Jumping, itchy & uncomfortable legs can be a real problem – I'd love to hear from anyone who's experienced this
Hi Sleepmore99, thanks for your kind comments.
I'm not very good on mgs, etc so don't know if it works out the same, but I take one 88 microgram tablet at night.
I've been taking Pramipexole for a long time now, at a rough guess I'd say about six years. I had something prior to this but the name escapes me, so when it was withdrawn it was my GP that said 'you can't go back to how you were before, so we'll try Pramipexole.'
As far as I'm aware there's no limit to how long you can be on it, so I just hope I can continue with it. The other option doesn't bear thinking about!
I can honestly say I've never connected the RLS to my sleep, and think it probably has more to do with my sleeping position. I have Bronchiectasis and if I lie down I can't breathe, so I sleep propped up on pillows and just don't think it's natural. If it's not that then I really don't know, but thank you.
Does anyone experience involuntary muscle spasms in their legs during the night while they are asleep? My wife tells me that my hips, thighs, and calves all spasm during the night and, at times, are so violent, that they cause my legs to jolt, kick, and move around. I know she doesn't want to worry me about how I might be affecting her sleep, but I think I have kicked her in my sleep several times. I have asked neurologists, orthopaedists, myofascial massage specialists, acupuncturists, and the like, and nobody can explain what is happening to me. And, this is only one small problem that I experience to upset my sleep, to boot.
What is Clonazepam, a sleeping pill or antidepressant? Was your RLS bad? Was that the cause of your insomnia? Are you getting good quality and quantity of sleep now?
If the medication works, great!
Sorry to hear of your illness. Are you taking medication for that too? So are you able to sleep on propped up pillows?
Really hope Sleepio will work for you, don't worry, keep calm, have faith and persevere with it.
I am somewhat shocked that the experts you have discussed your experience with have not raised the subject of RESTLESS LEG SYNDROME. I get it in my ARMS too now. I am only a sufferer myself and not a professional expert but your symptoms are like mine and that was the diagnosis I was given but no real help from GP, except drugs which I am resisting. She added that after awhile they won't work which will mean an increase in medication or go back to it being worse than before. It can't be worse, so I'm not even starting on the drugs! I find getting out of bed and pacing up and down helps and also soaking a flannel in cold, colder the better water and HOLDING IT AGAINST THE UNDERSIDE OF EACH KNEE in turn, is the best aid I have found. Give it a try. Good luck.
I developed RLS after a 'waking' night shift, where I was deprived of sleep during the night whilst caring for someone. So I put my RLS down to lack of sleep. I have been a poor sleeper all my life and have accepted it, as I always think I will 'catch up' tomorrow! To have RLS on top of disturbed night's made me feel desperate. On visiting my GP, I was advised to go for LONG walks & no alcohol.
As it happened, after a few years, I put myself on a 'mediterranean diet' (as recommended by Dr Michael Mosley) and the reduction of RLS was immense and my sleep was much improved.
Alas, both come and go as I struggle to stick with the 'diet'.
OMG I never realised so many people suffered with RLS – its so annoying just as I have relaxed in bed.
It's a sleeping pill. I only take 500mcg (0.5mg) per day. Have had very little RLS since taking it so might be worth trying a similar dosage. It's certainly helped with sleep because RLS was a big problem previously.
I see you've joined Sleepio about 1 month before me. How are you doing with sleep? Getting good quality and quantity? Have you managed to come off sleeping pills after doing the Sleepio course, but what about the RLS?
My GP will not presribe sleeping pills. So far this Pramipexole 0.18mg seems to work, I have had almost no RLS. After 3 months, my legs (mostly right leg) are getting some fizzy, achy feeling on a number of evenings. Thank goodness not in bed at night, it would be dreadful if it came back.
I have struggled with this. I wanted to dig into my legs with a fork and twist until the itching stopped! I've found a magnesium supplement very helpful. Specifically one called Mag365. I take it as a hot drink about 1-2hours before bed and have seen a huge improvement. I think magnesium is what our muscles need to relax hence why it works. I still do get RS about once a month or so but it seems to be at the same time every month weirdly.
That's a new one, not heard of your experience. Thanks for your input, I will give it a try.
For me, RLS is the biggest problem not allowing to lie down comfortably thus not able to sleep.
New to Sleepio, first place I have found where people understand RLS. Seems like most others just don't get that there is no controlling RLS when it hits.
I won't do meds but have found that Magnesium – as others have mentioned – helps, though it's almost as if I have to cycle on/off of it or it loses its effectiveness over time. Two other remedies that have helped:
1. Tryptophan, especially in conjunction with the Mag
2. Marijuana Edibles. I slice gummies up into micro-doses (approx. 2mg each?), take one before bedtime. Best remedy yet. I initially tried medical CBD, but it just didn't work and was more expensive. I assume smoking it might work too, but it's never been my thing.
Hi, sounds promising. What does your med diet involve please?
Relating to RLS I use the Homeopathic medicine Hyland's Restful Legs medicine you find over the counter in Walgreens. It is a sublingual pill and I take 2-3 pills at bedtime and keeps my legs quiet all night. I am an 275lb man. I also have an adjustable base bed and by raising the leg portion a few degrees that calms my legs down as well. I just finished week 5 of my sessions.
Hello All, I am new here and just did the first session tonight, I have suffered with restless legs all my life but in the last year or so, it has become so bad that I hardly got any sleep at all. I was prescribed Imipramine (UK) by my GP but decided not to take them as was told I may experience a feeling of being hungover in the morning, plus also not wanting to feel reliant on any medication to get to sleep every night. I take magnesium supplements every day and have done for many months now but I don't feel like this has made a difference. I regularly take Nytol or Kalms, which worked at first but does not work now. After hours of not being able to sleep due to not being able to lie still without my legs tingling, I get up and stand on the very cold floor of my utility room, then I often have a drink of warm milk. Sometimes this works as the sensation of the cold feet sometimes detracts from the sensation in my legs. Nothing ever works for long though and I end up on a loop of solutions. My GP recommended this Sleepio therapy, so I am giving it a go, but wondering if it will help due to the RLS. Sorry – that's a lot of info but just thought I would join in. Always open to hearing people's non-medical solutions or tricks for dealing with RLS. Thanks all.
Hi Restless HP
I'm always interested in posts to this topic because I have had RLS since 12 years old, and it has progressed from my ankles to my hips. It got so bad that I couldn't lie down at all without it moving about and feeling very uncomfortable. I have tried many many methods, (not medication), including massage, chiro, acupuncture, osteopath manipulation, some of them eases it for a while but always come back again. Couple of years ago my GP suggested CBT but their reply was I have to cure the RLS first, then I saw a consultant who ended up recommending a bunch of medication for “parkinsons”, I tried Gabapentin (painkiller), which was strong, helped me to sleep but felt very groggy in the mornings. Some sleepios suggested Magnesium, I have tried that several times but feel no difference. Years ago I read a pamphlet about RLS, which opened my eyes to this subject, so surprised that it is recognized as a common problem, however there is no cure.
Anyway I joined Sleepio in June 2020, when my insomnia meant no sleep at all sometimes, but it's partly because of anxiety and worry issues caused by this pandemic. I did the 8week CBT course and learnt to manage the problem, then it lead me on to Sleepio course. With great determination I followed the sleepio programme strictly, weeks 3 and 4 were the hardest as every sleepio will agree, as we follow SR and QHR (you will learn this in due course). The first thing I noticed a change was when I started to feel sleepy in the evenings, when I haven't felt sleepy at all even with no sleep for a long time. Overall, in my experience, sleepio has taught me to be calm and not worry about not sleeping well as well as maintaining good sleep habits and environment and this has resulted in me being able to get some sleep.
However, RLS is a different matter, it is more of a physical problem, just as some sleepios suffer with chronic pain and needs pain medication regularly. In September 2020, for the first time, I discovered that there were medications for RLS from my GP! On day 1 of taking Pramipexole, there were no signs of RLS at all, and I was able to lie down restfully and sleep, AMAZING! Taking Prami every night for over 5months now, no side effects, BUT from the 3rd month there are some different feelings of RLS appearing sometimes, as long as it does not happen in bed at night, I'm clinging on to it.
This is my experience, I'm happy to discuss this topic with other sleepio sufferers and can exchange ideas. Unfortunately my sleep has been up and down a lot, I have only managed 1 week of good sleep above SE 80% to earn 1 extra 15min, but I'm calm and not worried about it, so keep on going. Every sleepio has different experiences and different results but with one goal in mind, to improve our quality and quantity of sleep!
Sorry for the long post, hope this helps.
Hi Sleepmore, Restless HP, Billshope, Puglove and Starchild!
I don’t have RLS but my MiL used to have it (no longer with us), my OH has it and my daughter used to have it.
Since a couple of you have mentioned the cocktail of drugs and then diet – it hope you don’t mind me butting-in here.
OH won’t change his diet, full stop! His symptoms aren’t as horrendous as his mother’s were or our daughter when it hit a peak at university. She couldn’t keep her legs and arms still and it was distressing; she was prescribed gabapentin and other meds that I can’t remember – but would have still been on some form of them in a milder dose even now but she changed her diet.
First of all she researched gluten and highly processed foods. Then she became full carnivore – eating meat, fish, eggs, (non-highly processed) proper cheese and proper full cream and milk occasionally. Most of her symptoms have gone. I have just phoned her to ask how it’s been over the last couple of years and she said she never gets woken up by RLS anymore. She sleeps through the night – lucky her!
Last year, to get rid of my fibromyalgia symptoms she persuaded me to follow carnivore so I did and am not a huge meat eater, but after two weeks I suddenly realised the pains in my hands had gone…both she and OH noticed I wasn’t going down the stairs one step at a time first thing in the morning….I also lost 3 stone. I stayed carnivore for 6 months from April to October and started allowing ‘bad’ foods back in – especially over Christmas – many of the symptoms are back so I have to be stricter with myself.
I couldn’t have done any of this though, if I hadn’t sorted my sleep out first!
Look up carnivore diets vs the SAD (Standard American Diet) but if it’s too restrictive or you are vegetarian then cut out gluten and vegetable oils…they are a huge player in many of our illnesses.
I am not a doctor – am just going by our family evidence.
Thanks, really appreciate your input. I will certainly look up the carnivore diet, wouldn't have thought about this myself. Strange how that can affect our health.
I have started using Magnesium butter on the bottom of my feet. Since the majority of people are lacking in the Magnesium department, this is what I have found, not only stops RLS, but has stopped my leg cramps as well and helps me fall asleep faster. Much more effective than suppliments.
This sounds like me. My arms and legs. Realy tired go to bed. And within mins my legs want to tap dance. I have tried magnets. Stretching. Walking around. The Dr prescribed anti depressants to help me relax. But didn't work and made me feel very aggressive. I will try cold water like you say . Hope it works. At the mo I only manage about 2 to 3 hrs sleep a night. And not able to nap in day . Just can't switch off.