Interesting, re: bedtime

[Guest]

Just wanted to mention, gang, because I've always said that an earlier "to-bed" makes a big difference in whether or not or how fast I get to sleep, something else I've noticed. No help probably for our worst-affected members, but maybe for some of the mild-moderate folks who I've heard say recently "as soon as I hit the bed, it starts".


Usually my RLS starts mid- to late- afternoon, and gets worse all evening, so by 8 pm, I'm usually looking for an "out" from my evening family duties to head for bed "while the gettin's good".


But a few times in the last month I've noticed that even on an afternoon/evening when I don't have bad RLS, the later I go to bed, the more likely I am to have trouble falling asleep. This seems to be true even if I was not particularly NOTICING my RLS when I was up. Like some others here, I think I really have at least mild RLS pretty much 24/7 a lot of the time-- I only NOTICE it more when the parts of the day come around when I'm trying to sit and relax.


But at any rate, I just wanted to suggest that there might be others here on the forum for whom late bedtimes might be contributing to their bedtime battles, since overtiredness is certainly a trigger for many of us. Now that this has occured to me, I think it's going to be yet another reason to hit the hay at a relatively consistent time, whether or not my RLS is noticeably in the ascendent on any particular night.


Just my two cents.
Sara

[ksxroads]

Thank you Sara all those cents add up! *Big Grin*

I agree that a consistent bed time routine is important. Using products like herbal shower gels, lotions to promote relaxation help. I do a few Tai Chi stretching exercises. Try to maintain a calm relaxing atmosphere, take my medication half an hour before going to bed. I am fairly consistent in the hour I go to bed. If I have not fallen asleep within an hour, I will get up and go to the living room and read, stretch etc.

One thing I have found consistent in my RLS is that nothing is consistent! Which can be discouraging. It helps to have a list of varied remedies to try. It all depends on how the RLS flares ... late last summer when it was particularly severe, I went to bed early around 8 and slept just to be woken around 10 by RLS sensations and pain.

Hoping that you continue to find relief from your RLS problem! It is truly a blessing! {{{BIG HUG}}}} Hazel

[cornelia]

I am just wondering: why is it that so many of us are going to bed early, while the researchers say it is much better to go as late as possible, preferably even at 0200? The answer probably is that many have to get up early for work, but for those of us who don't have to work early, have kids or do not work at all, isn't it worth trying to go to bed late?

Corrie

[jan3213]

Hi, Corrie

I've tried both. I went to bed late for a long time, but found the later I went to bed, the more likely I was to suffer an attack of RLS. Now, I go to bed about 10:30 most nights (unless I'm out of my usual routine). That works best for me. And, I try to take my meds about an hour before I go to bed---except for my sleeping pill.

So, I'm in the same place as Sara. But, it's probably an individual thing like most things are with RLS.

Jan

[cornelia]

Thanks Jan, maybe it applies only to patients not being on meds? Because once on meds it might work differenly? Like I couldn't eat chocolate or drink coffee before meds and now, being on so many meds, it doesn't make a difference at all.

Corrie

[Guest]

Corrie--

Jan or someone else who's been on meds could probably comment on that. Having not been on them, I can't guess how that might or might not change things.

But if researchers are recommending a 2 am bedtime for RLSers.... hmmmm... they must not understand a CRUCIAL factor in MY experience of RLS, and that of my son, my brother-in-law, two of my best friends and a number of folks who've commented here.... FATIGUE.


The tireder I am (and it's the same with the others mentioned above), the more likely I am to have a worse-than-usual attack of RLS.

I personally believe that it was the fatigue as much as cold meds that made my original worst RLS attacks happen when I had the flu (though the cold meds do definitely make that worse) and continue to make illness a time when my RLS is likely to be intense. Also, early-on, when my RLS was still intermittent (20s and early 30s), like others have commented here in the past, the pattern of my RLS clearly showed it as a "sign" that it was time for bed. Before I knew it was a "real condition", I thought it was just the way my body told me I ought to be done for the day.

I'm an early-riser-- partly because of my husband's work schedule, partly because of my temperament, partly because of perimenopause, and partly the last few years because my RLS sometimes returns to bother me early in the morning-- so after waking at 4-5 am and having a busy day, clearly by earlier evening, I'm tired enough to go to sleep. If I had a different natural sleep pattern/personality, and if staying up until the wee hours was likely to work out for me, I'd not be AGAINST trying to make that work out.

But as it is, it's becoming more and more obvious that late bedtimes-- with or without noticeable RLS symptoms in the evening-- for ME are tremendously problematic. If I stay up late, I'll have trouble getting to sleep...period.... and I say that as one of the RLSers who is blessed to have LESS trouble getting to sleep, compared to the discomfort I have sitting, watching TV, riding in a car or plane, etc.

Personally, I believe that my being able to get to sleep as well as I generally do (and my son seems to have hit on the same strategy, even before we realized he also had RLS) is directly linked to the fact that I DO go to bed when my RLS starts getting bad (and relatively early even on evenings I am not uncomfortable), that stretching out in bed seems a relief (for whatever reason) compared to sitting still, and that I have established as a bedtime habit from childhood, reading every single night in bed as my ritual to disconnect my mind from the worries of the day and the sensations in my feet.

I take calcium/magnesium tablets, I use Miracle II gel, I stretch, I have lots of things I do in conjunction with this when my RLS is especially bad... but the only way, I believe, that I've salvaged as much quality of life as I have at the level my RLS is now has been through bedtime/fatigue control.

There's lots of talk here about meds, and thank God there are some out there that help!!!!... and periodically we discuss "sleep hygiene" and rituals. But controlling bedtimes is something that doesn't seem to come up here all that much, and that's why I try to mention it periodically. If for others, like for me and many of "mine", RLS is a fatigue/stress "signal" as well as biochemical "symptom" of our dopamine/iron/whatever levels (by this I mean that because the "normal" pattern of our RLS is worse for many of us when we're fatigued/stressed) it seems logical that lifestyle/bedtime-related care of our bodies and minds could be a useful (as well as cheap, side-effect-free, wholesome, etc.) potential tool to have in our personal RLS arsenals.

If I was too proud or stubborn to go to bed early... or if I had a night job or something like that that forced me out/up late... I think I'd be at the doc's desperate for meds, or at least miserable and sleepless every night. Similar to Jan's experience, my worst nights now for being able to fall asleep are invariably the nights I'm up late. Period. As it is, I have RLS every day, sometimes all day and pretty intense, but I'm still blessed with usually 4-6 hours of sleep per night... IF I go to bed when I know I should.

Conventional researcher wisdom notwithstanding.

Take care, everybody.

Sara

[jan3213]

Hi Corrie

I probablay didn't make myself clear (I seem to do that a lot more lately - LOL).

I've been on meds for a long time, as I'm sure you know. But, even ON meds, when I didn't have a "regular" bedtime, the nights I would be up later were the nights I would have attacks (again, even on my meds).

Now, after establishing some bedtime rituals and maintaining a regular bedtime schedule (to the best of my ability), I don't have RLS at night. Now, I'm on Vicodin, as well as my RLS meds, but that's for chronic pain, which is worse at night and is not RLS pain--it's different. But, getting back to my sleep schedule. It's working for me. Before, when I would stay up late, I would be up and down all night long, even though I was taking enough meds to choke a horse!

The only other exception to this is if I have eaten too much sugar. Sugar also seems to be an enemy and if I happen to eat too much, even with meds and the regular bedtime schedule, I will usually have an RLS attack. This has happened often enough that I can attribute it to the sugar.

But, maintaining a regular bedtime schedule has made a world of difference for me.

I hope I did a better job of explaining it this time.

Jan

[cornelia]

Thanks Sara and Jan for your explanations. I have the same rituals every night too and go to bed at 2400 when I am exhausted. Going to bed earlier doesn't work, because I am exhausted from 1100 am on (LOL).

Corrie

[ViewsAskew]

I've read some of the same things about bed time. I think it applies to people for whom RLS keeps from falling asleep. For example, I used to be able to avoid ALL RLS if I went to bed before I was "too" tired. And if I felt a little twinge, I could immediately hop into bed, hold a stretch, and get to sleep.

But at some point, that stopped. Instead, as soon as I would relax, the RLS would start. I couldn't fall asleep anymore. At that point, I did follow the researcher's advice and it did work. If I could stay awake and focused on things during the worst time (about 10 PM until about 2 AM), then I could naturally fall asleep. This still allowed me to avoid drugs.

I may have continued this schedule, however the PLMD forced me to start drugs. It didn't matter how long I slept, I was exhausted. After being tested for every known illness, like thryroid, kidney problems, etc., we did a sleep study. Of course, no deep sleep and little but stage 1 and 2 sleep.

I think Corrie is right. Being on drugs does change things and allow you to stop micro managing all the things that affect RLS. Now, I drink caffeine every once in a while, I NEVER allowed it before. I have chocolate in the evening, I stay up late, I go to be early, I do too much activity, I don't do enough. It doesn't matter. The drugs to the same each day for me and unless I am late taking them, I don't have any RLS. I still keep up with my vitamins, because it does allow me to take a slightly lower dose of meds.

Ann

[Guest]

I guess I'd be the exception to your rule, Ann, overall, since RLS seldom (even if I stay up late) keeps me from falling asleep. But my RLS IS more bothersome in bed if I'm up late.

Sara

[ViewsAskew]

Sara, I don't think you're the exception - I think many of are that way starting out. Some of us get to the point it doesn't work anymore. It works for my mom and my sister. It doesn't work for me or my uncle, but it used to for both of us. And he still can sometimes.

edited to add- (Going to bed late) is a good way to manage it when it gets PAST the point that you can't get to sleep with it. In the limited research so far, it shows that in the evening as we are readying for sleep, we have NO dopamine, when non-RLSers do. We get an influx of it starting in the early morning, usually around 2-4 AM. By 7 or 8 AM, we have much, much more than we need. During the day, that continues to fall, until at night, we have none again. It's not that we don't have dopamine - we just have it at the wrong times.

I would assume that, as with all things, this is the 'norm' and that there are going to be people who experience it differently. From everything I've read, my family has the most classic RLS possible. And, based on this research, that continues to apply. My best sleep has always been between 5 or 6 AM and 11 AM. If I could only sleep then, I would do pretty well. This matches up to the research almost exactly.

But, there are probably many other ways that this dopamine delivery system could be compromised. We already know that anything that compromises iron will cause RLS: pregnancy, anemia, uremia, etc. And we know that spinal injuries and surgery seem to increase RLS. It could be that some of us have the "classic" RLS and others of us have had our dopamine delivery screwed up somehow.

This could account for differences in timing, too. Some people's dopamine delivery could be so altered that they don't get the morning 'rush' that the some do. Those people might get RLS at different times.

Then again, what do I know ! Just seems sort of logical.

It took me a long time to get to it, but my only point at this time is that we know so little, that we don't know if we are all part of the same kettle of fish (as the saying goes). There could end up being 2, 3, 4 or more ways to get RLS and each of them would have a some key differences, like time of day that it bothers you or whether you could go to sleep with it. Doesn't mean that yours is an exception. Just a different way of experiencing it. And in some ways, yours and mine was the same for many years - I managed mine just similarly to the way you managed yours.

Ann

[Guest]

Thanks Corrie and Ann,

Being on drugs does change things and allow you to stop micro managing all the things that affect RLS.

Another post it note going up on the mirror for reflection!

After five months may I be able to - more consistently - go with the flow! Love Hazel

******Positive Thoughts********

[Guest]

Ann--

I'm not sure that I agree that there's any consensus on what "classic RLS" is if you compare the symptom list you usually quote and the researchers' "golden sleep hours" you mentioned in this discussion. But I don't want to get into a stat-match with you. I don't think it serves any purpose when the stories of respected and credible members of this forum CLEARLY show that it's not just mild or moderate RLSers that follow the symptom list but do not conform to the the researcher's "best" hours pattern. If you listen to what people are saying about THEIR symptoms and THEIR patterns, there are a COUPLE of basic patterns that seem to run the gamut of RLS duration and severity.

When I'm your age, if I end up with your level of RLS, maybe I'll be like you and my RLS pattern will change completely. But I think it's just as likely, from the personal experiences I've heard the last couple years on this forum and from RLS sufferers I know personally, that I might follow some other pattern. I also believe that researchers may well broaden their theories of some of these issues, the more they learn from actual sufferers. But it's a moot point.

I think that it's interesting, however, that you chose the term "micro-managing". Although I understand Hazel's reference to the resumption of "normal" life that medications have given her (hooray, Hazel!!! ), your choice of terminology reminded me all too much of the patronizing "doctor knows best" attitude that I've heard many hear comment on in their search for answers, support and relief. You're right, we don't know enough to know just how many different "presentations" of RLS we might be trying to decipher within this "syndrome". But that very fact seems as though it ought to behoove us to treat one another and our differences with greater respect and understanding.

I've been around and I'm pretty sure I got your point. However, I have to wonder if we need to think not only of our own egos here but of what the purpose of this forum is--- especially (IMO) for the MANY people who read but do not post. Based on the reactions some of our most severe members have received at doctors' officees, I'm willing to bet that the "average" 8%-of-the-population who are suffering from RLS are probably more likely to be at a level where they could truly benefit from hearing a wide range of options and strategies. I wouldn't call the strategy I mentioned " micro-managing"... and I doubt that Jan would either, since obviously, meds don't change "everything" for everyone, since Jan has just quite clearly explained how, despite her severe and long-term case of RLS, her decisions about bedtime do INDEED improve her quality of life.

At whatEVER level our particular condition, it seems only common sense that we would do whatever we can to maximize that quality. When I first came to this forum with rapidly-worsening RLS a couple of years ago, I fully expected that as my condition progressed, I'd be likely to be up late as many here were--- and I resigned myself to the life changes that that would be likely to cause me if that was what it came down to. It's turned out, however, that I and others here clearly do NOT need to stay up late to get better sleep. It's also clear that quite a number of us are NOT able to sleep (better or even at all) during the researchers' "golden hours". If this is true for a variety of members here with a variety of symptom severity and/or medical care, it seems logical to me that there are likely others who have heard the "experts" advise later bedtimes, but who might benefit more from early ones.

So as much as Corrie's absolutely right, we SHOULD be willing to try the experts' suggestion for late bedtimes, surely there's equal validity ( based on the experiences of our own members) to a suggestion of early bedtimes as well. And surely anyone who it doesn't work for can make the decision to ignore that discussion.

A forum like this shouldn't end up being some perverse contest about whose condition is the worst or least , who has the most "classic" symptoms, or even whose symptoms most match our own individual presentation of the condition in question. It ought to be about providing the greatest amount of information, help and support to the greatest number of our fellow sufferers-- IF indeed our reason for participating here is solely to be a benefit to the RLS community.

Sara

[ViewsAskew]

Wow, I must need to bone up on my communication skills! Going by your response, it seems to me that you have interpreted my post very differently from how I meant it.

Sara, I've rewritten this post several times. I truly am confused by your previous post. What is your intent? I started to explain what I meant, but I'm not sure what purpose that has, nor if it's what you are looking for. If you would like to hear what I meant, let me know and I will PM you.

If you are uncomfortable with this post, or any other of my posts, please continue to say so. Or ignore them as it suits you. I hope you continue to stay and post, however. I know I have always valued your input, your clear thoughts, and your perspective.

Ann

[Walking After Midnight]

I have to be at work at 6 AM and I live close so I usually set the alarm for 5, but I rarely get to sleep before midnight. Not that I thought everyone was dying to know my sleeping habits, but it makes me wonder everytime I read, or hear a Dr. or health advocate on sleep. I've never been able to get to sleep early and on weekends, my body will wake me up after 5 or 6 hrs of sleep.
My Mom is the same way. I've never known her to get more than 4 or 5 hours of sleep every night, and at 68 she is one of the busiest women I've ever seen...at any age.
Is it possible that people are put together differently? I've heard it said that no matter who you are, you need 8 hours of sleep every night. I can't imagine that. I would feel like I was missing everything, like I was sleeping my life away.
Not to turn the Thread in a new direction, but I'd be interested in hearing thoughts about this.
Also, my RLS usually but not always starts the moment I relax. Just like Ann said. No matter if I'm in the Lazy Boy watching TV or talking to my wife, or in bed. So I can't see where bedtime would affect it.
Another thing Ann, you said you used to "hold a stretch". That's so familiar because that is the first thing I learned to do to ease the sensation...stretch.

Randy