All I can say is that I was responding to someone seeking advice. What I wrote is my heart felt best advice. It isn't angry. It isn't crazy. It isn't any more judgemental than anyone else's advice. Of course it involves a decision on my part, based on my own negative experiences. That is how everyone else here arrived at their own decisions.
You have the experience of RLS and you decide what to do about it. If you arrive at the same decision as everyone else on this board, well then you're fine. If you arrive at a different decision, well then you must be angry and judgemental.
The person seeking advice stated that she was having a difficult time with her physician. In my experience, that is the norm and will continue. In my experience (and my experiences in the field of health care, as a nurse, a patient, a wife, and mother of 5, are quite extensive), the expectation that physicians are knowledgeable, competent, and caring, and that you must put your faith and trust in them to get well, will only lead to more suffering.
Check out the statistics on how many Americans have negative events, including death, each year due to physician errors. Check out the statistics on how many people have negative consequences, including death, from their medications. And, I'm not even talking about errors in prescribing or filling the prescriptions, I'm talking about as a consequence of taking a correctly prescribed, and correctly dosed medication.
Nothing I say on this post has any real power to harm because I have no ability to impose my will. Physicians are the ones with the real power to harm--and harm they do. If I told you the things that I have witnessed physicians and physicians in training do to trusting human beings, you would not believe me. But, suffice it to say that not only do physicians treat patients with callous indifference, often their behavior can only be described as sadistic. I only wish there were some honest statistics about how many people are ever helped by their physician and/or their medications. Let's define "helped" as a longer or better quality of life. Even if you could find a doctor who has some vague notion about not doing harm, they are all so in the thrall of the pharmaceutical companies, they are not capable of it.
I know it's comforting to believe that there is a big daddy with a lab coat who will kindly listen to all your problems and give you the magic pill that will make it all better. But, far more often you are going to find a socially retarded, profoundly maladjusted, megalomaniacal, hostiley indifferent, medically ignorant, golfer. There is no big daddy. There is no magic pill. If it comforts you to think so, then go on. But, the writer seeking advice was describing exactly what I'm talking about here with her own doctor. I'm only validating her statements and predicting that she will receive more of the same.
I stand firmly by my advice and plan on taking it myself. Stay away from doctors. Stay away from all medicine. Study up on what supposedly leads to good health and follow it. Much of this information will also be wrong, but it's the same information your doctor is going by. You care way more about you than any doctor ever will. You don't have any other agenda besides taking care of you, your doctor does. Take as good care of yourself as you can. Leave the rest to God. Pray.
Panic attacks and my psychiatris: not working! PLEASE Help!
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ViewsAskew
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Opinions are interesting things, aren't they? They are almost like our children - in a way, I guess they are part of who our mind thinks we are. So, we need to protect them. And, here we all are, being protective of our personal belief systems.
I don't think Judy went over the line in this post. She simply stated how she feels. We have never disallowed that. In my interpretation, she has had experiences that didn't work out well at all, and have possibly made things worse for her. So, for her, not seeking medical treatment is what she feels is the best option.
If we all work together and remember the respect of each others choices and opinions is tantamount to getting along, all should be OK. For me, the only circumstance that would become difficult is if we continue to take sides and snipe at each other.
Of course, as always, take what you need and leave the rest.
I don't think Judy went over the line in this post. She simply stated how she feels. We have never disallowed that. In my interpretation, she has had experiences that didn't work out well at all, and have possibly made things worse for her. So, for her, not seeking medical treatment is what she feels is the best option.
If we all work together and remember the respect of each others choices and opinions is tantamount to getting along, all should be OK. For me, the only circumstance that would become difficult is if we continue to take sides and snipe at each other.
Of course, as always, take what you need and leave the rest.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Well here's my opinion, since we're so stuck up on opinions..
I agree Anne, Judy may not necessarily be over a line here, however I have noted one thing that has been consistent about her posting methods. She is very curt, frank, and to the point about what she says. I don't think there is anything wrong with being truthful, but at the same time I think she could do with a little more pause before she responds to things sometimes.
Not because she has done anyone wrong, but simply because it is not always necessary to be so cold and subjective, I feel it is a matter of tone. Others might say she lacks a certain "empathy" in regards to how her words come across to others, and doesn't appear to take that into account.
I can say this confidently because, I am the same way; or should I say I used to be. I still can be, but I make an active effort to be more diplomatic, for lack of a better term. I think Judy would find her opinions much more easily accepted if she simply tried to come off as less abrasive.
Judy: Go to your user profile and scroll down to the bottom of the options. There will be a setting for you to adjust your timezone. I live on Central Daylight Time, so my options are set at GMT -6 hours. My times show up properly for me. This should help you with your time problems if it bothers you that much. Set your profile to GMT -5
I agree Anne, Judy may not necessarily be over a line here, however I have noted one thing that has been consistent about her posting methods. She is very curt, frank, and to the point about what she says. I don't think there is anything wrong with being truthful, but at the same time I think she could do with a little more pause before she responds to things sometimes.
Not because she has done anyone wrong, but simply because it is not always necessary to be so cold and subjective, I feel it is a matter of tone. Others might say she lacks a certain "empathy" in regards to how her words come across to others, and doesn't appear to take that into account.
I can say this confidently because, I am the same way; or should I say I used to be. I still can be, but I make an active effort to be more diplomatic, for lack of a better term. I think Judy would find her opinions much more easily accepted if she simply tried to come off as less abrasive.
Judy: Go to your user profile and scroll down to the bottom of the options. There will be a setting for you to adjust your timezone. I live on Central Daylight Time, so my options are set at GMT -6 hours. My times show up properly for me. This should help you with your time problems if it bothers you that much. Set your profile to GMT -5
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ViewsAskew
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Oh, Zach, thanks for telling Judy about the time zone - I got sidetracked and forgot to do it. For anyone with problems with the time, do what Zach said. You need to know your time zone in order to do this, but it gives you hints 
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
You know what Judy, I too am a very frank and blunt person. I have to stop and think about what I say sometimes before I let it pass my lips, but I have to say to you, stick by what you believe in and I'll stick by what I believe in, the difference between you and me, I don't try to cram my beliefs down everyone elses throat by using Scripts Spelling Bee type words to describe how crappy I think a lot of doctors are.
We all know how hard it is to get a doctor to listen to us, you don't think we haven't all been there? That is what this board is about, a place to vent your frustrations, but honey you are going about it the wrong way. As Zach said you need to come across just a tad less "abrasive".
I am sorry that some doctor/doctors has put a bee in your bonnet, but if you are truly a nurse, you know what you said was wrong! I know in my case, my Quality of Life is more important to me than your thoughts on taking medicine, doctors and pharmaceutical companies. I don't need or want your "advice" on not taking medicine.
If God didn't want me to have RLS he wouldn't have given it to me, but then again, God gave me the good sense to find a way to ease my pain, and yes I said pain. You clearly have no clue that some of us have excrutiating pain that we are told has no cure.
Physically, true, i'ts not going to kill us, but psychologically and physically it is exhausting and it drives some people to end their pain. So like you said, I stand firmly on my opinion (not advice) and will be sticking to it. Have a nice day!
dee
We all know how hard it is to get a doctor to listen to us, you don't think we haven't all been there? That is what this board is about, a place to vent your frustrations, but honey you are going about it the wrong way. As Zach said you need to come across just a tad less "abrasive".
I am sorry that some doctor/doctors has put a bee in your bonnet, but if you are truly a nurse, you know what you said was wrong! I know in my case, my Quality of Life is more important to me than your thoughts on taking medicine, doctors and pharmaceutical companies. I don't need or want your "advice" on not taking medicine.
If God didn't want me to have RLS he wouldn't have given it to me, but then again, God gave me the good sense to find a way to ease my pain, and yes I said pain. You clearly have no clue that some of us have excrutiating pain that we are told has no cure.
Physically, true, i'ts not going to kill us, but psychologically and physically it is exhausting and it drives some people to end their pain. So like you said, I stand firmly on my opinion (not advice) and will be sticking to it. Have a nice day!
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
And I just want to say.. Although I don't feel pain as part of my RLS, and hope to god I never do.. I can still identify with those of you who do. I have IBS (irritable bowel syndrome) and let me just say what a mess it has been (no pun intended) trying to learn to live with and control it.
I was so desperate at first, because everything I was eating was messing me up, and over the past few years I have finally learned how to identify and avoid a lot of m IBS triggers.. I still have many "debates" with "god" involving many swear words from time to time, when I'm doubled over in pain from the cramps, to the point where it's like you can't breathe.. Or having such a severe attack it's like passing water and you are completely debilitated, emotionally and physically drained - and just want to die.
Everyone has pain in their lives.. Whether it's IBS, or RLS, or cancer, or a bump on the head. Or traumatic emotional pain and physical side effects from plain old fashioned BAD MEDICINE. We all should be coming together to celebrate our knowledge and ability to help one another out. Not fighting over whose ideas about doctors or diseases is better
I was so desperate at first, because everything I was eating was messing me up, and over the past few years I have finally learned how to identify and avoid a lot of m IBS triggers.. I still have many "debates" with "god" involving many swear words from time to time, when I'm doubled over in pain from the cramps, to the point where it's like you can't breathe.. Or having such a severe attack it's like passing water and you are completely debilitated, emotionally and physically drained - and just want to die.
Everyone has pain in their lives.. Whether it's IBS, or RLS, or cancer, or a bump on the head. Or traumatic emotional pain and physical side effects from plain old fashioned BAD MEDICINE. We all should be coming together to celebrate our knowledge and ability to help one another out. Not fighting over whose ideas about doctors or diseases is better
My original post was in response to someone who was seeking advice.
Since the person was seeking advice, I responded with advice.
No one is compelled to follow my advice. No one is compelled to follow anyone's advice. If there is coercion involved, it would not be called advice, it would be called an order.
If you read the literature on restless leg syndrome, "excrutiating pain" is a symptom that would rule out RLS. Please be aware that I am not doubting anyone's pain. I am not dismissing, disregarding, or denying anyone's excrutiating pain in any way. I am saying that "excrutiating pain" is a symptom that would rule out a diagnosis of RLS. This is a fact and not conjecture or opinion.
Although some people feel that the urge to move their legs is uncomfortable to the point of painfulness, or they do not distinguish between discomfort and pain, "excrutiating" pain is not a symptom of RLS.
I realize that there are people whose leg movements have progressed to arm movements, and somethimes trunk movements. These people have been accurately diagnosed with RLS. Face and genital symptoms are not part of RLS. Again, this is not denying that there are people who have RLS, who also have some sort of facial or genital problems, but these problems would not be considered part of the restless leg syndrome.
One of the purposes of this board is to be informative. It is necessary and desirable to inform accurately. Certain people's reaction to the statement of accurate information is puzzling to me. But, I'm moving on.
Since the person was seeking advice, I responded with advice.
No one is compelled to follow my advice. No one is compelled to follow anyone's advice. If there is coercion involved, it would not be called advice, it would be called an order.
If you read the literature on restless leg syndrome, "excrutiating pain" is a symptom that would rule out RLS. Please be aware that I am not doubting anyone's pain. I am not dismissing, disregarding, or denying anyone's excrutiating pain in any way. I am saying that "excrutiating pain" is a symptom that would rule out a diagnosis of RLS. This is a fact and not conjecture or opinion.
Although some people feel that the urge to move their legs is uncomfortable to the point of painfulness, or they do not distinguish between discomfort and pain, "excrutiating" pain is not a symptom of RLS.
I realize that there are people whose leg movements have progressed to arm movements, and somethimes trunk movements. These people have been accurately diagnosed with RLS. Face and genital symptoms are not part of RLS. Again, this is not denying that there are people who have RLS, who also have some sort of facial or genital problems, but these problems would not be considered part of the restless leg syndrome.
One of the purposes of this board is to be informative. It is necessary and desirable to inform accurately. Certain people's reaction to the statement of accurate information is puzzling to me. But, I'm moving on.
If I wanted to, I could go take some diphenhydramine and purposefully augment my RLS to the point where I will feel it in my genital / trunk areas. It is not always about where you can and cannot feel something that defines a disorder.
Is excruciating pain necesarrily RLS? Not necesarrily, and a deeper cause should always be investigated; but to simply discount all the variables in such a description (pain tolerance being a key factor), including the variability of the adjective itself, makes no sense. The same goes for RLS is other areas. Because you cannot clasically cite a specific region as being an indicator of RLS does NOT discount the fact that it is still possible, and in some cases, very real in those areas.
Frankly, your attempt to come off as defending yourself from a general lack of knowledge is insulting. It seems like you've been looking to push buttons and force confrontational debate since you started posting here. I assure you, I am quite capable and experienced in this.
Is excruciating pain necesarrily RLS? Not necesarrily, and a deeper cause should always be investigated; but to simply discount all the variables in such a description (pain tolerance being a key factor), including the variability of the adjective itself, makes no sense. The same goes for RLS is other areas. Because you cannot clasically cite a specific region as being an indicator of RLS does NOT discount the fact that it is still possible, and in some cases, very real in those areas.
Frankly, your attempt to come off as defending yourself from a general lack of knowledge is insulting. It seems like you've been looking to push buttons and force confrontational debate since you started posting here. I assure you, I am quite capable and experienced in this.
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ViewsAskew
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I find that there are only a few people I trust when I comes to RLS. Gosh knows there is a lot of information, but rarely does any of it tell the whole story. These people are the researchers that know as much about it as anyone can know. For example, I've seen many credible sites state that RLS can only be in the calf. Yet the Mayo Clinic site, with two or three of the best RLS researchers, says straight out that it can be in other places.
Dr Buchfurer is the other expert I would bow down in deference to over just about anyone in the field. He also says it can occur virtually anywhere, right in his book. He personally diagnosed one of our members with RLS. Where is her primary symptom? Her face. Yes, she also has it in her legs. But my only point is that there are people, no matter how small the percentage that do not fit into your narrow descriptions, and these people's dianosis is validated by top-notch researchers. I would ask you to allow that this is truth and not made up by any of us. I don't have it in my face or genitals, but I sure believe those who do. I also don't believe it's common. That doesn't mean it can't be. Normal? No. Possible? Of course.
Regarding pain, I would posit there are possible other explanations here. Pain is very personal for one thing. The chronic lack of sleep is well known by all of us. It's possible that this condition of chronic sleep deprivation, in some people, creates pain in the body. They've also done recent research showing that some people seem to have a much lower threshold for pain, so what you don't think of as painful, they do. It's also possible that there is a corellary condition that occurs in some people with RLS that makes it appear painful.
I don't have a clue as to why some people have pain with their RLS. In a way, I don't really care, though. I do care that these people do have RLS and they also hurt. If their docs can't name it as something separate from RLS, it doesn't mean they don't feel it. It also doesn't mean it is RLS, as you've noted. But why not call it that? We don't have any better thing to call it!
I hope everyone will follow your suit and move on. Then again, they may all feel, sort of like I did, that one more post would be needed to make their point. I'm not being a very good role model. Who knows? We might still have this post going in 2010
Dr Buchfurer is the other expert I would bow down in deference to over just about anyone in the field. He also says it can occur virtually anywhere, right in his book. He personally diagnosed one of our members with RLS. Where is her primary symptom? Her face. Yes, she also has it in her legs. But my only point is that there are people, no matter how small the percentage that do not fit into your narrow descriptions, and these people's dianosis is validated by top-notch researchers. I would ask you to allow that this is truth and not made up by any of us. I don't have it in my face or genitals, but I sure believe those who do. I also don't believe it's common. That doesn't mean it can't be. Normal? No. Possible? Of course.
Regarding pain, I would posit there are possible other explanations here. Pain is very personal for one thing. The chronic lack of sleep is well known by all of us. It's possible that this condition of chronic sleep deprivation, in some people, creates pain in the body. They've also done recent research showing that some people seem to have a much lower threshold for pain, so what you don't think of as painful, they do. It's also possible that there is a corellary condition that occurs in some people with RLS that makes it appear painful.
I don't have a clue as to why some people have pain with their RLS. In a way, I don't really care, though. I do care that these people do have RLS and they also hurt. If their docs can't name it as something separate from RLS, it doesn't mean they don't feel it. It also doesn't mean it is RLS, as you've noted. But why not call it that? We don't have any better thing to call it!
I hope everyone will follow your suit and move on. Then again, they may all feel, sort of like I did, that one more post would be needed to make their point. I'm not being a very good role model. Who knows? We might still have this post going in 2010
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Excrutiating pain and genital and or facial symptoms are not part of the restless leg syndrome. These symptoms (excrutiating pain/facial/genital), no matter how they are induced or sustained, no matter what the person's pain tolerence, would preclude, ie. rule out, a diagnosis of RLS.
Diagnostics isn't about a certain patient's idiosyncratic use of modifiers, or their reaction to nontherapeutic, unprescribed medication.
Diagnostics is about accurrately matching a person's existing signs and symptoms to those proscribed by the disease process/syndrome being considered.
Excrutiating pain/ facial symptoms/ genital symptoms---
NOT RESTLESS LEG SYNDROME.
That's it. That's all there is to it. It ain't rocket science. It's RLS.
Diagnostics isn't about a certain patient's idiosyncratic use of modifiers, or their reaction to nontherapeutic, unprescribed medication.
Diagnostics is about accurrately matching a person's existing signs and symptoms to those proscribed by the disease process/syndrome being considered.
Excrutiating pain/ facial symptoms/ genital symptoms---
NOT RESTLESS LEG SYNDROME.
That's it. That's all there is to it. It ain't rocket science. It's RLS.
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ViewsAskew
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I highly suggest that no one else respond. Please. Let's just get back to normal, everyday sanity as fun as this might be for some of us.
Please?
Please?
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Anonymous
Hey Ann. Thanks for what you said in your post.
Dr. Buchfuhrer has submitted my case report (which includes a description of another one of his patient's facial/leg symptoms) for publication. It should hopefully help get the word out there that this condition can manifest itself in many ways.
It is, after all, a neurological condition, so it makes sense that it starts in the brain and can affect any part of the body. A doctor named the condition after the most common symptoms, that's all.
Everyone's body is different, and we all experience RLS is different ways. There seem to be common themes, but there is no "normal" in RLS. Even Dr. B. says that!
One day they'll catch up to what the rest of us already know. And, thank goodness for Dr. B. who is willing to facilitate that education and growth!
Take care, everyone. And thanks again, Ann.
Dr. Buchfuhrer has submitted my case report (which includes a description of another one of his patient's facial/leg symptoms) for publication. It should hopefully help get the word out there that this condition can manifest itself in many ways.
It is, after all, a neurological condition, so it makes sense that it starts in the brain and can affect any part of the body. A doctor named the condition after the most common symptoms, that's all.
Everyone's body is different, and we all experience RLS is different ways. There seem to be common themes, but there is no "normal" in RLS. Even Dr. B. says that!
One day they'll catch up to what the rest of us already know. And, thank goodness for Dr. B. who is willing to facilitate that education and growth!
Take care, everyone. And thanks again, Ann.