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13 Replies
sindee - July 17

I have had FMS for about 5 years and all the Dr.'s I have seen says Fibro doesn't get worse and I have also read that on some of the sites. I feel my fibro has gotten worse sometimes I feel it gets worse with every flare up now don't get me wrong some are much worse than others but I started out with pain in my arms and wrist and now I have pain just about everywhere at different times. I also have more symptoms now than I have ever had is this normal or is it possible that I might have something else?


mamasteen - August 10

My experience has been that it is definitely progressive. I had many symptoms over 15 years ago, but they were fairly mild compared to now. What I don't know yet is if radically changing my diet to a super healthy one will reduce the symptoms. Or if it is the aging process that makes it seem worse. But, for me, it is definitely progressive.


islandguy - August 10

I have also had FMS for about 5 years and mine definetely has escalated in the last little while . The pain seems to be more intense and it seems to last longer with every flare. I no longer have good days and bad days, I have bad days and worse days. Sometimes the pain is excruciating and even if I take all the meds for my pain it will not touch it.
My worse weeks have been the last two weeks.
I always wonder in the words of Jack this "as good as it gets?"
My doctor says yes.....unless it goes into remission. One only knows how that happens?


JJ1 - August 10

Once I was diagnosed and started taking elavil, mine stablilized and is usually much better and has definitely not become any worse. I will keep my fingers crossed that it stays this way.


teresat - August 11

I have a theory... I think that our bodies just start wearing out!!! Things we tolerated a few years ago seem a lot worse to us now??? I know my symptoms seem to be WORSE than say 5 years ago or maybe I am just WORN OUT!!!!


lili - August 13

I also was told it would not get any worse. That was three years ago. It has gotten worse. At times I feel like I just won't be able to stand another day of it.
When it started, it was for the most part in my upper body. Now, it's all over. Even my feet. The pain level is much higher than in the past also. I'm sure there are all kinds of "circumstances" attached to the higher pain level. Also, I think doctors just plain don't know enough yet.


islandguy - August 13

It would seem to me from reading all the posts that everyone would agree that it is progessive. I have learned the things to watch for are the trigger points. For me the change in weather is a definite flare up. Cold and humid is just a disaster for me. Also, any abundance of stress can trigger a flare for me in a moment's notice. You need to know your body tolerence and be able to read what is good and what is bad for it. Your body will always tell you when you are pushing the envelope.
In saying that....sometimes it is hard to do nothing all you put on your happy face and try a project or to....when at the end of it all you pay dearly.


katvil - August 16

Like "islandguy", I had good days and bad days when I first was diagnosed with FMS. Because of the good days, however, I kept telling myself that I really didn't have it and that the doctors were wrong, and therefore I would push myself to do more and more. I also argued with the doctors who said I had it because I didn't want to have it. Who would?

After two periods in which my symptoms seemed to go into "remission," though, I wound up overdoing it, allowing myself to get into a job situation with a lot of pressure and stress, working for a boss who was very critical, demanding and bullying. That was the end of my good days and bad days.

So now, like "islandguy", I have bad days and worse days. This has been the case for two years.

I don't think all is so bleak, though, because I have met two women whose symptoms seem to have improved for a long period of time. When I asked them what they think did the trick, it was this: When both got sick, their parents took them in and cared for them for one to three years. So neither one had to do a thing for herself for a very long period of time.

Both are working again, part-time, and although they still have symptoms from time to time, the symptoms are manageable.

I'm sure many of us would have recovered somewhat had we been taken care of for a few years too.


JJ1 - August 17

Like I said, mine HAS NOTgotten progressively worse. I have good times and bad times, but nothing has really gotten worse. As a matter of fact, I would have to say the physical aches and pains are actually much better than when I was first diagnosed. I think finally knowing what could be wrong with me alleviated a lot of stress. Also, taking elavil got me the REM sleep I was missing. So if I had to say anything, mine has been stable or better.


linda brown - October 1

i think it gets worst over time too. i mean, i can remember having weakness as early as my teens and i am 39 now. i used to ask my boyfriends at the time that if something happens to me and i can't take care of myself if they would. that's how serious i was, thank God i have a wonderful husband now


Tatty - October 2

I am like JJ1. I have good days and bad days. I am worse than i was before i was sick of course, but i am no worse than i was 5 yrs ago when i started trying to figure out what was wrong with me. i would say if anything i am better cuz i learnt to manage stress better and take it easy when my body tells me to.


sunglo - October 2

i was diagnosed with fibro year ago and was given ss and dis..mime has worsen and is different daily..was told i may have had this for years and jus now that fibro has been accepted as a desease is being dicussed and people are getting help..had no one to talk too till now...all ive been tiold is that it seems to connect to everything..i would love to say that i have found improment but as of yet i have only had mopre pain..different areas each day


Robin1237 - October 4

Yes, sindee -- I think we have something else, called Lyme disease. It's a bacterial infection usually transmitted by the bite of an infected tick. The bacteria affect our nerves and soft tissues and every body system gets messed up. Symptoms move around and get progressive if the infection is not treated. Go read at You can post questions there and people will answer and help you.


megh - October 4

I have had Fibro for about 6 years at first it started with pain on left side of chest. That came and went now it is a constant. I don't care what these doc say mine has gotten worse in the course of six years. I have pain all over sometimes in the morning it hurts just to breath. many days are spent in bed because any activity just makes the pain worse. Just hang in there.



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