I have to get this out of my brain because it is causing me a little stress. Now, I realize that we are all affected differently by this syndrome, disorder, disease, whatever you wish to call it. I go to a support group, and we all have distinct stories about how it all started and how we cope with it today. But one theme running throughout the sessions I attended is that FMS, though physical in nature and quite challenging at times, is chronic NOT progressive. This is the consensus among both those who have it (those I have talked to inside and outside my group) and among some leading researchers who have devoted their lives to studying the etiology and pathology of this syndrome. (And such a consensus in the research community with anything in respect to FMS is nothing short of miraculous.)
I also belong to another support group mailing list which will remain nameless, where a lot of hard luck cases post support for each other. I joined the list just after I went full blown a year and a half ago, when I was particularly low--suffering crippling fatigue, shoulder pain and depression (unbelievable depression). I found some hope in the treatment that the group espoused, tried it but found that, on it or off it, I was slowly getting better anyway. Through low doses of antidepressants, through reading up on all the cuttting edge research, arming myself to the gills with knowledge of what we DO KNOW by SCIENTIFICALLY-BASED studies, I have improved markedly. It's still a challenge at times, but through exercise and a couple meds, I have never again experienced the suffering I did those first few months.
As for the symptoms getting worse, I have experienced that on occasion, as is the waxing waning nature of this syndrome, and mine and others' experiences have showed (along with scientific studies) that stress, eating habits, lack of exercise, coexisting physical/psychological conditions can exacerbate the symptoms and make it seem to progress.
If I had truly believed, as some people on that list do, that my condition was going to get even WORSE than what I experienced in the beginning, I would have stepped in front of a train. Everyone can believe whatever they want, but I see unintentional harm resulting from people allowing misinformation, which has no basis in scientific research, to be disseminated in the presence of those new to the syndrome and having a hard enough time coming to terms with the physical changes going on in their bodies, without having to think that this is going to only get worse.
If there's no scientific proof, it shouldnt be said. Not saying it cant be said, this is a moral argument, based on the belief that, especially where this mysterious syndrome is concerned, we need to stick to what is established as fact and not give in to hearsay and conjecture.
My two cents worth, or rather two dollars. Thanks for listening to this tyraid. I dont mean to offend anyone, just trying to clear the air any way I can. Mostly for the newbies visiting this site.
Be well,
Ric
[This message has been edited by babygerald (edited 01-26-2002).]
Ric, I agree that that is what the studies I have read show.
I wounder how many people were in the study how was it weighted and analyzed. Do you have any studies that show how it was analysed. I have been looking.
I can only speak for my self and say what I know from my friends with FMS and what others post on this board and others.
I can only say that through the past 4 decades I have had less and less remission states and that they are of a shorter duration. I don't know the definition that each study is useing for progression. But, in lay terms it feels that way to Gary and myself.
Information is not given to scare or incorrectly inform others when this is how ones own course has progressed through the years or decades. We may not be part of a study and I have only heard from one person with this that has been in any type of research group.
I guess using the word flair might be more nutral a word. I just know that I have many more symtoms then ever before and it feels progressive. Maybe it isn't progressive in the way the medical community states. I wounder if more symtoms and pain is not considered progressive. Maybe it's more like another branch of the symtom.
I think that what you say makes total sence. I also think that what I have experienced is what I have experienced and is also a truth for me and others.
That is what is so unsetteling, is that they just don't know the cause and all the research that has to be done is just getting under way.
Thank you Ric, you are right we don't want to misinform any one. That is why we say research is the key and you must keep all your own copies of your records and symtoms.
Ps. Ric when you change the progressive to cronic progressive that changes the meaning. Thank you for the changes.
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Take care ~Kim & Gary~
[This message has been edited by kim (edited 01-26-2002).]
Thanks for the prompt reply! Let me just put a disclaimer after my tyraid to say that I do not mean to trivialize or render invalid individual peoples' experiences with this syndrome. As you have stated wisely before, we all are walking down different paths, and I dont pretend to know what the causes or prognises are for all FMSers (that would be wonderful if that were true, eh?). As for THIS list, and the other list I criticized, I have found very useful sources for research news and new treatments. Most of us are on this list to get help, and this list is a great help!
As for my sources (I obtained this from my local FMS research/information group), there are four studies (not sure if you can find them on the net!):
Feison DT, Goldenberg DL, "The Natural History of Fibromyalgia," from ARTHRITIS RHEUM, 1986; 29: 1522-1526.
Norregaard J. Builow PM, Prescott E. Jacobsen S. Danneskiold-Samsoe B. "A four year follow-up study in FMS; relationship to chronic fatigue syndrome." SCAND J RHEUMATOL. 1993; 22: 35-38
Ledingham J. Doherty S. Doherty M. "Primary study of FMS; an outcome study." BR J RHEUMATOL. 1993;32: 139-142.
Kennedy M. Felson DT. "A prospective long-term study of FMS." ARTHRITIS RHEUM. 1996;39:682-685.
These studies found "the symptoms of FM remain stable over time. In the longest follow up study from a single medical center, 29 patients with FM were surveyed 1, 3, and 14 years after diagnosis. Although 16 (55%) of 29 patients still reported moderate to severe pain, fatigue, and sleep disturbances, 19 (66%) of 29 felt better than when first diagnosed 14 years earlier, and 16 (73%) of 22 thought that their symptoms interfered little, if at all, with work.
But again, as you have said (and I agree) all things are relative. We have to find ways of dealing with the flares and the fog as we EACH feel them over time.
Ric,
I also find hope in the research that shows that fibromyalgia is not progressive. Personally, I have found that my first flare-up was by far my worst, and since watching my diet and exercising and taking anti-depressants, my flare-ups have been more manageable and fewer in number.
I'm hoping to be able to "pace" myself and learn to nip a flare-up in the bud at the first sign. An older lady I know who's had fibromyalgia for MANY years has learned to do this, and is mostly symptom-free. She has convinced me that this is possible, my doctor thinks this is possible, and so I'm going to use this outlook as my beacon of hope!
A possitive out look is the only way to live. We try to pace but with our 3 year old it is difficult to manage. We agree totally that, paceing and not over doing is good. Wish I could follow that. I found that when I got strenght or energy I couldn't stop my self from doing as much as I could.
FMS is not progressive... 
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