I've read of sufferers playing the piano and playing drums and thought it would be good to know what others get up to in the night when unable to stay in bed.
I usually prepare breakfast, finish any washing up on the first trip.
Second trip I have been known to do some ironing - definitely scores Brownie points with my wife (with what she has to put up with, l suppose it's the least I can do).
I sometimes watch TV but am now trying to limit each trip to 15 mins so avoid it.
I get out my Pad and catch up on this site.
Trips after 5pm I start snacking as I'm trying to put a little weight on and as I've just restarted Gabapentin I have a good appetite.
I have found that I must accept that I get up a number of times a night and not get too hung up on that. I have got some warm clothing ready to slip on, and something to do to take my mind off the dreaded sensations. It's much better to get up as soon as it wakes me rather than allowing it to build up, to give the RLS long enough to recede and go calmly back to bed. 15 to 30 minutes is usually long enough and now it's 50 minutes so, good night, and do tell us what you get up to!
Sweet dreams,
John
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John_naylor
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What medication are you on-- it really should be effective enough to at least get you some sleep at night. Or perhaps you need to play around with timing-- I have had to do that with Oxycontin.
My first go to in your situation would be to apply magnesium oil to my legs (epsom salts/ water half and half mix) or a bath soak for 20 minutes with a few cupfulls of the ould epsom salts mixed it.
Then a mug of warm milk with cinnamon and honey sipped slowly.
Then I find crosswords and codebreaker/ crosswords are good for keeping the mind occupied - I have apps on the phone for them.
Finally watching tv- sport or documentary - but I prefer to get back to bed and put the radio on low- must be a boring talk show. We have Newstalk here which repeats the previous day programmes at night.
Hope some of that helps.
Short halflife sleeping pills are effective for once in a while necessity - Stilnoct low dose is a good one.
I am very fortunate as I sleep mostly. I have 0.250mg of clonazepam, 2700mg of Gabapentin, 200mg of long lasting Tramadol (in my view very helpful) and 2mg Neupro with the patches changed at about 10.45pm. I agree with Madlegs that if you get the meds’ right you hopefully will get a better night. I am probably over medicated but I am glad the RLS is under control.
I have tried lots of meds’ over the years but my Tramadol has stopped working (possibly augmentation) and I am ramping up Gabapentin again to give Tramadol a rest. I’ll will find a way but just thought it might be a diversion to know what we nightwalkers get up to!
Thanks John. I am,perhaps, a rather smug new boy (albeit 69) as I have only had RLS for two years. Plenty of time, God willing, for me to find out about failing meds!
I’m interested by the fact that some of the people posting are able to sit down and watch TV etc. I have to keep on my feet so clear up the evenings washing up which has been left to drain. (I save all my washing up for the evening because I can’t sit). Another job I save for the middle of the night is ironing.
Having said all that I’m having a run of good nights. Why? The magnesium spray might help but it hasn’t always. Every time I think I’ve found an answer to my rls it doesn’t last so I’m very reluctant to pass on my theories.
I've found that I'm sleeping better since I've tackled my diet. I've found that I'm sensitive to regular cow's milk, which makes me 'dopey' so that I tend to be less active in the day and hence not have the sleep impulse at night. I've also seen an improvement since I reduced my gluten input, though I did that to test digestive effects. Since diet seems to have affected my sleep. I've been experimenting on the effects of diet on rls, as that varies from day to day, and I've recently found that my rls is triggered by high sugar intake. Of course other people might find that other foods are responsible.
Yes I'm afraid I'm exactly the same as you. I get up and do all the things that I haven't done during the day ..... washing, ironing, cleaning, all that fun stuff you know.
The other night I made a new bedhead for the new bed when I move!
When I went through augmentation I would pace, jump up and down, do leg exercises, spend time in the bathroom soaking my legs in warm water, massage restless leg cream and magnesium oil onto my legs, use my heated electric massager, cry, stare off into space, and put my support stockings on. This went on every night for about 8 months. It was tedious and something I never ever want to go through again. I still have my bad nights, but thankfully they aren't anything like the hell of those 8 months.
Hi Jess, remind me what you are taking again? It seems like it’s working well for you. If I can’t sleep, I get up and draw—i’m An artist. I like to draw on my iPad, because it has its own internal light—I keep it low—this allows me to see without having to turn lights on. Drawing is so soothing that it makes me sleepy.
I am on the 4mg Neupro patch. It is a little on the high side, but it works.
Drawing sounds great! What medium do you use when not on the ipad? Also, is there a theme to your drawings? I'm not an artist, but love to go to art galleries.
I like to create rather large meditation paintings--images that emerge from my own meditations. My intention is to envision imaginary landscapes that convey a sense of calm and peacefulness for me when I look at them and for the viewer as well. Images can shift an over active stress response into a relaxation response in a matter of seconds. When I draw on my iPad, I'm working on (I don't like to use the word work) or shall I say playing with images that I might use in my next painting. It is so soothing, within half an hour or so my RLS sensations are usually gone. But by then I often don't want to go back to bed. ☺️
Thank you for asking. It's actually the kind of playfulness on paper or iPad that anyone can do--you don't need so called talent. We are all creators, it's just a matter of knowing how to begin.❤️🎨
Slept! Can’t believe it, didn’t get up at all, 8 hours sleep. Had a lousy evening wandering round and even managed to miss that Dancing thing on TV but I don’t care. Sorry to those who walked, ironed, washed up, knitted etc but I’m so excited.
I usually find getting up, making a hot drink and then sitting down for half an hour to try a crossword. Reading usually makes me more sleepy and I find trying laying on the floor with my legs in the air eases the sensations and the jerks after about 15 minutes. If I can get back to bed I try to relax and think about jobs I need to do the next day and the this makes me sleepy and sometimes helps me get to sleep. Sometimes if lay on my stomach I can ease the jerks etc, but I don't know why. Still, if it does it good, if not then I get up and either try the above with a hot drink, do some bits of cleaning.
Being a member of a local AmDram group I can get desperate if thing don't work and get out the notes about some dancing or singing to rehearse.
But it's interesting to see what others do as it gives me new ideas.
Traum Shon, John.
It's German for Sweet Dreams! I'm not making fun, but hope that all the replies I've seen from everyone have given you some ideas,
I am surprised that so many people can be productive. I used to just walk around the house from 1 am to 6 or 7. I couldnt sit to use a keyboard and I couldnt stand and concentrate to read emails I used to make a cup of tea and a biscuit and that helped a bit.
I remember a strange sensation which I dont know if others have experienced. On some occasions I felt a wave pass over me from my feet up to the top of my head. It was like a relaxation wave that took about 15 seconds and the RLS was gone. I knew that I could go to bed and sleep until work called.
It might have been an hallucination caused by tiredness but it signaled that the nights battle was over. I used to have other hallucinations as well. While I was walking I often saw spiders 300mm across crawling over the furniture and running along the walls. I wasn't scared by them because I was awake and I knew that no such things existed around here. It didn't matter how intently I focused on them they didn't disappear. If they ran toward me sometimes but they just never reached me. Really weird stuff that I just assign to exhaustion. I hope they don't come back!
I can have half body rls solidly for 48hr + while not being able to sit or rest at all, even when moving I still have it along involuntary spasms in my arms and legs, it won't even let me sit long enough to wee. The exhaustion is terrible and in those dark hours alone and being driven nearly mad by the sensations I have been very close to calling it a day.
I might play a game on tablet (altho I do try to limit that), often I crochet until I feel sleepy again! My first "go-to" if it is really bad would be a HOT shower concentrating the shower head right on my legs just above my knees!
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What do you do when your medication stops working?
Nightdancer what do you think
Desperate to know what's causing RLS and Night Cramps
That’s what the bad fairies do to you
what do you guys personally take for RLS?
