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

[rabid1st.livejournal.com]

Hmm...no I have not! I will look into it. I did recently hear of a new drug I would like to try...low dose...uhm...rats, I am foggy and can't remember. But it is a drug used to treat opiate addiction...only in low doses it appears to help Fibro. I am a wash out on Lyrica and the NSAIDS, I believe. Either I'm sensitive to the meds or they don't work at all. SHEESH!

Rae

[wickedgillie.livejournal.com]

They tried NSAIDS with me back when I was first diagnosed. All it did was give me a lovely case of chemical hepatitis and jaundice. Also have zero interest in Lyrica. The potential side-affects hardly seem worth it. Instead, a year of physical therapy, yoga, tai chi, and hydrotherapy have been what's keeping me functional 8 days out of 10, pretty much med-free, since 1994.

[rabid1st.livejournal.com]

I, too, have become very discouraged about the medical community response to my illness. NSAIDS caused me a terrible case of GERD asthma...but otherwise did nothing at all for my pain. In addition, they keep taking me off of them for assorted side effects. And, like you, I have some legitimate worries about my liver and kidney functions at this point. I have tried just about every pain reliever known to man and a few of the scarier medications. And I do agree with you that alternative treatments are often just as effective.

Exercise is a real stumbling block for me because I cannot keep up a regular program. My exhaustion is cummulative. I have yoga DVDs but I have only make sporadic attempts at it. Even though I know that regular exercise makes the days easier overall. As you know...the exercise itself doesn't appear to GET easier though. I still remember when exercise used to get easier...but these last few years, every time I start a program, I find myself getting worse and worse as I go along until, eventually, I simply can't keep going.

Then, of course, I lapse into a few months of NOT trying. And we start again. I had hoped when I stopped working that I would have a little more energy...but it's been a year now and I'm only a little bit better. I am a bit better though...so perhaps I should try Yoga again. I tried physical therapy early on and it had the same cummulative pain and exhaustion effect on me. But if I ever do start collecting disability...I am going to start massage therapy and perhaps some water walking at the local physical therapy place. I do think I will get exhausted though...as that has been my experience. Perhaps there is some way to modify a program to something ridiculously easy, however.

I would love to have an 8 out of 10 day functionality. Currently I have about 2 out of 7 and when I say "functional" I mean...I think I can do things which it turns out I shouldn't be doing...I guess. :grin:

[wickedgillie.livejournal.com]

I think the trick for you may be to find that one exercise regimen/time of day where it's fail proof and you do it because your body needs it to be done, so it's easier to put in the work. A full yoga dvd may well be too much. I'm not sure I could get through a full yoga dvd. 10 minutes of exercise a day might be just enough to get you more mobile in general without overdoing it.

In my case, I started doing yoga in general right after Abbey was born, and I would practice just a short bit of yoga between the time she'd fall asleep nursing and me waiting for her to be asleep long enough to move her into her crib without disturbing her. I am now just over 6 years of nightly yoga, only now it's between when my son falls asleep in my bed and me carrying him to his room. I probably need this routine more than he does. I will need to find a new routine once he's finally ready to do the full bedtime ritual in his room without me needing to carry him anywhere. Ten minutes a day may not seem like much, but it's 70 minutes of exercise a week that will completely change your quality of life for the better.

Only being functional two days a week is a rough place to be. But it's better than being completely non-functional. And I believe you have the drive to find a way to make it better still. Baby steps still get you there eventually. Don't focus on cummulative progress or non-fibrocentric expectations. Don't push if it's the kind of exhaustion that isn't productive. You're going to find a new balance and a new normal.

And don't worry about what you should or shouldn't be doing. Be a rebel!