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?

[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.

[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.