Day time RLS

[TeddyRupert]

Hello. A quick question for Sue. I've read now a couple ot times on these pages that day time RLS isn't the same as night time RLS. I can get terrible bouts of it especially when travelling . It feels like RLS I can only get relief through movement. Thanks to you all for the wonderful advice .

[Joolsg]

RLS mostly happens in the late afternoon and evening and it can wake you during the night. It follows the dopamine cycle and dopamine is lowest from around 5pm until 6 am the following morning.However, if you are taking dopamine agonists, the drug itself feeds the disease, making it more and more severe AND causing RLS symptoms earlier and earlier in the day.

There is also PLMD ( periodic leg movements disorder) which causes leg movements at night during sleep. Usually the patient is unaware they are moving. The only symptom is extreme daytime tiredness. Treatment is the same.

As you are experiencing daytime RLS , Sue and Amrob have suggested you increase the pregabalin to 150mg at night or adding a daytime dose around an hour before the normal time you start to experience daytime symptoms.

[Tw99]

I get it when I'm travelling too, I always book extra leg room even though I'm 5"2 lol. I also get it when sitting in a theatre or cinema etc. I do sometimes wonder if it's psychological at those times as I know I'm restricted but it is very real regardless

[ziggypiggy in reply to Tw99]

Don't underestimate the psychological aspects of RLS. Being in places or positions where you may have experienced RLS before can be a trigger. Being around someone or taking care of someone who is actively suffering from RLS can be a trigger. Just reading this forum too long or thinking about RLS can be a trigger.

[Jauny in reply to Tw99]

This is exactly what I get. I avoid evening shows for this reason but now also get it in matinées. I also get it on planes and more recently on a long bus journey. I'm on no medication ( despite my best efforts)

[SueJohnson]

Not sure what your question is. It can be the same as night time and usually happens when you sit down or take a nap and as mentioned especially when traveling or anytime one is confined like in movie theaters. Or when augmenting on a DA.

[TeddyRupert in reply to SueJohnson]

Thanks to all of you for swift replies and clearing up my query.

[Twitchyfeet]

Hi! I am a retired teacher and I would get an onset often about midday. I would stand up in the staff room to eat my dinner then read stories to the children standing up or kneeling down (to cut off the blood supply - to ease discomfort). Travelling and driving my car in the afternoon on the way home would be awful and several times, I would stop to stretch my legs so I could continue on my journey. Looking back, I experienced some very dangerous journeys, jiggling my legs. My RLS has moved to the evenings since taking medication. 🤷🏽‍♀️

[Madlegs1 in reply to Twitchyfeet]

What medication are you taking now?

[Twitchyfeet in reply to Madlegs1]

Pregablin since three weeks ago, with a view to taking something else or combo, once I’ve had a further appt with my neurologist.

[art37]

I have found it exactly the same, day or night. I get it on the dialysis machine which is horrible, four hours of it and am exhausted when I come home. As soon as I stand up at the end it stops.

[Twitchyfeet in reply to art37]

Oh that’s horrendous! You poor thing!

[Bananie123]

Rls can wake me up. Its with me 24/7 and is only controlled with gabapentin. I've had it badly for 12 years, though have suffered bouts since I was 16. It is worse at night when even on a good night, the downie is often on the floor. The dog has learnt not to sleep on the bed, in case he goes flying through the air. If I know I'm going to have to sit for a long time during the day, I do take an extra gabapentin, which usually helps. Daytime rls is very real. If you suffer with it, do not let anyone tell you otherwise. It's real. I take gabapentin on waking, tea time, mid evening and bedtime. By 8am my legs are as bad as they can be at midnight, if I've forgotten a dose.

[Twitchyfeet in reply to Bananie123]

I feel your pain x

[Bowie4eva in reply to Bananie123]

Bananie , I’m the same. I can wake up with it and it can be as bad in the morning and daytime as at night. I have MS, so my movement is very restricted, which I think has contributed to making it worse. Bloody annoying. Anyway, hope you can find medication - gabapentin is better than nothing, and I take codeine at night. Best wishes to you - and again, thanks to all for this forum.

[SueJohnson in reply to Bananie123]

My laugh for the day - in case he goes flying through the air🤣🤣🤣

[Bat3353]

in my experience while working since I was constantly moving it never bothered me only at night it would act up when I retired that’s when it kicked in 24 7 that’s when I added the neutro patch

[C82021 in reply to Bat3353]

Problem when traveling. For the "first" time I'm going to add the Rotigotine 0.1 patch before my flight. I am going to pre trial it first to see if any side effects will occur. My normal treatment is 350mg Pregabalin. (My Dr gave me the daily patch.)

[Bat3353 in reply to C82021]

I started with that but after awhile it stopped working the patch takes a week to buildup in the body for it to work try and start it in a week prior to leaving it I can imagine a10hr flight I did that 30yrsvago and wound up standing in the back I have no side effects good luck

[C82021 in reply to Bat3353]

Interesting, my Dr said it would take effect in an hour or so. This was to help get me through the flight or when going to a theater event. I really want this to work. Thank you for your reply but it now has me worried.🙁

[SueJohnson in reply to C82021]

You might ask instead for .25 mg of ropinirole.

[Bieler]

Have you tried Tramadol? It’s been a Godsend for me and others on this forum.

[Bananie123]

Yes, I take Tramadol first thing in the morning and another at bedtime, for the pain associated with the rls. If I accidentally forget it at night, my legs are sore and 'heavy' all day and I can't walk far with the dog.

[Eryl]

Your day time RLS could be triggered by what you're having for breakfast or lunch or a combiation of both. A favourite breakfast si cereal, tost and fruit juice, if you're having any os those consider changing to a high protein reakfast for a week or two. Margarine, which many people use cotains an artificial preservative (potassium or sodium sorbate) which is a known neuro toxin and will set my RLS off in 30 mis or so causing uncontrolable jerking. The cereal or porrige oats is high in carbohydrates which will spike insulin and cause neuro inflammation. if you have a mid morning coffe or tea with sugar there's another dose of carbohydrates and another driver of neuro inflammation. For lunch you may be having a sandwich so another driver of inflammation and if they'r shop or train bought another dose of sorbate preservative.

Try a high protein breakfast like eggs, bacon, sardines etc and avoid the carbs and preservative. If this moves the onset of RLS to later in the day then you should avoid these foods in all meals.

[marsha2306]

I, too, get some daytime RLS. Every morning I sit and read the paper and other articles on my computer & sometimes I'll get some RLS. Also, if I'm sitting and watching TV in the afternoon I'll have to get up and walk around. If definately feels the same as my nighttime RLS. And, even though I take gabapentin morning, afternoon and evening (for nerve pain as well) it still happens. I've had iron transfusions almost yearly too.

[Doped]

My rls got progressively worse over the years until it was there almost all day, through this forum I discovered the DAs, in my case Neupro patch 2mg, were causing augmentation and I've been cutting back a little at a time for the last 7 months, current dose .25mg. It's been an incredibly difficult journey but I'm now almost free of day time symptoms, I can travel by car, train, bus and plane almost without symptoms, I'm currently sitting comfortably on a train and haven't had to get up and walk around, bliss! My nights continue to be dreadful but I'm hoping that onc I'm completely off the DA things will settle back to 'normal' IE, relative peace after 3 or 4am. I will then seriously look at diet and try suggestions by Early, thanks!

[HipHop1972]

Hi TeddyRupert. I know what you mean I started to get RLS day and night due to being prescribed dopamine agonists (Ropinirole and Niro Patches) going to cinema, theatres restaurants and even kicked in when I was driving which is unusual as concentrating on an activity usually alleviates it. Life was intolerable until I found a Neurologist, through this forum and started treatment with Buprenorphine, but I had to slowly come of the Ropinirole first, I was taking 6mg per day and it took 13 months, not easy but the best thing I’ve ever done and so worth it.

May I suggest you ask Sue and or Joolsg for specific advice linked to the medications you are currently taking and especially what haaa been prescribed for your RLS.

Good luck and kind wishes HipHop1972