Pretty certain i have RLS and PLMS. Advice?

Hi guys,

I've been struggling with daytime sleepiness for years now and in the last 6 months, it's gotten so bad to the point where i struggle with anything. The doctors always chalked it up to stress which i always felt wasn't right.

I decided to webcam my sleep 2 nights ago and sure enough, every 20-40 seconds, i move my feet/legs/hips/fingers hundreds of times. Decided to do it again last night with the same results, including one point where my head suddenly jolts and i wake up (although i can't remember this).

This could explain so many of the problems I've been having over the years including irritability and increased anxiety. I'm going to show my GP the footage tomorrow but what is the prognosis for this? I know it's a lifelong condition but I'm only 25. I've read about medications but it seems they wear off after a while.

Any help and advice would be appreciated

29 Replies

  • Hi and welcome! From what you described then I would say no you do not have RLS. RLS only happens when you are awake, you have an irresistible urge to move your legs and you move them voluntarily to try to relieve the awful sensations /pain. What you are describing however is PLMD which happens when you are sleeping and is involuntary movements (it can also more rarely happen when awake too).Many people with PLMD only find out they have it because their bed partners complain of being kicked/hit! Good idea to set up the Web am if you sleep alone.Usually those with PLMD feel tired even after what they think is a good night's sleep as they have been having disturbed sleep so this would explain your tiredness. Unfortunately even some doctors mix up the 2 conditions! A sleep study would be a good idea although they are not done too often in the UK.I have all 3 conditions RLS,PLMDS ( Whilst sleeping ) and PLMDWA (whilst awake ).The Neupro patch takes care of all 3 conditions..The same medications are used for RLS and PLMD .Let us know how you go on.By the way do you take any other meds as some can worsen symptoms? ....Pipps x

  • Hi Pippins. Thank you for your comment. I get during the day a really uncomfortable feeling in my legs as well but i always thought this was anxiety. I get it pretty much all day and it's really annoying as i can never relax and find i always have to try and stretch my legs. I also get what i call 'leg jerks' and sometimes very rarely jerking of my arms during the day. The leg jerks during the day are again, common for me and i thought it was just because i was sleep deprived.

    The only thing i take is Citalopram 10mg for my depression and anxiety which has also got a lot worse 6 months ago.

    It was quite disturbing seeing me have these mini seizure/jerks in my sleep. It is possible to overcome this though with medications though right? I just want to feel awake and refreshed again after sleep

  • Ok now that you have explained a little more about the sensations whilst awake then yes that does sound like you have RLS too . Unfortunately the Citalopram is with 99% certainty making your RLS /PLMD much worse off even causing it! It is a SSRI antidepressant and they are meds to avoid for anyone with RLS.If you look at the post by Bedith about antidepressants you will find information and links about which antidepressants are "safe" to use by RLS sufferers. Do you think some of your anxiety /depression is being caused by being constantly tired? If so you may not need antidepressant meds once treated . However depression can be a serious condition so don't just stop your antidepressants without medical advice. Yes with the right meds it is possible to sleep well although sometimes it is trial and error as what works for one does not help another. A sleep study would be the best way of getting answers x

  • Thank you. I tried to come off my medication at the start of January but the tiredness persisted so i went back on it. The tiredness definitely makes my anxiety and depression worse, way worse. I'm so bad with it at the moment that I'm constantly pacing up and down and feeling like i need to be sectioned. I'm so exhausted it's unreal and i just want to feel refreshed again. Been years since I've felt awake properly. Is there anyway the GP can give me medication there and then if i show them the video footage of my legs in my sleep? Got about 6 hours worth of footage and i move my legs every 40 odd seconds. I really need help with it now as it's so bad.

    Also, as I'm only 25 and I've read it gets progressively worse and I'm already very severe, will it get to a point where I'm incapacitated? I'm really scared :(

  • Please try to not let your thoughts race ahead, I know that is difficult and you are feeling overwhelmed by it all just now but there are treatments to help you.Yes your GP could give you a prescription there and then, there are several different types of medications that can help. When you have seen your doctor tomorrow come back on here and tell us what the doctor gave you.Once you are sleeping better you will start to feel better in yourself.It is the genetic type of RLS which tends to worsen with age.Does anyone else in your family have it? Try to keep as calm as you can as stress will only make things worse. You have taken the first steps now ,you have got the recording to show your doctor and you have found this forum. Educating yourself about the condition is the best thing you can do ,knowledge is power,You have made a good start towards getting better..Do you live alone? Keep talking to us ,someone is always around, you are not on your own.I bet if you changed to one of the "safe" antidepressants your symptoms would much improve. Are you able to get to sleep ok at night? X

  • Pippins, i really appreciate you taking time out to help me. It really does mean a lot.

    I'll definitely come back tomorrow and tell you what happens. My mum seems to have restless legs syndrome, she says she feels the need to move them although she says it doesn't distress her. She says she has to move them when she's trying to get to sleep although she's never gotten help.

    I live with my parents, i moved back in after splitting with my gf in November. I think the reason why I'm so anxious is because i haven't had a restful nights sleep in years and it's built up and up to the point I'm just exhausted now. I'm so tired that i have the biggest bags under my eyes which is making my general anxiety worse. I have recently been taking a small dose of Zopiclone to help get to sleep, sometimes i sleep right through to 7am, sometimes I'll wake up every few hours for no reason(like last night) and sometimes i don't get any sleep at all. I'm worried I'm going to go crazy through lack of sleep :s

    2 nights ago i slept right through the night soundly, but still woke up exhausted. That was the night of the webcam taping which showed me moving every 40 seconds. That's what makes me depressed in that even sleep doesn't resolve the tiredness. Like you say though, once I'm being treated, hopefully I'll get much more restful nights and wake up refreshed

  • Yes what I was trying to find out is if your sensations in your legs stop you from sleeping, people with RLS can't stay in bed because they have to get up to pace,often all night.So that does not seem to affect you in that way so as I originally thought it is the PLMD that is the main problem. You are sometimes sleeping through or at least through to 7 so you will not go crazy from lack of sleep, it is your sleep quality that is poor.Talk tomorrow after you have seen your doctor. Try your best not to worry Think of good things, try to imagine when you go to bed that you are on a beach somewhere lovely, take nice slow breaths,you WILL be fine x

  • Yeah, i never get those sensations in bed. It seems to be the PLMD that's the worst. I've never woken up due to sensations in my legs, I've just woken for no reason and sometimes in a panic. I noticed at one point in the recording that my head seemed to jerk, then i momentarily woke up and changed position. Is that linked to PLMD as well?

  • Yes neck jeering can be caused by PLMD.I take Mirtazapine ,it is excellent for anxiety /depression and it is less likely to bother your legs than the one you are taking.

  • I also take Mirtazapine, and it has totally taken my panic disorder and squashed it. I had agoraphobia also, and with some talk therapy and the right meds ( I have been on the wrong ones ,too) I have no more agoraphobia, and VERY little panic disorder any more. I too used to wake up in a panic. x

  • have to agree with Pippins here on the Citalopram. It is an SSRI antidepressant that will make your RLS worse, so you may want to discuss that with the doctor. There are always exceptions, but in your case, I feel that it is making your situation worse, and therefore is not going to help the anxiety, since it is most likely ramping up your RLS, sorry to say. You really need to go read that web site I gave you, and read up on meds that can make RLS worse.

  • Yes, do not let your thoughts race ahead, and certainly do not be scared. RLS is definitely that uncomfortable feeling, you HAVE to move them, and it is voluntary movements. The web cam is a GREAT idea, and sounds like your PLMS is pretty bad, with your legs moving that often and for that many hours. Do not let any doctor tell you that you are too young to have this. primary RLS can start as young as 1 r old. I have seen videos of kids with it, and my niece's kids also have it, and PLMS. You said your mother has it, so you have primary RLS (genetic) for sure. Like Pippins said, do whatever you can not to stress out. Stress can be a trigger. it sounds as if you are exhausted and we can surely relate. SOME meds used for RLS can stop working, the dopamine meds (parkinson's meds) are the ones that will do that to some people. And, one should always be on the lowest dose possible. if the dose is too high, it will make your RLS worse, and the PLMS. There ARE other meds to be used, so those are not the only "game in town". ;) Stay on the reputable RLS webs sites. This foundation has good web site, and also a doctor/researcher in the US has a great web site, and you should really read the "Drugs to Avoid" list on the treatment page there. many over the counter meds labled to be used for sleep use the antihistamine Diphenhydramine, and that will make your RLS worse for sure, and it is used in cold and allergy meds, too, as well as over the counter sleep meds. You will see on that list other meds to avoid, including many antidepressants. Knowledge is power, and with your web cam recordings, your doctor can hardly argue with that evidence staring him in the face. ;) Stay strong, and keep communicating! many of us here have waaaaay too much experience with this, so we can help allay some of your concerns and steer you in the right direction for good information. hang in there!

  • Thank you for your detailed answer nightdancer. This is so helpful having people know what they're talking about and helping me out. My main concern and problem is the feeling absolutely shattered all the time. If i can fix that, then I'll feel absolutely tonnes better and then go to work on the other stuff.

    My ex girlfriend said i used to kick out in my sleep a lot but i never put 2+2 together and thought it was normal. I wish i had investigated it years ago instead of the doctors always attributing the tiredness to depression or anxiety.

    It does sound worrying that the meds can stop working but you say that there are others? Do you know which ones they are as i can guarantee my doctor will know absolutely nothing about any of this so I'm trying to arm myself with as much knowledge. Mainly something that can stop the movements during the night and let me hit that deep restorative sleep

  • hi, hun, yes, there are other meds to take besides the dopamine meds. The best thing to do is to go that web site as it can be a long list and it is all spelled out on the treatment page. And, your antidepressant you are taking now, needs to be discussed. As long as you are pacing and kicking, you are not going to get rid of that exhausted feeling. When your legs kick as often as yours do, it causes brain arousals, that will not wake you up, but you will not reach the right stages of restorative sleep. The problem sometimes, is that doctors think you are not sleeping because you are depressed, when in fact, it is the other way around. They immediately assume you are depressed instead of sleep deprived. The sleep deprivation almost always comes first, and then the depressed and anxious feeling will follow, because you are exhausted and cannot figure out how to fix it yourself. When you see the doctor, ask him or her how many patients he has treated with RLS and how has he treated them. The way he or she answers will pretty much tell you if they have any experience treating RLS with some success. I can discuss meds with you, will be much easier after you read the treatment page on that web site, because there really are several choices, different classes of meds, and you will then have some idea what I am taking about. ;) I will tell you the classes of meds that are used. First, the dopamine (Parkinson's meds) and they must be used at the absolute lowest dose, they are they ones that can stop working and actually make it worse if the dose is to high. Other classes of meds that are used reguarly are anti convulsants, opiate pain meds, benzodiazapines, and sleep meds that work in conjunction with other meds,. A sleep med alone is not going to stop the kicking. Mostly, people find that a combination of meds at lower doses work MUCH better than one med at a high dose. Ask away, but you really need to go read the list and see what meds are used and what should be avoided. ;)

  • I've had a look at that website and there's a lot of medication to choose from! It does sound worrying that each med eventually stops working. What happens if you run out of options?

    I've done a lot of reading in the last 24 hours and it seems incredibly rare to have it as severe as i do at 25 years old. I also only ever experience the RLS first thing in a morning at its worst it seems.

    I took a small dose of a sleeping tablet last night and went to bed at 11pm, woke up at 3am and then back to sleep and then back up at 7am. I'm so tired it's unreal and my eyes are burning. Cannot wait to get some relief from this and feel awake during the day

  • Each med does not stop working. It is the dopamine meds that you have to watch out for. RLS is a disease with no cure, as with many other diseases. one does have to accept that for now, there is no cure. But, it is GOOD there are a lot of meds to choose from, because no one med works for everyone. Am I right that you have not gotten an official diagnosis yet? I think that you really need to see a doctor. Make sure you are reading reputable web sites, too. There is some scary stuff out there, and you cannot be scared. Again, it is the dopamine meds that stop working for SOME people, and it is because they are given doses that are too high. So, take deep breaths and remember that knowledge is power. I remember how it was back in 1996, when we had NO information. I started the first online support group for RLS, and we went from there. The web site I gave you was our only source of info, and the US RLS Foundation, that was very new. We were scrambling for info, so very lucky for people to have a forum like this and the facebook groups with people who have 20 yrs experience with this. We have survived, and it is not easy, but you cannot be scared, it will only make things worse, and with RLS, it is important to reduce anxiety.

  • Sorry to keep commenting. Been researching it a bit and I'm really scared :( lot of people seem to only have it this severe later on in life. I'm terrified it's gonna get worse and worse to the point that I'm disabled :( I've also noticed that meds seem to run out for people and then they are left with nothing. I'm feeling really depressed and anxious at the moment. Am i going to be like this for life?

  • Sorry, but RLS is progressive, like many neurological diseases. We have said there is no cure, but there are lots of choices for things to be tried. Deep breaths.

  • I had the same problem even after I started Dopamine Agonists. My doc gave me a prescription for 200mg of Modafinil. It is the generic of Provigil, which is the drug the Israeli Defense Forces Intelligence service Mosad uses to stay alert while on a mission. The cost is high for the name brand and the generic isn cheap, but it works without the jitters which I get from too much cafine. Ask your G.P. for it by name and only then will they wright for it.

  • Just come back from the GP. He said it looks like I've got it although he doesn't know much about it. He gave me 0.25 Ropinirole to take on a night. I asked for modafanil but he said GP's can't give it out off label anymore. I have to see how i am on this medication and if it doesn't improve, to go back and report it and they would refer me to a neurologist. I'm just worried as to how long this is all going to take to get sorted out. I'm also worried that the medication will make me worse as I've read it can, especially this particular medication.

    He also told me my iron levels were 43 from my blood test taken a month ago

  • Hi Ssmith, that medications is ok at that low dose.It is mainly when people go over the new daily recommended doses that problems sometimes occurr. Your dose is fine ,the maximum daily dose is 1mg or 2mg absolute maximum. I hope it enables you to get a more peaceful night sleep and feel more refreshed in the morning. Maybe you could use the webcam to see if you sleep better.Yes you are quite young but many people particularly with the genetic type have early onset.I was 26 and 32 years later I am still getting good results from meds so try to take it a day at a time.My daughter started aged 23 and in other groups we have many teenagers as well as sadly young children some as young as 2 years old.What I am saying is it is not out of the ordinary to have PLMD/RLS at a young age, many of us have had it 20/30/40/50 and even 60 years and are still getting good relief. Yes we may have to change medications every so often but there are many different treatments to try By the way the iron test is the Ferrartin iron and that is different from the ordinary iron test and your number needs to be over 50 preferably 70. Take care. .Pipps x

  • Hi Pippins,

    Not a very good night to report. Woke up numerous times again and i recorded myself with the webcam. I'm still jerking and jittering about. Is 0.25mg of ropinirole a small dose? I'm so sleep deprived and i look ill from lack of sleep with massive bags under my eyes. Not a great look at 25! I seem to be getting RLS symptoms all through the day and it's usually worst first thing in a morning and least bad on a night. I don't understand why it's not following the typical pattern. The more sleep deprived i get, the worse i am. It's a horrible circle. I'm going to try and get some sleep during the day today but i can't keep my legs still as they feel so uncomfortable. This is hell! Gonna take another 0.25mg ropinirole tonight and then move it up to 0.5mg tomorrow

  • Yes it is a low dose so plenty of room to increase it .See how you go on the .5 ,the .25 is really just a starting dose so not many would get relief from that but it is best to slowly build up .x

  • Thanks Pippins.

    Today has been the worst day probably of my life. I woke up so tired, my eyes burning like mad because of the tiredness. I've been trying to distract myself and do things all day but I've been anxious and panicking. I've got an inner restlessness in me and i can't calm it down. I keep thinking that this tiredness will never go down and i have such a severe case of this as I'm moving about so much. I toss and turn about 20 times a night in my sleep and jerk every 40 seconds for hours. I just feel like my life is over at 25 and I'm too far gone or complex to recover from this.

    I think the tiredness is really taking its toll on me as it's been years of this now, although I've only just realised what's causing it i hope. What happens if i don't respond to medications or i run out of options? I can't bare the thought of being like this everyday :(

    Sorry for the really negative post, I'm just feeling extremely tired, anxious and depressed. I've never heard of anyone my age having something like this as bad as me and/or recovering from it. I would pay an unlimited amount of money, just to have one night of refreshing sleep

  • There are many more medications to try don't give up already we often have to try a few meds before we find the one for us.This inner restlessness may be caused by something else just because you have PLMD does not mean it is the only thing going on.Have you had any help for your anxiety issues such as counselling , therapy etc? Maybe to put your mind at rest it might be a good idea to ask for a referral to a Neurologist. Just to make absolutely sure nothing is being missed.Have you ever tried pain medications as they can help with the urge to move as well as with pain. It needs to be opiate based,the mildest in this class is Codeine. Perhaps you could ask your doctor if you could try that.Other than that you can buy a very tiny amount of Codeine over the counter, it is mixed with Paracetamol and is sold under brand name Cocodamol. You must stop thinking your life is over because it is not.You are simply going through a rough patch and you will come out the other side.I know it must seem scarey to you and you feel like you are the worst case ever but I can assure you what you are describing with your PLMD is pretty typical and there's a good chance that you will find a med to help you. I think maybe you have a long history of anxiety am I right? Honestly getting all worked up about it is not going to help so try your best not to let your thoughts race ahead, take care x.

  • like I said, we had NO help in 1996, so your life is not over, and you need to stop thinking that. I also echo Pippins suggestion to talk to the doctor about your excessive anxiety. There may be something else going on. You are at the beginning of your RLS treatment journey. My niece's kids have this at the ages of 11 and 8 and we cannot medicate them. So, you are not too young. But you can try to find the best treatment for YOU. Not happening overnight. We consider ourselves successful if we can find the right combo of meds to lessen the symptoms and it is very possible. You may FEEL like you are alone at your age, but I manage many groups for RLS, and believe me, you are not the only 25 yr old with RLS, beginning your treatment. So, you have to be strong, and hang in there. You are not alone.

  • Do NOT move it up without the doctor's permission

  • it will only get worse if the dose is too high. .25 is a very reasonable dose, so keep that in mind. You will know pretty quick if it is going to help. Again, it will only make it worse if the dose is too high, and you are on a good starting dose. Also, not all meds work for all people, and treating RLS is all trial and error.

  • Thank you for your advice nightdancer. I also have Generalised anxiety disorder which is probably feeding this worry. I've had about 4 years of unrefreshing sleep and feeling tired all day and at first it was mild, over the years, it has gotten more and more severe, to now where I'm so tired, i feel like i'm losing my mind. I'm getting about an hours sleep every night and then really severe restless legs first thing in the morning. I think once i have a good nights sleep that is refreshing, my entire mindset will change.

    You guys are an inspiration to have fought through this without information. I'm guessing as time goes by and more research goes into it, more meds will become available and closer to better treatment?

    Like i say, once I've sorted out the tiredness and sleep deprivation, i will feel a lot different. I'm also seeing a psychiatrist for the first time at the end of the month. Will they have much knowledge on the matter as i know psychiatric medication can make it worse

    1 more thing, is there a link between this and eye floaters? I started developing severe eye floaters a few years ago which i got checked out. The optometrist said she could see them, but didn't know why i had so many

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