Who has read Jeff Strong why people leave and what we can learn from them?

[Calm]

9 hours ago, BlipBlap said:

Doctors aren't always to blame for the conditions of their patients.

And yet sometimes they are.  I know myself, my daughter (who cannot now hold a job or even finish high school) and likely thousands of others (was on an email list where we educated ourselves so we could educate our doctors…many who ignored us from reports and my personal experience) who now have severe RLS because doctors refused to listen and gave antidepressants, the worst possible drug, rather than dealing with the actual symptom of sleep deprivation (I found out I, my dad, and at least my grandfather had RLS by myself in 97 iirc after two decades of asking doctors what the hell was going on and getting told I was depressed, which I wasn’t) by searching on the internet even though RLS was described back in the 1600’s and officially defined and named in the 1940’s or 50’s.  One of the most common movement disorders (7-10% population of US has it)and yet ignored and virtually unknown by GPs until well into the 2000’s and likely only then because the pharmaceutical companies discovered drugs that appeared to be helpful for it.  Unfortunately they made things worse longterm for a large percentage of RLS patients….another case of doctors needing to acknowledge where they made things worse not better even though accurate info on aggravation was just an internet search away, I even printed up the medical info for doctors from the RLS Foundation for my doctor, she refused to look at it throughout the appt and handed it back to me and then dropped me as a patient first excuse she had…I asked for a second opinion.

——

Back to the Church issue…

I do think the Church erred some when correlation pretty much took a one size fits all, ‘we will do the basic stuff and leave the rest to those interested’ approach.  It could be just that my mother was so into personal study and my dad liking to know stuff (he often depended on mom to summarize her study, but I do remember him reading some stuff in my early years….may have read in bed before sleeping, but that may have disappeared when older with the family sleep disorder because he would crash at least by my teen years and anyone who dared disturb him got hellfire and damnation rained upon them, one of the very few things he would lose his temper over…I now understand thoroughly why).  My impression is there was more discussion precorrelation…hearing conversations in the hallways and maybe at the dinner table after church.  It’s vague, so I might be wrong about it being in the Church culture earlier.  After all it’s just two wards and my parents and my dad’s parents I am pulling memories from (my mom’s dad was the most into it, but he died when I was 7 and we only visited their home a few times since they lived in the East and we were West).  But the quality of the Church magazines became less educational and more devotional, that’s pretty easily demonstrated.

I agree that leaders should not be automatically blamed for people’s lack of knowledge, etc., especially now given the amount of info online. It is not the Church’s mission to educate all its members on history, even its own.  I am so grateful it is now investing on research and getting the info out there because individual members and even organizations like FARMS and FAIR can’t do it at the level the Church can with the JSPP and other projects.  But when did the Gospel Topics Essays start putting good info on the Church’s website first appear so that people could learn from the a church itself there were issues rather than getting blindsided by antis?  It was November 2013.  JSPP was online in 2011.  Before that you got to buy books, but even that started 2010 I believe.  Saints 4 volumes as a wonderful project as well.  Too many in my early marriage years assumed they were experts on church history with reading about the Storm family (I am only impressed when the author has decent footnotes and recommended reading lists included…Standing On the Promises is a thumbs up).  I am not in the least condemning the Church for making the decision to correlate…it needed to given the speculation and hobbies that was being shared along with the good stuff.  Just wish it provided a bit more varied than investigators and basic level materials.

Preinternet it was difficult and costly for most members to access accurate information on a number of topics and even if they had access like some Utah members did (one of the best things about moving to Utah was the library section on Mormonism, they also had a great selection of Terry Prachett), why would they look if they were being told they had enough info already to know the truth unless they were curious or into history.  The Sunday School manuals (and possibly others but don’t remember) were telling members, including teachers, there was no need to buy additional books to fulfill the goals of the class, the Spirit , scripture and provided materials would be enough.  Didn’t say you shouldn’t buy books, etc, just strong reassurance it was not necessary,  And in a world with school fees, mortgages or rent, necessities of life, it is nice to know one can depend on the Church to provide anything we actually need.  Only it didn’t for some.  
 

Recognizing that is not accusing the Church of lying or hiding history.  It is recognizing the Church cannot fill everyone’s needs…nor should it.  Preinternet it would have been costly to ensure everyone was provided with sufficient material and the Church didn’t have the financial resources like it did now.  I think choosing to take off the burden of needing to donate money to get a chapel built and maintained and dumping the number out fundraisers that were always happening to fund activities was a much better early investment than providing historical research for members who mostly weren’t and aren’t that interested.

There were wards with libraries of donated books, but there was little in my experience promotion of such once correlation started (I do remember because I loved the Juvenile Instructor my parents got and my Saturday chores included dusting our library so I was very familiar with what books we were adding) and DB and Bookcraft books stopped being sold as fundraisers for Priesthood and other activities (I don’t know if that was church approved, the libraries were I am relatively certain as they were in every older ward building I attended).  Plus there was no guidance on what were the useful books and what were personal speculation, etc.  People could donate any book and as far as I know they weren’t vetted originally or even when the Church required it.  Even though in the instructions for librarians in the late 90s when I was first a librarian, there was the restriction on only having Church Distribution materials plus a dictionary, globe, and stuff like papers, pens, etc, they never were vetted when I was ward librarian, but we weren’t adding books by then.  Once I became head librarian I purged most of the not supposed to be there stuff (because I do read the fine print at least once), though not too many members were interested and stuff sat on the giveaway table for weeks.

Given how booked the Church and society makes our lives, a lot of people didn’t have the time or mental energy (and still don’t even with the easy access) to find the books with the needed information.  Before the internet there was no organized list or whatever telling people where to find the info.  No recommendations from the Church on useful websites (FAIR is one of those listed on some topics, btw…have to do my occasional promo here, lol).  It would be trial and error too unless you knew someone knowledgeable…and I didn’t when young, though I knew some out there hobbyists I wouldn’t trust now and was too leery of back then.  Still too introverted to ask for help when older, though once a few got to know what I was into we started having conversations.  

City librarians might be helpful, might not (I used to work in a city library and have spent endless hours taking tons of books home with me).  One of the most useful BYU English classes I took included how to do research where I learned the sources librarians checked when you asked them questions.  That was in the late 70s and while much more useful knowing this stuff (I tracked down a favorite poem I had once read in a book in my high school library, went back to the school that summer with the book’s name and got a copy), still very limited in what one could do with it (I had to go back to my high school because BYU did not have a copy).  You would definitely have to use interlibrary loan to get the vast majority of decent material…if it was available in the system your local library was connected to.  Helpful if you lived in a university town and had hours or days to spend tracking stuff down.

The internet is a wonderful blessing even with all the dangers it has added to our lives.

Edited 15 hours ago by Calm

[Stargazer]

6 hours ago, Teancum said:

It is really quite simple when one drops the requirement to just have faith. Why would. or what kind of god like being, would ask us to "obey" morally repugnant commands in order to test us, or sift the so called "wheat/tares? Humans can asses and determine morals and ethics on their own. without the need of some imagines god being. Using critical thinking skills it is understandable to conclude that such things are, base ethically sound standards, something that should be rejected.

I do agree that we can assess and determine morals and ethics on our own, without an absolute external standard (e.g. God). But what do those assessments and determinants really mean? How valid are they, all in all? 

To one for whom there is no absolute external standard, Western Civilization is just as valid as Sharia, the former Japanese Bushido, Sparta's warrior state, and the ancient Mongol tribal society.

This means that, ultimately, where there is no absolute standard, a society which permits polygamy is just as valid as one which doesn't. Which seems to torpedo a moralistic and ethical resentment over polygamy as a standard. You can't have your cake and eat it, too, to employ a cliché. And just because you don't like it, too bad, so sad, get over yourself. It's laissez-faire all the way. Full speed ahead and damn the torpedos!

 

 

[BlipBlap]

5 hours ago, Calm said:

And yet sometimes they are.  I know myself, my daughter (who cannot now hold a job or even finish high school) and likely thousands of others (was on an email list where we educated ourselves so we could educate our doctors…many who ignored us from reports and my personal experience) who now have severe RLS because doctors refused to listen and gave antidepressants, the worst possible drug, rather than dealing with the actual symptom of sleep deprivation (I found out I, my dad, and at least my grandfather had RLS by myself in 97 iirc after two decades of asking doctors what the hell was going on and getting told I was depressed, which I wasn’t) by searching on the internet even though RLS was described back in the 1600’s and officially defined and named in the 1940’s or 50’s.  One of the most common movement disorders (7-10% population of US has it)and yet ignored and virtually unknown by GPs until well into the 2000’s and likely only then because the pharmaceutical companies discovered drugs that appeared to be helpful for it.  Unfortunately they made things worse longterm for a large percentage of RLS patients….another case of doctors needing to acknowledge where they made things worse not better even though accurate info on aggravation was just an internet search away, I even printed up the medical info for doctors from the RLS Foundation for my doctor, she refused to look at it throughout the appt and handed it back to me and then dropped me as a patient first excuse she had…I asked for a second opinion.

——

Back to the Church issue…

I do think the Church erred some when correlation pretty much took a one size fits all, ‘we will do the basic stuff and leave the rest to those interested’ approach.  It could be just that my mother was so into personal study and my dad liking to know stuff (he often depended on mom to summarize her study, but I do remember him reading some stuff in my early years….may have read in bed before sleeping, but that may have disappeared when older with the family sleep disorder because he would crash at least by my teen years and anyone who dared disturb him got hellfire and damnation rained upon them, one of the very few things he would lose his temper over…I now understand thoroughly why).  My impression is there was more discussion precorrelation…hearing conversations in the hallways and maybe at the dinner table after church.  It’s vague, so I might be wrong about it being in the Church culture earlier.  After all it’s just two wards and my parents and my dad’s parents I am pulling memories from (my mom’s dad was the most into it, but he died when I was 7 and we only visited their home a few times since they lived in the East and we were West).  But the quality of the Church magazines became less educational and more devotional, that’s pretty easily demonstrated.

I agree that leaders should not be automatically blamed for people’s lack of knowledge, etc., especially now given the amount of info online. It is not the Church’s mission to educate all its members on history, even its own.  I am so grateful it is now investing on research and getting the info out there because individual members and even organizations like FARMS and FAIR can’t do it at the level the Church can with the JSPP and other projects.  But when did the Gospel Topics Essays start putting good info on the Church’s website first appear so that people could learn from the a church itself there were issues rather than getting blindsided by antis?  It was November 2013.  JSPP was online in 2011.  Before that you got to buy books, but even that started 2010 I believe.  Saints 4 volumes as a wonderful project as well.  Too many in my early marriage years assumed they were experts on church history with reading about the Storm family (I am only impressed when the author has decent footnotes and recommended reading lists included…Standing On the Promises is a thumbs up).  I am not in the least condemning the Church for making the decision to correlate…it needed to given the speculation and hobbies that was being shared along with the good stuff.  Just wish it provided a bit more varied than investigators and basic level materials.

Preinternet it was difficult and costly for most members to access accurate information on a number of topics and even if they had access like some Utah members did (one of the best things about moving to Utah was the library section on Mormonism, they also had a great selection of Terry Prachett), why would they look if they were being told they had enough info already to know the truth unless they were curious or into history.  The Sunday School manuals (and possibly others but don’t remember) were telling members, including teachers, there was no need to buy additional books to fulfill the goals of the class, the Spirit , scripture and provided materials would be enough.  Didn’t say you shouldn’t buy books, etc, just strong reassurance it was not necessary,  And in a world with school fees, mortgages or rent, necessities of life, it is nice to know one can depend on the Church to provide anything we actually need.  Only it didn’t for some.  
 

Recognizing that is not accusing the Church of lying or hiding history.  It is recognizing the Church cannot fill everyone’s needs…nor should it.  Preinternet it would have been costly to ensure everyone was provided with sufficient material and the Church didn’t have the financial resources like it did now.  I think choosing to take off the burden of needing to donate money to get a chapel built and maintained and dumping the number out fundraisers that were always happening to fund activities was a much better early investment than providing historical research for members who mostly weren’t and aren’t that interested.

There were wards with libraries of donated books, but there was little in my experience promotion of such once correlation started (I do remember because I loved the Juvenile Instructor my parents got and my Saturday chores included dusting our library so I was very familiar with what books we were adding) and DB and Bookcraft books stopped being sold as fundraisers for Priesthood and other activities (I don’t know if that was church approved, the libraries were I am relatively certain as they were in every older ward building I attended).  Plus there was no guidance on what were the useful books and what were personal speculation, etc.  People could donate any book and as far as I know they weren’t vetted originally or even when the Church required it.  Even though in the instructions for librarians in the late 90s when I was first a librarian, there was the restriction on only having Church Distribution materials plus a dictionary, globe, and stuff like papers, pens, etc, they never were vetted when I was ward librarian, but we weren’t adding books by then.  Once I became head librarian I purged most of the not supposed to be there stuff (because I do read the fine print at least once), though not too many members were interested and stuff sat on the giveaway table for weeks.

Given how booked the Church and society makes our lives, a lot of people didn’t have the time or mental energy (and still don’t even with the easy access) to find the books with the needed information.  Before the internet there was no organized list or whatever telling people where to find the info.  No recommendations from the Church on useful websites (FAIR is one of those listed on some topics, btw…have to do my occasional promo here, lol).  It would be trial and error too unless you knew someone knowledgeable…and I didn’t when young, though I knew some out there hobbyists I wouldn’t trust now and was too leery of back then.  Still too introverted to ask for help when older, though once a few got to know what I was into we started having conversations.  

City librarians might be helpful, might not (I used to work in a city library and have spent endless hours taking tons of books home with me).  One of the most useful BYU English classes I took included how to do research where I learned the sources librarians checked when you asked them questions.  That was in the late 70s and while much more useful knowing this stuff (I tracked down a favorite poem I had once read in a book in my high school library, went back to the school that summer with the book’s name and got a copy), still very limited in what one could do with it (I had to go back to my high school because BYU did not have a copy).  You would definitely have to use interlibrary loan to get the vast majority of decent material…if it was available in the system your local library was connected to.  Helpful if you lived in a university town and had hours or days to spend tracking stuff down.

The internet is a wonderful blessing even with all the dangers it has added to our lives.

Of course sometimes doctors are to blame, but how often are institutions blamed for the failings of those that make them up versus the individuals themselves in popular discourse?  It's almost always "the system", "the man", "the establishment", etc.  Self-criticism and accountability are anathema to the modern human ego.

Strictly speaking, restless leg syndrome wasn't "ignored", it was just very difficult to diagnose properly as it relied entirely on subjective information.  It was only described in a most basic sense in 1672, and based on the description, there's no way to differentiate it from a host of other conditions that present similarly.  Even now the cause is unknown, and part of that is due to the difficulty of doing any kind of human testing.  Much of the same crowd who will complain about doctors ignoring them on one hand will make it more difficult for doctors to conduct rigorous study on humans with the other.

There doesn't need to be active promotion or a list of recommendations.  Sure, they're helpful, but you can still go out and assess material on your own.  No one worth listening to is going to rag on you for not having time, but you should take that lack of time into account when developing your feelings about something.  I do not have much experience with car engines and I don't feel like I have the time to devote to studying them.  Therefore, I do not try to work out an opinion on the quality of any particular engine.  Futhermore, as no mechanic is infallible, I'm not going to take the word of any single one at face value.

This goes beyond the "leading a horse to water".  At some point, the horse is going to have to walk itself to the water.

[Calm]

1 hour ago, BlipBlap said:

  Self-criticism and accountability are anathema to the modern human ego

You don’t hang around women much, I guess. 

[Calm]

2 hours ago, BlipBlap said:

Strictly speaking, restless leg syndrome wasn't "ignored", it was just very difficult to diagnose properly as it relied entirely on subjective information.  It was only described in a most basic sense in 1672, and based on the description, there's no way to differentiate it from a host of other conditions that present similarly.  Even now the cause is unknown, and part of that is due to the difficulty of doing any kind of human testing.  Much of the same crowd who will complain about doctors ignoring them on one hand will make it more difficult for doctors to conduct rigorous study on humans with the other.

Is this something you just looked up?  If you haven’t experienced significant rls and attempted to go through diagnosis time and time again, you don’t know what you are talking about.  While it is a syndrome that gets diagnosed by elimination, the only difficulty is getting insurance and/or doctors to be willing to give one the tests to eliminate the other possibilities.  If you have it, it’s damn easy to identify, especially by the time you are throwing yourself out of bed in despair.

I told doctors I was sleeping 16 hours a day, no sleep test offered.  I told them 20 years later I was sleeping 30 minutes at a time a couple of times a day.  Again, not one offered a sleep test.  Nope, I was depressed, here’s more drugs.  That last time, all I needed to do was type in ‘sensations in legs prevent sleep’ or something similar and RLS popped up.  Less then 5 minutes after realizing I was going to have to solve it myself, I found all the info needed to get it diagnosed and on the right drugs.  Unfortunately because the doctors didn’t bother to read the same professional medical info, took another 5 years and cranking my disorder up to unbearable 24/7 to get those recommended by the actual experts to pay attention…even after doctors told me I knew much more about it than they did.

We are begging to be taken seriously and have rigorous studies done. Lots of us have donated our brains and bodies to the cause (after we no longer need them).

Then there are all the women who have died over the years because of heart attacks being missed and other stuff.  No one forced the researchers to only use men or to define diseases by how they were experienced by men.

Then there’s stem cells in menstrual blood.  We probably could have skipped the whole debacle over embryonic stem cells if someone had just bothered to treat menstrual blood as something besides icky waste.  No one studied it until 2010’s because people just assumed the wisdom of ages on the subject was enough.

https://www.theguardian.com/society/ng-interactive/2025/oct/27/menstrual-period-blood-testing-womens-health

https://www.cellmedicine.com/endometrial-stromal-cells/

Recognizing institutions tend to get stagnant and rely on authority and go down familiar, safer paths is not saying institutions don’t have value.  

Doctors saved my daughter’s life multiple times, I survived birth due to a doctor’s intervention.  I love doctors, vaccines, tests (if I had the money I would have been in there demanding everything possible just out of curiosity) and anything I can do for medical research (within reason of course) I would love to do.  Unfortunately there is rarely something that needs me and works with my dependency on drugs to survive and inability to travel.

But man, doctors are also the reason I also live a very limited life, never got to get my doctorate or have a career and even if they had just said “I don’t know, I can’t help you right now” instead of handing out antidepressants and guilting me into taking them and only then giving up, my life would much better.  And look at women’s stories in general and those with chronic disorders online.   I am not that unusual.   Insurance companies making actually listening to patients not that profitable has really messed up the medical profession.  Social medicine has the same issue.  Burnout for doctors is ridiculous in some places. There was a pediatric surgical neurologist in our Canadian ward who couldn’t afford to send his kids to both missions and college because he had a cap on his salary.  The house they lived in was tiny and old (he had a large family, 6 or 7 kids).  He basically worked for free for the last three months of the year rather than let kids die.  He ended up moving to the States even though he loved Canada.  I really wish I could pick and choose the best of both systems as there is good and stupid in both (I would definitely put a major cap on malpractice).

Edited 8 hours ago by Calm

[Rain]

17 minutes ago, Calm said:

You don’t hang around women much, I guess. 

Especially women who are or have been members of the church.

But really, a lot of people, including men, have spent a long time wondering what was wrong with themselves when they started to have faith stuggles.

[Calm]

1 hour ago, Rain said:

Especially women who are or have been members of the church.

But really, a lot of people, including men, have spent a long time wondering what was wrong with themselves when they started to have faith stuggles.

I don’t have as much experience talking to men about these kinds of things so I didn’t feel comfortable in speaking for them in this way, but I have only met a handful of women who didn’t self blame at least at the start of realizing they had some issues…not in everything, but to act like everyone shifts blame these days, refusing to be accountable for oneself is ignoring why a good portion of people need to get to therapy.  

If people’s behaviour was as similar as some of these global descriptions suggest, there would be a lot less miscommunications and false expectations in the world because people would be a lot more predictable than they actually are. 

I do believe if someone gets connected to a group that sets up the dialogue into blaming others as I have seen with some former member groups, people start picking up the language and focus of that group***.  And that can lead to some unhealthy habits.  Always a good reason to stop and look at what kind of group one is joining, how they talk about themselves and others before the connections are too solid.

Also there should a a distinction between behaviour in a group and behaviour on one’s own.  Adopting a group’s language while interacting with them does not always mean you define life in the same way as others in that group or would describe things that way if outside the group.  

***this can happen with members too.  Preaching that exmembers who point to the Church as the reason they left are habituallly shifting the responsibility to others rather than accepting responsibility for oneself…how is that not doing the same thing, dumping all the responsibility on the individuals leaving rather then recognizing weaknesses and trying to improve the institution one belongs too?  

Edited 8 hours ago by Calm

[BlipBlap]

1 hour ago, Calm said:

Is this something you just looked up?  If you haven’t experienced significant rls and attempted to go through diagnosis time and time again, you don’t know what you are talking about.  While it is a syndrome that gets diagnosed by elimination, the only difficulty is getting insurance and/or doctors to be willing to give one the tests to eliminate the other possibilities.  If you have it, it’s damn easy to identify, especially by the time you are throwing yourself out of bed in despair.

I told doctors I was sleeping 16 hours a day, no sleep test offered.  I told them 20 years later I was sleeping 30 minutes at a time a couple of times a day.  Again, not one offered a sleep test.  Nope, I was depressed, here’s more drugs.  That last time, all I needed to do was type in ‘sensations in legs prevent sleep’ or something similar and RLS popped up.  Less then 5 minutes after realizing I was going to have to solve it myself, I found all the info needed to get it diagnosed and on the right drugs.  Unfortunately because the doctors didn’t bother to read the same professional medical info, took another 5 years and cranking my disorder up to unbearable 24/7 to get those recommended by the actual experts to pay attention…even after doctors told me I knew much more about it than they did.

We are begging to be taken seriously and have rigorous studies done. Lots of us have donated our brains and bodies to the cause (after we no longer need them).

Then there are all the women who have died over the years because of heart attacks being missed and other stuff.  No one forced the researchers to only use men or to define diseases by how they were experienced by men.

Then there’s stem cells in menstrual blood.  We probably could have skipped the whole debacle over embryonic stem cells if someone had just bothered to treat menstrual blood as something besides icky waste.  No one studied it until 2010’s because people just assumed the wisdom of ages on the subject was enough.

https://www.theguardian.com/society/ng-interactive/2025/oct/27/menstrual-period-blood-testing-womens-health

https://www.cellmedicine.com/endometrial-stromal-cells/

Recognizing institutions tend to get stagnant and rely on authority and go down familiar, safer paths is not saying institutions don’t have value.  

Doctors saved my daughter’s life multiple times, I survived birth due to a doctor’s intervention.  I love doctors, vaccines, tests (if I had the money I would have been in there demanding everything possible just out of curiosity) and anything I can do for medical research (within reason of course) I would love to do.  Unfortunately there is rarely something that needs me and works with my dependency on drugs to survive and inability to travel.

But man, doctors are also the reason I also live a very limited life, never got to get my doctorate or have a career and even if they had just said “I don’t know, I can’t help you right now” instead of handing out antidepressants and guilting me into taking them and only then giving up, my life would much better.  And look at women’s stories in general and those with chronic disorders online.   I am not that unusual.   Insurance companies making actually listening to patients not that profitable has really messed up the medical profession.  Social medicine has the same issue.  Burnout for doctors is ridiculous in some places. There was a pediatric surgical neurologist in our Canadian ward who couldn’t afford to send his kids to both missions and college because he had a cap on his salary.  The house they lived in was tiny and old (he had a large family, 6 or 7 kids).  He basically worked for free for the last three months of the year rather than let kids die.  He ended up moving to the States even though he loved Canada.  I really wish I could pick and choose the best of both systems as there is good and stupid in both (I would definitely put a major cap on malpractice).

Of course I looked it up, why wouldn't I have?  You certainly didn't know that it had been described as early as the 1600s without looking it up yourself.  The issue is that you're missing the point.  While it may have been described that long ago, the description provided can be applied to several other conditions as well, which makes bringing it up a pointless argument.

A doctor likely didn't recommend a sleep study because a sleep study generally isn't used to diagnose restless leg syndrome at all.  It CAN be used, but it usually isn't because it isn't all that useful.  He likely thought you were depressed because you were describing symptoms that go right along with it.  Even then, the current prevailing hypothesis for RLS is similar to depression

No one here's arguing that pointing out stagnation is equivalent to saying there's no value.  The point is that everything is a two-way street, and the popular opinion is that institutions are always held to a higher standard while those that inhabit them who aren't in leadership/provider roles aren't.  Again, see RLS.  You complain that a sleep study wasn't done, but you lack sufficient knowledge about the usefulness of a sleep study in diagnosing RLS to justify your criticism.  Hint:  A sleep study won't help work out a dopamine deficiency, which is the current prevailing hypothesis for the cause of RLS.  It would've been a pointless study and therefore a pointless expense.  It isn't really a sleep disorder at all (especially since it can occur while awake but still), but something more akin to Parkinson's.

Insurance companies haven't made listening to patients unprofitable.  If anything, the opposite is the more likely case.  If doctors don't listen to their patients, they wouldn't make any money at all as people would stop going.

[BlipBlap]

1 hour ago, Calm said:

You don’t hang around women much, I guess. 

It isn't unique to them, but this is certainly a case where the Skinner meme applies.  "Am I the problem?  No, it's the bigger group that is the problem".  Look at all of the excuses made for it.

Racism

Sexism

-phobia

Affluenza

Poverty

The first three are especially popular, and when it's pointed out that the labels are illogical or that past realities are no longer reality, other concepts have to be introduced.  See the concept of "microaggression".  See "equality" being replaced with "equity" with nary a word said about when those things will be satisfied, almost like the advocates of such don't want it to be satisfied.  They just want an excuse to do as they please based on past problems they never faced and current "problems" they have to either exaggerate or manufacture whole cloth without any regard for the damage it will cause.

While I think their politics are atrocious, Key and Peele did a skit about 12 years ago called "Office Homophobe".  The last 20 seconds or so is something that never seems to be considered by the population at large.

[Calm]

1 hour ago, BlipBlap said:

You certainly didn't know that it had been described as early as the 1600s without looking it up yourself. 

Nah, I didn’t look that one up.    It was handed to me when I found my haven.  There were doctors and nurses and researchers in the email group I belonged to that, everyone contributed what expertise they had, even if it was only what they found helpful or not in their own experience.

Quote

doctor likely didn't recommend a sleep study because a sleep study generally isn't used to diagnose restless leg syndrome at all. 

And this shows you don’t know much of what you are talking about.  Which is fine.  It’s great you didn’t have to spend decades researching and experimenting yourself, thank goodness you didn’t, I wish no one had to experience this at severe or even just moderate level given sleep problems tend to expand into other areas of one’s life, but you need to recognize there are gaps in a brief summary that AI or a website might give you after ten minutes effort.

I prefer doctors who have the same issue as what I or my family member is seeing them for.  Makes such a massive difference in communication and detailed treatment.  My daughter’s second diabetes doctor had juvenile diabetes.  She has had 5 so far and he was the best.  Our current pain management doctor has migraines himself and his wife has fibro and rls and he shares info on what has worked for him and family and does research on questions we come up with in part because it could help him and his family to expand his knowledge…plus he is just a really great guy.  Most of my doctors couldn’t be bothered to look up what was beyond standard protocol.  

In the email RLS group, the people who came up with the best info were the sufferers; caregivers may have motivation, but they don’t usually have the intense focus and ability to pick up on small details in my experience.  That group was years ahead of the usual online stuff in finding info.

As part of the elimination of other possibilities as well as to see what other issues might be along side RLS (Periodic Limb Movement Disorder is often connected with RLS), a thorough work up for the diagnosis of RLS should include a sleep study even if a sleep study can’t demonstrate one has RLS.

https://www.rls.org/diagnosis-treatment

Quote

Your physician should:

• Listen to a description of your symptoms and complete a diagnostic interview checking for symptoms listed under the essential criteria.
• Review your medical history.
• Rule out conditions that are often confused with RLS.

Your physician might:

• Check your iron (ferritin) levels.
• Ask you to stay overnight in a sleep study lab to determine other causes of your sleep disruption.

It’s not required for an official diagnosis, but given the likelihood of additional issues, it’s wise to get it done and if insurance covers it, the good doctors I know and have heard of will do them.  One way to help rls is to remove as much stress as possible and especially to improve sleep.  Finding out other issues through a sleep study helps that big time.  Over 80% of those with rls also have PLMD, up to 30% may have sleep apea (I do, but not enough to require a cpap).  Dismissing a sleep study as not that useful is viewing rls in isolation, which is rarely the reality   

Same with ferritin levels.  If insurance covers it, it’s foolish not to do the test.  My ferritin was just on the wrong side of ‘too low, pump it in’ to get insurance to pay for an iron infusion.  Daughter got one off her ferritin test this last November, very helpful for several months, cut her meds in half. If I hadn’t insisted my doctors test me for that based on the experts’ advice at that time, I wouldn’t have a clue why contrary to expectations, my rls has improved in the last 6 years and I would likely be wasting money and causing other issues due to a couple of supplements I thought were helping as the only visible change in my routine, but weren’t and instead did cause issues for my tinnitus and could have potentially liver (ferritin levels have shot up recently).

Edited 5 hours ago by Calm

[Calm]

1 hour ago, BlipBlap said:

He likely thought you were depressed because you were describing symptoms that go right along with it. 

No, I wasn’t depressed and specifically told different doctors I wasn’t depressed and why they should not assume that (I have a psych degree, I know the signs of depression and let them know they were missing except for sleep disturbances).  The only sleep symptoms they asked about and responded to for more details was how long I slept, when I fell asleep and woke up and if I fell asleep unexpectedly (it took hours to get to sleep).  And once the first doctor wrote depression, no one questioned it until I insisted it was flat out wrong (with expert medical documentation describing protocol for diagnosis and treatment and presented it very diplomatically as I used to hate disagreeing with people) …and got ignored (I watched her eyes during the appointment expecting her to turn to the document to at least read what it was and where I got ot from.  She never even looked at the file, but looked at my face the full appointment, leaning forward conveying attentiveness,  speaking in her reassuring tone as if she was actuakiy listening to me instead of running through her routine…which was probably very useful much of the time as it was my first and only complaint I had of her…and then dropped by my doctor.

Edited 6 hours ago by Calm

[Calm]

2 hours ago, BlipBlap said:

It CAN be used, but it usually isn't because it isn't all that useful.  

Or because it’s expensive and time consuming to do it right (you have get wired up in a lab, head and legs…or at least they used to, haven’t had one for 15 years) and with a chance of it failing due to…lack of sleep.  My daughter had a traumatic experience because the nurses would come in and scold her for not falling asleep…like that’s helpful telling a kid they will cause trouble if the can’t fall asleep in a strange room and bed all tangled up with wires?  I finally went out and got her melatonin which she never used as too sedating and therefore that test provided very limited info, but they got to check the check boxes and not have to have the expense of booking her for another night.  If she hadn’t slept, insurance wouldn’t have paid for it and the clinic would have had to swallow the loss.  If we tried it again and it again didn’t work, we would have had to pay for it, so no more lab studies for her. 

Edited 5 hours ago by Calm

[Calm]

Quote

you lack sufficient knowledge about the usefulness of a sleep study in diagnosing RLS to justify your criticism.

This is still making me laugh.

How often do you do this kind of thing?

Back between 97-05 when I was getting shuffled between doctors because they finally knew it wasn’t hypochondria after all, but weren’t comfortable drawing outside the very limited lines that were available to GPs and sleep specialists on it at that time, at least in Canada (at least the Canadians never treated it as depression, by then I had got the Chronic Fatigue label which was a step in the right direction).

I would last 2 or 3 appointments and then get pointed in the direction of the next specialist.  At that time a couple of these doctors assumed I was a medical professional (I used the correct terms in the correct way, was able to anticipate protocol suggestions and discuss with them why and why not for certain treatments, etc).  Two said I was much better informed than they were and I know they weren’t just being nice because they were asking my advice of where they should go find the info.  And one discussed with me in detail what his then experimental treatment he was thinking might be useful for rls and why and if he could use me to test it.  I let him know it probably wouldn’t be that effective (more hinted as I didn’t want to discourage him from trying to find something that worked), but fun to try.  That lasted a few times until he went to a conference and heard from the experts that I was right about the likely effectiveness.  He then passed me on to a neurologist and that sleep study had that doctor telling me I ran a marathon every night….on the drug, which was validating, but disappointing because I wasn’t given any other option with his apology even though he knew there was one that worked for me (all the doctors knew, but Canada apparently said no…and I understand why).

Still no questioning on the doctor’s part that maybe their preferred drug was actually making it worse like I said it was likely going to based on the experts and my experience with the first two versions.

I am grateful that the US was much more careless (seems like another all or nothing case, selfishly yay! for stupidity working in my favor for once, tragic that many others have died because they shouldn’t have gotten the drug at least in the manner they did.  I don’t think I could have lasted without the change to the med that doesn’t make things bearable at the cost of long term making it worst as too many things were breaking down due to the nightly trauma.

Been going to the same doc for sleep for 20+ years now.  We talk about the conferences he attends and research we both do, shares insights from other patients, and I used to let him experiment me with the latest thing.  Nothing else has worked though and now with my fibro, experimenting is too costly.  
 

But please, tell me what I don’t know about RLS and the half dozen or more  sleep studies I have been involved with over the years from various doctors once rls became known.  😛 

[Calm]

2 hours ago, BlipBlap said:

Even then, the current prevailing hypothesis for RLS is similar to depression

Sorry to observers, please ignore…

Who told you this?  Please explain in detail your reasoning for this conclusion.  

[BlipBlap]

10 minutes ago, Calm said:

Sorry to observers, please ignore…

Who told you this?  Please explain in detail your reasoning for this conclusion.  

Monoamine problem.  In the case of RLS, a deficiency of the neurotransmitter dopamine.

[BlipBlap]

14 minutes ago, Calm said:

This is still making me laugh.

How often do you do this kind of thing?

Back between 97-05 when I was getting shuffled between doctors because they finally knew it wasn’t hypochondria after all, but weren’t comfortable drawing outside the very limited lines that were available to GPs and sleep specialists on it at that time, at least in Canada (at least the Canadians never treated it as depression, by then I had got the Chronic Fatigue label which was a step in the right direction).

I would last 2 or 3 appointments and then get pointed in the direction of the next specialist.  At that time a couple of these doctors assumed I was a medical professional (I used the correct terms in the correct way, was able to anticipate protocol suggestions and discuss with them why and why not for certain treatments, etc).  Two said I was much better informed than they were and I know they weren’t just being nice because they were asking my advice of where they should go find the info.  And one discussed with me in detail what his then experimental treatment he was thinking might be useful for rls and why and if he could use me to test it.  I let him know it probably wouldn’t be that effective (more hinted as I didn’t want to discourage him from trying to find something that worked), but fun to try.  That lasted a few times until he went to a conference and heard from the experts that I was right about the likely effectiveness.  He then passed me on to a neurologist and that sleep study had that doctor telling me I ran a marathon every night….on the drug, which was validating, but disappointing because I wasn’t given any other option with his apology even though he knew there was one that worked for me (all the doctors knew, but Canada apparently said no…and I understand why).

Still no questioning on the doctor’s part that maybe their preferred drug was actually making it worse like I said it was likely going to based on the experts and my experience with the first two versions.

I am grateful that the US was much more careless (seems like another all or nothing case, selfishly yay! for stupidity working in my favor for once, tragic that many others have died because they shouldn’t have gotten the drug at least in the manner they did.  I don’t think I could have lasted without the change to the med that doesn’t make things bearable at the cost of long term making it worst as too many things were breaking down due to the nightly trauma.

Been going to the same doc for sleep for 20+ years now.  We talk about the conferences he attends and research we both do, shares insights from other patients, and I used to let him experiment me with the latest thing.  Nothing else has worked though and now with my fibro, experimenting is too costly.  
 

But please, tell me what I don’t know about RLS and the half dozen or more  sleep studies I have been involved with over the years from various doctors once rls became known.  😛 

Again, why would a sleep study be particularly relevant to RLS when it isn't a sleep disorder and can often occur when awake?  It's a movement disorder like Parkinson's.

[BlipBlap]

2 hours ago, Calm said:

Nah, I didn’t look that one up.    It was handed to me when I found my haven.  There were doctors and nurses and researchers in the email group I belonged to that, everyone contributed what expertise they had, even if it was only what they found helpful or not in their own experience.

And this shows you don’t know much of what you are talking about.  Which is fine.  It’s great you didn’t have to spend decades researching and experimenting yourself, thank goodness you didn’t, I wish no one had to experience this at severe or even just moderate level given sleep problems tend to expand into other areas of one’s life, but you need to recognize there are gaps in a brief summary that AI or a website might give you after ten minutes effort.

I prefer doctors who have the same issue as what I or my family member is seeing them for.  Makes such a massive difference in communication and detailed treatment.  My daughter’s second diabetes doctor had juvenile diabetes.  She has had 5 so far and he was the best.  Our current pain management doctor has migraines himself and his wife has fibro and rls and he shares info on what has worked for him and family and does research on questions we come up with in part because it could help him and his family to expand his knowledge…plus he is just a really great guy.  Most of my doctors couldn’t be bothered to look up what was beyond standard protocol.  

In the email RLS group, the people who came up with the best info were the sufferers; caregivers may have motivation, but they don’t usually have the intense focus and ability to pick up on small details in my experience.  That group was years ahead of the usual online stuff in finding info.

As part of the elimination of other possibilities as well as to see what other issues might be along side RLS (Periodic Limb Movement Disorder is often connected with RLS), a thorough work up for the diagnosis of RLS should include a sleep study even if a sleep study can’t demonstrate one has RLS.

https://www.rls.org/diagnosis-treatment

It’s not required for an official diagnosis, but given the likelihood of additional issues, it’s wise to get it done and if insurance covers it, the good doctors I know and have heard of will do them.  One way to help rls is to remove as much stress as possible and especially to improve sleep.  Finding out other issues through a sleep study helps that big time.  Over 80% of those with rls also have PLMD, up to 30% may have sleep apea (I do, but not enough to require a cpap).  Dismissing a sleep study as not that useful is viewing rls in isolation, which is rarely the reality   

Same with ferritin levels.  If insurance covers it, it’s foolish not to do the test.  My ferritin was just on the wrong side of ‘too low, pump it in’ to get insurance to pay for an iron infusion.  Daughter got one off her ferritin test this last November, very helpful for several months, cut her meds in half. If I hadn’t insisted my doctors test me for that based on the experts’ advice at that time, I wouldn’t have a clue why contrary to expectations, my rls has improved in the last 6 years and I would likely be wasting money and causing other issues due to a couple of supplements I thought were helping as the only visible change in my routine, but weren’t and instead did cause issues for my tinnitus and could have potentially liver (ferritin levels have shot up recently).

Distinction without a difference.  The point is that you didn't natively know it and had to consult material outside yourself, hence the term "looking it up".  You had to look up the doctor who eventually gave it to you, yes?

Note that I didn't say that that sleep study was entirely useless, just pointless.  As I asked before, why would I bother ordering a sleep study on something that isn't a sleep disorder?

If insurance companies are supposedly making it unprofitable to listen to your patients, why are you acting like ordering superfluous tests that will cost you more as a patient is somehow a good thing?  If you come to me with RLS, I'm not going to order all that.  I'd just give you a low-dose dopamine agonist and reevaluate in 6-ish weeks.

[BlipBlap]

1 hour ago, Calm said:

No, I wasn’t depressed and specifically told different doctors I wasn’t depressed and why they should not assume that (I have a psych degree, I know the signs of depression and let them know they were missing except for sleep disturbances).  The only sleep symptoms they asked about and responded to for more details was how long I slept, when I fell asleep and woke up and if I fell asleep unexpectedly (it took hours to get to sleep).  And once the first doctor wrote depression, no one questioned it until I insisted it was flat out wrong (with expert medical documentation describing protocol for diagnosis and treatment and presented it very diplomatically as I used to hate disagreeing with people) …and got ignored (I watched her eyes during the appointment expecting her to turn to the document to at least read what it was and where I got ot from.  She never even looked at the file, but looked at my face the full appointment, leaning forward conveying attentiveness,  speaking in her reassuring tone as if she was actuakiy listening to me instead of running through her routine…which was probably very useful much of the time as it was my first and only complaint I had of her…and then dropped by my doctor.

Right, so if you have a psych degree, you should be familiar with the monoamine hypothesis for depression.  Since you didn't make the connection between my initial comment regarding the similarity RLS has to depression, I'm going to go out on a limb and say that your degree didn't actually got into the physiology or it's very much out of date.

[Calm]

2 hours ago, BlipBlap said:

Again, why would a sleep study be particularly relevant to RLS when it isn't a sleep disorder and can often occur when awake?  It's a movement disorder like Parkinson's.

Wow.  Okay…do you see insomnia as not a sleep disorder for the same reason…it doesn’t occur when you are asleep, only awake.  Do you believe a sleep study is pointless for insomnia?

RLS is technically defined as a sleep disorder because it interferes with sleep.

RLS is technically a movement disorder because it affects movement.

RLS is a neurological disorder because there is something dysfunctional in the nervous system.

Guess what, it can fall into all three categories at once.

I personally prefer “sleep-related neurological sensorimotor disorder” myself.  Hits all relevant major categories at once,

A disorder can belong in more than one category at a time,

And btw, it’s not just “often” happening while you are awake, probably it is “only” as it is defined as sensations experienced while conscious delaying or preventing sleep.*** Of course, that includes being half or barely conscious, but your brainwaves probably wouldn’t show in a solid sleep cycle yet.  At most fluctuating between alpha and theta (think that’s waking and light sleep, been awhile, so could be wrong on the label).  Everyone I have heard describing them said it was preventing them from sleeping. Never mentioned they felt them while sleeping.  I don’t feel it when I am partially awake and just drifting.  I can think to myself hey, great, no RLS, I will be able to go back to sleep easily and the next minute it’s there because I focused on it.

 That is something I should research.  Though I have dreamed talking about the sensations at times, I have never had a trying to find relief for RLS dream like I have had trying to find a restroom with a functional toilet dream when I have been asleep with a after drinking significant water.

Pretty sure it was the PLMD that was throwing me out of my bed.  That’s what pushes the blankets and pillows on the floor, tears holes in the sheets, and has my head off the side or down at the bottom instead of the top. RLS makes me twitch and scratch and then give up and bang my body against the wall or just rock and rock with loud music with a strong, consistent drum beat.  Oh, and kick people who just lightly touch me.  I actually hit someone once too, but generally it’s my legs that are trigger happy.  Restless legs is not the movements, but the sensations nor does it directly/automatically cause the movements.  My mother who had an occasional mild form of it found if she held herself still resisting the urge to move, it passed faster.  For me, it made it worse, but I got my dad’s version (I don’t know if her dad had it, her mom didn’t, so it may not have been the vicious genetic version I got from dad).  It’s the hoping for relief that causes the movements.  Can be so intense, not moving is painful.  
 

PLMD is directly movement, the moving around in bed while asleep, otoh.  They can get confused because so many with RLS have PLMD, but not the same.

I have said 24/7 in describing my RLS, you made me think about this and maybe I need to switch it to 18-20/7 for precision.

Edited 1 hour ago by Calm

[Calm]

2 hours ago, BlipBlap said:

If you come to me with RLS, I'm not going to order all that.  I'd just give you a low-dose dopamine agonist and reevaluate in 6-ish weeks.

And I would have a very good case for malpractice.  
 

Btw, you are out of date.  Dopamine agonists are no longer the first line choice for long term treatment.  While it was Sinemet that took my disorder in 3 weeks from primarily nighttime moderate, occasionally severe to all day every day severe with the bugs just moving in rather than visiting from time to time, the agonists just kept digging it down deeper and added nausea, vomiting, compulsive eating, migraines and chronic low level depression (emotionally numb, no lows but no highs, life like a treadmill, living in bubble wrap).

https://sleepreviewmag.com/sleep-treatments/pharmaceuticals/prescription-drugs/restless-legs-syndrome-dopamine-agonists/

https://www.health.harvard.edu/diseases-and-conditions/a-major-change-for-restless-legs-treatment

Tried all three as well as pergolide.  Fun times.

Quote

For more than 20 years, the go-to treatment for RLS symptoms has been a class of medications called dopamine agonists, such as pramipexole (Mirapex), ropinirole, and transdermal rotigotine (Neupro). But the American Academy of Sleep Medicine (AASM) now says that while the drugs may help at first, long-term use can eventually make RLS symptoms worse - so it recommends against such use.

"We no longer recommend them as a first-line treatment, and maybe not even the second. You have to warn patients about them and monitor them regularly if they take them," says Dr. John Winkelman, an RLS specialist and professor of psychiatry at Harvard Medical School. He led the AASM task force that wrote the new recommendations, which were published in the January 2025 issue of the Journal of Clinical Sleep Medicine.

I would be out looking for another doctor before you finished typing your treatment protocol into my file.

Ever heard of augmentation? projectile vomiting?  That would be a horrendously obvious case of a doctor refusing to listen to his patient. Had one of those, so I know it’s possible.  I went back to the guy who gave me my second sleep study…or was it the third? and had to beg him to take me on.  I had been passed to the disaster doc when my neurologist who found my best solution moved out of town and she hated the opioids and just pretended me sleeping only for a few hours during the day on the drug she was comfortable with was reasonable after assuring me she was going to work with me no matter what to give me back a decent routine.  She gave up after three tries with different drugs.  I am a difficult case, but easy patient according to most of my doctors.  I am good friends with a couple of them.

Edited 2 hours ago by Calm

[Calm]

2 hours ago, BlipBlap said:

Right, so if you have a psych degree, you should be familiar with the monoamine hypothesis for depression.  Since you didn't make the connection between my initial comment regarding the similarity RLS has to depression, I'm going to go out on a limb and say that your degree didn't actually got into the physiology or it's very much out of date.

It’s old (85) But was in clinical psych when first when getting the depression diagnosis, within 5 years for most of them, 8 years the last time.   Not that hard to remember diagnostic criteria for depression and share that with the doctors.  These are the current ones, would have to check, but assuming they are more thorough now, so will just use these.

The 9 Diagnostic Symptoms

Depressed mood: Feeling sad, empty, or hopeless most of the day.  Me from age 22-42 (or whenever I got put on the dopamine agonist that rewired my brain so to speak):  nope, definitely not

Loss of interest: Little to no pleasure in all or almost all activities (anhedonia).  Me:  nope, definitely not.

Weight or appetite changes: Big weight loss (not dieting) or weight gain, or big change in appetite.  Me:  only when put on antidepressant drugs (gained 5 lbs in a couple of weeks with all of them) or pregnant.

Sleep changes: Trouble sleeping (insomnia) or sleeping way too much (hypersomnia).  Me:  massively both, hours to go to sleep, 12-16 hours once asleep if not woken up.

Physical movement changes: Feeling overly restless or noticeably slowed down to others.  Me:  restless at times (duh)

Fatigue: Tiredness or loss of energy nearly every day. Me:  lots and lots of fatigue

Worthlessness: Feeling worthless or having heavy, unneeded guilt.  Me:  nope, not at all, some frustration though 

Concentration trouble: Trouble thinking, focusing, or making choices.  Me:  nope, not at all

Suicidal thoughts: Recurrent thoughts of death, thinking about suicide, or a suicide plan. [1, 2]  Me:  once, due to a drug, very scary, never took the drug again

So explain to me why they went to depression instead of sleep issues?  Heh, maybe because their training in sleep issues was minimal.  Not their fault, just the way it was set up, but why not send me to a specialist instead of arguing with me I was depressed? “How can I be depressed when I am happy, in a good mood, enjoying university, have the best kid in the world and a sweet, noncritical husband, and having fun with my family?”

Not saying they were negligent in not discovering my RLS.  They were negligent for focusing on depression when I lacked the most obvious mood dysfunctions and only had sleep related issues.  They should have focused on sleep.

——-

I am well aware of how serotonin, dopamine, and norepinephrine interact with deficiencies or imbalances leading to a large variety of not nice stuff.

Well aware dopamine is involved with some forms of RLS.  Still undetermined if all as there are quite a few varieties, mine is a combo of genetic, iron-related, medication-associated, pregnancy-associated and possibly trauma as I was in a car accident at thirteen and my head crashed against the dashboard.

I studied dopamine deeply when looking for alternatives to the Parkinson drugs that were driving me insane.  Iron is tested because it’s indicated for dopamine synthesis.

Please explain the connection between depression and RLS as you see it.  Always interested in learning.  I am assuming it’s more than just dopamine is involved.

Edited 2 hours ago by Calm

[Calm]

3 hours ago, BlipBlap said:

Monoamine problem.  In the case of RLS, a deficiency of the neurotransmitter dopamine.

It would be more accurate to describe as possibly a dopamine dysfunction, involving altered dopamine signaling and regulation.  Not all forms of RLS have been able to be linked to dopamine yet, but I wouldn’t be surprised if it ended up involved in some fashion.

Edited 1 hour ago by Calm

[BlipBlap]

2 hours ago, Calm said:

Wow.  Okay…do you see insomnia as not a sleep disorder for the same reason…it doesn’t occur when you are asleep, only awake.  Do you believe a sleep study is pointless for insomnia?

RLS is technically defined as a sleep disorder because it interferes with sleep.

RLS is technically a movement disorder because it affects movement.

RLS is a neurological disorder because there is something dysfunctional in the nervous system.

Guess what, it can fall into all three categories at once.

I personally prefer “sleep-related neurological sensorimotor disorder” myself.  Hits all relevant major categories at once,

A disorder can belong in more than one category at a time,

And btw, it’s not just “often” happening while you are awake, probably it is “only” as it is defined as sensations experienced while conscious delaying or preventing sleep.*** Of course, that includes being half or barely conscious, but your brainwaves probably wouldn’t show in a solid sleep cycle yet.  At most fluctuating between alpha and theta (think that’s waking and light sleep, been awhile, so could be wrong on the label).  Everyone I have heard describing them said it was preventing them from sleeping. Never mentioned they felt them while sleeping.  That is something I should research.  Though I have dreamed talking about the sensations at times, I have never had a trying to find relief for RLS dream like I have had trying to find a restroom with a functional toilet dream when I have been asleep with a full bladder.

Pretty sure it was the PLMD that was throwing me out of my bed.  That’s what pushes the blankets and pillows on the floor, tears holes in the sheets, and has my head off the side or down at the bottom instead of the top. RLS makes me twitch and scratch and then give up and bang my body against the wall or just rock and rock with loud music with a strong, consistent drum beat.  Oh, and kick people who just lightly touch me.  I actually hit someone once too, but generally it’s my legs that are trigger happy.

I have said 24/7 in describing my RLS, you made me think about this and maybe I need to switch it to 18-20/7 for precision.

 

2 hours ago, Calm said:

And I would have a very good case for malpractice.  
 

Btw, you are out of date.  Dopamine agonists are no longer the first line choice for long term treatment.  While it was Sinemet that took my disorder in 3 weeks from primarily nighttime moderate, occasionally severe to all day every day severe with the bugs just moving in rather than visiting from time to time, the agonists just kept digging it down deeper and added nausea, vomiting, compulsive eating, migraines and chronic low level depression (emotionally numb, no lows but no highs, life like a treadmill, living in bubble wrap).

https://sleepreviewmag.com/sleep-treatments/pharmaceuticals/prescription-drugs/restless-legs-syndrome-dopamine-agonists/

https://www.health.harvard.edu/diseases-and-conditions/a-major-change-for-restless-legs-treatment

Tried all three as well as pergolide.  Fun times.

I would be out looking for another doctor before you finished typing your treatment protocol into my file.

Ever heard of augmentation? projectile vomiting?  That would be a horrendously obvious case of a doctor refusing to listen to his patient. Had one of those, so I know it’s possible.  I went back to the guy who gave me my second sleep study…or was it the third? and had to beg him to take me on.  I had been passed to the disaster doc when my neurologist who found my best solution moved out of town and she hated the opioids and just pretended me sleeping only for a few hours during the day on the drug she was comfortable with was reasonable after assuring me she was going to work with me no matter what to give me back a decent routine.  She gave up after three tries with different drugs.  I am a difficult case, but easy patient according to most of my doctors.  I am good friends with a couple of them.

 

2 hours ago, Calm said:

It’s old (85) But was in clinical psych when first when getting the depression diagnosis, within 5 years for most of them, 8 years the last time.   Not that hard to remember diagnostic criteria for depression and share that with the doctors.  These are the current ones, would have to check, but assuming they are more thorough now, so will just use these.

The 9 Diagnostic Symptoms

Depressed mood: Feeling sad, empty, or hopeless most of the day.  Me from age 22-42 (or whenever I got put on the dopamine agonist that rewired my brain so to speak):  nope, definitely not

Loss of interest: Little to no pleasure in all or almost all activities (anhedonia).  Me:  nope, definitely not.

Weight or appetite changes: Big weight loss (not dieting) or weight gain, or big change in appetite.  Me:  only when put on antidepressant drugs (gained 5 lbs in a couple of weeks with all of them) or pregnant.

Sleep changes: Trouble sleeping (insomnia) or sleeping way too much (hypersomnia).  Me:  massively both, hours to go to sleep, 12-16 hours once asleep if not woken up.

Physical movement changes: Feeling overly restless or noticeably slowed down to others.  Me:  restless at times (duh)

Fatigue: Tiredness or loss of energy nearly every day. Me:  lots and lots of fatigue

Worthlessness: Feeling worthless or having heavy, unneeded guilt.  Me:  nope, not at all, some frustration though 

Concentration trouble: Trouble thinking, focusing, or making choices.  Me:  nope, not at all

Suicidal thoughts: Recurrent thoughts of death, thinking about suicide, or a suicide plan. [1, 2]  Me:  once, due to a drug, very scary, never took the drug again

So explain to me why they went to depression instead of sleep issues?  Heh, maybe because their training in sleep issues was minimal.  Not their fault, just the way it was set up, but why not send me to a specialist instead of arguing with me I was depressed? “How can I be depressed when I am happy, in a good mood, enjoying university, have the best kid in the world and a sweet, noncritical husband, and having fun with my family?”

Not saying they were negligent in not discovering my RLS.  They were negligent for focusing on depression when I lacked the most obvious mood dysfunctions and only had sleep related issues.  They should have focused on sleep.

——-

I am well aware of how serotonin, dopamine, and norepinephrine interact with deficiencies or imbalances leading to a large variety of not nice stuff.

Well aware dopamine is involved with some forms of RLS.  Still undetermined if all as there are quite a few varieties, mine is a combo of genetic, iron-related, medication-associated, pregnancy-associated and possibly trauma as I was in a car accident at thirteen and my head crashed against the dashboard.

I studied dopamine deeply when looking for alternatives to the Parkinson drugs that were driving me insane.  Iron is tested because it’s indicated for dopamine synthesis.

Please explain the connection between depression and RLS as you see it.  Always interested in learning.  I am assuming it’s more than just dopamine is involved.

...Insomnia would obviously be a sleep disorder as it indicates that you can't sleep.  That's a massively poor attempt at a counter.  Would you call paralysis something other than a movement disorder because you aren't moving?  What do you think "disorder" means?  RLS isn't a "sleep disorder" because the movements involved can occur whether you're awake or asleep.  Hence it being a "movement disorder".  It wouldn't even be "sleep-related" for the same reason.  You could have the problem while being wide awake and sitting in a cramped space for extended periods of time, like on an airplane.  Presumably you could also have it in other instances too, like standing in a military-style formation (be it in the actual military or something like marching band) for example.

You don't have to meet all diagnostic criteria in order to be accurately diagnosed with something, and seeing as how in your initial post on the subject you stated the following:

"I told doctors I was sleeping 16 hours a day, no sleep test offered.  I told them 20 years later I was sleeping 30 minutes at a time a couple of times a day."

Doesn't sound like a sleep disorder at all.  It sounds at best like depression.

I don't recall saying that dopamine agonists were first-line, but neither of your links suggest that they shouldn't be.

Oddly enough, your first link goes along with what I said:

"Although dopamine agonists (DAs) have excellent short-term efficacy for RLS patients and relatively few side effects, Winkelman says, they are also associated with a long-term overall worsening of RLS symptoms,"

Now, compare that to my statement:

"I'd just give you a low-dose dopamine agonist and reevaluate in 6-ish weeks."

6 weeks isn't' "long-term".  All your second link is is a rehashing of the first.  It cites the same doctor's work.

Now given that GABA is an inhibitory neurotransmitter, it does make sense for RLS.  Ironically enough though, about a third of the people on GABA analogs experience...psychiatric depression.  There's also the other problems, but I'm sure they're nothing too bad.

Oh.

https://web.archive.org/web/20191222091828/https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-serious-breathing-problems-seizure-and-nerve-pain-medicines-gabapentin-neurontin

Well I suppose that your RLS will be fixed if you stop breathing.

Seeing as how you're articles touch on what happens if people miss dopamine agonist doses, I wonder what happens if people miss their doses of GABA analogs.

Insomnia

Confusion

Suicidal ideations

So yeah, it doesn't look like dopamine agonists being first or second line treatment is "outdated".  You're confusing practice with theory, and using GABA analogs is still most definitely theory in this case.

I already explained the connection between RLS and depression.

[BlipBlap]

4 minutes ago, Calm said:

It would be more accurate to describe as a dopamine dysfunction, involving altered dopamine signaling and regulation.

Sure, but that would still make it a "monoamine problem".  It would still make far more sense to use it instead of GABA analogs given the general inhibitory effect of GABA versus dopamine's inhibition of norepi/noradrenaline only.

[Calm]

1 hour ago, BlipBlap said:

Sure, but that would still make it a "monoamine problem".  It would still make far more sense to use it instead of GABA analogs given the general inhibitory effect of GABA versus dopamine's inhibition of norepi/noradrenaline only.

So you are ignoring the recommendations of actual doctors and researchers based on real life responses to depend on an out dated oversimplification of the process involved?