Hi,I have had RLS for at least 10 years. Initially, only in summer and in my legs.
However, it's got much worse since last year and I get it even in winter and in my arms and whole body sometimes. I get the pain during the day too now.
It's not due to augmentation as I have only used Ibuprofen in the past.
I started Pregabalin 150mg a month ago in the evening which works. The side effects have faded too.
Since the pain is quite bad during the day, can I take Pregabalin during the day too or shoukd I switch to Gabapentin?
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Nazgolapkhan
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You can take pregabalin during the day too. No reason to switch to gabapentin.
Is it painful RLS you are getting during the day? Or just pain without the RLS feeling? If painful RLS then yes take pregabalin. If there is no RLS in the daytime I would check with your doctor as to the cause.
Can I ask who your doctor is and where s/he is as so few doctors are knowledgeable about RLS and keep prescribing dopamine agonists. I keep a list of doctors in case someone else needs one
I am from UK but currently residing in Saudi Arabia. The doctor tried to put me on Sifrol but after doing my own reaearch and joining the forum, I told him I didn't want Dopamine and wanted Pregabalin!
I had several blood tests and nerve stimulation tests over the years ... Everything is normal.Yes, movement relieve the pain n tingling and crawling sensation. Daytime pain is less severe than evening. Previously, it was only evenings.
I frequently get daytime RLS Jools, which is frustrating and annoying, but I wouldn't describe it as painful. Just the usual aggravation in my lower legs and a desperate need to get up and walk around. It often happens when I'm trying to have a quiet read of the paper online in the morning, and usually if I've been sitting for too long. So maddening! ☹️
It does happen. RLS is usually more common in the early evening and nights because RLS follows the dopamine cycle.Are you still med free? Did you start any iron therapy?
Still med free. My GP hit the roof when I suggested an iron infusion, because we have haemachromatosis in the family. My iron is very low, however I have tried iron supplements and magnesium supplements long-term and neither seem to make any difference at all to the RLS. I haven't identified any food or drink triggers either, apart from times like now, when there are a lot of sugary treats about, crying out to be consumed. I lurch between very difficult periods when I'm up half the night, and quite long stretches where I don't have much trouble other than frustrating day or evening RLS. The daytime RLS used to be a big problem at work, having to always find excuses to get up and walk about, but much better now that I'm mostly retired and can work at home. Happy New Year to you ☺️.
I read that it can get worse over time. I donk drink nor smoke. Have one coffee per day and I am not into processed food and takeaways. Blood tests all clear.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
I always read your wonderful replies. Mine is a long RLS story and awful treatment by NHS consultants etc. I’m now under a consultant -Private of course in London who is an RLS specialist. Still trying to get on top of the Rls now with Gabapentin after finally getting off the dopamines but he has also prescribed me melatonin which I haven’t tried yet he thought it may help with the anxiety I was having around it all in the evening and at night but I note this is one of the ones to be cautious of on your list ? Why is this do you know ? Many thanks Hannah
He's clearly not an RLS specialist if he's prescribing melatonin. It will send your RLS through the roof.For anxiety, gabapentin usually helps. Unless you are one of the minority that experiences anxiety FROM gabapentinoids.
You could ask for a low dose of diazepam for the anxiety- which should settle as your RLS symptoms settle and your dopamine receptors start to calm down after DAs.
Just to add to those who do experience dytime RLS so you know you're not unique:
I get it during the day occasionaly also. Generally, it happens when trying to take an afternoon nap (and about 30 minutes into the nap). In the evening, it might occur if I'm chiiling out while watching TV or reading. This is somewhat consistent with Joolsg's comment about circadian rythm - it takes more of a resting situation at noon than it does later. But always just when being pretty still.
Interestingly, I'm trying to switch from buprenorphine to gabapentin. (After 13 months being off DAs, my dopamine receptors seem to have healed enough that gabapentin works, whereas it didn't previously. ) I am not getting symptoms during afternoon naps being on gabapentin. Sounds to me like you could increase your dosage a bit. 150mg of pregabalin is equivalent to 900 mg of gabapentin. That is a fairly low dose for RLS. Maybe you can get some pregab in a low dose (not sure if it comes in 25mg, or maybe 50mg), and either increase your evening dose or take it during the day? Medication experimentation seems to be our lot in life in dealing with this nasty condition....
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