Interesting, re: bedtime

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

Hi Randy, glad to see you around. If I remember correctly, in the last year or so they have said that people need between 7 and 10 hours of sleep, but most of us at least 8-9. Since sleep cycles are 90 minutes, it would seem that we "should" want 6, 7.5. 9, or 10.5 hours if we are sleeping naturally and without being awakened by other stuff (and how often does that happen!). There do seem to be some people that consistenly need less, like you and your mom.

I completely agree with you, and with Sara, that we are completely different and have different needs. One point that I apparently thought but didn't make is that I also think we have many types of RLS. When I said classic, I didn't mean that one was better or worse or better to have or that I was in competition against any of you, just that it fits with what Ekbom first described. Since then, however, there are many people who have different experiences. And the doctors have missed these and not considered someone to have RLS if they didn't fit the "classic" profile (then again, many didn't think ANY of us had ANYTHING, even if we did fit the "classic" profile because they hadn't ever read Ekbom's work). These are still valid as RLS. But most of these can still be lumped into some general categories as they ALL have wierd/painful sensations that are releived by movement. What differs mostly (I am guessing) is how we explain and describe it, because our individual language is so different and what I call pain, you might not. From experience, most of us prefer to be unique, rather than to fit in a category, which also complicates things. Doctors and researchers want to make it fit into neat little rows and sections and we don't always help them do that.

Ann
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.

Guest

Post by Guest »

Okay, Ann.... let's back the truck up a little here.


WHO EXACTLY are you lecturing about "wanting to be unique rather than fit into a category"? It seems to me that with the exception of my comment about being the "exception to your rule", most of my posts to this discussion (and my history of posts to this forum) have been about the SIMILARITIES I have with others here--- and my (logical, IMO) belief that I'm part of a very common and unspectacular "version" of RLS. (And I felt I had no choice but to "excuse" myself on that earlier point of "exception, since you presented such a convincing case for why I MUST not be like other RLSers.)

As I seem to have made relatively clear, looking back at this discussion, I'm obviously NOT the only person who sleeps better with an earlier bedtime, I don't claim to have worse or different symptoms than anyone else, and if I didn't believe that I was pretty much just like at least a certain set of other people who DO "fit into a neat little line and segment" of early-to-bedders, WHY would I have bothered to post my original, non-threatening, low-key, "maybe this can help someone else" post? You must have been thinking of someone else.

As for "ignoring your posts", I've never had any problem ignoring the 80-90% of posts, including many of yours, which don't pertain to my symptoms/experience/lifestyle values/etc. Frankly, I'm surprised that you've not decided yet to ignore mine. Clearly my anecdotal and unscientific offerings about my personal experiences "starting out" with only 20 years of RLS can't be of any value or interest to you. Actually, I'm surprised you made it past the first post on this thread, since I clearly indicated that I had no reason to believe it would help more than our mild-moderate level members--certainly that doesn't refer to you. But perhaps it was necessary to chime in to protect strict Ekbomian theory from mis-characterization by someone like me with so little knowledge or experience.

The whole issue of "best" sleep times for RLSers is certainly an interesting one. I have to admit I'd not heard before Corrie mentioned it that there was a specific recommendation of optimum bedtimes. I'm glad that she mentioned it, and that you expanded on the theory with specific information about dopamine variations during the day. I understand and respect the significance of dopamine levels in the course of RLS.

However, it seems a bit of a stretch to me that researchers would think that individual body clocks-- which are known to differ somewhat due to genetics, personality, health, lifestyle, latitude (or is that longitude?), etc., and which are known also to be somewhat "alterable"-- would be SO consistent among RLSers that to "qualify" for normal symptoms in their/your opinion, we all have to be able to sleeep between 2 and 4 am., or whenever. (I do appreciate you later deciding that other presentations than strictly Ekbomian ones might still be "valid".)

I have to wonder outloud, however, how, if I can't seem to sleep later than about 4 am much of any day of the week/month/year/decade, there could POSSIBLY be a case made that all my troubles would be solved by staying awake until my dopamine levels theoretically climb to the right place for sleep at 2 am. (I won't even presume to speak for the dozen or so other people I know with RLS who also seldom if ever are able to sleep during that early morning period.) And in my original post (and those later in this discussion) I never suggested that an earlier bedtime would work for EVERYONE. I merely shared a new understanding which was helpful to me that I believed was worth taking the time to post in case it was helpful to anyone else with similar RLS symptom timing..


But perhaps afterall you hit on it when you earlier commented that maybe "some of us have classic RLS and some of us have our dopamine levels screwed up some other way. " I think that you might be right. I think now that I have NDS, rather than RLS..... Naughty Dopamine Syndrome.... All the rest of you out there that have all the symptoms that flash on the RLS.org homepage but don't have them at the "classic" Ekbomian body-clock setting times, contact me. Maybe we need to start our own foundation.

Let's call a spade a spade here, Ann. I think that your communication skills are fine. I think that I, for one, "got" your point. Your use of patronizing and belittling terminology to those of us who you feel aren't suffering as much as you and your ignoring of parts of posts of other experienced and respected members of this forum (and I DON"T mean me) that don't prove your point, etc., are frequent enough that it doesn't seem like it can all be some big misunderstanding on my part.

Personally, I couldn't care less what you think about me or my RLS ( though I certainly have not "felt the love" you were referring to when you commented on my "input, clear thought and perspective"). But as I said, at some length and IMO in relative clarity earlier, I believe that the absolutism and intolerance with which you seem to so frequently approach subjects such as non-pharmaceutical therapies and lifestyle choices -- which I FULLY understand (and respect) that you feel do not have much merit for YOUR PERSONAL SITUATION, (except as you said, vitamins) but which DO OBVIOUSLY HELP SOME MEMBERS AT VARIOUS LEVELS OF RLS SUFFERING, with or without pharmaceutical aids, doctor's advice, etc.-- is counterproductive to the discussion process and, hence, to the potential well-being of the people who come here for information and support.

In your last post to this discussion, you said that you think we all have "different types of RLS." If you are referring to the details of "presentation" beyond the basic four diagnostic factors you quote to newbies, I'll buy that, to an extent. But again, WHO's making the distinctions? Who's trying to split us off into our own little cliques of RLS intensity/timing/etc. In analyzing a "syndrome", which I'm sure you're aware is technically a collection of symptoms, perhaps we need to ask ourselves at what point is it more useful to focus on the similarities rather than nit-picking and emphasizing the differences.

I hate like heck to step up and say any of this, because of the pain and frustration I know this will cause some members. But I also know that I'm not the only one who's "been offended" now or in the past-- and my ONLY reason for ever participating in this forum was to try in some small way to contribute to a broader discussion of this condition.

Your sig file has recently been updated to say "Take what you need, and leave the rest." Certainly that's good advice, when we find that someone else's experience, strategies or presentation of RLS differs from our own. That's ONE reason why I don't post here too much anymore. But on that point, Ann, I'd have to suggest, respectfully.... "Physician, heal thyself". You drew "first blood" on this one, and that was your choice.

Sara

ViewsAskew
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Post by ViewsAskew »

Sara, thank you for your honesty in how you feel about this. It's given me much to think about. I appreciate you letting me know that you and others have been bothered/offended by my posts in the past. As that was not an intent (and when I have done something and known it, I have immediately apologized), I am saddened to realize that this is true.

You may chose to believe this or not, but I honestly am astonished by most of your post. I truly do think your posts are wonderful and have never thought of your posts with anything by respect. I can't ever recall thinking otherwise. I do also truly believe that I don't communicate much of what I am thinking. I often only get out parts and don't explain it for others to get a perspective of what I meant. This is very apparent in this thread as your take on what I meant and what I meant are very, very far apart. And this saddens me greatly, too.


Ann
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.

cornelia

Post by cornelia »

I tried to find the extract on the circadian rhythm of RLS. From this I understand that going to bed late is recommended.
I know that dr B sometimes mentions that tiredness and sleepiness tend to make RLS worse, which could imply that going to bed earlier before one is really tired is a good thing.
That is probably one of the reasons that we have to deal with the problem differently, I don't know.
What I do know is that I sincerely hope that both Sara and Ann will continue posting on this board.

Corrie


1: Mov Disord. 1999 Jan;14(1):102-10. Related Articles, Links


Circadian rhythm of periodic limb movements and sensory symptoms of restless legs syndrome.

Trenkwalder C, Hening WA, Walters AS, Campbell SS, Rahman K, Chokroverty S.

Department of Neurology, Max-Planck-Institute of Psychiatry, Munich, Germany.

The symptoms of restless legs syndrome (RLS) worsen while patients are sitting or lying and also worsen at night. The current study was designed to determine if the periodic limb movements (PLMs) and sensory symptoms of RLS are modulated by an independent circadian factor. We recorded sleeping and waking PLMs and waking sensory symptoms in eight volunteers with RLS for 3 successive nights and days, starting with a polysomnographic recording of 2 nights, followed by a third night of sleep deprivation and the day after sleep deprivation. This study showed that both the PLMs and sensory symptoms were worst at night with a maximum for both between midnight and 1:00 AM and a minimum between 9:00 and 11:00 AM. Sleep and drowsiness had a tendency to worsen PLMs and sensory symptoms after the night of sleep deprivation. Circadian temperature curves were normal in all four patients with adequate data collection. The highest PLM counts occurred on the falling phase of the circadian temperature curve whereas the lowest PLM counts occurred on the rising phase of the curve. We conclude that the PLM and sensory symptoms in RLS are influenced by a circadian rhythm, and that the "worsening at night" criterion of the RLS Definition Criteria is, at least in part, distinct from the "worsening while lying or sitting" criterion.

Guest

Post by Guest »

Hi, Corrie--

Interesting to see the actual study results language. Couple things were interesting to me.

It was a sample of only eight RLSers, but did I read it correctly that only four had sufficient measurements to be used? I don't think that that negates the significance of the circadian element in symptom intensity--- especially since I already believed in that. :wink: But since we know that circadian rhythms do vary, as well as even change to some extent due to time/circumstance/age/natural light/etc,, in different people, I have to wonder if a sampling of 800 RLSers would come up with exactly the same "mean" time for highest, lowest symptoms, activity?

I would also say that I definitely agree that there is probably a distinct circadian element that is separate from the sitting/lying down element. For me, these days, pretty much any time of day I sit down for any period of time, I'm uncomfortable-- but late in the day, I also often feel my RLS if I just stand still for any period of time, too. I know that many of us have discussed the busy-ness of daytime helping keep our minds off any RLS symptoms we might have 24/7. But it seems likely that the reason evenings/nights can be SO excrutiating is indeed because of the circadian element.

This also reminded me how my teenaged son's RLS symptom onset each day is slightly later now than it was, say, a year ago. Many studies have shown that teenagers undergo a change in their "optimum" sleep hours-- toward later bedtimes and later wake-ups. Clearly our son's sleep/wake patterns are changing, and his RLS seems to be keeping fairly consistent "step" (ouch, no pun intended on that one! :wink: ) with the change in timing of his optimum sleep time.

Thanks for posting that, Corrie.

Sara :D

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

Hi,

Im not really sure whats happened here, but it doesnt feel too good?

When people write things down its very common for misunderstanding to happen as its not easy to "feel" what people are saying and hear/see the nonverbal content. you cant beat face to face and anything less can be obstructive and difficult at times. has there been a misunderstanding here?

i would love to see some kind of resolution on this as it feels a bit like some people have been hurt here and i dont like to see people hurt? we have a good team here and it would be good to keep that alive.

cornelia

Post by cornelia »

Sara, I know there is at least one other research done on circadian rhythm, but I couldn't find it. Something is said about it in the Medical Bulletin 2005, which you can find under: "About the RLS Foundation" and then click on "Publications".

(Sigh) it really is so complicated, this aweful disorder.

Corrie

Guest

Post by Guest »

Hi, Corrie--

Thanks for directing us to this report as well. Interesting reading, and it had been a while since I'd prowled the site info, since I'm sort of in a "pattern" with my own symptoms.

Page 9 on the 2005 report has some interesting information re: this subject of bedtimes. I see there some of the information Ann quoted studies of earlier about dopamine levels at mid-morning, etc. I found some of the later paragraphs also interesting, however. Excuse me if I didn't get this exactly right, but basically it says....

" Timing of individual's RLS depends on both the basic circadian pattern of expression and the conditions under which it is expressed. Onset with rest is variable.... patients with mild symptoms report that their symptoms bother them only when... [for the sake of brevity, basically they have to endure rest for a longer period of time without being able to move or sleep, like airplanes or a night at the theatre.].... A good sleeper or someone with chronic insufficient sleep may fall asleep rapidly enough that the period of rest before sleep is too short to allow symptoms to develop to a significant degree [to keep them from getting to sleep.]"

Now this is interesting. It would support the theory of not going to bed "too early" because you wouldn't be sleepy enough to get to sleep fast enough. It would also support, in some ways, some of the bedtime rituals others here use, like hot baths and reading and TV watching and such to try and SPEED sleep onset, and prevent a long "at-rest" period before sleep. It also backs up the theory often mentioned around here that if one doesn't get to sleep within a certain period of time once they're in bed, they might be better off just getting up. This used to be advice for insomnia as well-- and I know it worked for a long period of insomnia (non-RLS) that I suffered as a teen. I think it also, however, would support that the "right" time for trying to GET to sleep could be quite important, whenEVER that time period is. Again, trying to limit the "at-rest" period as much as possible.

Perhaps it's a sign that I'm "doing it right" that most nights I start to fall asleep only about two pages into the novel I'm reading. I was inclined to complain at my slow progress in the books I read, but maybe now I won't! :lol:

Thanks again for posting that information, Corrie.
Sara

trevb
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Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

sara are you able to email me? i cant seem to p.m you as you are signed in as guest?

Guest

Post by Guest »

Hi, Trev--

When the site did their "new and improved" version, it unregistered me, so I'm not currently a member. That's why you can't find me for a PM. :D

Sara

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

ok i see..

my email address is in my profile, if you want, then ill be able to email you?

Guest

Post by Guest »

Trev--

If it has anything to do with this thread, I'd rather not. There's nothing I need to say to anyone privately on top of what I've said publically. No offense.

BTW, I went briefly to your site earlier. I'd never been before. Looks very cool. What nice design. Hope you're doing well.

Sara :D

Walking After Midnight
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Post by Walking After Midnight »

Practical question...are we still doing "Stonehenge"?

trevb
Posts: 214
Joined: Mon Aug 01, 2005 3:49 pm

Post by trevb »

sara,
id like to talk about what happened in this post and would rather do it 'privately' as saying things over the forum is not my style. id appreciate it?


i dont think this should be left as real people have been hurt and that needs to be resolved if possible! this is not a playground! we are all grown up here.. i would appreciate talking.
thanx

Guest

Post by Guest »

Trev--

I sensed your discomfort in your first post to this thread, and I understand it. You don't know me well, but if you did, you'd know that what I said I did not take lightly-- nor did I enjoy it in any way.

But neither am I ashamed of it.

From your use of the term "playground" and the phrase "real people have been hurt", it sounds as if you feel that I've acted childishly and irresponsibly. I'm sorry if that's how you feel about it, but I respect your right to your opinion.

I am afraid that you and I, respectfully, will have to "agree to disagree" on that. In my opinion,, I think that it would be much more childish, and much less "adult", for us to take this to e-mail. I said what I said in open forum because we ARE all adults, and I felt that discussing things in the light of day would give other members a chance to make their own judgements about the merits of the discussion.

It concerned me (and not for the first time) that points I thought were worth posting (by myself and others) for the possible benefit of the group were being publically discredited and patronized, to the POTENTIAL disadvantage of the membership in general. I could have "gone behind the scenes" (well, actually, I couldn't because I'm not a member and cannot use PMing)...but most forums (rightly) discourage members approaching eachother in private with controversial subjects. There's too easily developed a feeling of being harassed in the privacy of your own inbox. Any legitimate disagreement -- if it's apropos to the "business" of the forum-- is better aired in the light of day.

But beyond that, Trev, there were specific issues here that could be important for the membership to "hear both sides on"--- not the tension between us, certainly, and I did express my regret for that--- but the RLS-specific issues. I believe that since we ARE adults here, and this is NOT a playground, each member AS an adult now has the opportunity, if they even care, to decide for themselves about those issues, and about how we present what we present here.

I've been on many different types of forums, and this is not my first medical support forum. I hate more than you'll ever know any type of tension on a forum, most of all on one designed for medical support. We certainly have enough frustration and hurt to deal with just from RLS. One of the reasons I seldom post here anymore is because of dynamics here that made me uncomfortable (consistently) in the past. But I believe in the group's role, and occasionally I do feel that there's something I have to say that's worth saying, in case it will help someone else.

I've watched my own and other people's comments sort of pooh-poohed, and I understand why usually no defense is made. Part of it is a feeling like yours (and mind) that we all want to "play nice"; another part may be that when challenged we begin to doubt our own opinions/observations. But that was the very reason why one of my early comments in this was that we need to be extra respectful of one another here. The world outside, the medical community, etc., are NEVER GOING TO "GET" WHAT WE GO THROUGH.... unless they LITERALLY "get" it. :wink: And frankly, I'm not all that impressed or encouraged personally by the latest research. I feel like MOST of the efforts "in our direction" are aimed at finding new medications to try on us, which, if they stop working in a couple months or a couple years-- or if they cause us dangerous side effects-- the pharmaceutical companies and doctors can just say, "Ooops... but don't worry, we have ANOTHER new drug you can try."

If professional recommendations about this condition we share are, for example, made based on 4 decent test results out of only 8 to begin with-- how much MORE POTENTIAL is there for knowledge, perspective and understanding of the presentations of RLS if we HERE..... hundreds of us.... feel free to speak openly and share our own experiences and our own knowledge of these, often uncomfortable, bodies WE live in???

WE are REALLY the "RLS experts", and as much as I both understand and am interested in the scientific work on this condition, science history has proven OVER AND OVER that what the scientific community has at one time taken as gospel has later on been found to be either wrong or only a part of the "puzzle". There's MUCH yet... a HUGE amount of information actually... about our bodies, illness, nature, etc., that science has just cracked the surface of, just barely come to ANY elementary understanding about.

So my main point here was, as much as anything, that the "least" of us (and some of us have felt we've been treated as "lesser" here) have both a right and a responsibility to participate when we feel we have something potentially useful to add. And Ann WAS right... what doesn't pertain to any one of us, can and SHOULD probably just be ignored.

I've said OVER AND OVER that I REALIZE my condition is not as severe as others here. I'm TREMENDOUSLY sympathetic of those who suffer SO horribly. I'm THRILLED for those who can get by with only soap in their bed ... and for those who have found medications that ease their suffering even a little. I count my blessings every night that I AM able to get to sleep relatively well, if earlier than I might prefer... and every day that getting up and moving around DOES still reduce the intensity of my sensations most of the time.

But I don't want you and I to e-mail back and forth about who was "right" or "nice" and who wasn't. I don't want to do, what I feel would be even more "schoolyard" than what I did, and have some sort of private and then public "making up" with Ann as a token of "solidarity" or whatever.

ANN, if you're still reading this-- Some here will think that I "said my dirties" and "got my licks in" at your expense, and now I want to just move on like it never happened. That's not how I see it. When I felt that I and others were disrespected by you, I tried to make that point. When I felt you lectured me in your response to that, I felt I needed to clarify some issues and make my point more directly. I have NO idea what your intent was, as I realize you cannot read my mind. That's why I tried to be specific, rather than just railing on emotionally from blind indignation.

Personally, I feel that at this point, we both "had our say", and that now, frankly, you are probably the more sympathetic figure. I'm fine with that. You work very hard on this forum, and you've suffered horribly from RLS--- you've earned a level of respect, and even to be cut some slack if what you mean doesn't always come out the way you meant it.

You and Trev both, I believe, have the capability, to remove this whole discussion, and make this not only "end" but disappear completely, if you choose to. And I've realized that from the beginning. If you choose to do it now, I respect that choice.

Trev, I know this is not what you wanted to hear, but just as it's not your way to speak publically, it's not MY way (and I think it's potentially MORE damaging) to treat this as if it's something shameful and to try and fabricate some back-alley "truce". I personally don't feel I need a truce of any kind with Ann, because I'm just as able today as I was four days ago to read and consider Ann's posts objectively. IF I'm reading your feelings right, and you think that's a childish and irresponsible attitude, the good news is that probably you're not the only one, and my comments will (if left alone, or removed, your choice) fade quickly into the obscurity that they may, indeed, deserve. We ARE all adults here, and the other people who have read this thread have probably already made up their minds as to the merits, or lack thereof, of anything I've said.

I really meant it when I said, I mean no offense to you (or to anyone else), but now I've tried to explain why. If I've failed, I can only fall back on what you yourself said earlier, I guess. It's hard to "feel" what people mean sometimes from non-verbal communications.

Sara

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