I know some say fibro does not progress, however in my case my pain has gotten much worse over the last 2 years. I now have pain all over all of the time. A few years ago i only had the really bad pain in my legs hips and feet when i was in a flare.
My rheumo has told me that since seeing him at my very first apt. my pain has gotten worse and is now all over, from head to toe.
But, at this time I have no faith in my rheumo as my apt. did not go well at all.
See my discussion i posted last night about my rheumo apt, that didnt go well.

I cant say if i will ever end up in a wheel chair or having to use a cane. But i know that if he takes me off all my meds i will end up in bed most days pretty much all day.

My pain is always at least a 7, most days an 8. I don't often have time to sit and relax, just to veg, lay on the couch and do nothing. Right now im working on some tests for work but am taking a small break.

I hope we wont ever end up in a wheel chair or even worse bed ridden.

Nina, about 3 weeks after my regular MD thought I had TMJ, I ended up losing ALL muscle control in my left leg. I still have NOT gotten it back. My Dr. said that I may not get it back, or I may get it back, just depends on the meds etc. As far as the pain, I am RIGHT THERE WITH YOU!~! It is TERRIBLE. The pain is 24/7. NEVER ENDING. I also walk with a pair of crutches, however, I'm not going to be able to do that much longer either, as it is really getting to my shoulders & elbows. So, I may have NO other choice but to go to a wheel chair :( I wish you the BEST of luck!~! "Keep Your Chin UP!~!"

Fibro fluctuates. About 7 years ago, I had to start using crutches because my legs would not support me. That lasted for about two years and went away. Could it get worse? Yes. Could it get better? Yes. It affects each person individually and that's why you will hear of a wide array of treatments. Some will work for one and not for another. It has finally been recognized as an actual disease and not just a syndrome. But neither of those words say anything as to whether it is progressive. Sometimes I think it's getting worse, but I am also just getting older. We can't look at fibro in a vacuum. There are many factors that can be intertwined with Fibro: other illnesses, barometric pressure, temperature and so on. Just keep trying different things, you will find things that will help you.

Keep hanging in there and don't lose hope!

i dont care what they say about it geeting worse . everytime i have to have surgery or something it gets worse . been using cane since 1986. have new wheel chair sitting in my living room. i know ill need it soon . but cant shop without the riding carts . can walk for few minutes then hips hurt real bad. i dont have any way to haul my wheel chair yet .

I hear the same thing but since I was diagnosed I have continually goton worse. My rhemo says I am under to much stress and if I elimatne the stress then I might get better. WEll I am always under stress and don't know how to get rid of it. My 16 yr old moved out and his girlfriend is trying to get pregnant and my sister just dies. How do i not stress about these things not to mention money etc. I hope we all don't end up in wheelchairs and that someday they will find a cure or a med that will help us all. I stay between a 8-9 95% of the time

Ok, this is what I have learned. Yes, we are in pain all the time. Yes, this is the way it is. BUT, if you can get a doc to prescribe you narcotic pain meds, you can get an almost normal quality of life back.

About the progression, yes it gets worse. But, it's not the fibro they say. They say it's other autoimmune diseases that get you, because your immunity is so messed up. Like, I started with hypothyroidism. Then I got Fibro in 2001. Dx with Arithritis in 2006. Then last Aug. I was Dx with Connective Tissue Disease. These are all autoimmune diseases. So is it progressive, yes and no. It's all in the way you look at it. Sorry that you have to have it. It's a stinker of a disease.

I just read Sharon's post about child abuse and I almost skipped it because I didn't think it related to fm... you have got to read this... it is very long but goes in line with my question. someone go read and then respond here after you read her post.... scary.

Nina, this just makes me sick, about the child abuse post, this only shows how bad docs can be, they dont do their job, and if they dont know what it is they make up something or pass u to the next no nothing doc.

The idea of progression is hard to explain. I was told that the illness does not Progress, meaning that it does not get worse as time goes by. But, you do not always feel the pain the same way on everyday, so the pain changes. Whatever you worst pain day is, it will never get any worse than that. It can get less or even have pain free days, but it will never get worse than your pain on the worst day of a flare.

Generally when they speak of a progressive disease they mean one that continually gets worse until it ( often) results in death.. Fibro wont kill you..well not directly..though many doctors feel that pain and stress can have a direct long term effect on the heart blood pressure etc..
Fibro can be bad..get better..come back bad again..most people have it this way..I was using a walker in 1995 and had periods when I could walk normally for several years..I have ALWAYS had pain to one degree or another..it is always there./but it does not do STRUCTUAL damage and there is always the possiblity of remission.
And since so much research is being done on it now I think the possibility of finding the exact cause and cure are very likely very soon..
Hugs Micki
http://www.fibrowelcomepackage.com

Thank you Micki for the "HOPE", as long as we keep the faith and have hope, we can all get through this together, I hope.

Have a good day, the best you can.
Sheila

I am new here and this is my first answer. I was told that this is not progressive also. If it is progressive, I just do not know what I will do.

I've had FM for 17 years & its much worse now than only a few years ago. I think it IS a progressive disease in that the pain & disability increase over time. Terminal is what kills you, but progressive & terminal are not the same. My pain level is a 9 most days as opposed to a 5 when first dx'd.

dr.s have told me this does not progress...whatever......I have had 2 progressions....both with the onset of NEW symptoms...and the severity of some of the older symptoms...BOTH times it progressed enough to notice were at times of High amounts of emotional stress...

Alexandra, how do you cope with a level 9 pain every day?

Boni, what new symptoms did you get? I am questioning if I have the myofascial pain as well as I have sooo many big knots in my back. Do you know much about that?