Hello everyone, since I am trying to distract myself from this awful foot pain, I got to thinking... is there known research on the course of fibro during lifetime of a patient? I know they all say it's not progressive, but I wonder if it has stages or any predictable patterns? Seems like it would be invaluable data to me!
I am currently in a research group that is trying to gather the data that you are describing with Dr. Brian Walitt at Georgetown University Hospital. My doctor is working on compiling the data but I think he only has about 4-5 years of data. I will share anything I learn but so far, Dr. Walitt was saying that fibro doesn't really get a lot worse or a lot better over the lifetime. I've kinda resigned myself to living with it for life since there seems to be no cure. I don't mean to sound like a downer-I prefer to consider myself a realist.
It seems to hit people in different ways. Some don't get worse, some do. I found that mine stayed as one horrific pain in my back for several years until it started spreading to my hands, elbows and knees. Then this past winter it took another giant leap forward painwise, helped by a car accident. But it's a peculiar illness, no one's is the same anyone else's, so I think it'd be impossible to know how it'll be for you long term.
Petunia, mine sort of followed a bout of severe exhaustion after a virus. I was left with it. It has always involved all of my muscles. It stayed relatively manageable for years buy amidst alot of stress has gotten much much worse in the past year. The doctors thought it was a muscle disease and after alot of tests including emg they settled on fibro.
My rhemo told me its like diabities if you dont respond o traetment it gets worse over time and generaly never goes away. i know mine is def impacted b the weather
I'm not sure if this is an answer, but my Rheumatologist just told me that chances are good that the Psoriatic Arthritis going undiagnosed and untreated for so long, probably caused my Fibromyalgia.
Thanks, Nancita. I am also a realist and I really do think there must be something in this data to help! Thanks for sharing anything you think may be useful to us.
Well, I'm sure glad that it wasn't a muscle disease!!! Do you also have CFS? I know it's brought on by a virus. And I hate to say it, Baltimore, but your experience with fibro is mirrored by many of us in that the fibro is at a certain level and then ramps up after an accident or stress or operation. I wish I could offer more encouraging words but that's one of fibro's nasty tricks - be at one level and then tasmanian devil itself into another, worse level.
I know, Petunia, Fibro is truly a horrible disorder. After this last ramping up of my Fibro, I've become almost obsessive about keeping my stress down. If it causes me any stress or might cause me stress, I do my best to check-out of the situation. Unfortunately, I can't check-out of this Fibro and it causes me the most stress! It's a cruel cycle...
I don't know much about CFS, but I have considered it a possibility given how the Fibro started for me. Do you know anything about how they diagnose something like CFS?
Thanks, Petunia for always be so helpful.