How do I manage this strange sensation at night and not feel completely exhausted during the day?
I have had RLS (undiagnosed) for a long time along with sleep paralysis when I eventually fall asleep. Started when I was about 16 and was manageable. But the past week it has come on with a vengeance... I’ve been unable to sleep for the past 3 nights and only was able to fall asleep around 5-6am for about 2 hours in order to get my little one ready for the day. I AM EXHAUSTED and don’t know how to manage this from here. Going to the Dr at the moment is not something I feel safe to do. But I’m desperate for this to stop or ease and be able to have a good nights’ sleep. It’s currently 3:17 am and I’ve about reached my limit emotionally with this.
Any guidance or advice would be so appreciated!
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Talitha1
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I'm terribly sorry that you've been affected by this, I can appreciate what you're experiencing.
Just to clarify, is it because of RLS symptoms that you can't get to sleep, i.e. they prevent you?
If so this is not unusual with RLS, I have experienced that myself.
It is a little odd that it has suddenly got worse in the last week. A sudden onset like this usually happens because sometbing has triggered it. So is there anything that's changed for you in the last weeks?
There ARE solutions for this.
Some of the possible solutions unfortunately may take a long time to have any effect, but I guess you may be desperate for an immediate solution. In which case, you perhaps ought to try RLS medication.
I'm now seeing this more and more of a problem and it's beginning to be recognised in tbe media. People are not going to a doctor when they need to either because they're afraid it's not safe or because they think doctors need to ckncentrating more on virus patients.
To put this forcefully, some people are dying or will die of heart disease, stroke or undiagnosed cancer because of this situation.
I'm not saying RLS is life threatening, but I'd say you need medical help so it is best to contact your doctors. GO!
Doctors will be taking informed precautions : it's probably safer than perhaps other things you do.
Hopefully, your doctor will prescribe medication that is known to be effective for RLS.
Firstly, it may be that you could do with something to help sleep, temporarily You could ask for this.
There are three main types of medicine that can be used for RLS. Two of them are usually considered "first line" treatments. The third is usually reserved for when tbe first line ones don't work. These are opiates and you will find that your doctor refuses to prescribe an opiate for RLS.
Your doctor should be willing to prescribe a first line RLS medicine.
You have a bit of a hard choice to make.
The recommended first line medicines for RLS are either gabapentin or pregabalin. These can be effective for RLS symptoms and can help sleep.
The downside is that they take about 3 - 4 weeks to become effective. They also can make you drowsy, dizzy and you may stumble when walking. These side effects usually wear off after a while.
The other first line treatments are the dopamine agonists. Your doctor may be more aware of these. They're called pramipexole, ropinirole or rotigotine. These have the advantage that they usually work at the first dose , i.e. immediately.
They also can make you drowsy and nauseous at first.
Unfortunately, they are no longer favoured because if taken in the long term can cause significant problems known as loss of efficacy, augmentation and Impulse Control Disorder. Augmentation is common.
If you hope later to witbdraw from a dopamine agonist or have to, it is very very difficult to do so.
Hopefully taking a medication will be a short term solution for you until you find out what other steps you can take, which take longer to have effect. I'm afraid that typically, once you start taking medication, it is difficult to get off them, especially the dopamine agonists.
You may find that the doctor is not particularly well informed about RLS, so you need to be informed yourself.
If you lived in the UK I could link you to the national guidelines for RLS. The web site however is only accessible within the UK and judging by the time you stated you live in Europe?
However, I can link you to an overview of RLS treatment which should help.
Thanks so much for your reply and all the incredible information.
I have contacted my pharmacist and will be receiving meds which they deem effective in correlation with my symptoms.
I live in South-Africa.
So hopefully tonights’ episode won’t be as horrible as it was last night. It’s about 19h00 here now and I still feel alright. I tried to move around a lot today as I read that sitting still for long periods at a time can also cause the RLS to flare (quarantine problems).
Be careful, I'm not sure what a "pharmacist" means in SA, but iin no way would I rely on a UK pharmacist to decide what's best for RLS symptoms. I can't even rely on a doctor for that.
I suggest whatever they send, I'd check back here to see if lhose with long term experience of RLS think of it.
Any time spent not moving brings on symptoms. This a defining feature of RLS. Moving relieves symptoms.
Doctors do not understand what we are going through.
Hello! I'm sorry you don't feel good. Exhaustion is Hell. What stuck out to me about your post was you saying you do not feel safe going to the doctor. Is this due to feeling too exhausted to drive there? Or is it something more sinister like feeling you will hurt yourself if you go out? If the latter, please call the emergency number where you are.
No, nothing like that. I’m very skeptical about going out due to the Corona virus. It’s been doing the rounds in my community lately. I have spoken to a pharmacist and will be delivering meds which should help.... I hope. Thanks for your reply xx
Phew! I'm glad to hear that that's all it is! I really hope the meds help!
I've been exhausted for way too long and am so sick of it. I don't know what I'd do if I didn't have my caring husband. We've tried many things over the years. The things that have stuck are rosemary and peppermint essential oils, as well as Dr. Pepper (no other soft drink wakes me up). My husband is a huge fresh pepper fan, so a few times he even came to my bedside with a habanero for me to bite into. While that did the trick every time (I have never gotten out of bed so quickly before!), I told him I was deserting that idea for kinder measures...
I use Bach Rescue renedy and I a,so get up at 2/3 in the morning and have a hot bath with lavender salts. Sometimes just walking down the stairs can help...but sometimes nothing can, sorry
Hi Zadoc, sorry to hear you're struggling. I too once woke at 2 - 3 every morning and most times never got to sleep again.
In my case it was partly due to having RLS anyway, but mainly caused by augnmetation due to pramipexole.
If you're taking a dopamine agonist it may be that causing your insomnia.
However, if you're not taking any medication, it mght be advisable.
It is a choice, but I believe that diets, supplements etc only help to a certain extent and if despite them you're still struggling and suffering choni csleep deprivation it may be time to consider taking medication.
What meds are they giving you. I really hope its not a DA. I have gone through pure HELL over the last 6 months trying to get off of them from the EXTREME Augmentation. Requip worked at first, but when i started augmenting it was worse than the initial symptoms and i spent months trying to sleep in the bathtub every night and i had bad RLS ALL day. The only thing that has truly helped me is a opioid and gabapentin. I highly recommend that you do not even get on a DA. Sorry you are going through this...………...it's a nightmare.
I am doing soooooo much better. I am finally off the DA’s as of Wednesday. I finally found a doc to help me. They prescribed me an opioid and Gabapentin and it has changed my life. I will NEVER put another DA in my body. 🙄😊
Oh I did experience withdrawal in the beginning coining off 5 pills a night, but the saving grace was the opioid (Hydrocodone) and the Gabapentin. I am not sure I could have gotten off the requip so much easier without it. I take one 10/325 Hydro and 1 600mg Gabapentin at night and can usually sleep through the night with little issue. I think one the requip gets totally out of my body it will be even better. It was not easy trying to find a doc that would help with these meds. I pray you can get relief. I hate that anyone is going through this hell. I printed lots of literature about augmentation And took it to every doc appointment. I finally went to a pain med doc that would listen.
I find that GABA helps with both the RLS and with sleep. This is the amino acid GABA 500 mg from a health food store (or Amazon.) It is NOT Gabapentine the drug. After reading about it in Julia Ross's book, The Mood Cure, which has a long chapter on sleep, and some advice for RLS in that chapter, I experimented with that and a few other things she advised.
I found 5-HTP 100mg - 200mg to be helpful with sleep, tho I found combining it with GABA to be much better, for me. She (I got the book on Amazon) advises taking 5-HTP or tryptophan, and Gaba - to start out - in the later afternoon, in the evening and then before bed and if you wake up in the night, to build up your stores of serotonin and gaba (a brain chemical.) Then eventually cut back to perhaps just one before bed, and if you wake up. (I pretty much only take this before bed and if I wake up in the night, which I usually do for the bathroom. Sometimes, if I feel wound up in the evening, or have a bit of RLS in the evening, I will take either both 5HTP and GABA or just GABA.)
I myself had tried many things over several years of problems sleeping, but the GABA and 5-HTP have been the best for me. One has to experiment, tho, with taking non-drug remedies, as not everything works for all people. But, if you think of it, doctors have to try different drugs on their patients also, different dosages, etc. You might want to look GABA and 5 HTP up on line, also.
And also, if you don't know about magnesium citrate, iron bisglycinate, and folic acid, you might look up those for RLS, also.
Hi Talithal, I'm so sorry to hear of your RLS. It's a pity that you don't feel that you can see your doctor. I tried absolutely everything before seeking medical advice but nothing helped me. However, my sister says that a hot bath helps her RLS. I take Sifrol tablets - have done for 5 years - and they work wonders for me. I do hope that you will soon be able to see your doctor.
in reply to
Sifrol is pramipexole. It does work wonderfully well for RLS, at first. However I suggest you read what people say about pramipexole and augmentation. I also suggest you read the pinned posts on this site
I'm sorry. it's not really my place to do it, but whenever I read someone recommending taking a dopamine agonist, especially pramipexole, I feel compelled to say, this is really not a good idea.
And to warn the writer about augmentation.
in reply to
Hi Lauraflora - thanks for your answer. I can only what describe what happened to me. My Neurologist prescribed Sifrol 25mcg. 5 years ago and it worked very well for a month. However, it had to be increased to 75mcg over the next 6 months. The drug isn't perfect but the RLS is manageable - at least for me. I believe that it's worth a try.
in reply to
Hi, I'm Manerva, not lauraflora, but I still think you meant to reply to me.
I can only say if you've been taking 0.75 mg of pramipexole ( above the maximum recommended dose) for five years you are at grave and imminent rlisk of suffering augmentation.
I hope not, it's difficult to put a figure on it but your risk is currently around 50 - 60%.
I do suggest you read about augmentation and prepare yourself for when it happens.
There are other medications that are effective for RLS that don't cause augmentation.
For anybody that's not previously taken a RLS medication, it's now becoming accepted that pramipexole is NOT worth a try. RLS is a life long condition and you'd hope you could rely on any medication to continue to work indefinitely. Pramipexole won't.
Being forewarned however is being forearmed.
in reply to
I assume that "augmentation" means that the condition gets worse. Am I right? People seem to talk about it as if it was a death sentence. I'm really not in favour of self medicating - I prefer listening to my doctors.
Rodavcyn, augmentation in relation to RLS and pramipexole (or other dopamine agonists like ropinirole) means a paradoxical worsening of the symptoms, NOT due to the RLS itself, but due to the pramipexole. See for example pubmed.ncbi.nlm.nih.gov/175... .
And yes, generally it is wise to listen to your doctor. However, not many doctors are knowledgeable about RLS, not even neurologists that 'specialise' in RLS. Often, their knowledge is terribly outdated, as in the past 5-10 years important new insights in RLS and the treatment have been achieved. Thus, we here advocate to first inform yourself thoroughly (we mainly provide links to scientific papers and information available on sites of official RLS foundations) and then take that knowledge to your doctor and discuss it with her/him. Always work with your doctor, as everybody is different, often, you have to 'educate' your doctor. Sadly, that is the experience of most people here on the forum.
in reply to
Yes augmentation is a signoficant worsening of RLS symptoms caused by a dopamine agonist. It's as if the drug reverses its effect i.e. the more you take, the worse it gets. The only effective way of dealing with it is to stop taking the dopamine agonist.
This is very difficult because withdrawal symptoms can be severe.
It can be managed however and in many cases the RLS symptoms can be relieved by switching to an alternative medication.
By alternative is meant a different medication which a doctor can prescribe for you.
I'm not sure why you mention self-medicating. I'm certainly not suggesting that.
My experience is one of suffering augmentation for several years including RLS symptoms of often quite violent involuntary movements in my legs, arms and shoulders. These could happen almost any time of day and within seconds of staying still. This happened every day and on a good day I'd get 3 hours sleep.
By reducing and stopping pramipexole over 10 months and taking gabapentin as prescribed by a doctor I have practically eliminated all RLS symptoms and usually sleep 6 - 8 hours. It wasn't until then, when I got my life back that I realised how bad it had been. It had also been unnecessary if I'd known about dopamine agonists and augmentation.
I read in this forum of many people who have suffered augmentation and wouldn't want to wish it on it on anyone.
That's why if I read that someone is taking a dopamine agonist and/or suggesting to others that they should start taking one, I warn them of the danger.
Augmentation isn't a death sentence, but it can be pretty destructive of any quality of life and it shoukdn't be underestimated.
If you don't yet have any problems due to taking pramipexole, that's great, but please, don't suggest to anybody else that it's a good idea especially when there are other RLS medications available that don't cause augmentation.
in reply to
I'm sorry but I didn't suggest that anyone else should take sifrol. I said that it works for me. I have taken Palexia for pain on one occasion but the side effects were awful. So you see- it's good for you but not for me.
I am intrigued by your outstanding knowledge of restless legs and it’s treatment. I recently posted a post (38 weeks pregnant and I currently have severe debilitating restless legs - or rather full body!) and I can not fall asleep nor maintain sleep because of it. Due to this insomnia I’ve read a lot of your responses in this forum.
Can you tell me why the advice is to slowly taper dopamine agonist rather than going off them ‘cold turkey’. Excuse my complete ignorance in this matter.
Hi, there are several regularly contributing. "patient experts" in this forum which I might be considered as. Pregnancy isn't a particular area of expertise for me, being the wrong gender.
I hope you got some useful information in your post, I wouldn't have responded.
I can try to answer your question though.
To put it in simple terms dopamine agonists are one of many classes of medicines to which our systems "adapt" to, i.e. the systems change. This causes "dependency", our systems get used to the medicine and in some cases stop producing things which they would have done normally. If we stop taking the medicine, then our system have to "re-adapt" back to performing the way they did before. In some cases this can take some time, in other cases the medicine may have caused permanent changes and our system don't get "reset".
There is some suggestion that DAs may cause permanent changes, specifically, they may lead to the loss of dopamine receptor sites, particularly if augmentation has occurred.
Even if this is not the case, then certainly once someone's become dependent on a DA, it does take some time for our system to reset.
With DAs, 3 things can happen
The rarest risk caused by sudden DA withdrawal is a condition known as Neuroleptic Malignany Syndrome. Luckily it is rare as it can be fatal.
Less common, mainly occurring in people who have developed an Impulse Control Disorder as a result of taking a DA is DAWS, Dopamine Agonist Withdrawal Syndrome. This can also be very serious and can lead to mental health problems, over months or years.
The most common consequence of stopping a DA is simple DA withdrawal effects. These consist of a significant worsening of RLS symptoms, including sleeplessness.
It has been shown that best way to reduce these withdrawal effects is to reduce the dose of the DA gradually. It's also found that the lower the dose you reduce to, the harder it is to reduce it any further. Counterintuitively it's harder to reduce from a small dose to nothing, than it is from a high dose to a low dose.
Many people struggle horrendously with withdrawals and some simply give up trying to stop, or stop then start again.
I reduced from 0.75 mg pramipexole to nothing over 10 months with little or no withdrawals. I have read of people withdrawing from a sixth of that dose and experiencing severe symptoms. Going cold turkey is not advisable for that reason.
Thank you very much for your reply. Very informative information.
If you don’t mind, I have one further question. Apologies Thalita for barging in onto your original question - I don’t know where else to ask it.
My restless legs are mainly identified by that horrible - nearly indescribable- eery feeling in mainly my left leg that prevents me from sleeping. It is somewhat relieved by movement (eg getting up to walk). When I have ‘bad’ nights my body seems to move my legs ‘on their own’ (Eg. I feel I don’t have control over it). I feel that eery sensation and my legs forcefully shake (like kicking) for 5ish consecutive times which eases that eery sensation briefly - before this circus repeats itself 30 seconds later. I can break this cycle by getting up and going for a walk.
Is this part of restless legs? Or is this part of ‘PLMD’ (as I have little to no control over it).
I am not per se after a diagnosis. Just curious how the 2 are being differentiated and if it matters treatment wise.
I have had exactly the same experience, as you describe. i.e. involuntary movements.
I once discussed it with a neurologist and we concluded that the pattern of movements wasn't quite the same as descriptions of PLMD. In particular, with PLMD the foot (ankle) is supposed to bend and straighten.
However, it was also agreed that it doesn't really make any difference whether you call it PLM while awake or you call it RLS. The effect is the same and the treatment is the same.
I have read of other RLS sufferers having the same experience and it's commonly referred to as "twitching".
At my worst, it also happened in my arms and shoulders and these could be quite violent.
SO, yes, such "involuntary" movements do go along with RLS.
Well it may not be a death sentence but going through augmentation sure feels like one. I was wondering if I would die from the torment of it all and weaning off a DA. Terrible drugs they are. I sure wish someone had warned me about the horrors of a DA drug and what happens more often than not. I would suggest people not get quite so defensive when someone like us who has gone through the torment of augmentation tries to warn others of what very well could happen.
I would agree that listening to doctors is a good thing however in the case of RLS a good portion of these doctors don’t seem to know enough about RLS as well as some pharmacists. I once asked my pharmacist about the best way to get off of Recuip before I even knew anything about augmentation and I was told to “ just stop taking it”. Wrong answer. My point is that for some reason the medical community just does not seem to know enough about RLS to lead us poor sufferers in the right direction. I have gotten so much good life altering information from what I would call “ experts” on this forum that I’ve gone into a doctors office prepared and ready to have an intelligent discussion rather than have the doctor merely up my DA dose. Knowledge is everything when it comes to this horrid disorder.
Also there are certain foods that can trigger RLS. Can be individual to a person and not necessarily to a different person. Pretty much anything that contains MSG - monosodium glutamate can set it off.
MSG may be added to foods, but I seem to remember that some foods contain it naturally. You could look up foods that set off RLS as I don't remember just where I read that some time ago. Also keep a food diary to see if you can pinpoint anything you ate before you have a bad case of RLS.
I use codene. Lots of. 60m at about 7.00, 60m at 10:00 and another 60m before I sleep at about 1:00 the doctors advise that paracetamol taken at the same time helps so I thake them but I sleep very well on this.
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How many nights should I try going without tablets?
Melatonin? How many have tried it?
How do i change from Ropinirole to Pramipexole
Ropinirole and augmentation, when do I change drugs and how will I cope?
Feeling somewhat lucky but also dreading the future. 
