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they say fibro is non-progressive, but...

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Posted 4/24/2009 9:58 AM (GMT -5)
I know my symptoms have worsened, A LOT, in the last two years. How is it supposed to be non-progressive when it DOES get worse??? I think I am going to bug my rheumy about that on Monday when I see him. Is it just because it doesn't do our bodies any actual damage that they call it non-progressive? I just can't count the number of times doctors have told me "it can't get worse from here" but it always does. I mean, how many of you have gotten worse since your fibro started? Is it the fibro getting worse, or is it overlapping conditions that are making it worse...?
Posted 4/24/2009 10:06 AM (GMT -5)
Good question Rache. I've heard the same thing. Maybe it gets worse, then gets better. That is what I am told. Right now it is worse (than before) for me too.
Sue
Posted 4/24/2009 10:11 AM (GMT -5)
I have also been told that fibro is supposed to be non-progressive, but all my symptoms have been getting continually worse ever since they started about seven months ago. I'm not quite sure what to think.

SaraBeth
Posted 4/24/2009 10:38 AM (GMT -5)
rache,

"Because it does no actual damage to the muscles, joints, bones etc..." is the reason I was given for this classification. In other words, it is not thought to become life threatening.

It sure does not help though when others read or hear this and expect that you should not have any worsening (or new) symptoms.

I am still being diagnosed, so I have not had the experience of A Doc telling me it can't get worse. All I know is over the last 20 years something has sure progressively knocked me on my backside with increasing severity and frequency.

Just remember a lot of these medical terms are like legal terms. I am looking for a Medical Reference book similar to Black's Law Dictionary. When you have to ask your Dr. to define something, then need some component of the definition defined for three or four more levels down it can get frustrating.....

So, Fibro is non-progressive (even Cerebral Palsy is classed this way). But that sure is a confusing definition.

Bootknife
Posted 4/24/2009 10:54 AM (GMT -5)
Yes, I think Bootknife is correct. It is "nonprogressive" in that it does not do damage, the way, say, rheumatoid arthritis does. RH continually works to destroy the joints, thus making itself worse over time. Fibro doesn't do that, but I DO believe the condidtion itself worsens over time. I started 25+ years ago with just morning stiffness and a little soreness in my finger joints. Then it was chronic back pain. Then, well, over the years add a new pain here and a new ache there, this weird tenderness thing, throw in some fatigue... Now it's deep fibro mysery. Yes, my fibro has "progressed"... maybe it doesn't meet the medical definition of that term, but in layman's terms, it IS progressive.
Posted 4/24/2009 10:59 AM (GMT -5)
Ok, that's what I figured, is that it didn't do any bodily damage so therefore was non-progressive. They really should explain that better though -- I've seen a lot of websites where they say "the good news is, it's non progressive, so it doesn't ever get any worse...." BS! I really wish they would get more awareness (CORRECT awareness) of this condition out there!
Posted 4/24/2009 11:03 AM (GMT -5)
I agree with you Rache1020 - my symptoms have gotten ALOT worse in the last 2 years which really prompted me to push and push for someone to tell me what was wrong with me and I finally got the fibro diagnosis. I can tell you comparing last spring and this spring I'm not able to do even a quarter of the things I was able to do last spring - as far as planting grass seed, flowers etc....I just don't have the stamina or the strength.

DMarie
Posted 4/24/2009 11:39 AM (GMT -5)
My fibro pain has gotten a lot worse over the past 7 years, but as others said, there's no "real" damage to my body, so they tell me it's non-progressive. In some ways this is a relief, but in some ways it makes me feel worse!
Posted 4/24/2009 12:43 PM (GMT -5)

Rache, I agree with you.  I was finally diagnosed in Feb this year, but my pain and stiffness began in the 70's.  The last few years it has worsened which is why I finally went to the doctor with my list of complaints.  I use to be able to do so much without tiring.  Now I have days when I don't feel like doing anything.  I still try to be very active-work-outs, walks, yoga, etc, but it is harder to do.  My hips and shoulders hurt most of the time now. Sitting really hurts me.  That just started in the last few years. The one good thing is that I am now sleeping better than I have in the last 30 years-thanks to a mild anti-depressant before bed.  This fibro may be non progressive but I wonder what I'm going to feel like in 10 years if it keeps going like it is now.  Well enough of my whining cry I'm going to make myself go to the gym in a little while.

Puppylover

Posted 4/24/2009 1:12 PM (GMT -5)
Agreed, my symptoms have worsened over the years, too. It was at my last doctor's appointment that it was decided that it "was time" that I begin to take Lyrica. If things weren't worse, why would i take meds for it? (sigh)
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