just curious: I'm just curious if other... - Restless Legs Syn...

Restless Legs Syndrome

16,150 members10,236 posts

just curious

KickininAz profile image
KickininAz

I'm just curious if other people experience this. When I read a book or watch TV and get drowsy, start nodding off, suddenly my RLS kicks in big time, no matter if is is day or night. Since I am retired, I have no work hours, so I read or watch TV during the day, and when I begin to fall asleep in a totally relaxed state, I am suddenly wakened up by severe RLS. As long as I keep busy, it does not happen. Is this just happening to me, or do other people have this experience?

46 Replies

Hi, the good news

Part of what you say is one of the diagnostic criteria for RLS, i.e. when you relax, sit or lie down, then the symptoms start. It usually takes a few minutes, but this is normal for RLS.

The bad news (maybe)

RLS (again according to the diagnostic criteria) is usually only occurs in the evening or is worse in the evening. If it does occur earlier in the day as intensively as it does in the evening, this is not considered normal.

Some people do experience symptoms during the day right from the start, but even then, they are usually worse in the evening.

The significant question then is -

Originally, were your symptoms just in the evening? It's better if the answer is "No".

Three other questions -

Have the symptoms themselves got worse i.e. more intense? Better if "No".

Have you noticed that it takes less time for them to appear? Better if "No".

Have you noticed symptoms in your arms or torso? Better if "No".

If the answers are yes then you may have augmentation.

Ropinirole?

KickininAz profile image
KickininAz in reply to Manerva

Thank you for your reply Manerva. To answer your questions, I am pretty sure I have had RLS since childhood though there was no name for it then, none my doctor gave me. I was finally diagnosed in 2005 at the age of 55. I have been on ropinerole since then. I do remember having RLS symptoms during the day if I tried to nap. Not as bad as at night though.

I only have symptoms in my thighs, no other body parts. But the symptoms have definitely gotten worse over time, starting earlier on some days. I am sure it is augmentation as you described. What should I do?

Manerva profile image
Manerva in reply to KickininAz

There's several things you can do for augmentation.

One is to have a blood test for ferritin, if it's less than 75, you can start on an oral iron supplement.

Two is you can check to see if there's anything that's making your RLS wirse. This could any one or more of a long list of medications. It could also be something in your diet.

Three, as you're taking ropinirole, the best thing you can do is to stop taking ropinirole.

You must not do this suddenly. It also needs to be reduced in small steps over a relativeky long time.

This is in order to reduce the withdrawal effects which you are likely to get. You can reduce it in steps of 0.25 to 0.5 mg, once every two weeks. You can make it more than 2 weeks.if withdrawals are severe. You can make reductions of 0.5mg at first, but you may find as the dose gets lower, withdrawals get worse, so cut by 0.25mg.

Withdrawals should settle by two weeks after you stop completely.

You can start taking a replacement for the ropinirole, if you wish, before reducing the ropinirole. The usual replacements are either pregabalin or gabapentin, (gabapentinoids). These take about 3 weeks to start working.

If withdrawals are really awful, i.e. worse symptoms and sleeplessness there are other medications which can help.

Of course, you will need to discuss these changes with your doctor

If you need more detail. Don't hesitate to ask.

KickininAz profile image
KickininAz in reply to Manerva

Thank you Manerva. I really appreciate your information. Really, you know far more than my family doctor, he is not well read in RLS I fear. I may try to see a neurologist and ask him/her to help me get off the DA ropinerole. I am dreading it, but I know I must eventually as, in addition to the augmentation, the ropinerole is just not as effective as it used to be. I did get help from it for 15 years though, so that is something good.

Manerva profile image
Manerva in reply to KickininAz

Yes it does sound as if you need to move on from the ropinirole.

Shame your doctor isn't helpful.

best wishes

My rls got a little better after I started keeping busy outside and taking walks and exercising a little,it will help.

Omegadcuj profile image
Omegadcuj in reply to Runedrun26

Mine did the exact opposite lol that's the problem. No one solution fits everyone :( I still go for walks but in moderation.

I often wake up at night and my legs are very restless, so restless that it is very difficult for me to go back to sleep. When I wake up in the morning my legs are restless again and I know that I have to get up because I can't sleep anymore. The same thing happens when I take a nap. By the way, it is completely normal that you cannot sit still during the day, e.g. at the cinema, in the theater, in waiting rooms, etc. if you have RLS.

Manerva profile image
Manerva in reply to silkyreg

I wouldn't say it is completely normal to have symptoms during the day.

Some people do experience this from the very start, however, the diagnostic criteria are fairly clear about this.

Daytime symptoms is probably more likely to be due to augmentation.

I never had symptoms during the day until I suffered augmentation.

silkyreg profile image
silkyreg in reply to Manerva

This is the official consensus criteria of RLS by the International Restless Legs Syndrome Study Group (IRLSSG) "The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day."

irlssg.org/diagnostic-crite...

Manerva profile image
Manerva in reply to silkyreg

Yes you're right the diagnostic criteria do say that.

It's still not completely normal for people to have RLS symptoms during the day. Many people don't. For it to be completely normal everybody would have to have symptoms during the day.

In additon the same criteria also state

"When symptoms are very severe, the worsening in the evening or night may not be noticeable but must have been previously present"

If somebody does have symptoms during the day then I usually ask two questions

1) Are the symptoms during the day as intense as the symptoms at night?

2) Did you originally have symptoms during the day or has this developed over time?

A If they're worse at night, you might say this might be considered normal.

B If you've always had symptoms during the day then this may be considered normal.

Alternatively if symptoms are as intense during the day as they are at night and originally you didn't have symptoms in the day but have developed them then you may be suffering augmentation.

Further questions about medication, name, dose and length of time taken are also needed.

To quote the UK NICE guidelines on RLS

"Augmentation may be considered when -

Maintained increase in symptom severity develops despite appropriate treatment.

Maintained increase in symptom severity develops following a dose increase."

If augmentation is suspected then there are other questions that help tell the difference between "normal" daytime symptoms and augmentation.

I never tell anybody that says they have symptoms during the day that this is normal because they may be suffering augmentation without having some answers to the above questions".

Once it's confirmed that is either augmentation or not, then there are (different) things that can be done.

Augmentation can be treated so I'm not sure why I'd say to anybody, it's normal to have symptoms in the daytime when in fact their daytime symptoms could be entirely eliminated.

You could ask yourself the same questions, which is why I replied to you. You seem to accept that it's normal for you to have daytime symptoms. Perhaps your daytime symptoms are due to augmentation.

If that's the case you can do something about it.

People at most risk of suffering augmentation are those taking a dopamine agonist (DA) for RLS, i.e. pramipexole, ropinirole or rotigotine.

Pramipexole is the worst, having the highest risk of augmentation. Rotigotine has the least risk, but still a risk.

The longer the DA is taken and the bigher the dose, the greater the risk of augmentation.

For example the risk of developing augmentation due to taking 0.5mg pramipexole is 7% per year, year on year. So after 10 years 70% of people suffer augmentation and after 14 years it is virtually inevitable.

You may find this article helpful.

sleepreviewmag.com/sleep-di...

best wishes

silkyreg profile image
silkyreg in reply to Manerva

I took Antidepressants and they can cause RLS but I was fine for years and had no symptoms. Then at the age of about 40 the illness started and became worse and worse and I had RLS not only in the evening but also during the day. My neurologist said, that restless legs have to occur also at daytime or it wouldn't be diagnosed as RLS but as PLM (periodic limb movement) and prescribed Restex and other medications, Pramipexole wasn't his first choice. Now I am off the Antidepressants for 2 years and even don't take L-Thyrox for some weeks (that is considered to cause RLS as well) but my condition didn't change a bit. And even that I am off of any RLS medication for over 2 months I still have RLS during daytime. Not the whole day long but up and then for some minutes an attack and yes, these attacks are as bad as the ones in the evening. The only difference is that they stop after some time while the RLS at night don't stop.

Manerva profile image
Manerva in reply to silkyreg

It's not exactly true that antidepressants cause RLS, they are known however to make RLS worse in those people who already have it. I took an antidpressant in my late teens when I didn't have RLS and it made no difference. However, decades later an antidpressant made a signifcant difference to my RLS and I had to see a neurologist.

I'm afraid that anybody who told you that RLS has to occur in the day (i.e. morning or afternoon), is misinforming you. Perhaps they really meant while you are awake.

As you saw yourself from the diagnostic criteria it can be still RLS if symptoms "only occur" in the evening.

BUT, you have to be awake.

Periodic Limb Movement (PLM) usually occurs only when asleep, in which case it's called PLMS (PLM when Sleeping).

PLM can occur when awake, but then it's called PLMW (PLM when awake). This is quite rare.

Some people with severe RLS do experience involuntary movements but this is not PLM.

Restex contain levodopa which is not recommended for regular use for RLS as it has a very high risk of augmentation. Pramipexole may have been better as it carries a lesser risk, but it's still high.

Dopamine agonists such as pramipexole are no longer recommended as the first treatment for RLS because of the risk of augmentation.

Thyroid function can affect RLS, if your thryoid is underactive this can make RLS worse. Correcting the lack of thryoxine by taking L thyroxine could then help relieve the RLS. Stopping it then isn't really a good idea, not to mention your levels going down.

If you have RLS and aren't taking any medication then naturally, you will be experiencing RLS symptoms.

I don't know if it applies in your case, but once somebody's experienced augmentation, as I did, then really you're never the same again.

It may be that you get daytime symptoms anyway and if you're no longer taking a medication then it probably won't be augmentation.

If your symptoms are liming your uality of life then there are things that can be done to alleviate them. These are mainly to look at iron therapy, avoiding aggravating factors and perhaps taking an alternative medicine such as a gabapentinoid.

silkyreg profile image
silkyreg in reply to Manerva

Not only an underactive thyroid can cause RLS but the medicament L-Thyroxine as well: "Upon challenge and withdrawal of L-thyroxine, there was a significant change in the International Restless Legs Syndrome Study Group severity score...."

ncbi.nlm.nih.gov/pmc/articl...

Manerva profile image
Manerva in reply to silkyreg

Great, thanks for letting me know

KickininAz profile image
KickininAz in reply to silkyreg

I've been on levothyroxine for 36 years. What is an alternative med that won't aggregate RLS?

silkyreg profile image
silkyreg in reply to KickininAz

I'm sorry but I don't know if there is any other thyroxine medicament that doesn't aggravate RLS

KickininAz profile image
KickininAz in reply to silkyreg

Well then I shall have to maintain on levothyroxine, as without it I would die. I was hoping a different medication was available since L thyroxine seems to aggrevate RLS, but I will continue taking it then.

KickininAz profile image
KickininAz in reply to Manerva

You mentioned alternative treatment with something like a gabapentinoid? What is that medicine called so I can switch from ropinerole to it? I've had to keep increasing my ropinerole and now I take 2 mg or on a very bad day 3 mg of it. I could ask my doctor to switch me to a different medication if I knew the name of one. Thank you.

Ciduoc profile image
Ciduoc in reply to KickininAz

You may be thinking of Gabapentin. I use it and find it effective. I went on Gabapentin as I gradually went off Ropinerole. If you have Gabapentin in your system, getting off Ropinerole is much easier than doing withdrawal alone.

KickininAz profile image
KickininAz in reply to Ciduoc

Thank you Ciduoc, I will mention it to my doctor, my NEW doctor, as soon as I find one!

KickininAz profile image
KickininAz in reply to silkyreg

You have described my symptoms perfectly.

I don’t get twitches or movements if I nap during the day and it is almost always at night after I have gone to sleep. However I don’t tend to sleep during the day for longer than 30 minutes and at night takes just under an hour to kick in so it could just be that I don’t sleep long enough.

Join the club.

Hi,same thing happens for me,as soon as my brain wants to slow down my legs start involuntarily jumping.if I don't sleep at night my husband will say I should lie on the couch and have a nap,no such luck so I've given up trying,a vicious circle.

Manerva profile image
Manerva in reply to Whymelord

You may be suffering augmentation see my comments above

Whymelord profile image
Whymelord in reply to Manerva

Hi Minera,I only take one 0.18mg pramipexile at night,used to take 2 but cut down gradually, do you think I could be suffering augmentation.?

Whymelord profile image
Whymelord in reply to Whymelord

Sorry Manerva🤭

Manerva profile image
Manerva in reply to Whymelord

The signs of augmentation are -

Symptoms become more intense.

Symptoms start to occur earlier in the day.

Symptoms spread from the legs to other parts of the body.

The time netween relaxing, sitting or lying down and symptoms starting gets shorter.

Augmentation may occur following an increase in pramipexole.

Augmentation does not start when reducing pramipexole. If you had augmentation before reducing, then the above signs should gradually fade.

If you did not have the above signs before reducing and since reducing your symptoms have got worse then this is due to withdrawal effects.

Also, once withdrawal effects have declined, then you may still have RLS symptoms if you're not taking anything to replace the pramipexole.

KickininAz profile image
KickininAz in reply to Whymelord

Yes I WISH I could nap but I can't.

Whymelord profile image
Whymelord in reply to KickininAz

Oh,a wee nap daily would be heaven,I look across at my husband who can nap anytime and feel cheated.im in my 70s now,worked all my life ,now when things should be easier and relaxed I'm nearly afraid to sit down cause I know what can happen.

My short answer is yes . Daytime for me if resting is worse than bedtime. It's not always only if I am tired. Car rides. Watching tv oh air planes are severe. Just have to keep moving. Do you take any medicine for RLS ?

Manerva profile image
Manerva in reply to RLSdaily

You may be suffering augmentation see my comments above

RLSdaily profile image
RLSdaily in reply to Manerva

Thank you. Nope not now. I have been there done that with Augmentation. It was this group that helped me. That was a journey I do not EVER want to experience again.

I only take Gabapentin 400mg at bedtime and stay busy other times. 🙂

Manerva profile image
Manerva in reply to RLSdaily

I'm really glad you've recovered from the augmentation.

It's just a suggestion but the typical minimum effective dose of gabapentin for RLS is 900mg. The maximum is 2700mg.

I think I'm particularly lucky, but after getting over augmentation I only take 600mg gabapentin and rarely have any RLS symptoms at all.

RLSdaily profile image
RLSdaily in reply to Manerva

Yes I am happy on 400 mg at bedtime, it isn't 100% but I do sleep. I agree after being on RA and augmenting, either I am lucky also or I realize how much worse it could be.🙂

KickininAz profile image
KickininAz in reply to Manerva

Manerva please tell me how to get over augmentation.

KickininAz profile image
KickininAz in reply to RLSdaily

Is Gabapentin a good alternative to ropinerole then?

RLSdaily profile image
RLSdaily in reply to KickininAz

Manerva is really good at advice on everything and of course consult your doctor.I have personally done well in Gabapentin.

KickininAz profile image
KickininAz in reply to RLSdaily

Yes I take ropinerole.

KickininAz profile image
KickininAz in reply to RLSdaily

Me too....car rides trigger it with the vibration in the car

You have to keep active as much as you can short walks anything if you are able and continue to take your meds

Manerva profile image
Manerva in reply to Runedrun26

Not really a good idea to keep taking meds that are actually making RLS worse by causing augmentation.

Anybody suffering augmentation is best advisef to stop takings the meds that are causing it. In this case ropinirole.

Happens all the time with me, trying new med. at the moment but having terrible withdrawals coming off tramadol 😔

Yes, this has happened to me, and at low RLS levels, I find I can actually substantially turn RLS on and off by drifting into fantasy and coming back hard to real life. When we drift into not particularly realistic thought, or non-realistic, thought, fantasy, imagination, part of our brain, the default mode network, actually goes into overdrive, draining the brain's resources.

I also wonder if it's because we know that nothing real is likely to come of it, that we start to lack any dopamine reward we might have with positive realistic thought.

You got way more helpful comments. But heck yes! That is exactly what I get along with a wierd palpitation like feeling and the unresistable urge to get up. More like a panic, but something physiological not mental. RLS is a @#$ without a doubt :(

You may also like...