RLS starting earlier in the day in sp... - Restless Legs Syn...

Restless Legs Syndrome

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RLS starting earlier in the day in spite of no DAs

Virginic profile image
24 Replies

Hello there

I have noticed how my 75 y.o. husband’s RLS has been (almost literally!) kicking in progressively earlier in the day although he has never taken DAs and still doesn’t want to. Today the movements started at 1.30 pm. Earliest ever. So it seems to me he’s suffering from what is often described as DA augmentation regardless. Not that I think he should take DAs but I wonder if anyone else is experiencing this?

I know many on here suffer much worse and have RLS all day and have their sleep (and thus really their whole lives) destroyed by it. But Still I see my husband’s RLS misery getting worse and that feels bad enough for now.

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Virginic profile image
Virginic
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24 Replies
SueJohnson profile image
SueJohnson

Has he had his ferritin checked? If so what was it? Is he taking any medicines or over the counter supplements?If so what are they? Many can cause RLS symptoms to get worse. Has he considered starting on gabapentin? That is now the first-line treatment for RLS with no danger of augmentation. My RLS symptoms are completely controlled by gabapentin as are many others. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at

Https://mayoclinicproceedings.org/a...

Virginic profile image
Virginic in reply toSueJohnson

Thank you for your thoughtful response Sue. I’ve suggested Gabapentin to him but he’s very closed to all treatments, tarring them all with the same brush is what I think, but then I’m not him. He does take a vitamin B12 every day, however, and Zolpidem to help sleep.

SueJohnson profile image
SueJohnson in reply toVirginic

There is no problem with the Zolpidem., and obviously not with the B12. You might want have him read the Mayo Clinic report. It's a shame he is so stubborn about the gabapentin and instead prefers to suffer. Many people have RLS earlier in the day as well as at night. Magnesium helps some people. Some things that make their RLS symptoms worse for some people are sugar, nicotine, alcohol, caffeine, stress and definitely melatonin. Has he had his ferritin checked? Getting it to over 100 helps 60% of people with RLS.

Virginic profile image
Virginic in reply toSueJohnson

👍I’ll keep dropping hints! ✨

Eryl profile image
Eryl

The reason that rls is absent in the mornings but appears later in the day is because of diet. The most likely cause is raised insulin which causes inflammation of the nerves. This is caused by foods with a high gycaemic index. There are other foods which can contribute to inflammation and you'll find those listed on the internet. Iv'e completely eliminated my rls by changing my diet without medication.

Virginic profile image
Virginic in reply toEryl

Very pleased for you. Sounds a plausible reason. I’ll look into it some more.

PoorRichard profile image
PoorRichard in reply toEryl

Eryl - I, too, have found relief from RLS symptoms by adopting a low inflammation diet. Thanks for the information you and others have provided. I am happy to say I'm off gabapentin entirely. I also take iron bisglycinate every other day.

Jumpey profile image
Jumpey

It could be caused by another medication that triggers RLS. What else does he take? Anti- depressants. anti- histamenes,anti- nausea and acid reflux meds are all common causes.x

Virginic profile image
Virginic in reply toJumpey

He’s very careful with other meds. Occasional half paracetamol for a headache, for instance, and he knows about effects of anti-histamine use.

Butterflysun1 profile image
Butterflysun1

I’m afraid mine now does the same. I have no exacerbating factors. I blamed taking Pregabalin for years before it stopped working ( not a DA obviously ) but it may just be the passage of time. I have had recent quite extensive communication with the absolutely wonderful Dr Buchfuhrer who as many know is exceptionally knowledgeable and caring. Because I have already tried Pregabalin his advice was if Ferritin is less than 100 or so then IV iron might be tried though there is only a 60% success rate. He said it was very hard to get iron to the necessary levels using oral iron.So, as nicely as possible he suggested that I either try Buprenorphine or suffer!

Pregabalin has fewer side effects than Gabapentin. I used to say don’t touch it as I thought it caused augmentation ( by a different route ). But it might buy time. I found it immediately effective at 50mg to start with..

Of course as others have said make sure you are on no other meds which could make it worse & which are safe to stop

Virginic profile image
Virginic in reply toButterflysun1

Thank you! Pregablin may have to be considered at some point. But of course he’s got to want to try it, like anything else.

Butterflysun1 profile image
Butterflysun1 in reply toVirginic

I understand his reluctance. I am very wary of medicines too, especially those affecting the brain. My RLS is very severe as your husband’s sounds to be. There is something very scary about it all & the thought of making it even worse somehow or causing something even harder to deal with is awful - as you know RLS is really awful to live with & you need a lot of strength to get through each night. It’s a horrible thing to have. Please give him my sympathy

Virginic profile image
Virginic in reply toButterflysun1

So true! I would really hate to have it myself. I will give him your symps. Than you!

Jerry57 profile image
Jerry57

I've had RLS for over 30 yrs, and have been taking tramadol over 20 yrs. My RLS will start at different times of the day, depending on many factors such as quality of sleep the night before, diet, stress, activities of the day which do or don't keep my mind active, but regardless of my RLS pain level, I never take the tramadol early. I wait till after 3 pm and it starts working in about 2 hours.

So, to get through difficult afternoons, I use a variety of things, sometimes a stimulant like caffeine (usually coffee, but also pills), or kratom or exercise, or I find some stimulating activity like an outdoor project - yard work, or cutting firewood, shoveling snow, etc. something to get me through till 5pm when my tramadol takes it all away.

It would be nice if your husband could tolerate an opioid. They have helped me greatly. I was able to overcome the constipation with diet changes, but I know we are all different. Good luck!

Virginic profile image
Virginic in reply toJerry57

Thank you Jerry!

Virginic profile image
Virginic in reply toJerry57

Actually, it’s interesting you mention stimulation/stimulants, as my husband’s RLS tends to let up when he’s watching particularly tense thrillers. Weird!

Jerry57 profile image
Jerry57 in reply toVirginic

Yes, same here. Boring TV, movies, or reading make my RLS worse, but stimulating TV or entertainment can calm my symptoms.

Butterflysun1 profile image
Butterflysun1 in reply toVirginic

It’s fascinating that aspect & as far as I know no one knows why, but I understand it’s common & me too. Right now it’s just after 4am, I’m trying to ‘turn off’ yet another episode. The hot bath I’ve just had hasn’t done the trick ( often does ) so I am now about to have a cuppa, standing up, doing a puzzle & hopefully will be able to sleep again soon ….. till the next time which could easily be in an hour or 2. So, hi to all of you doing the same!

TheDoDahMan profile image
TheDoDahMan

I think it may just be natural that, left untreated, RLS symptoms gradually become more intense and appear earlier in the day. I tried a zillion things, but until, at age 72, I got a prescription for low-dose methadone, nothing helped. I'll GLADLY stay on this for the rest of my life, for the blessed relief it gives me.

Forget the DA's, and forget the stigma against opioids; a person can't live on 2-3 hours of unsatisfying sleep per day.

Virginic profile image
Virginic in reply toTheDoDahMan

👍 Yes, at some stage he may have to resort to that.

Ducatidave profile image
Ducatidave

Please search for my experience before you go down any medication route.

SueJohnson profile image
SueJohnson

Some things that help RLS for some are weighted blankets, avoiding foods that cause inflammation, compression socks and orgasm. When I used to get RLS I did the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl... In addition, I walked for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walked. It worked every time although I might wake up later at night and have to do them again. Actually on the calf stretch I didn't hold it for 20 seconds, but instead did the exercise for 20 - 30 times. I also pushed my heel back before I leaned forward. I, also moved my leg to each side when it is stretched. On the thigh stretch, I only held it for a few seconds, but then repeated it 6 - 10 times.

Virginic profile image
Virginic in reply toSueJohnson

Thanks Sue. I think my hub does do some sort of stretching exercise now and then which he says helps for a short while. The inflammatory foods issue, though, would be new to him.

Pte82 profile image
Pte82

I learned a buildup of lactic acid from a deficiency of activated thiamine is associated with RLS. There is a form of thiamine called Benfotiamine with high absorption offering higher levels in the blood than water soluble forms however other thiamine forms will also provide lactic acid clearing. Be aware of the anti thiamine factors that diminish or destroy thiamine. Search on "stuttering anti thiamine factors" for a comprehensive list found in the stuttering forum. Adequate magnesium is needed to supply enzymes to activate thiamine. Like thiamine, loss of magnesium can result from pain, stress and caffeine. A list of others can be found searching on "krispin magnesium". Please consult with your health care professional before using any supplement.

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