I hate fibro

[rabid1st]

Let me tell you why!

Unlike many other conditions, Fibromyalgia is a deceptive disorder. Usually, you feel crappy, but it can leave you, within a few hours of waking, feeling relatively normal. You ache a bit, sure, but doesn't everyone? The problem is that on these relatively normal days, no matter how good your resolve, you tend to do too much. I think I can do something ordinary...which I obviously cannot do...and that leads to trouble. My body and mind are not quite in agreement about just where the line that they shouldn't be crossing is drawn.

A week ago, for example, I had an appointment that was 35 minutes away from my home. I took someone with me as I know from long experience that I would not be able to drive back from the appt, due to pain, stiffness and exhaustion. But, on the WAY to the appointment, I am usually okay. This time, however, my body decided that my doctor was correct and I could only drive 15 minutes. This left me about 20 minutes left to drive when it started cramping up on me. I should have used my mind at this point...and pulled over, but I ignored my body's increasingly painful protests and kept driving. The result was that I spent the next 36 hours or so moving like a woman twice my age, shuffling along as I walked, constantly switching positions to find scant comfort and meeping in faint protest every minute or two. Also, on the very next day, when asked by a doctor why I was moving so slowly...I helpfully answered, "I hurt" instead of fully explaining. Full explanations were a little beyond me at the time, due to my mind now agreeing with my body that I had fibromyalgia.

But my mind was still getting me in trouble, as it decided I could make a music video from my sick bed, reasoning that my left arm and hand were not totally crippled. This further attempt to pretend that I was not chronically ill has led to me being pretty much useless for the last four days...with no end in sight. I tried to visit my sister with painful results. So painful and exhausting in fact that we had to cancel our Memorial Day outing to the park. So, here I sit...in need of a shower but not feeling up to lathering myself. I should at least turn on a light...but I would have to get up for that.

Rae

Comments

[wickedgillie.livejournal.com]

I've been dealing with fibromyalgia for almost 20 years now. Trust me, I know where you're coming from because I have many many days where the fibro wins. It's very mentally/physically taxing to beat the fibro all day every day. But individual battles can be won. For example, this morning I could barely tie my shoes but I still managed to run a 5k. I am paying for it now with extreme pain that makes me want to cry like a toddler whose ice cream cone went splat, but I am savouring my temporary victory over the big F all the same. I probably won't be functional tomorrow or Wednesday, but for now at least, I don't care.

Hang in there, my darling. And don't give up the fight. It's not easy winning battles against the fibro particularly since so much of it is forcing your mental will on your uncooperative body, but it can be done.

[princessblue791.livejournal.com]

Hugs you*

I'm so sorry,Rae.

[credilya.livejournal.com]

Oh my dear, I'm so very sorry. I hate that feeling of looking back on reasonably long periods of time and knowing they were a completely wash because of illness.

It may be out of left field but the orphan drug I just started taking is also used for fibromyalgia. Have you tried Xyrem?

[mrs_roy.livejournal.com]

I hate Fibro too! I know what it's like to hurt, and I really, really hate fibro because it makes you hurt too! I wonder if we could shake it out of you? Turn you upside down like a salt shaker.

I'm thinking about you, it doesn't sound like much, but breath through it, I promise you'll be alright. Don't think about it, because the more you do, the worse it is. Trust me, I know these things.

Love you more *Hugs*(Gentle)

[susanb03.livejournal.com]

I'm so sorry! Chronic illness is not easy to deal with.

[thisficklemob.livejournal.com]

{{{{hugs}}}}}

Yeah.

I once told my dad that having CFS was like bouncing on a trampoline with a very low ceiling.

[np-complete.livejournal.com]

*hugs*

[keswindhover.livejournal.com]

*hugs Rae*

I hope it's a bit better today, at least. Take good care of yourself.

[celtae.livejournal.com]

I have fibro, too.

I feel your pain. Literally.

[linwick.livejournal.com]

So sorry to hear of your difficulties. Excuse me if you've discussed solutions to your apnea, I don't recall what you've tried, but I have a bad case of apnea myself. I did a sleep lab night after telling my doctor that I woke up every morning almost gasping for breath and having frustration dreams. I also had lots of aches and pains, to the point where I did some internet research on fibro (I didn't have it.) My doctor said not enough sleep or bad sleep can cause muscle pain.

Anyway, the sleep lab results were that I was almost stopping breathing on average 18 times an hour. The solution was a C-PAP machine. This really works for me. I use it every night and feel much better. It has also completely eliminated my loud snoring, which my long suffering husband really appreciates.

Probably more information than you want or need, but I've become an enthusiastic proponent for C-PAP. I hope you can find a way to feel better.

[dualbunny.livejournal.com]

::hugs you very much::