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192368 tn?1224204130

Does Fibromyalgia progress?

I have been told that Fibromyalgia doesn't "get worse" as time goes on, but you have flare-ups.  So if I am getting much worse than say a year ago--could it be something else?  I was at least able to work a year ago, and now I am almost needing assistance. (with every day tasks, and sometimes walking even.)  I guess I am just irritated and feel that none of my doctors are actually listening to me.  They always say, "you look good".  Yeah--well, it may have been the only day out of 14 that I was actually able to get dressed properly!  I dont think that they always look at the big picture and they just jump to the conclusion that it is Fibro.  I just feel like there is something else going on with me, but when I ask them, they always say that they are sure it is Fibro.  


Anyone else feel like I do?  Like Fibro has been a death sentence to their lives?  (sorry to sound harsh, but Im not feeling well at all today......)



Suanne
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Avatar universal
I have the same problem, I have been diagnosed w/Fibro since 2002, I didn't have many symptoms back then but he blamed it on PTSD.  Withing the last couple of years, I was "re-diagnosed" with every single tender point.  This time they blamed it on depression.

What they don't get is when I go in the office and try to explain my symptoms they won't listen to me and I get so angry so they label me "depressed".  They tell me to make lifestyle changes (which I did) and they said the fibro would go away (NOT the case).  

Sometimes I have off the wall symptoms like right now, my whole left side is so stiff from my ear all the way down to my toes (just on the left side).  I can't even turn my head to the left.  It came on all of a sudden this afternoon.  I am a full time college student so I do have to push through the pain just to make it across campus.

I can honestly say, I don't know what a day w/out pain is like.  What is bothersome to me is that the doctor ran a panel on me and said my ANA levels were extremely high and that I had SLE.  But, a couple of months later he said the ANA levels were high but it didn't mean anything and that I was depressed.  He went as far as putting me on some highly potent drug called Neurotin.  I know it is used for Fibro patients but my body didn't react good to it at all.  So he took me off of that and tried to put me on Cymbalta.  I had tried cymbalta before but had some bad side effects to it.

All in all, you are not alone there are plenty who are suffering just like you!
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Avatar universal
I am sorry that you are going through hard times like you are.  I know what doctors say and do and have been dealing with them for a long time (off and on over 24 or more years)  Was diagnosed with FMS in 1995 or before that Chronic Fatigue, etc.

Have also been diagnosed with moderate to severe sensory-motor with axonal damage in 1999 but nothing done much sense.  So am dealing with more than (I believe) then just FMS.  It is frustrating as you know already.

I think the way I look at it, since it has been so long, is that yes, I do have flare-ups, especially in times of stress, cold weather, storms coming in, and could list many more as sure you already know.  But the difference is that the flare-ups do end at some point; and if you have other things going on, they can get worse.  That is how I tell the difference.  Hope I made sense but sometimes not sure I even do that!!  LOL

I am sorry that you need assistance in things that you do and that is a real hard lesson to accept in life.  I use to joke about those golden years (I am 60) and sure never found them.  I am to point now that I have to accept the fact that I need assistance/help and can no longer do manythings on my own.  I have to use cane and do you need one?  It sure helps with balance and has saved me a lot of falls.

It is so hard (and so sorry you have to go through it also) when doctors do not listen to us or say that we look good.  Gee, what an astute statement as they do not see us when we cannot even leave home; get dressed up for the day; and struggle just to get around the house.

I do not have much faith in the medical field and have heard so many refer to my "condition" as FMS and hysterical, nothing else to do but focus on my "problems", etc....blaming everything from PTSD (my definition is: personally traumatized by stupid doctors!)  sorry, but how I feel at times, at least.

with all the things I have and are currently going through the life and health that I depended on is gone:  so yes, it is like a death sentence; and more so as I continue to lose more and more function.  You do not owe any of us an apology for we all have those times when everything is just so darn overwhelming.  Just know you are not alone; even if you can just touch base once in a while.




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