Dale
02-15-2001, 01:51 PM
I was going through webmed and found some good reading. Thought this was a good one. http://my.webmd.com/content/article/1700.50090
------------------
Dale
------------------
Dale
Sponsor
cioc1212
02-16-2001, 12:16 PM
Dale, for me it's been very important to keep an open mind and not rule anything out, either causation or treatment for FM. Since the diagnoses, cause and cure are very much in dispute, I wouldn't rule out the possibility that different things may be triggers for different people, some may have borderline thyroid while others may have a seratonin imbalance or that a physical trauma triggers the FM. Even the "definitive" tender/trigger point touch test is in dispute with some doctors finding it invalid. I take everything I hear with a grain of salt,whether it's from the layman or the "experts". I think that people need to look at what triggers their flares and what helps them to control their symtoms, it seems to vary from person to person.
Dale
02-16-2001, 02:06 PM
I read every thing I can about fms and cfs that is by doctors that are specialists in cfs and fms. I have both. I don't understand your answer. Are you saying that you disagree with the doctors from the information? Everyone is different and treatments are not the same. Some are miss diagnoised to. They have another disease that mimics fms or cfs. Is that what you mean? That is very true. I had a friend that really had cancer and another that had MS. I agree get all the tests that you can. They were diagnoised with fms. It is so hard to find the right information when the medical professionals can't decide what it is. This is all very frustrating to deal with. Sleep studies, MRI's, urine, blood, Pills, etc. I read that fms responds well to Watsu. It's in warm water and they hold you up and massage you for 75 mins. You just float. I want to try that. Hopefully soon.
------------------
Dale
------------------
Dale
sujenke
02-16-2001, 10:33 PM
I found this article interesting! I find it SO interesting to read the opinions of different specialists and see how it relates to me. I'm glad that there's alot of interest out there in the medical community about FMS nowadays - I'm sure my Mom had it 25 years ago, but it was completely dismissed by doctors as "stress". I'm excited to see what will be discovered about FMS now that it is being taken more seriously by doctors!
Dale
02-17-2001, 01:01 PM
Sujenki, I want to know all I can. :) I search everywhere to find out the most recent developments in fms and cfs. I am checking out every avenue I can find. I have looked at many boards also. I am very happy to finnally see doctors specialising in what we have. Not to easy to find but did as I said on that told good fms and cfs site posted below. Now that I finnally found a doctor that is board certified in fms and cfs as well as infectious disease.I feel more confident.
------------------
Dale
------------------
Dale
cioc1212
02-17-2001, 02:54 PM
Gee Dale, where is your doctor located? It might be helpful to some of the others who can't make it to the board certified doc here in Eastern PA......
cioc1212
02-18-2001, 02:43 PM
Dale, I did disagree with several things that doctor said, he was a little too definitive in his answers, no one has the whole story on FM, that's part of the frustration. I wasn't reacting to you as much as the site. It's overwhelming since there are so many ideas and opinions, so many people saying it's this or that. I also distrust laypeople who act like they have all the answers since it seems like we all react differently to treatment. It's been important to me to keep an open mind, especially since I can't take a lot of medications.
[This message has been edited by cioc1212 (edited 02-18-2001).]
[This message has been edited by cioc1212 (edited 02-18-2001).]
[This message has been edited by cioc1212 (edited 02-18-2001).]
[This message has been edited by cioc1212 (edited 02-18-2001).]
Copper
02-18-2001, 07:19 PM
Originally posted by Dale:
I was going through webmed and found some good reading. Thought this was a good one. http://my.webmd.com/content/article/1700.50090
Hi Dale, thanks for posting this. Interesting read.
I agree with the majority of what they were saying, too. Except that, they seemed to speak in absolutes, ie, they believe their own theory, but don't seem to leave room for other theories and/or upgraded beliefs.(ie, the pyschological factor they present as controlling pain/stress perception and response. They SEEM to ignore the chemical factor, which is pretty conclusive, re: levels of substance P) I don't feel ANYONE (from a scientific standpoint) has ALL the answers, not them, me, you, or ANYONE. Not yet, anyway.
One absolute (I felt)they stated I, personally, cannot agree with, is their statements about onset. Though their statements are true for many, it is not so for all. Example, at the time of Dx I was in better than average physical condition, was managing stress and life pretty well (YES, there are ALWAYS the unconcious stressors), ate a decent diet, loved life, and was, already, highly aware of the mind/body/spirit connection. In short, I accept their statements as a generality, but not as the absolutes with which I feel they were presented.
But, I still feel it was an excellent read, and I'll look forward to reading their book. I'm with cioc1212, - - a grain of salt. I still believe that we are best served by our OWN education from which we glean our own(individualized) healing truths.
I WHOLEHEARTEDLY believe, as they do, that it is VITAL to connect body WITH the mind, and JUST AS STRONGLY WITH the spirit. I also agree that we have the inherent ability to heal ourselves COMPLETELY when ALL contributing factors are addressed.
------------------
Copper
Let Miracles Replace all Grievances
[This message has been edited by Copper (edited 02-18-2001).]
I was going through webmed and found some good reading. Thought this was a good one. http://my.webmd.com/content/article/1700.50090
Hi Dale, thanks for posting this. Interesting read.
I agree with the majority of what they were saying, too. Except that, they seemed to speak in absolutes, ie, they believe their own theory, but don't seem to leave room for other theories and/or upgraded beliefs.(ie, the pyschological factor they present as controlling pain/stress perception and response. They SEEM to ignore the chemical factor, which is pretty conclusive, re: levels of substance P) I don't feel ANYONE (from a scientific standpoint) has ALL the answers, not them, me, you, or ANYONE. Not yet, anyway.
One absolute (I felt)they stated I, personally, cannot agree with, is their statements about onset. Though their statements are true for many, it is not so for all. Example, at the time of Dx I was in better than average physical condition, was managing stress and life pretty well (YES, there are ALWAYS the unconcious stressors), ate a decent diet, loved life, and was, already, highly aware of the mind/body/spirit connection. In short, I accept their statements as a generality, but not as the absolutes with which I feel they were presented.
But, I still feel it was an excellent read, and I'll look forward to reading their book. I'm with cioc1212, - - a grain of salt. I still believe that we are best served by our OWN education from which we glean our own(individualized) healing truths.
I WHOLEHEARTEDLY believe, as they do, that it is VITAL to connect body WITH the mind, and JUST AS STRONGLY WITH the spirit. I also agree that we have the inherent ability to heal ourselves COMPLETELY when ALL contributing factors are addressed.
------------------
Copper
Let Miracles Replace all Grievances
[This message has been edited by Copper (edited 02-18-2001).]
cioc1212
02-19-2001, 12:33 PM
Welcome Expand! I see that we're practically neighbors, I'm in Eastern PA also. My feeling is that a little healthy skepticism is good and that debate is also not a bad thing, you can learn and see other peoples point of view. Sometimes you may even change your way of thinking! If we all agreed on everything, it would be a boring life. I think that disagreement is good, as long as there are no attacks on a personal level. Because of some of the strong views and heated discussions on this board, I've considered several things that I normally would have blown off, such as the thyroid. Had those posters been wimpy or meek, I wouldn't have listened or it just wouldn't have caught my attention.
BTW - after pinning down both of my parents, I not only found out that there is a family history of thyroid problems, I also got an interesting statement from my father---"I always ache, I've been achy for years". Hmmmm....he's been very supportive of me with the FM but never MENTIONED his own problems!
[This message has been edited by cioc1212 (edited 02-19-2001).]
BTW - after pinning down both of my parents, I not only found out that there is a family history of thyroid problems, I also got an interesting statement from my father---"I always ache, I've been achy for years". Hmmmm....he's been very supportive of me with the FM but never MENTIONED his own problems!
[This message has been edited by cioc1212 (edited 02-19-2001).]
cioc1212
02-19-2001, 03:23 PM
Hi Expand, well I've been on the receiving end so I know how THAT feels! But I never let things like that stop me, I guess my skin has gotten thicker as I've gotten older. I do try to post about my own experience and what I've been told. I've gotten some great information from the board and I'm really fighting this illness with everything I've got! I'm so tired of feeling sick and tired!!
Copper
02-19-2001, 03:59 PM
Welcome ExpandedHorizons! Glad you found your way here. ;)
I think I must miss something on this board....the strong opinions and or conflicts? I caught the tail-end of one here, once, as someone was leaving the board due to someone else's opinions, but couldn't find the offending posts, and haven't run into any otheres. Or maybe it just goes over my head. Hmmmmmmmmmm, maybe I cause it? I dunno. Guess I'm traveling in oblivion. I've always been thrilled with the fact that I DON'T see conflict here, everyone just posts what they think, and its all ok. I guess these 'fogs' have a positive side, afterall :D
------------------
Copper
Let Miracles Replace all Grievances
I think I must miss something on this board....the strong opinions and or conflicts? I caught the tail-end of one here, once, as someone was leaving the board due to someone else's opinions, but couldn't find the offending posts, and haven't run into any otheres. Or maybe it just goes over my head. Hmmmmmmmmmm, maybe I cause it? I dunno. Guess I'm traveling in oblivion. I've always been thrilled with the fact that I DON'T see conflict here, everyone just posts what they think, and its all ok. I guess these 'fogs' have a positive side, afterall :D
------------------
Copper
Let Miracles Replace all Grievances
Valerie
02-19-2001, 10:59 PM
I just read the article. I'm sorry, but my response was "barf." Not very open-minded, huh? Seemed like more "blame to the victim" thinking to me...
Val
Val
Valerie
02-19-2001, 11:00 PM
BUT, it was an interesting read, so I meant to thank Dale for posting it!!
Sorry!!
Val
Sorry!!
Val
Dale
02-20-2001, 08:57 AM
WHAT RESPONCES. I JUST PICKED THE LAST ARTICLE I READ. THE 2 DOCTORS SAY A LOT. SUCH VIVID RESPONCES. PRO AND CON. YOU ARE WELCOME. THE TYROID SURE BROUGHT UP A LOT OF SOUR SPOTS. ALL THEY SAY IS THAT FMS AND THYROID ARE NOT CONNECTED. I HAVE READ AS I SAID BEFORE ABOUT PEOPLE BEING MISSDIAGNOISED. IS THIS THE PROBLEM. DIFFERENT WAYS OF THINKING, WHAT IS THE CAUSE. GOOD! WE SHOULD QUESTION AND LEARN ALL WE CAN. NO MATTER WHAT WE BELIEVE.
------------------
Dale
------------------
Dale
cioc1212
02-20-2001, 09:38 AM
Kim, we are back to the same old story. It is WRONG to repeatedly attack people when you don't believe the same things they do. NO ONE knows for sure what causes FM so how can anyone say it ISN'T thyroid??? If people believe that it is, why not leave them alone to post about it? Why come on and leave posts and pull articles saying that it isn't? I wouldn't rule anything out and I do think that it's important for EVERYONE to have their thyroid levels checked and to question their levels. Just because you personally think that you have the best doctor(board certified,etc) and all the answers doesn't mean that you have to knock down those who believe differently with repeated posts to the contrary. I do not believe in several of the things that have gotten posted to the board but I am polite and I keep an open mind. It is so easy to say "Thank you for that information" and then to walk away. Why repeatedly try to prove them wrong? To Each His Own. Live and Let Live.
This is the same thing that happened when I posted about exercise. I got repeated posts about "It doesn't work" and "it makes you worse". Why is it so hard to say "That is great that it works for you!" ??
This is the same thing that happened when I posted about exercise. I got repeated posts about "It doesn't work" and "it makes you worse". Why is it so hard to say "That is great that it works for you!" ??
cioc1212
02-20-2001, 11:21 AM
To each his own.
[This message has been edited by cioc1212 (edited 02-20-2001).]
[This message has been edited by cioc1212 (edited 02-20-2001).]
cioc1212
02-20-2001, 11:59 AM
To each his own.......
[This message has been edited by cioc1212 (edited 02-20-2001).]
[This message has been edited by cioc1212 (edited 02-20-2001).]
Valerie
02-20-2001, 03:01 PM
LOL!! Did I read the wrong article? The one I read wasn't about thyroid, except one comment about it not being connected to FM. What I saw in the article that came up was an interview with 2 docs about the mind/body/spirit connection. It seemed to me that their views echoed the Oprah program title, with the implication that FM is a mental or spiritual disorder -- "all in your head." In my opinion, there is definite value in viewing any kind of physical ailment from a wholistic perspective, just as long as you don't end up accusing people of consciously/unconsciously choosing to have FM or get cancer or whatever. There can be a fine line between a wholistic approach to dis-ease vs. "blaming the victim" for his or her own illness, and I'm not at all in favor of the latter. There's been too much of that with FM/CFS already. Any wholistic treatments that work for anyone are GREAT, as you say, Ciocc!! But, if a treatment DOESN'T work, will the patients' MINDs or SPIRITs take the blame, so they have to both feel badly for getting the disease in the first place and then for not getting cured from it, too? AARGH!
Val
Val
Copper
02-21-2001, 04:52 AM
Whoa! Did I miss something again? Did Kim post on this topic? I missed it, if she did.
Val, I think I understand what you gleaned from this article. But, I'm sensing from your response that they (the writers of the article) were not able to accurately explain their message to you and probably lots of others.
The understanding I got from the article was not about the psychological aspect of our pain 'being in the head' as much as it was about the physical aspect of it being in the head. Not that we can control this pain with our emotions, willpower, whatever, but that physical channels within the brain, ie, energy, chemical, nutrient, etc., pathways are not functioning correctly. The tools to repair these things are lifestyle changes, meditation and other stress reduction techniques, diet management, etc.
But then, I may be way off base and missing the intention of their disregard and/or their point. :eek:
------------------
Copper
Let Miracles Replace all Grievances
Val, I think I understand what you gleaned from this article. But, I'm sensing from your response that they (the writers of the article) were not able to accurately explain their message to you and probably lots of others.
The understanding I got from the article was not about the psychological aspect of our pain 'being in the head' as much as it was about the physical aspect of it being in the head. Not that we can control this pain with our emotions, willpower, whatever, but that physical channels within the brain, ie, energy, chemical, nutrient, etc., pathways are not functioning correctly. The tools to repair these things are lifestyle changes, meditation and other stress reduction techniques, diet management, etc.
But then, I may be way off base and missing the intention of their disregard and/or their point. :eek:
------------------
Copper
Let Miracles Replace all Grievances
Dale
02-21-2001, 09:13 AM
Well I am a lay person as most of us are. Not a nurse nor doctor as I wish we had one on the board to ask. I also agree with Cico. That I to take what is said with a grain of salt. I want to say Calm down please. You have your beliefs and I mine. Some look like a fool when you rant and rave, but so what I have fms and I want to be mean. Some feel that way others, get kinder and others stay the same. I know how hard it is when you are dx. but it is interesting to watch some newly dx to go from I know nothing, to I know all in just under a year. Then there are those who want to be the center of attention. They want everyone to focus on just them; listen to me I know it all and my way is the only way or I'll attack you. Some oldies have had it so long that they find it almost funny but really pityful. I personaly find it sad. It is hard for the first couple years. You switch your thoughts so often and are going throught so much you need compassion. Remember they have coping troubles and need to be given some room like a child having a temper tantrum. Cico I also don't get it when people start acting as if they know it all too. No matter who they are. When fms people are at the begining and haven't gone throught years of this and have to still go through the reality check. How to learn to control themselves. It is hard. I also must not have read the article as well as I thought. As I said, the article was one out of many I was reading and the last one. I had the site information in front of me and entered. As I said it was one article. Web med has many. We are here to help and give all information that is fms and cfs related. Val and Cooper thanks for your replys to; good ones and all else who replied sorry i forgot your names. Let's have fun while we research this fms and cfs thing. Remember if your at the stage where you are haveing trouble remembering, just print it.
------------------
Dale
[This message has been edited by Dale (edited 02-21-2001).]
------------------
Dale
[This message has been edited by Dale (edited 02-21-2001).]
Valerie
02-21-2001, 10:10 AM
Wouldn't it be nice for those of us with the brain fog if this board allowed us to see the posts at the same time we're trying to reply? I keep having to go back and forth in my browser and often end up losing my message.
*sigh*
*sigh*
Dale
02-21-2001, 11:06 AM
Yes, most definatly. Newest replys at the top would also be helpful. I am always forgetting names. I have to print it out. Let's ask the board people. :D
------------------
Dale
------------------
Dale
cioc1212
02-21-2001, 11:48 AM
Kim-The plain fact is that not everyone with FM spends their life with no relief and never getting any better. Most people are able to get some degree of help and many are able to improve their quality of life. Most often what works is anti-depressant medication,exercise and other lifestyle changes including quitting smoking and having a heathy diet (nutrition). Any doctor will tell you this and not just for FM, it works for MOST physical illnesses). Only a small percentage of FM sufferers find that NOTHING works and that they must live out their lives in misery. Those people who are long time FM suffers need to be very careful not to discourage newbies or else they are doing harm in the guise of "helping". There are ways to make suggestions without shooting people down in the process and most often, this is done by using "I" statments. "I've found" "I think" "I've read",etc. I've found it encouraging that the more recent posts included a lot of people who felt comfortable enough to post that although they weren't completely well, they had found things that helped them and they wanted to share about it. In the past, I hadn't seen much of that, it was more of a symptom list and chat forum. The thyroid people, in particular, were very leery of posting here, as they directly stated. I value their input so the repeated attacks were distasteful to me. I apologise if I misunderstood your intent in posting that particular link. Hiding your identity seems to signal a sneakiness so maybe I was reacting to that. That is what I was trying to point out in an earlier message that I aimed in your direction.
This board really seems to do well when there are a lot of people posting, all with different experiences and different ideas. It keeps the board from going "flat" and stale and from turning into a gripe session. There is certainly room for everyone from people who are in the middle of debilitating flares to people in full remission. We just need to be careful not to let our own "sour grapes" rub off if we are not feeling as well as someone else may be feeling. Who knows, some of the oldtimers may even get some new ideas!!!
This board really seems to do well when there are a lot of people posting, all with different experiences and different ideas. It keeps the board from going "flat" and stale and from turning into a gripe session. There is certainly room for everyone from people who are in the middle of debilitating flares to people in full remission. We just need to be careful not to let our own "sour grapes" rub off if we are not feeling as well as someone else may be feeling. Who knows, some of the oldtimers may even get some new ideas!!!