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6 Replies
staceyw1 - November 2

I have been diagnosed with Fibro for 2 years but in pain several before that. Does Fibro have stages? I have noticed within the last 6-9 months that my flare-ups are closer togather and my overall pain has increased. I want to sleep all the time here recently and have to fight sleep at work. So does it just gradually worsen over time?


Stacey373 - November 2

Hi Stacey - From what I understand, it all varies from one person to the next. I know that I have progressively gotten worse over the years and that scares me because I can't imagine how I will be feeling in another 5-10 years. I've also noticed that over the last 6 months or so I've gotten ALOT worse and my medication doesn't seem to be helping much anymore.

I'm not sure what we can do to stop this progression. maybe some other people on here can give us some suggestions. I have read that most people will hit some sort of "plateau" and then are able to maintain from that point and not get worse...but how bad does it have to get to finally hit that plateau???

Sorry I couldn't be more help to you...Take care of yourself, Stacey :o)


Auvonto - November 2

i too feel that i have gotten worse over the years but was told this wasnt progressive. well my body hasnt received that memo because i have gotten worse. maybe one day we will get some better information about all of this. good luck to you Staceyw1


lovlyliz13 - November 3

Hi Stacy !
I was diagnosed with fibro about two years ago but have been suffering with it for longer than that . The way you describe you pain and flare ups are exactly like mine. I can go for about 6 months and be fine and then it seems like the bottom drops out and my flare ups last for months at a time . Like rights now I am in a middle of a flare that has lasted about 3 months . I also tend to sleep alot and I feel like I just keep getting worse . But I am under the impression that it doesnt get worse per sa but then are months where everything gets worse and then there are days or months that you feel alittle better. So when you have a bad day you try to hold on to the good days .:) But hopefully you get to feeling better !!


oktoberlady - November 18

Hi Stacy, I've had fibro for 30 years and it's gotten worse this past year. It was bad for 3 years and I ended up on disability. I seemed to be a little better for a while, but then got worse this past year. My pain level has increased to the point where I take Vicodin along with Lyrica. So in my case it is progressive. Now some, it isn't. They lead normal lives, with meds. others, like us have it worse. It's just the way it goes, I guess.


Donna10112 - November 21

Hi staceyw1, I'm new to the site but wanted to respond to your post. I've had FM for 30 years and also developed CFS and have myofascia pain. It all started with a car accident for me. In my many years of living with this, I can tell you that your symptoms will vary over time. It's difficult to tell why a flare comes on and just as difficult to determine why we have some good days. Some of the flares will last for a long time, possibly months. At these times it can get really crazy as the pain begins to wear us down mentally and emotionally. But I can tell you this, they will eventually pass. The key is keeping your patience and trust that better days will come. Just make sure during these times that you are doing proper self care and try to treat the pain symptoms. Out of control pain needs to be treated, it only causes added stress we don't need.
Another thing to consider is how complex this syndrome is: it affects the way our bodies process food into energy. We are missing chemicals or can't utilize the proper ways to chemically make energy. Thus, we rely a lot on adrenaline. This eventually maxes out the adrenal glands and they become fatigued. I think this could be possibly why your flare ups are coming closer together and why you are feeling so tired. Your body may possibly be giving out and really needs a rest. You may be possibly coming to a stage where you just can't keep up with the lifestyle you have now. You will know when you hit that point. You will just know you can't keep going. Listen to what your body is telling you. When you get to that point, you will need to make some changes in your life. I have cycled through this at least 3 times in my experience.
So to answer your question, does it worsen over time, the answer is yes and no. The "no" answer is dependant on proper self care of diet, stretching, drinking tons of water, practice your favorite form of relaxation, try to find friends and doctors that will help support you. Medication is fine and use it if it helps, but meds do quit working after a time and side effects may build up beyond your tolerance. Don't emotionally depend on them as a long term answer. Other meds work fine, as said in the other posts, everyone is different. I've just discovered over the years some meds were not the answer for me.
The "yes" answer is to ignore your symptoms, eat whatever you like and use caffiene and sugar to keep going, overstress yourself, and don't exercise. I speak from experience as I have gone through a rough patch in my life and put my illness on the back burner. I'm now finding myself trying to regain lost ground. It's much more difficult to come from behind than to take care of yourself properly in the first place.
The last hope we have is that, although not true for everyone, doctors have stated that some people experience "burn out". The overstimulated nerves reach a point where they just "burn out". Sounds like a dream doesn't it. But, I'm sure it would present it's problems too.
Well, I hope this was somewhat helpful. I wish you all the best. I can also recommend a book that is the best on this subject. Please let me know if you are interested in the title.


Donna10112 - November 21

To Stacey373- From my previous post, I think I answered some of your issues. Unfortunately, we do not reach a "plateau" in FM. It's all cyclical. Which is somewhat encouraging as then we know the bad times don't last. Do as much self educating as you can. I can recommend any of the books by Devin Starlanyl,MD. She has written the best book touching on every subject that we will ever have to deal with. I wish you all the best. Donna10112



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