understands how frustrating it is to be in REAL pain and not get the right kind of help. The first doctor I went to for this put me on anti-depressants right away, without even testing to see if I had anything wrong, so I know exactly what you mean. Needless to say, the pills did nothing for the pain, since depression isn't my problem. SO, SO FRUSTRATING.

E. said...

I've done zero blogging (writing or reading) for . . . umm . . . too long now, so I'm getting caught up on three posts here, and don't remember what you said in which post, so my comment could be in response to any of them. What sticks with me, what I identify with, is when you said your self-worth is tied up in how much/what you can accomplish. I SO understand that feeling. Though my migraines have not been as frequent/long-lasting/whatever as what you are experiencing, I really do understand how pain can interfere with life and make one feel worthless. You're not, though. You know that, right? I wish there were something I could do to just make you all better. I'll keep praying.

mrsbroccoliguy said...

Ok I just went back and checked and whaddyaknow, *I* was the one saying your paid was related to stress. Thus, we now know for a fact that *I* am an idiot. I'm so sorry... I totally knew you had chronic stuff going on, I really didn't mean it to come off like that but it did and well, I'd want to smack me if I were you.

It's crazy to me that the medical profession has yet to come up with any good treatment (or better yet, CURE!) for Fibro. I'm praying for you - healing, grace, strength, peace, you name it, I'm asking God to give it!

mrsbroccoliguy said...

* paiN. I'm an idiot AND I can't type.

Michelle said...

No, Chris, I don't want to smack you and you're not an idiot. I think it was the way I worded it, because my mom thought the same thing. It did sound like I was suggesting stress was contributing to (or causing) the pain. I hurt my mom's feelings over it, in fact, so I'm the idiot- lol! Don't worry about it!! I appreciate your prayers. Thank you!

metaphase said...

Goodness, this sounds so terrible. Is there any medication that gives you relief? Thoughts and prayers comin' your way today.

myminivanrocks said...

Knock, knock. Are you there? :)

Just checking on you!