insomnia and restless legs, which comes first?

I started with chronic insomnia, followed by restless legs, followed by migraine without the headaches, followed by M.E. followed by nausea and vomiting! As far as I was concerned they were all symptoms of the insomnia but my neurologist says they are not related. Who am I to disagree but I feel that if my sleep disorder could be sorted everything else would disappear. Am I delusional as well?

18 Replies

  • If you cured your insomnia, your restless legs syndrome would still be there. RLS is a neurological condition, that i do know..

  • Thanks Elisse. I guess there are dozens of answers to the same question, even the experts seem to disagree. I've been told to sleep when I can, adhere to a strict sleep programme which nearly finished me off altogether, have a power nap during the afternoon, DON'T close your eyes AT ALL during the day..and many wonder we get confused!

  • You are right, lots of confusing info out there, all saying the opposite to each other. I do know that, the experts used to say DONT nap during the day, if you RLS keeps you awake through the night. That has changed over the last few years. So many people were making themselves ill through no sleep at night then trying to stay awake during the day. I always take a nap in the day, thats if my RLS lets me. But i am lucky, i dont work, its the one who somehow have to go out to work that i feel for.

  • I know many people with RLS, seem to suffer insomnia. That can be because of the medication they take, some meds. cause insomnia. Or after years of being awake through the night with RLS, the body clock gets messed up.

  • Dear insomnia

    My experience tells me that my neurological conditions are playing together and influence each other. An example is what happened to me last August. It started that I could not fall asleep because of the pain in my left side arm and leg. This went on far into the night. Around four o'clock my husband came into the living room then I had turned everything upside down. I had also taken red things out of the fridge. He could get me into bed I only stopped there for half an hour. What I remembered after the night was that I had fallen two or three times,had a bump behind my ear, I felt like I was beside myself. This was an epileptic seizure, I know because I got the epileptic headache and tiredness.

    You a not delusional at all, I know and do not let anyone tell you that. If anyone tries to tell you how to behave and what to do ask the person if he knows how it is not to be able to sleep, sit, lie down. You will do well especially if you can take it with a bit of humour.

    Good luck


  • Thank you Kolla. What you say makes me remember similar occasions when I can't remember what I've done! One such time, this was put down to a nervous breakdown...after several sleepless nights whilst working full time, I disappeared for two days, was found walking around in Dumfries, Scotland after having driven there, drawn money out of our account without any identification etc. Still can't remember any of it, several similar things but nothing so drastic, only happens when I'm completely exhausted. I've been known to raid the fridge and eat ham, sausages etc in the middle of the night...I'm a vegetarian on 36 years!!!! Isn't it good to have sites like this where you can chat to people with similar experiences, it really does make you feel you're not alone!

  • Dear insomnia

    I was reading through this again. When I saw your I thought Io ask you wheather "they" have ever looked for epilepsy in your brain?

    I am rather fond of the little that is left of my epilepsy.. Mostly because there are soo many humours situation you can land in,and not remember any of it.

    We have hadgueststo dinnerandwhilehaving the coffee after dinner, I have been known to disappear and go to bed. The day after I had forgotten the dinnergueasts. and so on and so forth.

    enjoy your day


  • Hi Kolla...sorry haven't responded to your last message, have been zonked for two weeks with really bad insomnia, leggies going berserk and the awful symptoms that go with "migraine without the headaches" My cousin came to visit during this awful time and I didn't know he'd been...back on planet earth now and hoping for great things as I am now seeing a sleep specialist ( the one that is on BBC Wed and Thur so I'm hoping for great things) Haven't been checked out for epilepsy but I think that may be an answer as my nephew suffers from it. A sense of humour certainly helps!

  • Hi. I really feel for you. Were you by any chance taking dopamine agonists at the time like ropinerole, mirapexin etc? You are definately not alone.

  • Hi Peterk. Nay, the restless legs came before the insomnia. mentioned to my neurologist that it was worse when I was tired and she disagreed, said that it has no connection, a different thing altogether

  • I got RLS first now I have the neupro patch I don't get the jiggy jiggy legs but now I have insomnia! I blame all the years of having jiggy jiggy legs and not having the right medication! But now I have the right medication I get the insomnia!!! Heck I can't win !!

  • The long acting dopamine agonists can cause insomnia from my experience. I can't take them at all due to serious side affects. RLS is a motor sensory disorder but it definately is accepted that there is a painfal type too and also with the involuntary limb movements in the 19th century it was described as "torture from hell". That's exactly what it is, especially when you have to force the medical profession to listen in a lot of instances.

  • Your right Rish. It does your head in when you're prescribed medication and one of the possible side effects is INSOMNIA! Why prescribe it when you know the person already has it!!! I know the answer to that really is that not everyone suffers the same side effects but it sure does drive you potty!

  • I feel exactly the same. I had RLS for 10 years before I was finally diagnosed and thought it was bad because my symptoms woke me up all throughout the night but since getting put on all sorts of medication for the last few years I find that these medications might work for the RLS and I may get a better sleep from the symptoms but now I suffer terribly with insomnia. So your right I also feel I can't win hence why I am writing this at 7.30am and still haven't slept yet. It is getting harder and harder to cope with this disease, I am at a loss as to what to do next :(

  • There are 89 distibctive separate sleep disorders. Any one of them can happen first. But, RLS is definitelt a sensorimotor related sleep disorder, and when outr sleep gets really screwed up it screws up our inner clock. so even if the RLS is quiet on some nights, we can still have other disorders that do kind of go hand in hand like insomina, PLMD. RLS IS neurological, and it also is familial; they hav e discovered the genes that get passed down through a family. Night eating without remebring is called a "parasomnia" or simply put, stuff you do in your sleep and do not remember. Can happen with some meds , or all on it's own. I used to night eat, and would wake up the next morning and see the evidence, and be horrified. some people SLEEP DRIVE. I know several people personally that have done that. Sure, one condotion can disrupt another and so on, but with the "sleep hygiene" thing (rules that used to be used) should be thrown out the window. If you CAN nap,. do it. We have to sleep sometime, so forcibly making oursleves stay awake when our body and brain are crying out for help is just crazy. We have to work out what works for us personally. Stay on the reputable web site, so that it is less confusing. is a great web site (based in the US) but RLS is universal. the treatment page and the list of "Drugs and foods to Avoid" are golden, and you can write the expert there, that is an RLS specialist and researcher. I have been dealing wth him since 1997, and now mamage several online groups getting close tb 4,000 members. You are certainly not alone, and certainly everything you said and asked are all common concerns for us RLSer's. :)

  • Thanks nightdancer, a lot of good info. I certainly agree with sleeping when you can, I really think the experts should be forced to have little or no sleep for just ONE week, see how they manage!

  • By the way I have have had migraines since I was a teenager. Lots of conditions can happen at the same time, but not necessarily be connected. As much as we would like to blame everything on RLS, we just can't. That would make it so much easier. :)

  • I suffer from slight insomnia, sleeping about 2-3 hours a night if i'm lucky. This is long term. The RLS came about 4 years ago for no apparent reason.

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