My husband has RLS: Hello Im new to... - Restless Legs Syn...

Restless Legs Syndrome

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My husband has RLS

Carmelbyrne profile image
9 Replies

Hello

Im new to this site and am finding all the information very informative, thank you.

My husband developed RLS about a year ago so I'm trying different remedies and do feel there is a link with low iron as he had this issue a few months ago.

He doesn't sleep very well at night but not always due to restless legs, he just wakes often and finds it hard to settle again.

Looking forward to learning more!

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Carmelbyrne profile image
Carmelbyrne
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9 Replies
SueJohnson profile image
SueJohnson

Since I don't know what he knows or what he has tried, I will give my usual information: When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test and fast after midnight. He should have his test in the morning as that is when his ferritin is lowest. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and his transferrin saturation to be between 20 and 45. If his transferrin saturation is OK, then if his ferritin is less than 75 he should take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. He should take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If he has problems with constipation he should switch to iron bisglycinate. If his ferritin is between 75 and 100 or if his transferrin saturation is below 20, he probably needs an iron infusion since iron isn't absorbed as well above 75. If he takes magnesium he should take it at least 2 hours apart since it interferes with the absorption of iron. He shouldn't take tumeric as it interferes with the absorption of iron. It will take several months for the iron tablets or iron infusion to slowly raise his ferritin. He should ask for a new blood test after 8 weeks if he has an iron infusion or after 3 months if he is taking iron tablets. Above all he shouldn't let his doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead he should ask him to prescribe gabapentin. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks to be fully effective. After that he should increase it by 100 mg every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate 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, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.

SueJohnson profile image
SueJohnson

Medications that make restless legs worse: sedating antihistamines not all antihistamines, SSRI and SNRI antidepressants, tricyclic antidepressants, statins, diuretics, lithium, melatonin,calcium blockers, calcium antagonists, steroids. central nervous system stimulants, dopamine antagonists, many but not all anti-nausea medicines, some but not all antacids, some but not all beta blockers, some but not all anti-hypertensives, some but not all blood thinners, some but not all anti-anxiety, many medicines that treat bipolar and other mental health problems, many medicines that treat epilepsy and many drugs that treat GERD. If he is taking any medicines or OTC supplements, if you list them here, I can tell you whether they make RLS worse and if so can perhaps provide a safe substitute.

Carmelbyrne profile image
Carmelbyrne in reply to SueJohnson

Thank you for this info, all good to know. At the moment we are testing out the iron bisglycinate and magnesium malate which I've ordered online - instead of different types of iron and magnesium.

Will update how these go...

SueJohnson profile image
SueJohnson in reply to Carmelbyrne

It's really best to test his ferritin before taking iron tablets or has he already?

in reply to Carmelbyrne

Be sure to take the Bisglycinate one hour before bed on an empty stomach. It rids me of RLS for one night so must be repeated every night. Numerous people on here get relief immediately. Please think about taking the magnesium during the day away from the iron.

eliz45 profile image
eliz45

I have tried CBD oil. 2 drops under tongue. Dont swallow for one minute. Will last 3-4 hours. Then do it again in the night. Better than no sleep all night.

Nikos64 profile image
Nikos64

one thing that really exacerbates RLS for me is MSG. Mono sodium glutamate is added to food as a flavor enhancer. Lots of restaurants add it and also add tons of salt. If I eat food with MSG I will have a *terrible* restless night. I’m not sure if everyone else with RLS will have this negative reaction but I think it’s something to watch out for.

SueJohnson profile image
SueJohnson in reply to Nikos64

Great point.

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