As many folk have either not heard of RLS or do not understand the impact of it on our lives, I was thinking that a better way to describe it was to equate it with sleep deprivation. That is exactly my experience with RLS. Even with the various medications I still have periods with little or no sleep and the impact on my life is constant tiredness, inability to sleep and very little of the dynamic lifestyle that used to characterise me. If I take enough medication to help me sleep then I suffer the side effects (usually tiredness, sore head, etc) and if I do not take enough then it is the same but with a dose of frustration as well.
So do you think that using the term "sleep deprivation" would be helpful in talking about RLS?
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RLSofManyYears
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Absolutely. Most of us on here have severe RLS and, even if on meds, have severe sleep disruption every night.
I find it a little odd that the RLS diagnostic criteria solely mention the sensori-motor symptoms of RLS and not the sleep problems.
This is possibly because the "hyperarousal" aspect of RLS and the role of glutamate has only been more recently discovered.
Yet it seems that most people first seek medical help for their RLS because they can't sleep. That's what happened to me.
So yes, I agree, sleep disturbance is a part of RLS.
I wouldn't want to overemphasise this aspect though. BOTH the sensori-motor and sleep problems are RLS.
It's just a personal observation, but I've noted quite a few members saying they've gone to a doctor because of the sleep disturbance and come away with a prescription for a sedative or even amitriptyline as if their RLS was just a sleep disturbance.
The sleep disturbance and potential sleep deprivation caused by RLS require a more specific treatment.
I can't claim to have an in depth knowledge of the neurotransmitters involved in RLS but I'll try and give a simple overview.
As part of this, it's useful to recall that the nervous system is made of specialised cells called neurons. These calls carry signals within the brain, from the brain to the body and from the body to the brain. The signals are carried electrically. However signals are passed from one neuron to another chemically by neurotransmitters.
In addition, various factors affect how "sensitive" or "excitable" the neurons are.
RLS is known as a sensori-motor disorder, i.e. it affects sensory neurons and motor neurons. "Motor" refers to neurons carrying signals to skeletal muscles, thus making us move.
In RLS the neurons are oversensitive.
I believe the first neurotransmitter found to be involved in RLS was dopamine. In some parts of the brain dopamine functions to calm motor nerves, i.e. make them less sensitive. Hence firstly dopamine and then DAs were used to treat RLS.
However, it has been noted that people with RLS also suffer with hyperarousal. This is a more general excitability of neurons and affects the level of alertness or arousal. Hard to believe but it has been observed that (untreated) RLS sufferers can still feel quite awake during the day, even if they've not slept well at night.
I believe it has been found more recently then, that a second pair of neurotransmitters have been found to affect RLS. These are GABA and glutamate. Normally these two balance each other. GABA makes neurons calmer and glutamate makes them more excitable In RLS there is an excess of glutamate which may explain the hyperarousal.
Restoring the GABA/glutamate balance can reduce the symptoms of RLS especially the hyperarousal aspect. Incidentally, this can also help other conditions where neurons are oversensitive, e.g. nerve pain, epilepsy, fibromyalgia etc.
Hence drugs which boost GABA/reduce qlutamate can treat these conditions, including RLS.
Thus drugs such as the alpha 2 delta ligands, pregabalin and gabapentin can treat RLS.
It's true that RLS symptoms can prevent falling asleep, but whether they are the sole factor in waking you up is dubious. It may be that people are more easily woken by symptoms because of hyperarousal. Many I believe, suffer early waking and poor sleep even in the absence of RLS symptoms.
Many thanks for this, a very helpful reply. I now understand why Pregabalin is recommended for rls and the role iron has in the brain. I've been on 300mg Pregabalin for a few years now and whenever I try to reduce it then the rls gets worse. I've also been taking ferrous bysglysinate 2 tablets every second day but there's no obvious improvement.I'm thinking that I should get my iron levels checked again but it will not be easy given the pandemic. What should the various expected levels be?
I can't remember the values exactly off the top of my head I believe the serum iron and transferrin levels should be more or less the same as for anyone. If they're low it might indicate iron deficiency anaemia. Transferrin saturation less than 25% is low.
The ferritin level is significant. Ideally for somebody with RLS it should be at least 200. If it's under 75, oral iron supplementation may raise it. If it's over then it's not that easy.
Hi, just read your explanation on hyperarousal, clear and simple, if there is such a thing with RLS. thank you on behalf of my partner who is the sufferer.
Yes, absolutely, the sleep deprivation is the worst aspect by far. I don’t know where the bit about hypearousal came from. I only wake up when my RLS wakes me and I stay awake till I can get it to wear off & then I can get back to sleep till another episode wakes me, usually 60 - 120 mins later. In the evening it’s just RLS stopping me from sitting still, but I’m never hyperaroused, just awake as I’ve been woken
I experience hyper arousal almost every night now. That’s why I still don’t sleep well even if My rls is under control. I wake up stay up play countless games of on line chess then finally at 5 am when it’s just about time to go to work I crash. It’s absolutely frustrating and scary.
Thanks. It’s so odd though as I don’t have hyperarousal at all, not even a tiny bit. Wonder how many do and how many don’t? Sounds as if it isn’t one single syndrome. Might account for fact there are so many differences between us all.
Hi RLSofManyYears, agree lack of sleep is a huge factor in RLS. Can you share what medication you are currently on to treat the RLS and your sleep issues?
I've been through the max 4mg of Ropinirole and back to zero, then on to Pramipexole and then Temgesic. I've found that the effect of the Temgesic was wearing off and so I've gone back onto the Ropinirole. The plan, mine as the consultant has nothing else to help with, is to stay on the Ropinirole for a couple of months and then go back on the Temgesic (it worked for 3 months on 200mcg). So I'm taking 3 x 0.25mg in the evening. I've also been taking 3 x100mg Pregabalin for at least 4 years now. I've been taking iron supplements for a year now but with no difference to my rls.I've been on the Ropinirole for a week now and sleep is 1 hour then up for an hour and so on. Fortunately I am able to do some things in the night to distract my mind for a hour. Last night I did some sanding and tidied the garden at 5am (I live in Scotland and so there is light from 4am). However I feel and act like to a zombie and I'm concerned about the long term impact of this on my life.
Hello, be glad to share. I am taking 900mg GABA (300 a.m. and 600 p.m. and something new called MAG R&R (Muscle Recovery and sleep Support by saltwrap.com Phone: 866 444 3267. I ordered MAG R&R for my husband for leg cramps. One night after 3 days no sleep due to RLS, he told me to try the MAG. I did and it has been over a week and no RLS. One night had RLS very mild, so I wrapped my food with an Ace Bandage and it went away. Currently going through augmentation from Pramipexole. SLEEP: I wake up after four hours. Sometimes can't go back to sleep. I am grateful for the four hours. I hope this helps.
Hello, be glad to share. I am taking 900mg GABA (300 a.m. and 600 p.m. and something new called MAG R&R (Muscle Recovery and sleep Support by saltwrap.com Phone: 866 444 3267. I ordered MAG R&R for my husband for leg cramps. One night after 3 days no sleep due to RLS, he told me to try the MAG. I did and it has been over a week and no RLS. One night had RLS very mild, so I wrapped my food with an Ace Bandage and it went away. Currently going through augmentation from Pramipexole. SLEEP: I wake up after four hours. Sometimes can't go back to sleep. I am grateful for the four hours. I hope this helps.
I have solved the intense RLS (with iron supplements) and in the days that I didn't sleep - with maybe 2 hours sleep I was still able to get up and go to work with no real drowsiness. I still have the insomnia and mostly it's the hyperarousal - excitotoxicity of Glutamate over GABA and it continues into the night. Most sleep supplements are trying to increase GABA - the relaxing neurotransmitter over Glutamate.
I experience the exact same thing. Either not enough meds to deal with the problem or too much and I get drowsy during the daytime. I sleep through classes I teach, I’ve fallen asleep at the wheel too. Very dangerous.
Be aware that dopamine agonists, such as ropinirole can cause "sudden daytime drowsiness" which should be reported to the DVLA. Many don't because you'd probably be banned.
Yes, I could not agree more, sleep deprivation is a true way to describe our lives. We have been denied any quality of life and this has a flow on impact on those we live with. For example, when my partner makes a suggestion to go on an outing or to get out and do something, I find myself saying, "you go, I'm tired or don't feel up to it " Very sad, I feel like I have lost half my life or more.
You are absolutely correct. Most people don't know how serious of a problem RLS is. I have had many medical issues with several surgeries. (car accident) Presently, I have to have surgery on my back. My doctor has to perform two surgeries three days apart. Put a rod with 10 discs. I have osteo and am taking a chance on bone breaking, but without the surgery I will get paralyzed. The pain on legs and back is extreme and can barely walk. I feel that RLS is worse than this because at least with the back issue I could sleep. It wouldn't be a 24, 48 or 72 hour nightmare. I was there at 72 hours without sleep and then passing out. Since I started taking the above supplement, I am sleeping. I waited for over a week to share it because I wanted to make sure that it was real. Everything else I have tried has only lasted maybe two days. May God bless you and give you patience and healing.
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