babygerald
01-26-2002, 09:35 PM
Hi all,
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).]
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).]
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korken
01-26-2002, 10:05 PM
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.
------------------
Take care ~Kim & Gary~
[This message has been edited by kim (edited 01-26-2002).]
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.
------------------
Take care ~Kim & Gary~
[This message has been edited by kim (edited 01-26-2002).]
babygerald
01-26-2002, 10:54 PM
Kim,
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.
Be well,
Ric
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.
Be well,
Ric
sujenke
01-26-2002, 11:05 PM
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!
Susan
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!
Susan
korken
01-26-2002, 11:14 PM
Ric,
Thanks we're going to try and find them.
Susan,
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.
------------------
Take care ~Kim & Gary~
Thanks we're going to try and find them.
Susan,
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.
------------------
Take care ~Kim & Gary~
babygerald
01-26-2002, 11:16 PM
Susan,
That's been my story as well: nasty start, then going on ADS, eating low carb and exercising regularly. I remember the first support group meeting I went to, the leader said: "Look around you. There are about a hundred people here, some young, most old, many have had FMS for decades and none are in wheelchairs, only a couple use canes." That was my first bit of hope, and it has helped me avoid spiralling into depression and anxiety, helped me immensely to do the things that can make me feel better (like for instance Im writing another novel, and I find that while writing it I forget about any stiffness or discomfort--even though this chair ergonomically leaves much to be desired!). Also I have one hell of a supportive wife who has been understanding from the get go, no small factor.
Be well,
Ric
That's been my story as well: nasty start, then going on ADS, eating low carb and exercising regularly. I remember the first support group meeting I went to, the leader said: "Look around you. There are about a hundred people here, some young, most old, many have had FMS for decades and none are in wheelchairs, only a couple use canes." That was my first bit of hope, and it has helped me avoid spiralling into depression and anxiety, helped me immensely to do the things that can make me feel better (like for instance Im writing another novel, and I find that while writing it I forget about any stiffness or discomfort--even though this chair ergonomically leaves much to be desired!). Also I have one hell of a supportive wife who has been understanding from the get go, no small factor.
Be well,
Ric
cioc1212
01-27-2002, 01:21 PM
Mine has definitely been progressive, starting with headaches and chronic lower back pain in my teens all the way to becoming almost completely disabled last year. Also, I had less and less remission periods, the flares came closer together and were more difficult with increasing symptoms. BUT in my case, many of my symptoms worsened and "snowballed" because I wasn't getting good medical treatment for REAL medical problems that I had. Once I found a doc who believed in me and started active treatment(in my case including rather drastic surgery), I've had an abatement of my symptoms,pain and a huge decrease in fatigue.
In my case and several other from this board, it appears that many of our FM symptoms were caused or exaggerated by underlying medical conditions.As the medical conditions were bypassed for whatever reason, they most definitley DID have "progressive FM". Maybe in your area of the country, you are fortunate enough to have good doctors who actively treat their patients. Around here, the norm is to have them give you a psychiatric referral when you have chronic pain!
All in all, I've found that everyone's experiences are widely varied. Some are progressive, some aren't. Prior to my pregnancy 5 years ago, mine was NOT progressive, I just had flares. The pregnancy was the triggering factor for my progression to disablility. I'm so grateful for my doctor who spent hours with me, ran thorough tests and didn't blow me off when I broke down and blubbered on his desk!
Rach
I've found a GREAT new FM board, look here! http://www.immunesupport.com/chat/forums/index.cfm?B=FM
[This message has been edited by cioc1212 (edited 06-14-2002).]
In my case and several other from this board, it appears that many of our FM symptoms were caused or exaggerated by underlying medical conditions.As the medical conditions were bypassed for whatever reason, they most definitley DID have "progressive FM". Maybe in your area of the country, you are fortunate enough to have good doctors who actively treat their patients. Around here, the norm is to have them give you a psychiatric referral when you have chronic pain!
All in all, I've found that everyone's experiences are widely varied. Some are progressive, some aren't. Prior to my pregnancy 5 years ago, mine was NOT progressive, I just had flares. The pregnancy was the triggering factor for my progression to disablility. I'm so grateful for my doctor who spent hours with me, ran thorough tests and didn't blow me off when I broke down and blubbered on his desk!
Rach
I've found a GREAT new FM board, look here! http://www.immunesupport.com/chat/forums/index.cfm?B=FM
[This message has been edited by cioc1212 (edited 06-14-2002).]
cadwellm
01-27-2002, 04:49 PM
I really hope you are all correct about fibro not being progressive because that would give us all hope. But I've been told otherwise by my doctors and what I've experienced also supports what I've been told.
All of my doctors have said that fibro _IS_ progressive _UNTIL_ you get it treated, then it's only controlled. Unless of course it goes into remission.
And what happened with me is it came on gradually. At first it was backpain, then IBS showed up followed by memory problems, then headaches, then a slew of other symptoms which ended with pain all over. That makes me realize that it IS progressive, at least in my case.
All of my doctors have said that fibro _IS_ progressive _UNTIL_ you get it treated, then it's only controlled. Unless of course it goes into remission.
And what happened with me is it came on gradually. At first it was backpain, then IBS showed up followed by memory problems, then headaches, then a slew of other symptoms which ended with pain all over. That makes me realize that it IS progressive, at least in my case.
la_brat
01-27-2002, 05:29 PM
Both of our daughters are diagnosed with FMS. The symptoms began slowly with the "flu" 4 times in a year and then snowballed to present where they are both homebound (disabled, unable to shop or do anything outside the house more than once a month and this they do with a price to pay). Their FMS doctor keeps saying it is not a progressive disease. I don't know what his definition is. I keep forgetting to ask. I do know our daughters have progressively gottem worse year by year.
korken
01-27-2002, 06:38 PM
Our 18 year old was just DXed and he is nervious. He has watched us get worse and now Gary is going on disability. The doctor says Long term.The 18 year old also has MVP .Iv'e read and been told many
FMS sufferes may have.
The cardiologist told him it was due to his muscle condition.
I wish the medical community that believes in FMS in all the different specialties would put it all together in one paper.
------------------
Take care ~Kim & Gary~
FMS sufferes may have.
The cardiologist told him it was due to his muscle condition.
I wish the medical community that believes in FMS in all the different specialties would put it all together in one paper.
------------------
Take care ~Kim & Gary~
rhody
01-27-2002, 10:50 PM
Ric,
It's important to know that there's at least one reason why you shouldn't be depressed about it. Some day they might understand FM better and you could be cured. Or you could be someone like myself that linked fibromyalgia symptoms to mercury-silver dental amalgams and get cured that way.
I experimented with so many things, that sometimes got me in trouble. It took me decades to figure it out. I tried different doctors, exercising techniques, herbs, vitamins, minerals, foods, bee pollen, chiropratic care, massage, and even tried drinking pure filtered water. I read and read books to try to learn more. I never wanted to believe that doctor who first told me in 1978 that I was too old, too fat, take 10 asprins a day, and not run more than a hundred yards. I'm now 51 years old and run almost 20 miles each week.
After my mercury-silver dental amalgams were replaced with white fillings about 8 years ago, I no longer have lower back pain, chest pain, severe urinary problems, muscle aches, loose teeth, gum disease, and headaches etc. It's only when I push myself to extremes with very heavy exercise, they some of these symptoms will return for a short while.
These are real pains that I suffered, that can not be seen or felt by a lot of doctors. I know what it's like to be so sick that you want to die. I've been there. That's what motivates me to write about it so much.
I realize also that a lot of you that have FM that it is still not understood, and does not have to be compared to my situation. But, at least it points out that some of you could be cured, if you found out the cause. Keep searching, questioning, and learning....
I wish you all well. I'm still learning also.
It's important to know that there's at least one reason why you shouldn't be depressed about it. Some day they might understand FM better and you could be cured. Or you could be someone like myself that linked fibromyalgia symptoms to mercury-silver dental amalgams and get cured that way.
I experimented with so many things, that sometimes got me in trouble. It took me decades to figure it out. I tried different doctors, exercising techniques, herbs, vitamins, minerals, foods, bee pollen, chiropratic care, massage, and even tried drinking pure filtered water. I read and read books to try to learn more. I never wanted to believe that doctor who first told me in 1978 that I was too old, too fat, take 10 asprins a day, and not run more than a hundred yards. I'm now 51 years old and run almost 20 miles each week.
After my mercury-silver dental amalgams were replaced with white fillings about 8 years ago, I no longer have lower back pain, chest pain, severe urinary problems, muscle aches, loose teeth, gum disease, and headaches etc. It's only when I push myself to extremes with very heavy exercise, they some of these symptoms will return for a short while.
These are real pains that I suffered, that can not be seen or felt by a lot of doctors. I know what it's like to be so sick that you want to die. I've been there. That's what motivates me to write about it so much.
I realize also that a lot of you that have FM that it is still not understood, and does not have to be compared to my situation. But, at least it points out that some of you could be cured, if you found out the cause. Keep searching, questioning, and learning....
I wish you all well. I'm still learning also.
AnnD
01-28-2002, 12:22 PM
According to research I have read...this syndrome didn't get much attention until formally named in 1990 by the American College of Rheumatology...with that more and more physicians are adding additional signs and symptoms to the ever increasing list. At this point in time I don't believe that the medical field truely knows much about this syndrome(as they call it). All they know now is what we tell them and if you happen to have a doctor that keeps current or actually believes in this diagnosis then you are lucky. I have yet to find a physician that would even give you this diagnois let alone give you on going pain meds. I have recently moved to a remote area where I am sure that I would not even be getting Ultram had I not been on it when I got here. The physician is afraid he will be arrested for giving me a routine supply(Ultram 100mg 4 tab/day) and suggested I go off the drug(for HIS benefit not mine). However, he could not/ would not recommend anything to replace it. Nor would he even discuss 'how are things going'... Only because I stand my ground and insist that he, at the very least, treat my pain which he does...but he will not talk about it.
I don't think anyone is giving out unscientific advice, it just hasn't been researched long enough by more...(although we all know this medical condition has been around a very long time). It is certain that many, many physicians will not acknowledge that this diagnosis exsists.
So who knows whether this is 'scientifically' progressive or not...it depends on so much...your age, other diagnois, the list is endless.
As others have suggested... it is all in your attitude and coping skills. I have it...I treat it the best that I can. I go to bed in pain and I wake up in pain. I don't dwell on it but I keep up with new or different ideas and approaches and enjoy this board. I laugh alot and depend on my husband to fill in the words that are 'fogged' out. And for now, for me, that is good enough.
I don't think anyone is giving out unscientific advice, it just hasn't been researched long enough by more...(although we all know this medical condition has been around a very long time). It is certain that many, many physicians will not acknowledge that this diagnosis exsists.
So who knows whether this is 'scientifically' progressive or not...it depends on so much...your age, other diagnois, the list is endless.
As others have suggested... it is all in your attitude and coping skills. I have it...I treat it the best that I can. I go to bed in pain and I wake up in pain. I don't dwell on it but I keep up with new or different ideas and approaches and enjoy this board. I laugh alot and depend on my husband to fill in the words that are 'fogged' out. And for now, for me, that is good enough.
Mary Crimmins
03-29-2002, 06:12 AM
Not progressive? Are you kidding? I've progressed to a stage where I can't get out of bed some days.I could use my left arm a year ago.I can only use it now for light tasks.This stuff is progressive!
:nono:
:nono:
LHowells
03-29-2002, 04:00 PM
Hiya Mary,
Yes, I too believer FMS is progressive. I was diagnosed back in 1992 after a car accident. Mine was so bad at the time, I cried when I ran the vacuum. Mine seemed to have hit a low right then. I was enrolled in a month long program to help me cope with it. They taught us exercise techniques, meditation and to not use drugs and alcohol for the pain. I slowly improved over the years. I lived and suffered with the constant pain because I was taught, I'm a soldier, grin and bear it. I sort of went threw a remission where the pain was just a dull all over aching that the heating pad would take care of and of course my old buddy 800mg Motrin. Last summer I switched to a natural thyroid medicine that I turned out to be allergic to and was kept on this medicine for 3 months. That's when the full blown FMS started all over again. And now I think it's worse than before the remission. See how delicately we are balanced? Who would have thought something as minor as an allergic reaction could have brought this on double again. My prayers are with you and all the rest of you guys at this time of rejuvination. :angel:
Kim
http://www.healthboards.com/ubb/dance.gif
Yes, I too believer FMS is progressive. I was diagnosed back in 1992 after a car accident. Mine was so bad at the time, I cried when I ran the vacuum. Mine seemed to have hit a low right then. I was enrolled in a month long program to help me cope with it. They taught us exercise techniques, meditation and to not use drugs and alcohol for the pain. I slowly improved over the years. I lived and suffered with the constant pain because I was taught, I'm a soldier, grin and bear it. I sort of went threw a remission where the pain was just a dull all over aching that the heating pad would take care of and of course my old buddy 800mg Motrin. Last summer I switched to a natural thyroid medicine that I turned out to be allergic to and was kept on this medicine for 3 months. That's when the full blown FMS started all over again. And now I think it's worse than before the remission. See how delicately we are balanced? Who would have thought something as minor as an allergic reaction could have brought this on double again. My prayers are with you and all the rest of you guys at this time of rejuvination. :angel:
Kim
http://www.healthboards.com/ubb/dance.gif
babygerald
03-29-2002, 09:55 PM
Ann and others,
That's exactly what Im trying to say. We don't know enough about it to say it IS or ISNT progressive for everyone. I know that in the cases I have seen, and in my own case it is not...it waxes and wanes with stress, weather, etc. But overall I've been lucky. As for those who get worse, it could be a matter of coping tactics OR some coexisting physical or psychological condition that contributes to it...the leader of our support group has FMS AND OA so her condition is a bit worse than most of the others in the group, but she has adapted coping tactics that have helped her live normally...she's a strong woman, far stronger than I ever would be with something like arthritis...so aside from all the other medical factors (whether it's FMS or some other condition mimicking it) there are also lifestyle and spiritual and self-image issues (as with any disease)...All I was saying before is that I dont like it when it is said that FMS is progressive all the time for all people so let's all give up...it's strange that Im such an optimist with this condition, Im the most pessimistic (even cynical) person I know...but I have learned to take on positive attitudes and execute useful measures from the scientific research from reputable journals on what little we know of this condition so far...who knows down the road I may find out I have something completely different while others have been dealing with a progressive disease of some other sort...too many questions...Im with Kim in the hopes that these questions will find answers in the years to come...we have a long way to go in our understanding, but as one FMS researcher at the Mayo Clinic said, "we know much more than we did just three years ago."
Ric
That's exactly what Im trying to say. We don't know enough about it to say it IS or ISNT progressive for everyone. I know that in the cases I have seen, and in my own case it is not...it waxes and wanes with stress, weather, etc. But overall I've been lucky. As for those who get worse, it could be a matter of coping tactics OR some coexisting physical or psychological condition that contributes to it...the leader of our support group has FMS AND OA so her condition is a bit worse than most of the others in the group, but she has adapted coping tactics that have helped her live normally...she's a strong woman, far stronger than I ever would be with something like arthritis...so aside from all the other medical factors (whether it's FMS or some other condition mimicking it) there are also lifestyle and spiritual and self-image issues (as with any disease)...All I was saying before is that I dont like it when it is said that FMS is progressive all the time for all people so let's all give up...it's strange that Im such an optimist with this condition, Im the most pessimistic (even cynical) person I know...but I have learned to take on positive attitudes and execute useful measures from the scientific research from reputable journals on what little we know of this condition so far...who knows down the road I may find out I have something completely different while others have been dealing with a progressive disease of some other sort...too many questions...Im with Kim in the hopes that these questions will find answers in the years to come...we have a long way to go in our understanding, but as one FMS researcher at the Mayo Clinic said, "we know much more than we did just three years ago."
Ric
vegas nerve
04-13-2002, 08:48 PM
What is wrong with the first person to post this message? Have the ones that think this is not progressive not read anything on othrer deseases such as MS, which clearly is a close neighbor of FM. There are three different types of MS and one of them is prgressive. Even though it can go into remission for a time it will come back with a vengence. And how long have they been studying MS before they found that out? FM has so many symptoms that the list is huge and not everyone has them all or as bad as the next person. I started out slow, and now I don't have good days anymore. I always hurt and I am always weak from it. Sometimes I am so weak that I can't talk above a whisper. Don't force your beliefes on others just because you have been LUCKY so far. What about people that live in different areas of the world than you do and different climates? Doctors have just found out that this has a bearing on FM.
babygerald
04-13-2002, 11:25 PM
I guess I have to reiterate what I have already reiterated...from what we DO know about FM it doesnt appear to be progressive in most cases, provided that things are done to keep it under control...this is based on our best knowledge of the widest population of those unfortunate enough to have an FMS diagnosis...however, as I stated above as well, we must also acknowledge what we don't know...in the end, to each his/her own experience...simply stating my own experience and the findings of well-constructed studies (given BY FMS sufferers themselves) is not forcing my beliefs, rather stating a view for debate...hopefully one day we'll know who has FMS and who has something else, and what causes FMS and how to treat it more thoroughly...this I hope and pray...
Be well,
Ric
Be well,
Ric
sujenke
04-14-2002, 09:30 PM
Wow. I've never noticed a poster "forcing" his beliefs on another on this board. Lively debate and learning from others different experiences will be ultimately what helps us all - it's just the start of the scientific process.Maybe some FMS is progressive and some isn't. This is good - maybe some research can be done to see why some cases are less severe than others - something that will STOP FMS from being progressive, and maybe even cure it. Just like any disease, people will suffer in different ways.
Susan
Susan
korken
04-14-2002, 10:02 PM
Here, Here http://www.healthboards.com/ubb/bang.gif
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Take care ~Kim & Gary~
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Take care ~Kim & Gary~
babygerald
04-15-2002, 01:18 AM
Thanks for articulating that so well!
SamQKitty
04-15-2002, 03:31 AM
Okay, I've been meaning to put my 2 cents worth in for a while, so here it is (of course since I have FM, it's probably only worth about 1 1/2 cents, but....)
The term "progressive" is usually used in the medical field to denote something that can be verified/quantified and shows destruction of some kind of tissue, i.e., chronic progressive MS, where they can show the destruction to the myelin sheath of the nerves; cancer, where they can document through blood tests or radiologic scans the progression of the cancer; rheumatoid arthritis, where they can show through bone scans and x-rays the damage to the joints.
If my understanding of the term "progressive" is correct, the reason they don't refer to FM as a progressive illness is that there appears to be no documented destruction of anything, even though the symptoms may wax and wane (and get much worse over time with each flare up). There are many more studies being done re the central nervous system that may end up showing that FM is indeed a progressive illness, but right now it appears to be a function problem rather than a destruction problem.
Whether it's progressive or not, the key question is...when the heck are they going to develop a good treatment that works for most patients? Why is the money that had been allocated by congress to the NIH for study of FM/CFIDS not being used for its intended purpose, and finally, when are all the old attitudes on the part of some doctors and the general public going to change?
By the way Kim, how goes it with SSDI???
The term "progressive" is usually used in the medical field to denote something that can be verified/quantified and shows destruction of some kind of tissue, i.e., chronic progressive MS, where they can show the destruction to the myelin sheath of the nerves; cancer, where they can document through blood tests or radiologic scans the progression of the cancer; rheumatoid arthritis, where they can show through bone scans and x-rays the damage to the joints.
If my understanding of the term "progressive" is correct, the reason they don't refer to FM as a progressive illness is that there appears to be no documented destruction of anything, even though the symptoms may wax and wane (and get much worse over time with each flare up). There are many more studies being done re the central nervous system that may end up showing that FM is indeed a progressive illness, but right now it appears to be a function problem rather than a destruction problem.
Whether it's progressive or not, the key question is...when the heck are they going to develop a good treatment that works for most patients? Why is the money that had been allocated by congress to the NIH for study of FM/CFIDS not being used for its intended purpose, and finally, when are all the old attitudes on the part of some doctors and the general public going to change?
By the way Kim, how goes it with SSDI???
darlene
04-15-2002, 03:58 AM
BabyGerald - you should thank your lucky stars and knock on wood. Evidently, you have been very fortunate in that your FM is not progressive. I have had Fibromyalgia for a long time. At first, it was the feelings of coming down with the flu, aches, pains, etc., then it would go away especially when the weather was warmer. Now, at age 55 it has progressed to the point of having to discontinue my career from a job that I dearly loved, excellent pay, and excellent benefits. I feel "left out" of the loop so to speak because after working for 40 years it is a very isolating feeling to no longer have that peer contact with people from work. Friends and families do not understand what I go through, I look normal - except when I can't walk or make it up or down the stairs or cry out when I start having muscle spasms that no amount of physical therapy or pain medication even touches.
So again, be thankful for what you don't have.
So again, be thankful for what you don't have.
babygerald
04-16-2002, 09:53 AM
SamQKitty,
I took a class on how to construct studies for scientific research, and that's one of the most important things they teach us is defining each and every critical term that's involved. Thus, I made certain that progressive was clearly defined in the studies I cited that found FMS not to be progressive. However, there are obviously other definitions for the word: the one you stated is new to me (but I'm no medical expert, far from it), and as well Ive heard it used to refer to diseases that "progress" into more serious diseases. The studies I have cited defined "progressive" as feeling worse, as reported by FMS sufferers themselves. This I think was qualitatively sound if not quantitatively useful. In the end, I guess it depends both on how you define "progressive" and how you define "worse"...my pain levels have certainly dropped, even though brain fog has stayed the same and IBS has actually worsened. There's some fifty symptoms of this God awful syndrome, so I guess it more or less depends on how much one can tolerate of any of the myriad symptoms. Sometimes the IBS annoys me and is quite intrusive to my efforts to live normally...so I may at those times consider my condition as worsening...other times it is in actuality worse but it doesn't bother me so I don't think of it as worse. I suppose only when FMS ceases to be such a nebulous term (when we have objective, observable signs of this condition) will there ever be a consensus...and as others have written that won't happen until we find out more--which won't happen until we get the research funding needed to do the job.
Be well,
Ric
I took a class on how to construct studies for scientific research, and that's one of the most important things they teach us is defining each and every critical term that's involved. Thus, I made certain that progressive was clearly defined in the studies I cited that found FMS not to be progressive. However, there are obviously other definitions for the word: the one you stated is new to me (but I'm no medical expert, far from it), and as well Ive heard it used to refer to diseases that "progress" into more serious diseases. The studies I have cited defined "progressive" as feeling worse, as reported by FMS sufferers themselves. This I think was qualitatively sound if not quantitatively useful. In the end, I guess it depends both on how you define "progressive" and how you define "worse"...my pain levels have certainly dropped, even though brain fog has stayed the same and IBS has actually worsened. There's some fifty symptoms of this God awful syndrome, so I guess it more or less depends on how much one can tolerate of any of the myriad symptoms. Sometimes the IBS annoys me and is quite intrusive to my efforts to live normally...so I may at those times consider my condition as worsening...other times it is in actuality worse but it doesn't bother me so I don't think of it as worse. I suppose only when FMS ceases to be such a nebulous term (when we have objective, observable signs of this condition) will there ever be a consensus...and as others have written that won't happen until we find out more--which won't happen until we get the research funding needed to do the job.
Be well,
Ric
scbagrrrl
04-21-2002, 04:16 AM
I prefer to think of mine as more of a roller-coaster ride in the dark.
korken
04-22-2002, 12:31 AM
:D: We love the way you say it http://www.healthboards.com/ubb/t_up.gif Scabagrrrl http://www.healthboards.com/ubb/bang.gif
------------------
Take care ~Kim & Gary~
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Take care ~Kim & Gary~
AnnD
04-22-2002, 01:26 PM
sooooo Babygerald,Ric or Rico...whatever you prefer. I am not sure what it is you are trying to accomplish here on this board. From all your posts you say you are having no symptoms to speak of...that you were right on top of this as soon as diagnosed with Elavil and Alapam and exercise(walking). Yet you speak as though you are in the middle of crisis and seem really intent on focusing everyone on your point of view. Sometimes you are successful and other times are ignored. But You seem adamant that FMS is not progressive so for you this must be true... But having no symptoms... I am curious as to your many posts? Is there something more we all can do to support you in your 'somewhat newly married' out of work times. Must be hard as a very educated American in Australia and only able to get Volunteer work? You have put a lot of energy in trying to educate and impress us with all this 'scientific' information so you must spend a considerable amount of time on research...something you must be used to doing since you did spend many years in college. And we all know how science is...today it is one thing and tomorrow someone will have yet another proven theory. So I am thinking that there is more that we could do for you in your time of need? Perhaps, you are part of the Depression board as well? That would be a good thing. So what can we do for you...it sounds like you need a great deal of support but not so much with FMS. How is life in Australia?
babygerald
04-22-2002, 10:19 PM
AnnD,
Call me whatever you want.
I'm not sure what you're trying to accomplish with that post. Sorry if I sound pretentious or pedantic...this is research anyone can do, and when one has this condition one really must do because so many of the med community and general public remain ignorant/puzzled/misguided about it. I do have symptoms, I have stated some of them above. Others: I have shoulder aches and stiffness, occassionally hip flares and some lower back pain. I am not trying to seem like a know-it-all...if that's how I've come off, then it is indicative of how limited expression can be over the Internet. Many people have armed themselves with the little knowledge we do have of this syndrome. I am not the only one, nor profess to be. I am not here to teach as I am not a med professional. My education is in writing and research. There's nothing wrong with bringing what one has learned into everyday life: isn't that the point of learning? And I don't see how a personal attack on my job situation will be productive in any way. Besides, I find volunteer work necessary as it keeps my mind off of the symptoms.
Again, I'm not sure what you are saying in this post. The tone is a little uneven. All I know is that my aim was to start a debate, not to initiate character assassinations.
As to my depression, it was the usual seasonal thing and I have recovered. It's been by God's strength and not my own. I am here on this list to learn from others. I read posts and gain a better understanding of this condition and how it is experienced by others. I never intended to "push" my views or to "convince" everyone here that it is not progressive.
I never said I got "right on top" of this condition. I was bedridden for about two months with EBV before I learned to control the FMS symptoms. So before making assumptions and then attacking based on those assumptions, at least make an effort to know what you're talking about. I do have problems with this condition, but as many others here, I try to put a positive spin on it and educate myself so I know what the hell is going on when I feel like sh*t. I will not allow myself to spiral into depths of despair, even when the symptoms are at their sharpest. I never suggested I had no symptoms...but I do believe there are those out there who have them much worse than I do and are displaying the utmost in bravery in living "normal" lives despite the pain. And I try to live by their example.
My life here is just fine. As are the lives of those who have learned to control and cope with FMS. Does it help you cope to ridicule people you hardly know?
[This message has been edited by babygerald (edited 04-22-2002).]
Call me whatever you want.
I'm not sure what you're trying to accomplish with that post. Sorry if I sound pretentious or pedantic...this is research anyone can do, and when one has this condition one really must do because so many of the med community and general public remain ignorant/puzzled/misguided about it. I do have symptoms, I have stated some of them above. Others: I have shoulder aches and stiffness, occassionally hip flares and some lower back pain. I am not trying to seem like a know-it-all...if that's how I've come off, then it is indicative of how limited expression can be over the Internet. Many people have armed themselves with the little knowledge we do have of this syndrome. I am not the only one, nor profess to be. I am not here to teach as I am not a med professional. My education is in writing and research. There's nothing wrong with bringing what one has learned into everyday life: isn't that the point of learning? And I don't see how a personal attack on my job situation will be productive in any way. Besides, I find volunteer work necessary as it keeps my mind off of the symptoms.
Again, I'm not sure what you are saying in this post. The tone is a little uneven. All I know is that my aim was to start a debate, not to initiate character assassinations.
As to my depression, it was the usual seasonal thing and I have recovered. It's been by God's strength and not my own. I am here on this list to learn from others. I read posts and gain a better understanding of this condition and how it is experienced by others. I never intended to "push" my views or to "convince" everyone here that it is not progressive.
I never said I got "right on top" of this condition. I was bedridden for about two months with EBV before I learned to control the FMS symptoms. So before making assumptions and then attacking based on those assumptions, at least make an effort to know what you're talking about. I do have problems with this condition, but as many others here, I try to put a positive spin on it and educate myself so I know what the hell is going on when I feel like sh*t. I will not allow myself to spiral into depths of despair, even when the symptoms are at their sharpest. I never suggested I had no symptoms...but I do believe there are those out there who have them much worse than I do and are displaying the utmost in bravery in living "normal" lives despite the pain. And I try to live by their example.
My life here is just fine. As are the lives of those who have learned to control and cope with FMS. Does it help you cope to ridicule people you hardly know?
[This message has been edited by babygerald (edited 04-22-2002).]
sujenke
04-22-2002, 10:37 PM
I enjoy your posts, Ric, and I like seeing what others' experiences are. Hang in there!
Susan
Susan
SamQKitty
04-23-2002, 12:53 AM
Ric -
I've found all your posts to be intelligent, well presented, and extremely thoughtful. Maybe Ann D was having a bad day, or maybe she misinterpreted something (in all fairness, don't we all have days like that...you feel like s**t, you read a post, you react, then you re-read the post and realize...it didn't say what you thought it said!)
This discussion on whether FM is progressive has been really interesting. I think it's very true, Ric, that one has to define one's terms carefully. Unfortunately, the term "progressive" isn't a truly scientific term as even different researchers and doctors can mean different things by it.
My rheumatologist's take is that "FM may not be progressive, but it's still the pits"...I told him I was so pleased that he wasn't afraid to use technical language like "the pits" when discussing things with a patient! WhenI see some of these postings, I'm reminded how very LUCKY I am that I have truly terrific doctors who all have great senses of humor, but take me and my medical problems very seriously.
Ann D...I don't mean to sound dismissive of your thoughts by what I said above, but it really did sound like you were/are having a rough time of it...I know it's really hard to do when you feel awful, but laughing at ourselves is sometimes the only way to just get through it! I've had high blood pressure for years, had a heart attack 15 years ago, have had diabetes since 1983, and FM since 1987 (not to mention GERD and chronic gastritis). Last year I was diagnosed with cancer. My primary care physician was so upset that I had to deal with yet another serious illness, but my response was "hey, this is the first thing I've ever got that's probably curable!" And, hopefully, it's been cured!
I post on several boards (see previous laundry list of illnesses...!), but I have to say that the FM board is my favorite...you guys are the best!
Ruth
I've found all your posts to be intelligent, well presented, and extremely thoughtful. Maybe Ann D was having a bad day, or maybe she misinterpreted something (in all fairness, don't we all have days like that...you feel like s**t, you read a post, you react, then you re-read the post and realize...it didn't say what you thought it said!)
This discussion on whether FM is progressive has been really interesting. I think it's very true, Ric, that one has to define one's terms carefully. Unfortunately, the term "progressive" isn't a truly scientific term as even different researchers and doctors can mean different things by it.
My rheumatologist's take is that "FM may not be progressive, but it's still the pits"...I told him I was so pleased that he wasn't afraid to use technical language like "the pits" when discussing things with a patient! WhenI see some of these postings, I'm reminded how very LUCKY I am that I have truly terrific doctors who all have great senses of humor, but take me and my medical problems very seriously.
Ann D...I don't mean to sound dismissive of your thoughts by what I said above, but it really did sound like you were/are having a rough time of it...I know it's really hard to do when you feel awful, but laughing at ourselves is sometimes the only way to just get through it! I've had high blood pressure for years, had a heart attack 15 years ago, have had diabetes since 1983, and FM since 1987 (not to mention GERD and chronic gastritis). Last year I was diagnosed with cancer. My primary care physician was so upset that I had to deal with yet another serious illness, but my response was "hey, this is the first thing I've ever got that's probably curable!" And, hopefully, it's been cured!
I post on several boards (see previous laundry list of illnesses...!), but I have to say that the FM board is my favorite...you guys are the best!
Ruth
babygerald
04-23-2002, 01:11 AM
Ruth,
I've had the same experience with docs (with the exception of a hotshot rheumie who told me FMS was "psychosomatic"--tantamount to "you're nuts"). It's been a real blessing to have a doc who understands, out of the five I've seen, three believed in and had a good understanding of FMS...and that's invaluable. Probably the main reason I generally do well with this condition.
Some days, not so well, and those are the days I get pissed off too...usually just at the world in general...you know the usual tyraid they can clone humans but they can't cure FMS...so, yes, we all rant from time to time.
The invaluable thing about this board is the open discussion about something still struggling for recognition from the larger med community. All of us affected to varying degrees by this syndrome are allowed to share what we've learned, read the current research that's out there, and yes rant as well...sometimes it helps.
I've had the same experience with docs (with the exception of a hotshot rheumie who told me FMS was "psychosomatic"--tantamount to "you're nuts"). It's been a real blessing to have a doc who understands, out of the five I've seen, three believed in and had a good understanding of FMS...and that's invaluable. Probably the main reason I generally do well with this condition.
Some days, not so well, and those are the days I get pissed off too...usually just at the world in general...you know the usual tyraid they can clone humans but they can't cure FMS...so, yes, we all rant from time to time.
The invaluable thing about this board is the open discussion about something still struggling for recognition from the larger med community. All of us affected to varying degrees by this syndrome are allowed to share what we've learned, read the current research that's out there, and yes rant as well...sometimes it helps.
korken
04-23-2002, 01:39 AM
Ric,
We love ya you know http://www.healthboards.com/ubb/bang.gif We want to ditto the above understanding comments.
As you well know we like to have a good debate now and then. It helps get the blood flowing and gee it even helps my brain get a work out. :D:
This is what is so great about this board.
UNDERSTANDING each others pain.
What is the old saying about lashing out at those who care about you. For who else would reach back and be there when your in need.
------------------
Take care ~Kim & Gary~
We love ya you know http://www.healthboards.com/ubb/bang.gif We want to ditto the above understanding comments.
As you well know we like to have a good debate now and then. It helps get the blood flowing and gee it even helps my brain get a work out. :D:
This is what is so great about this board.
UNDERSTANDING each others pain.
What is the old saying about lashing out at those who care about you. For who else would reach back and be there when your in need.
------------------
Take care ~Kim & Gary~
LisaJ2002
04-26-2002, 12:34 AM
It never ceases to amaze me as people are always taking this tormenting illness and twisting and turning it around to be this and that and bla bla bla..
No one person can say this or that because this illness does what ever the heck it wants to do, to whom wants to do it, how it wants, how much it wants and when it wants.
Very few of us suffer alike or even close to it.
In my opinion and that of several of my fellow suffers of FM, FOR SOME OF US it does progress, it does get worse. From day 1, I started with an occasional flare up that was about a 5-6 on the pain scale. I am now in day 820 and I am a 8-10 on the pain scale and that is 25-28 days out of 30-31 days per month. I never get a freaking break, I don't know if I ever will.. But it does kind of erk me that some of us go through what I once called progressive hell, and then there are others who are out there saying it just aint so. Personally, I could care less, I'm still gonna hurt when I hurt.
Thing is, if you are genuinely lucky enough to have escaped FM progression you should be thanking your lucky stars, your God or whatever... Not wasting time telling people like myself, that all the time I have progressed into more horrid pain then ever before, means I am possibly delussional, dreaming, or just crazy. You don't use these words, but a person who is sensative in nature or just plain sensative due to this nightmare called FM, could take it that way. Perhaps that is what some people are trying to say..
I've not only progressed in my illness, I have progressed on a daily basis as well as weekly, monthly and yearly.
Does babygeralds post bother me...? Ha! No way! I am glad he doesn't suffer the torment I do!! I am glad he thinks the way he does, because if he was in hell like me and so many others on a 24-7 basis... He'd be writing this instead of me... I wouldn't wish my present life on any one.. I do however plan to beat this thing and nobody should give up!! I think we all know what depression gets us, but who wouldn't get depressed on occasion? We just have to push through!!
More power to ya!!
No one person can say this or that because this illness does what ever the heck it wants to do, to whom wants to do it, how it wants, how much it wants and when it wants.
Very few of us suffer alike or even close to it.
In my opinion and that of several of my fellow suffers of FM, FOR SOME OF US it does progress, it does get worse. From day 1, I started with an occasional flare up that was about a 5-6 on the pain scale. I am now in day 820 and I am a 8-10 on the pain scale and that is 25-28 days out of 30-31 days per month. I never get a freaking break, I don't know if I ever will.. But it does kind of erk me that some of us go through what I once called progressive hell, and then there are others who are out there saying it just aint so. Personally, I could care less, I'm still gonna hurt when I hurt.
Thing is, if you are genuinely lucky enough to have escaped FM progression you should be thanking your lucky stars, your God or whatever... Not wasting time telling people like myself, that all the time I have progressed into more horrid pain then ever before, means I am possibly delussional, dreaming, or just crazy. You don't use these words, but a person who is sensative in nature or just plain sensative due to this nightmare called FM, could take it that way. Perhaps that is what some people are trying to say..
I've not only progressed in my illness, I have progressed on a daily basis as well as weekly, monthly and yearly.
Does babygeralds post bother me...? Ha! No way! I am glad he doesn't suffer the torment I do!! I am glad he thinks the way he does, because if he was in hell like me and so many others on a 24-7 basis... He'd be writing this instead of me... I wouldn't wish my present life on any one.. I do however plan to beat this thing and nobody should give up!! I think we all know what depression gets us, but who wouldn't get depressed on occasion? We just have to push through!!
More power to ya!!