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Restless Legs Syndrome

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Restless legs

Incadolly profile image
17 Replies

ok I need help how can I get a decent night's sleep without RLS . I walk (can't exercise as hip problem) I have warm shower before bed but still have major problems but I don't want to go on medication any ideas

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Incadolly profile image
Incadolly
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17 Replies
SueJohnson profile image
SueJohnson

You probably can't without medicine, but I will try to help. First of all let's make sure you have RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. If it is RLS when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. 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 you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. 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, 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, massage including a massage gun and yoga. Now what medicines and OTC supplements are you taking? If you list them here I can tell you whether any of them make RLS worse and perhaps can provide a safe supplement.

Graham3196 profile image
Graham3196 in reply toSueJohnson

An excellent list of foods but I found I had to go a bit further. Based on my body's reactions I suggest that you try a more limited diet. All the above but add a FODMAP diet to it and eliminate all caffeine including decaf tea and coffee, Drink warm water. No gluten. Avoid onion and garlic. Try it for 12 weeks and see what happens but don't loose faith and sneak anything or it might waste all the time you spend dieting. I eat lots of rice with canned tuna, eggs, chicken and I have found that some sweet chilli sauce can be used to add a bit of flavour but start without the chilli sauce so you can prove it doesnt effect you. If at a resturant you can usually order bacon and eggs even if it's not on the menu. You can probably eat potato chips if they are guaranteed gluten free. I eat them from several shops because I believe them when they say gluten free.

I also eat a lot of rice cakes with non-diary margarine and peanut butter and my body seems to accept that. This works for me but we are all different. I am working on one banana every second day at the moment. I used to eat lots of bananas but then the legs became restless so I cut the bananas out completely

For other reasons I take 3000mg of Vitamin C daily and a couple of magnesium tablets, perhaps these help.

I've been doing this for years and I still make mistakes or decide to give up for a special occasion. Sometimes my departure from the diet has no effect and on other occasions the RLS comes back with a wallop. I cant see any logic in some of these except that I get a lot more sleep than I used to.

Joolsg profile image
Joolsg

Sue has given you an excellent response. As she also says, any meds you're on, including OTC meds can worsen RLS so let her know the list.Hopefully, raising your brain iron levels will resolve your RLS.

Dizlizz profile image
Dizlizz

Only one additional suggestion. In bed when rls is raging I stick offending leg out of the bedcovers and raise and lower it bend and straighten it until it is thoroughly tired out. Then I use the few minutes grace that gives me before it begins again to go to sleep.

SueJohnson profile image
SueJohnson in reply toDizlizz

Are you taking any medicine for your RLS?

Dizlizz profile image
Dizlizz in reply toSueJohnson

No I don’t take any medication. That seems like a whole other set of issues.

SueJohnson profile image
SueJohnson in reply toDizlizz

You certainly don't want to take any dopamine agonists like ropinirole or pramipexole since they can lead to augmentation, but gabapentin is safe and doesn't lead to augmentation and can completely control your RLS as it does mine. Yes it can have side effects, but 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. And you have nothing to lose by trying it as you can easily come off it slowly without any withdrawal symptoms. It can't lead to augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your 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... Also have you had your ferritin checked?

Dizlizz profile image
Dizlizz in reply toSueJohnson

Thanks for the suggestion re gabapentin. I also have Parkinson’s, unmedicated, and my reading seems to suggest that gabapentin inhibits the release of dopamine which would seem to be an undesirable outcome! My ferritin is a bit average but will follow up with your information.

Incadolly profile image
Incadolly in reply toDizlizz

Hi can't take gabapentin or pregablin as I have side effects to it

SueJohnson profile image
SueJohnson in reply toDizlizz

Check out this which indicates that gabapentin helps pubmed.ncbi.nlm.nih.gov/920... and I'm not sure how relevant this one is pubmed.ncbi.nlm.nih.gov/151.... and ehealthme.com/ehm/ds/gabape... I guess the main thing is gabapentin does not make Parkinson's worse But obviously discuss it with your doctor.

SueJohnson profile image
SueJohnson in reply toDizlizz

On the ferritin, if your doctor said it was average, that would be referring to other people. People who have RLS require a higher ferritin. Do you know what yours was?

Rosyrestless1 profile image
Rosyrestless1

I use topical magnesium. I use both cream and oil. No matter what else I do, I always use topical magnesium and can't live without it. I also use lidocaine cream or roll on when it's particularly aggravating. For me, diet and how much I eat as well as how close to bedtime is critical. I limit sugar and only eat small meals and early rather than late and I use an emulsified oregano oil to help with digestion. It has helped me a great deal. I have had some relief using carrot juice. It's very anti- inflammatory and has been useful. Only problem is that it's a high sugar veg so I don't over do it. I also use a restless leg syndrome subliminal track that I found on YouTube music (Brainwave Mind Voyages called restless leg syndrome). It's silent and I put it on a loop. Hope you find relief.

Tom919 profile image
Tom919

Stretch your legs during the day and before bedtime. The calf muscles back of legs below knees. Sit on bed with legs straight. Take a towel and place behind upper part of foot and pull for 30 seconds. Stand backwards on stairs and lower heels for 30 seconds, and you'll feel your calves stretch. Stand and bend over 3 foot ledge. Then squat for 30 seconds to stretch calves. Do a Google search for stretching calves. Excuse my typos. Good luck!

K2D2 profile image
K2D2 in reply toTom919

Agree about stretching. The same stretches prescribed for plantar fasciitis sufferers can sometimes help with RLS. But my best and most reliable/complete relief comes from taking 1800 mg staggered doses of gabapentin each evening.

ziggypiggy profile image
ziggypiggy in reply toK2D2

I fall in the odd camp where stretching worsens my RLS. But it does help many people.

SueJohnson profile image
SueJohnson in reply toTom919

Have you had your ferritin checked?

bedith6 profile image
bedith6

I use a powerful percussive hand held massager. Although I do have to take meds I find the massager gives me a great deal of relief

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