Has anyone switched from sleeping at night to sleeping from early morning to early afternoon to deal with RLS and avoid meds? The Gabapentin and tramadol don't seem to do anything to stop my RLS between 11pm and 6am next day but I find I fall asleep around 6am and can sleep until noon or 1pm without the RLS kicking in. I know I'm in the minority in not having to work next day ( retired on ill health grounds because of my MS) so maybe I should just accept the situation and make the switch.
Jools
Jools, if it was me, i would be trying to find what meds are going to let you sleep at night, rather than turn your night and day upside down. Maybe you could up the dose of your meds either one of them or both with trial and error. Of course you need to discuss it with your doctor. Do you think you have come through the augmentation now...?
Hi Elisse,
I think I've definitely come through augmentation as I only get the RLS in my legs now and only at night. I've played about with the meds- increasing the dose and trying different combinations. I absolutely agree that I would rather sleep when everyone else is. Maybe when my GP switches me to oxycontin ( on orders of my MS neurologist) I may get some relief. Seems that it's true what you've all been saying- what works for one person may not work for another. Fingers crossed
Thanks for the advice,
Jools x
Thats is one good bit of news, the augmentation has gone. 
The oxy i am sure will be more helpful for both the conditions. Yep, its all trial and error for us, trying to find that flipping med that will work. x
Absolutely. I'm so happy that I can sit still now without my legs lifting up the table. it's also gone from my arms, back, hands and face. Just the legs to get under control at night now so I have to look at how far I've come rather than how far I have to go.
Thanks for all the positive words,
jools
Yup. I hate the meds as then do nothing for me but add weight! I'm wide awake all night, pacing the house, trying to tire out my stupid legs. I finally pass out around 4:30 it do. My legs have been the worst ever the last couple of nights.
Check out the website on alternative medicine for RLS. It has very good info on what is happening inside your body with RLS (neurotransmitters and things like histamine and inflammation.) It is rlcure.com. (an absolute cure for RLS)
Also consider seeing a chiropractor, as they deal with the structural causes of RLS. When there is pressure on the nerves causing RLS, it needs to be released or it causes continuous inflammation, hypersensitivity and malfunction of the nerves. I have had great relief from both these approaches together. And they don't make you gain weight!
Come to think of it, the RLS kicked into a high gear I have never experienced before AFTER flying off a friend's horse while we were jumping. I sustained a bad ankle injury 7 weeks ago. The Chiropractor just might be the right ticket to help alleviate some of the symptoms!
Hi LauraFlora
I'm open to any possibilities. I already follow a very, very restrictive diet. I don't eat sugar,salt,dairy,alcohol,caffeine, any grains whatsoever ( so no gluten) and I only eat fish,chicken,loads of fresh veg and low sugar fruits. My problem is trying to keep weight on! I take magnesium and iron supplements but will also add theanine and curcumin and lots of water. I tried the top chinese university acupuncturists based in London but they said acupuncture would not help as it was an internal imbalance ( I agree). Clearly my RLS is caused by the inflammation to my nerves caused by my MS so I follow the restrictive diet to help my MS so it appears it may help my RLS as well ( although it hasn't yet).
I will stick to the diet, take the supplements and keep hoping.
Jools
Yikes! I'm fit and I have fought with anorexia for too many years. If I gain unwanted weight now that I'm at a healthy weight, I don't want to relapse. I'm also vegetarian..... I'm going to call the chiropractor today!
Have you tried a chiropractor? They are well versed in RLS. I go to one as, particularily, my sacroilliac joint goes out (tailbone), due to falling on it several times in my life and compressing the vertebrae. He has given me quite a bit of relief from RLS, when nothing else helped much. The nerves were being pinched, inflamed, hypersensitive. Altho there was little pain, the RLS was terrible. Anytime the nerves of one's spine are compromised by the spine being out of alignment, they cause problems.
So, the supplements helped me a lot, but recently when my tailbone was out again, they seemed only to work for a short time - an hour or so. But when I went for chiropractic treament, and then he had me ice it to help with the inflammation, I slept SO well, with only 2 or 3 flickers of RLS. And have slept well since! It is my two-pronged approach - structural and internal.
I'll try anything. Will find a chiropractor in London if I can. Nothing ventured...
The "science" behind that web site leaves a lot to be desired, and he also slanders many RLS experts, and the 2 foundations, etc. He used to advertise for counseling sessions on his web site and he had no credentials to do that, to charge for private counseling sessions. Just consider the source on that web site, and the fact that he uses the word cure. There are lots of treatments, but no cures yet.
I did take it with a grain of salt. However, I had also read some of the same recommendations in other articles. But, more than that - I found taking theanine, taurine, bromelain and quercetin (which he recommended ) to help so much with my own RLS. So, I would say - the proof of the pudding.... One must be open and do some experimenting and it is a good place to start. Especially for people who have not had success with, or do not want to take, or have had too many side effects from drugs.
I agree whole heartedly that there is no cure; it takes continued management. I do not think that one will be cured and then never have to worry about it again or take any treatment for it. But, I can tell you that I myself will continue with those 4 supplements I mention above, as well as going to my chiropractor. This two-pronged approach has helped me very much. It has made the difference between sleepless, disturbed, twitchy, electric tickles coming every 10 seconds, just-shoot-me nights and being able to sleep comfortably getting up once to go to the bathroom.
And, if it worked for him, at least he is sharing it with others, not keeping it all secret. One can't fault him for that. Is he an 'expert'? Probably not, but maybe he is onto something.
I am glad that what YOU are doing for YOURSELF is helping you, and trust me, the owner of that web site may think he is an expert, but................ he has done a lot of reading, I will give him that. I object to the name of the web site, first and foremost. There is no ABSOLUTE CURE and that has been the issue right from the get go. NO ONE can claim to have the absolute cure. maybe a "treatment" but the word cure is way over used on that web site. He has suggestions, his story changes as to how long he had RLS in the first place, and so on. Been following him closely for a loooong time, when he only had 2 pages on that web site. The theory has grown. I am not detracting from your personal treatment, I always say whatever works, but I am BIG on semantics. As always, on the internet, if it sounds too good to be true , as in "Absolute Cure", then it is. He was told a long time ago, if he would just change the name of the web site, it would be so much better. What worked for him is fine, but it certainly does not work for many many people, and making theories sound like scientific fact is an art form. That is the last thing I will say, but I have a long history with him, like I said, when he was just getting started, and have followed the entire thing. I do not like the slander on the real RLS researchers, or the RLS-UK foundation, or other foundations. Read between the lines on that site, and you will see a lot more.
Yes, I did read between the lines, when I first came across it. I should have mentioned that when I recommended people look at it. However, I guess I assume most people would be wise enough to do that anyway. I did find some of the supplements he advised to be quite helpful (did read @ them elsewhere as well.) I did not think, myself, that such dietary restriction is neccessary or sustainable, but then again, for different people, well, they have to judge that themselves. I eat a mostly natural, clean diet, but am not paranoid about it.
I stand by my chiropractic treatment, which I did leave as a message on the rlcure site. This again is something people have to decide to pursue for themselves, or not. I have had much success with this approach as well. I wanted to mention it to people, in case they had never heard of it.
Which is why I suggested it to people on this site.
So, I did benefit from the rlcure site, and I think that at least SOME of his info is correct, or at least sensible. I think people need to be able to read up on info from many sources and then judge or try things themselves. This is the benefit of the internet - we can find out lots of info. Not all is right, but people do find great info out there. If one only asks one doctor, for instance, they are limited by that doctor's expertise.
So... I have been trying to be helpful, rather than keeping what worked for me, to myself.
My RLS is similar to yours but not complicated by MS, which must be very hard. I agree with the other comments. Better to try to sleep at night. Even if I've only managed a couple of hours sleep I get up at 8:30 a.m. and don't nap during the day. When I get exhausted enough I will get the occasional good night's sleep. I'm retired so not an option everyone can follow.
Good luck.
Thanks Mariahbelle,
I'm also retired but if I get no sleep I fall over a lot because of the MS. I'll keep trying to find a workable solution.
Take Care,
Jools
If i have a really bad night, then being retired, i nap in the day IF the RLS is calm. I find its better to get that nap if you can, being over tired can make RLS worse for some.
the morning is fine.If I went to bed at 6 am I'd have no RLS. Its a night time thing.
I agree, have interrupted sleep, then at around 6am Rls gets me up and I take a cup of coffee to bed and can sleep another hour or two! As we know its different for us all!! But certainly I rest whenever possible, else with the lack of nightime sleep, my brain and emotions are out of control (sleep deprivation)
@ Night owl. If I'm not mistaken tramadol is an opiate . I took it for a while and it made me crazy . I personally would not recommend it for RLS. Took Flexeril one night for back pain along with my Trazadone l and fell asleep quicklyandhada great night sleep. I know this may not work for anyone else but it for me for the past two weeks .
Tramadol is a synthetic opiate, and works for a LOT of people. Sorry you have a bad experience, but that is why we say everyone is different. What works for one does not work for the next, and so on. In fact, many muscle relaxers can make RLS worse, so again, it is all trial and error.
Many people who have RLS take tramadol and have no issues with it. As always what one persons bad experience with a med doesnt mean some one else will.
Hi well thats ok if you dont work but i believe ppl that have true rls dont have pain as im not in pain in any way. And when rls starts ppl cant take tablets all day as they wouldnt be able to function .
Pain IS listed as part of RLS now. The International RLS Study Group DOES list pain as an RLS symptom. irlssg.org
Pain and RLS was discussed in a question posed at the AGM this month and yes, we were informed that pain is associated with RLS.
Jeanniebeannie, believe me people do have pain with their RLS. even the RLS experts acknowledge this now. Not everyone gets pain with their RLS and you it seems are not one of them. I get pain with my RLS and i do have "true rls".
Hi joolsg, as exhaustion results from not getting enough sleep, I have found that making use of quiet times (RLS) to get needed rest is essential!.I have had RLS since 10yrs old, and am now 63. I also now suffer with ME, so have a real battle. For the sake of my sanity etc, I have to be selfish and say no to more things which require much energy. Pacing my duties also helps, but is hard to remember to do. I have recently weaned off Ropinerol because of augmentation, but need to take something, so alternate dihydrocodeine with a half dose of Ropinerol as needed.
Hi Elanemarie, I agree. If my legs are calm in the day I sit calmly and "deep doze". Not quite sleeping but almost. It definitely helps. Doctor prescribed Oxycontin, one 5mg at night but I'm too scared to try it at the moment.
Hope everyone gets some sleep and rest,
Jools
5 mgs of oxy is a low dose. Try it for one night. it helps immediately, if it is going to work, as in you do not have to build up the level of the meds. I use a similar med and without I would go nuts.
Thanks so much for that info Nightdancer. That has put my mind at rest so will give it a try. fingers crossed that it works.
Jools
Hi, Joolsg and everyone on this forum! My RLS is relatively new and seems to be tagging along with some relatively new Sciatica, so I'm finding all these older questions very useful now. I realize this CONVERSATION IS 2 YEARS OLD....IS IT ALRIGHT TO RESPOND NOW? Until I know the answer, I will respond to older conversations. JOOLSSG, I SEE NOTHING REALLY WRONG WITH "PUTTING YOURSELF ON 3rd SHIFT"; many people work these hours and sleep late. I THINK IT IS A DECISION YOU NEED TO MAKE AND WHATEVER YOU CHOOSE, YOU NEED TO FEEL GOOD ABOUT YOURSELF! It seems that many nights, I end up doing this "shift" whether or not I want to...so it has been very beneficial to me to "give myself permission" to sleep a shift I CAN sleep in. It's not like this every night for me, but when it goes on for multiple nights, I just NEED to sleep. Period. Like you, I can do this only because I am "retired". Sleeping early morning through late morning (for me it's about 5am thru 10:30am during long running RLS episodes...later if I can sleep longer) just works for me when the RLS has been going on for multiple nights. This really doesn't interfere with my life at this stage, because I can still get done with a lot of what must be done around the home and be there for my husband when he arrives home around 5:30. IT IS NOT IDEAL, BUT IS ONE WORKABLE ALTERNATIVE I AM SLOWING ACCEPTING AND NO LONGER BEING HARD ON MYSELF FOR. Thanks for sharing! Hope you are well!
Hi raacdoolittle,
I can’t believe I’ve been posting for over 2 years!
I have long accepted that I just need to sleep the hours that RLS allows.
I did take OxyContin and still do so today- together with pregabalin, upping my iron and going vegan it enables me to have several nights a week free from jumpy legs.
Take your time looking around the site. There is so much useful info.
Take care
Jools
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