I don’t know why I bother going to bed anymore, I go I get up, I go again I get up, it’s goes on all night. Perhaps I should live in a bungalow, save the time going up and downstairs!
I can’t live like this anymore, it drives me crazy not being able to sleep or rest. My brain is saying “ enough is enough, I’m too tired”.
This is not life, it’s a cruel existence and I have had so many years robbed from me because of it. I find it pointless making plans anymore as I know it’s unlikely I will feel like doing anything after yet another night without sleep.
I’m sorry to sound so negative but I feel really low right now. Each night as I climb the stairs I think “okay, perhaps tonight I will enjoy a lovely sleep” but who am I kidding, I know within a short while I will be pacing the floor again.
I know you’re all in the same boat and I don’t expect any words of wisdom, just needed to express how I feel right now as a distraction from the bully known as RLS.
Sometimes not always can I sleep during day. I can go days/ nights without any sleep then exhaustion sets in and I will fall asleep during the day. I am writing this now and having to kneel on the floor to keep my legs from twitching. I have had no rest at all last night so plan to try and sleep today but I find it really hard to sleep during the day and it means I miss out on normal life.
Hi, No it’s not guilt that’s prevents me from sleeping during the day, I haven’t done anything to be guilty about as far as I am aware! I just find that once I am over tired from many continuous sleepless nights I go past the point of being able to nod off.
My RLS symptoms (legs twitching and jerking, sometimes arms too and my back also if it’s a particularly bad flare up) occur on average between early evening (6 pm approx) and early morning (till approx 8 to 9 am). It’s the tiredness from this that causes me issues in the day time.
When I HAVE had RLS symptoms during the daytime it’s because I have been going through augmentation from meds, which I had to come off ( this occurs with lots of RLS sufferers on certain meds like Ropinerole and Pramipexole).
I hope you are going to see your doctor/neurologist to confirm a diagnosis then you can start appropriate treatment.
I know it’s really depressing living like this, but as you can see, their are loads of other people (like me) who are having to do it. You just have to keep going and try to adjust your circumstances to cope. I used to work in a stressful office environment but had to leave as I was struggling to work to the level the job required. So I guess now in a way at least I am able to try and rest whenever I need to. 🤗
I'm sorry I didn't mean you have anything to be guilty of. I said it because it sounded like you felt bad for missing out on day time things. I apologise again. It's so hard to communicate the right things
Please don’t be sorry, it’s fine, I know you didn’t mean anything by it. Please don’t worry, I am not offended. I understand now what you were saying. Thank you for being considerate enough to respond.
👱♀️🤗
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I note you've stopped taking any DA because of augmentation.
Have you tried gabapentin or pregabalin or a short course of Clonazepam.or Zopiclone?
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Yes I am now taking Clonazepam, haven’t tried gabapentin or pregabalin but see doctor next week so I hope to move onto something suitable.
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Gabapentin may work. I know someone who’s taking it for cancer pain and it’s working a treat. So it’s got a bit of a kick to it . I’ve just started taking it over the last few days and I’ve slept reasonably well.
Can’t you get an emergency same day appointment with your GP tomorrow, and give it a try. It may just do the trick.
If they won’t give you an appointment, just mention the suicidal thoughts , you’ll get an appointment then believe me.
As Jools says, DA stands for dopamine agonist. This is a class of drugs that were the first to be specifically used for treating RLS and can be used for Parkinson's disease as well.
There are quite a few of them, but the main one's now used are the three Jools identifies.
Sorry to hear you're going through this. You really do have my sympathy. I believe there's lots of people who've gone through or are going through the same experience.
I've been there myself several times. Sleep deprivation is so physically and emotionally exhausting and can lead to feeling desparate, I know.
If it's any help, I believe that insomnia is worse in the winter months, possibly even if you don't have RLS. Without giving any detail there is some factual basis for this and it is to do with the long nights and dark days.
It might not seem so, but it's good news that yet again, we're past the winter solstice and we can get more light, more of the day.
I could do, but I won't launch into long winded solutions you could try. I don't know what you have already tried.
As someone who does suffer chronic insomnia I can only offer you some hope in that I believe you can find a way through this dark period and find some measure of relief.
It's difficult, but it's better not to struggle with this, struggling makes it worse.
Oh dear, I really feel your anguish and wish there was something positive I could say to cheer you up. My RLS symptoms are still being investigated so I have some idea of your continuing nightmare! Thankfully, new products are continually being found so lets hope that 2020 will bring us all good news. Best wishes, Chrys
Hi, the good news is that if a diagnosis of RLS is confirmed for you then there is effective treatment, and other options available.
Iron supplementation is a good option if your ferritin level is below 100 mcg/L.
If you are offered a medication, I strongly suggest you look into the pros and cons of what's offered before starting. You ought to know the risks of whatever the options you're given are.
Hi CrazyLadyLegs, don't feel bad for venting or being negative. We are all in the same boat, that's what this blog is for, venting and helpful tips. I feel for you, wish I could offer some advice but I've pretty much tried everything to no avail, so not much help to you. It is 2:30 am and I have to get up at 6 am for work. I went to bed twice and now I'm up again. It's such a pleasant thing to deal with. People just don't understand the awfulness of this monster. I hope you find relief soon and I hope you get some much needed sleep. Good luck and vent anytime, it helps.
I know exactly how you feel. I feel it's like a curse as just when you need to rest, off they go! I'm so sorry for you that they are so bad at the moment.
I have had RLS or I call it jumpy legs since I was about 18, 56 now. Mum had it, Nan had it but much milder forms than mine.
Thanks to this forum, I am beginning to see some future which involves sleep!
Like you, I did the DA thing and suffered horrible augmentation. However now, I'm off my ropinirole and started gabapentin in December. My GP was fairly easily persuaded to prescribe this, and to check my ferritin levels, which I realise is not that usual reading other people's experiences! I armed myself with the nice guidelines, and a screen shot of a Minerva post re ferritin levels (much thanks for that).
The gabapentin is working, I'm on 600mg so far and my jumpy legs in the evenings are much reduced. I still have them and in the first part of the night, but from about 4 to 10am I dont have any jumpy legs. Which is miraculous. I need to try to get the dose, timings right as i am very sedated and struggle to wake up which wont do when I need to get up for work. You also need an understanding partner as it makes me snore terribly.
So......I'm really pleased you've got a Gp appt coming up. We all know that we are all different, but I hope you find some hope fulness in my story and that gabapentin, or these type of drugs, may help you.
its ok to rant in my personal opinion everyone or most people need at least 8 hours sleep. Not getting that is enough to drive anyone mad
I sometimes find that falling short of falling asleep in my bed i go downstairs & sit on my couch & sometimes find myself dropping off but not for long
I do feel for you because i have epilepsy & need to have 8 or mor&e hours of sleep
When I first started with my RLS symptoms, I can remember trying to sleep while leaning against a wall, as I only found relief when I could be standing. That was about 25 years ago. For most of those years since, I was fortunate to find relief with Requip (ropinirole) and am still on it though now at 3mg. I was starting to get symptoms during the day (probably augmentation) when I discovered compression socks. I wear them during the day and have found my RLS symptoms during the day to stop. The relief seems to carry over into the night (I remove the socks at night as recommended). I also got some orthotics as I have high arches and related foot pain. I have found over the years that as my foot discomfort increases so does my RLS symptoms. I also have found that the symptoms increase when I drink beer (probably the alcohol) and caffeinated beverages. Also, for me, pizza (I sometimes decide it is worth the aggravation) and refined sugar are triggers and I love candy, cake, cookies...all the sweet stuff. Probably somewhat related, but I have also read that people who are overweight are more prone to RLS, and I do struggle with weight. I do hope that you find an answer, as we are all looking for that solution to what is a horrible disease. Let us know your progress, as this website is a terrific resource for suggestions and encouragement.
Bless your heart..... I totally understand everything you said! It is MISERABLE and HORRIBLE and ANNOYING and EXHAUSTING and many other adjectives I haven’t used! I have suffered with this for most of my adult life...... even before it had a name. We just called it “ nervous legs”. Finally , I got some relief with Pramipexole which I still take. But I wanted to share my latest treatment as it has brought some relief! My back has been hurting and my pain Dr said that I had spinal stenosis which had worsened over the years due to S curve Scoliosis. I asked him if my RLS could be connected some way because I could not sleep, could not sit in a car,could not lie down, walked the floor etc, He said that he thought the symptoms of RLS could be related , in part,to my back. I received Cortisone injections directly into the nerves he determined on Dec 20. I have had wonderful relief for my back and my legs! I have not needed any pain meds, I can sleep, lie down, sit in the car and am 100% better. I said all that as a suggestion for you to possibly get the same relief!!
I have found relief with THC at night. Ive tried several types, best so far is a large cookie i take a single bite and within an hour I am asleep. Its been very hard, this helps.
Vent away. It’s a great place, filled with folks who truly understand and never tire of lending an ear. Between the lot of us many things have been tried and then shared so there is always a bit of hope to be found which helps too.
I will put in my bit, understanding we are all different in what helps. Homeopathy. I live in the States but have been seeing a homeopath from the UK and she has helped my RL/insomnia issues greatly. It has not been a linear improvement but I am better and no bad side effects! She is also helping with some issues from previous breast cancer surgery and I am amazed.
The problem now is the FDA is trying to outlaw the medicines. They want us all on pharmaceuticals, paying big bucks, and dependent. That’s my rant!
i sympathise big time. mine is like that at the moment. i’ve tried doing time 10 mins at 3to 3.5 mls p he that would give me relief for an hour anyway. now that’s not working. i have to go outside for a walk that always gives relief for at least an hour
I am trying to stay away totally from triggers ie choc red wine beer flavour enhancer preservatives. all processed foods white bread etc
It is hell. All I can say is that over the years my symptoms have lessened considerably. I’ve found that mindfulness training has helped but you’re right, it’s a thankless struggle and a real pain in the butt.
Have you asked your dr about opioids ? I’ve found nothing works but then my friend had some left over percocets from an injury and she gave me 2 , I took one at bed time and my legs just payed calm.. all night I slept.Now I know you shouldn’t take other people’s medication, but when your desperate your desperate. Drs don’t like to perscribe them because they’re addictive , but when taken reasonably I believe they are your answer.Just a thought , hang in there
I feel for you as you sound very like me. I can't walk for long as my RLS stems from many years of Peripheral Neuropathy, but I find I have to get up and do something to take my mind off my misery (sort of). Then I can eventually go back to bed and settle down. Even though I am retired I am unable to sleep during the day but at least I will get maybe 4 hours on the occasional good night. I am about to transition from pregabalin (which I've been taking for years) to gabapentin, under the guidance of my GP since I don't have access to a neurologist, but I'm not optimistic frankly. All I can suggest is that you hang in there and try not to make it worse by stressing too much. Easy to say I know - sorry!
Hi feet grind, yes I am expecting my doctor to move me onto Gabapentin Enacarbil which I understand doesn’t present with the issue of augmentation. If that fails to work I hope to try Targinact but Neurologist would have to authorise that I think.
I was up all night Thursday then finally fell asleep on the sofa around 8 the following morning and had about 3 hours sleep so felt a bit brighter for the rest of the day.
However I started jumping and twitching around 5pm yesterday, sensations very strong in my back and arms too. I have tried going to bed but had to get up as I am in constant motion and accidentally smacked hubby in the ribs with my elbow jumping out, so have come downstairs again for both our sakes!
I no longer am employed so in a sense that does make things slightly easier as I can try and rest during the day. It was murder when I was working, and driving to the office.
Like you, I have to do something to distract myself from the attacks and it does help, but as soon as I try to rest or sleep, the gremlin tremors come back and attack!
I try not to stress about it but as you said, it’s not easy. I just want to enjoy life but everything seems so hard right now and I just don’t see an end to it. This has gone on for about 15 years now but really ramped up in the last 7 years or so.
Even a few hours sleep does seem to help but I agree that it does grind you down. My husband gave up trying to sleep in the same bed years ago - poor thing. Don't try lying down until you feel ready - it always seems to make it worse. Even if you get comfortable it starts up again when you move which is awful for a restless soul like myself. There are some stretches you could try which might help a bit. All the best and vent as much as you need!
Hi Crazy Lady, I think you are getting so stressed when its bed time, your thinking of another night with no sleep, and your bed is not a place you want to go. Going to bed in this frame of mind feeling so stressed is getting you ready for another nasty night. I stopped this feeling by using an mp3 player with an audiobook and a story, at least if your not sleeping, you have something to listen to, after a few nights I found I was falling asleep, and now I use it to get to sleep, I can be gone in ten mins. Also you need to drink plenty of water in the day, it will help stop you being restless. Hope this might help.
The reason I ask if you have RLS is that RLS is a physical illness affecting the brain, the part that controls movements and it’s not just a case of mind over matter to control it. It isn’t controlled in the same way as insomnia, it’s not that RLS sufferers can’t sleep, it’s that we can’t remain still enough to sleep.
It’s not really an illness that can be controlled with relaxation techniques. Obviously these help a little but are not capable of stopping the involuntary movements that RLS sufferers experience.
Thank you so much for your kind words.
Hi Whitedove, I noticed that you suffer from insomnia, do you have RLS too?
Yes, I have suffered from restless leg syndrome since I first got pregnant , if I can t get to sleep, it then sets it off, I have to then get up or it will go all night, taking the stress of thinking about a bad night away has made all the difference getting to sleep, I have never taken any meds for it , It will affect me every night if I can't get to sleep, I can get it watching tv, I go and sort the dishes out, I still get the odd night when I have no sleep at all, but my sleep and rls have improved , I can t say they are a problem now, I am keeping them under control.
That’s great your are able to control your symptoms. I have tried everything from hot baths, cold baths, reading, listening to music, magnesium supplements, other vitamins, CBD drops, tens machine, massage, exercise, eliminating alcohol and caffeine etc....
Sadly I have severe RLS. which once it starts, (most evenings when relaxing), will not stop unless I make myself active, then as soon as I rest again, it returns.
Yes I do get stressed thinking about going to bed, but as yet have found nothing to eliminate that stress because I know that once I get that first twitch, that’s it, my night is planned.
So I do the ironing, clean the cupboards, read, knit, chat to my fellow twitchers, whatever I can do quietly so as to not disturb my hubby.
Eventually (mid morning) my brain decides (due to circadian rhythms) that I now can stay still so sleep will then come, for a short time. But as I have to try and live some sort of normal life, I can’t allow myself to sleep all day.
I have been on several medications prescribed by my doctor or recommended by a neurologist, all with some temporary success. Hopefully I will be starting some news meds soon. I struggle with the meds but would find it impossible without them.
No I am not addicted, but like most severe RLS patients, could not manage without meds to calm down the involuntary movements RLS inflicts on me every night.
I guess what I’m trying to say is that RLS comes in many levels of extreme. It is a condition that is incurable and gets worse with age. I did find my symptoms were better when I was younger but have increased with age.
Personally I feel I have been willing to try most things to ease my symptoms but I know this is something that will dominate my life for good. I accept that but it gets me down a lot. I am fortunate in having a very understanding husband who supports me any way he can, despite his own health issues.
Thank you for communicating with me, it’s good to know that at times people can find a way through RLS. It gives the rest of us hope.
Have you looked at your diet? Have you been checked for SIBO or some other bacterial or fungal overgrowth? Have you had your ammonia levels checked? Have you had your blood lipids checked? Or blood sugars? Or your potassium levels?
All of these and more can cause RLS.
Have you tried selenium? It's been shown in a study to reduce RLS.
Have you tried folate or B12?
While I totally understand the desperation that one feels to find a pill/drug that will stop the symptoms, that's all it will do -- stop the SYMPTOMS, and only temporarily at that. It won't address the cause or causes of one's RLS.
I first suffered from rls when I had my first baby at 27, the sleep problem Ive had since childhood, but once the baby was born the rls was a lot better, so Im thinking it has something to do with too much weight, so losing a few 1bs will help. I was wondering when you first started with rls, has it got worst, you've certainly had a good go at trying to eliminate it. Reading about the medications people are taking seem to work for a while, then find it stops working and your symptoms are a lot worse, but I think it is connected to stress, going through what your going through every day is very stressful, very hard to cope with.
Yes it’s a known fact that RLS often occurs during pregnancy, also can occur after a major operation. But in these circumstances it nearly always improves once the baby is born or operation recovered from.
I have suffered from RLS since my late 30’s but in the last ten years it has become more significant. In the last 5 years it has really ramped up a gear, so it follows the pattern of getting worse with age.
I do get stressed easily as I also suffer with OCD. I find the two conditions (RLS & OCD) feed off each other. Hence if my OCD is bad, then my RLS becomes worse, and when my RLS is bad then my OCD is also worse. I just can’t win.
Hopefully once I have new meds I will see an improvement with both conditions. It is an awful condition that rules many lives, and I agree with another persons comments on here (GuitarBear) that it’s something we have to learn to adjust to and live with sadly.
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Positive Update 
Dreadful nights
Had enough
I'M NOT SPEAKING TO ANYONE ANYMORE IS WHAT I MEANT TO SAY
Waking up with RLS (need advice—taking pregabalin)
