Restless Legs Syndrome
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Blowing one's top

After an afternoon and evening working in the garden, I sat down for a nice read, and my legs couldn't stop fidgeting and I couldn't stop shaking my legs until I went to bed at around half past 11. Got to sleep about half past midnight, woke up at 2 a.m. and spent the next 3-4 hours with leg cramps alternating with my form of restless legs. I had to get out of bed to deal with the cramps, but could hardly stand up because of lumbago, and couldn't bend down to fit my slippers on because bending my legs renewed the cramping. I tried soothing the rls symptoms with my massage device, but to no real effect. Finally, at about 5 a.m. I made myself a couple of open sandwiches (cheese and cucumber - lovely), and after clearing out all the crumbs in the bed, manage to get to sleep, and overslept until 10 a.m.

At some point during all this, I seriously starting thinking about throwing in the towel, it's just not worth it. Feel much better this morning however.

Just wanted to let of some steam.

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I’m glad you got that out! It’s important to let off steam.

So sorry to hear of the bad night, and so glad that you’re feeling better this morning! Here’s to hoping you have a better night tonight!

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Dear Jess3648, thanks for words of encouragement, Last night was a bit better, but not much. I'm trying a no-coffee in the evening regime, so we'll see if that helps.

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😀

I hope the new regime helps! This syndrome is more than frustrating, isn’t it? I had a bad night last night, finally falling asleep once the sun came up. I was thinking about a lot last night (stressed), so that could be it. But I’ve also been stressed on good nights. I had a chocolate bar 2 evenings ago and had a great night. I didn’t have one last night, so maybe (for me) there is a connection between needing something with caffeine and having a good night. But that theory has been disproven as well. So frustrating!

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You may have a point there about the caffeine and chocolate. The think is, it's so difficult to point to something one has done differently once or twice, and connect it to an experience of less rls and less sleeplessness. There may be a connection, but it may be only temporary and/or tenuous. Since we can't conduct scientific experiments on ourselves - not easily at least - we're never going to be able to explain perceived correlations or outcomes like better sleep. But it is frustrating. I was only awake for about four hours last night, and after getting up, felt sufficiently drowsy to lie down and sleep an hour.

I wouldn't worry too much about what's been proven or not - unless it's something of a very general nature like lack of iron.

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By «disproven», I meant disproven by me, for my experiences.

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Ah, I see.

Chris

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Just had a quick recco of books available from various publishers. Some are of the kind 'I've found a cure and can help you find one too', by probably well-meaning folks, but all anecdotal. One has more than 80 remedies to try out!

Anyway, I ordered one which looks at least scientific, so we'll see what it says. It's called Restless Legs Syndrome and it's by K. Ray Chaudhuri; C. Warren Olanow and Per Odin (who sounds Scandinavian). It's pretty ancient though, from 2004. May get some leads from it, nevertheless.

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From recent posts, it appears that over exercise leads to rls in some people. I find the opposite - I sleep much better when I knacker myself.

You mention your particular brand of rls- would you like to elaborate on that and give us some information on your medication regime. Do you keep a diary of bodily inputs?

Cramps are horrible to experience - may be a sign of low salt or magnesium? ? Both of which are connected to rls symptoms.

I hope you are able to get this sorted and get a better quality of life soon.

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Hi Madlegs1, I've described my symptoms at some length in previous posts. I haven't got time today to go through them all. I'll see if I can find time during the weekend. Rls seems to present itself not only differently between people, but in the same person at different times.

The strange thing is that rls seems to come and go in bouts. I don't keep a diary, but it seems like anything from a week to a month with symptoms, and a week to a month without. My life style is the same throughout. I generally walk about 50 minutes three or four times a week, but there's been less of that this winter because of the enormous amounts of snow we've been having in Norway. And gardening is an activity I really like. Chucking 40-50kg bags of soil and compost around helps get rid of the puppy fat I tend to lay on in the winter months.

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I can relate to throwing in the towel, but please don't do that. I have been fighting this for 50+ yrs. Within the last 3-4 months my RSL has become so unbearable my life has become walk (and cry, curse the gods, pray for relief) all night, sleep all day. Some times my symptoms occur just as badly during the day. So I go 36+ hrs at times without sleep. I think this is probably what hell might be. Went to a new dr yesterday and he change meds, increased some, discarded some. I did sleep last night starting about 3 AM. Awoke at 11:30 AM. I feel so drugged I can hardly think (may be why this post makes no sense). So hang in there, just keep looking for the Dr. thats a good fit for you, and hopefully you will emerge from this horrible tunnel to a brighter day.

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Hi Keitha,

I usually comfort myself by reminding myself that other people are in a worse situation than I. (I've always felt that's a bit of a perverse argument. Feels like gloating at people whose lives are harder than one's own.)

I'm not a very suicidal type, though I fully sympathize with fellow rls sufferers who can't see any other way out or relief.

At my age - 71 - one tends to look at life more as an accidental occurrence, an aberration really, in a vast period before and a vast period afterwards of not being alive.

To tell you the honest, I've never really spoken to my GP about restless legs, mainly because I've read so many posts here of people having all sorts of problems from medications of various types. You sometimes get the impression that the cure (or treatment of symptoms) can be worse than the underlying ailment.

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I'm not the suicidal type either, except when I have been walking the floor for two straight days, and have had no sleep for 48 hrs. That will put all sort of thoughts in your head. I have found that most GPs know squat about RLS. Find you a certified sleep specialist and make sure he hears what you have to say. I had a IM tell me after I augmented and began to have severe cramps from my upper thighs to my toes, that I needed to drink more water. That's it, just drink more water.

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During my worst nights I often have multiple baths. Don't know what it's doing to the fuel bill but it works for a short time and allows me to get some sleep before it all wakes me up again. Walking about makes no difference to the 'switching off' the RLS needs. Puzzles sometimes work but often these days I'm too tired to concentrate. During one of these wake ups I allow myself to take 30mg codeine but only once so I need to try to work out the best time which is different every night.

It's all a total pain isn't it? I also look forward to a spell of peaceful sleep say after lunch

( retired, no good for those in work ) as long as I haven't overdone the necessary a.m coffee. never take that after say 11am.

Never have a a good spell - well I did for a few weeks after a recent series of viruses but only to the extent I'd wake only say a couple of times.

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I remember recovering from a nasty bout of the flu some years ago, and not being able to sleep a wink for two nights running. Don't think it had anything to do with rls, but it goes to show that the body lives its own life, and enjoys playing us for suckers as it does so.

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This is a fascinating thread, spilling over as it does into the realms of philosophy - as has been the case with other threads started by Pluto. I was at a talk last night at which the key speaker was a young man who was a talented sportsman and an international hockey player. At the age of about 24 he attended a podiatrist because he was experiencing a pain in his foot. Within a fortnight his leg had been amputated below the knee to avoid the spread of a very unusual cancerous growth. He was walking up and down as he delivered the speech and at the end he showed us his prosthetic leg. His take was although we can't control the cards life deals us we can decide how we play them.

My rls has taken me to very dark places, the sort that Pluto alludes to. It has also introduced me to sides of my personality that I don't think I would have accessed otherwise - I now know how I would perform under torture thanks to the experience of withdrawing from pramipexole. It has caused me to experiment with all sorts of drugs - prescription, non-prescription, legal and non-legal. It has caused me to fall asleep in an intimate board room in the presence of some of the top businessmen and lawyers of my country and to find the strength to deal with the indignity of that. It has allowed me to accept the support and kindness of my children - a reversal of the role I had imagined in my relationship with them.

I have become an expert in my own condition and I know a lot about the drugs that are used to treat it. I almost enjoy observing my constantly shifting treatment regime and I cannot quite shake off the feeling that the optimal system is just around the corner (which truly is the triumph of hope over experience). I admire you people who refrain from using treatment drugs but I would find my life with rls intolerable without them - not only because of the relief they afford me but because of the hope they offer.

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For me I think the use of drugs, illegal or otherwise is a direct indicater of the severity of the symptoms. X

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You are absolutely right. I'm not a recreational drug user, I don't smoke and I rarely have a drink. I had never even heard of kratom until I came off pramipexole and went through 3+ months of hell when I was pretty much cut adrift by my sleep consultant. The medical options - even if you are lucky enough to have a GP/consultant who is prepared to prescribe them - are really stark and the condition itself so akin to torture that it is hard not to look at every alternative.

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Yup,tbh I would have taken anything, heroin anything at some points, people can judge but I think some lucky people haven't been to some really bad places xxx

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Curious - the association of leg cramps with RLS. My RLS started with a series of nighttime leg cramps for a couple of weeks prior to full on RLS. RLS is neurological. I'm beginning to think that mineral/ion imbalances can tip the balance to the biochemistry of RLS - Dopamine and Iron dysregulation in the brain. BTW I handle leg cramps with sea salt (1/4 tsp) and Cream of Tartar (1/4 tsp- for potassium) mix with juice.

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Yes, I'm wondering about a connection to some form of anemia.

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Just wondering, if you take your cramp mixture every day / night, or after the cramps have started? Cream of Tartar, is it the same more or less of baking powder?

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I take it every day if I feel cramps coming on - or maybe every other day. ( I have it handy if cramps develope in the night). I drink 1/4 tsp sea salt in 20 oz of water every day - sipping during the day. Cream of Tartar is a product of the wine industry - not the same as baking powder at all. It is potassium taurate and contains about 500mg of potassium per tsp - so maybe 125mg per 1/4 tsp. This is also called "Adrenal Cocktail" and you can purchase it as such from Jigsaw Health. gotmag.org/the-adrenal-cock...

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We can get very dark thoughts in the night. I have decided that I am 2 different people - the night-time RLS sufferer and the fit and happy day-time person. I try to avoid thinking about night-time during the day and enjoy life to the full (no, not including chocolate!).

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i don't think about the nights either during day time, except to look forward to a nice sleep which is how things used to be before rls if ever felt so tired - I used to sometimes work shifts of more than 30 hrs at a stretch in the 'good old days' of the nhs pre 111 - I always just expect I'll sleep the next night. hard to enjoy life to the full when exhausted though.

one thing of many which puzzles me - some of the criteria for rls i've read say you should have hyperarousal and not day time sleepiness despite such poor sleep. you have to be joking as far as i'm concerned. one of the things which makes it so hard to live with is not just getting through the nights but living with the exhaustion due to sleep deprivation. it wouldn't be nearly so hard if it was just the nights. then i could live life to the full.

what do most of you experience day time?

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I used to work in the Norwegian national health service, although it's organized slightly differently from the UK nhs (don't ask me for details!), and on occasion had to work double, even triple shifts - about 36 hours all told. Towards the end of these mammoth shifts, my mind felt as if it hovered over a plateau, in a 'cloud of unknowing', where my faculties kept on working, but where the distance between mind and reality seemed to grow wider and wider. Not an unpleasant sensation at all.

What I feel about sleep deprivation is that people should be allowed to take (be prescribed) a really powerful drug that knocked them out for a whole night - or two - just to catch up on rest, even if it had no effect on rls symptoms. There must be drugs out there which would do the trick.

Chris

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Alison, I recognise the exhaustion. But that is different from sleepiness. Hoe is that with you? Do you tend to fall asleep during the day owing to the exhaustion? Or would you like to sleep, but find you can’t? I have the latter. People with e.g. apnea tend to have the former.

Be aware though, several medicines (gabapentin and/or tramadol in my experience) have daytime tiredness as a side effect, which may mask the purely RLS effect.

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I could easily fall asleep during the day, as long as I haven't had any coffee too recently. I honestly don't think I have sleep apnoea though. I just wake up so often during the night that I'm very sleep deprived. Sleeping during the day helps so I can catch up on at least some sleep so function better. I'm not on any sleepy making tabs either, apart from 1 x 30mg codeine once during the night which has a short period of action and will have worn off day time. I'm just in need of sleep I think! I had no idea that some folk with RLS don't feel tired when they can't sleep. It would feel to me 1000 times easier to deal with if I felt fine day time and was amazed when I found recently that hyperarousal was one of the recognised features of RLS. Perhaps it's due to the fact that sleep deprivation is a major stress so stress hormones kick in eg cortisol which has the effect of being able to keep awake when necessary, prevent release of melatonin etc - I presume this must happen in conflict and danger zones and from prehistoric times to help the person still be able to deal with the danger and not be extra vulnerable if sleeping?

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I have wondered about hyper alerting too as I am usually pretty sleepy during the day and would happily sleep all day.

I do wonder if it has to do with being continuously exhausted from chronic sleep disruption - maybe that overrides the hyper alerting.

I had an experience recently where I had a good run of sleep at night. Then one night when I was awake all night with the legs. The following day I did not feel sleepy at all. I wondered was that the hyper- alerting kicking in and I was able to appreciate it more because (ironically) I was better rested due to the recent history of good sleep.

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Hi Alison, well, remaining wakeful during the day owing to hyperarousal while very tired or exhausted is no fun. I can tell you. I’d rather get some sleep during the day. I am very happy for you that you can and thereby offset a little the lack of nighttime sleep. I know of several others that sleep late, i.e. until well into the day, to offset their nighttime sleeplessness due to rls.

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it's very odd isn't it how there are so many variations of RLS. I sort of imagined that if hyperalert then somehow one wouldn't feel exhausted either as I have this intense sleepiness which gets in the way of being able to do much during the day. even if i try to keep going I am dogged by the horrible sleepy feeling. sounds like i'm very lucky to be able to day time nap. i can also sometimes sleep late say till 9 if not disturbed and the rls has worn off. sounds like your version is even worse then.

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It's very peculiar, all the different ways rls takes not only in different people, but in the same person. It's one thing being a syndrome, but with no well-defined borders, almost anything can be said to be a symptom or expression of rls.

I'm going to study the list of symptoms on the rls-uk.org/diagnosis/ website, just to make sure what I've got is rls. Who knows, it might be something completely different?

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I’m on Gabapentin + Tramadol and I can’t sit down in the afternoon or I fall asleep!

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John, I had that too when I tried higher doses to try to get a better coverage of my rls-symptoms. I have cut back down to 300mg gabapentin and 50mg tramadol.

Actually, I have cut down further. Since a few weeks I have taken LDN; titrated up by 0,25 mg a week. Since I hit the amount of 1mg LDN (last week) I cut down my tramadol to 25mg (by taking it in liquid form). The consequences for my rls and sleep are not too bad. Shall write a more elaborate account in a week of two.

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Hi Lotte, Do you think the ldn is allowing you to cut down on tramadol? I have got up to 2mg but sadly am not (yet) noticing any improvement. If anything legs have been slightly worse. Woe!

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No ID, I don’t think the ldn is allowing me to cut down the tramadol. I simply tried - as impatient as ever. And meanwhile I have upped my tramadol dose again to close to its original dose of 50mg, because my nights were too bad. Now taking the tramadol in liquid form allows me to dose very precisely.

With our fairly (mine) to very (yours) severe rls that hasn’t been under control for quite a while, I get the impression for these types of rls LDN is not a quick and easy fix. The rationale behind it is that it boosts the endorphines and thereby the restorative capacity of the body, which after a while gets very impaired owing to bad nights etc. And maybe that takes time. My prescribing doc advised me to keep taking the ldn at least 6 months, exactly for that same reason. And I am still titrating upwards, with only 0,25mg a week. At this rate no side effects when upping the dose.

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My rls is not worse than yours from how you describe it. In fact mine is behaving so relatively well these days I would describe it is as only moderate. It's just that even moderate rls is a life-wrecker.

I'm glad you posted about the rationale behind ldn and it makes sense that it would take longer for more entrenched cases to resolve. I am not holding my breath. It would be a huge surprise if ldn really did control it but, hey, it's worth a try. Like you I am titrating up slowly and have not had any side effects - am still on 2mg daily. I am planning to stop at 2.5mg as the only study I could find suggested that optimal results for rls were achieved at this rather than higher doses.

I was planning to take it til the end of the Summer but from what you say, maybe I need to take it until Christmas. Best Christmas present ever if it starts to get the legs under control!

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