This RLS is a real bitch! Can I say that?

[rls-nightmare]

I get it off and on, not every night, but when it comes on, I'm awake for hours twitching and jerking one of my legs, but mostly the right leg. (I'm right-handed if it makes any difference.) Never two legs at once, just one, and sometimes I feel it in my back. I DREAD TONIGHT! THIS RLS IS NASTY! ABSOLUTELY NO SLEEP WITH CONSTANT JERKING EVERY FEW SECONDS. I HATE IT!

[Joolsg]

Welcome. Spend some time reading RLS-UK website and the Mayo algorithm.Raising serum ferritin is the first step.

Are you on any meds, including OTC drugs?

mayoclinicproceedings.org/a...

[rls-nightmare]

Last night I was hoping it wouldn't kick in because the previous night it did kick in and I got no sleep! (Tonight, I'll be in my bed watching TV hoping it won't kick in.) But once it kicks in... game over! I hit my thigh with my fists, (it's always in the thigh) and I constantly change sleeping positions, but nothing works! Maybe getting drunk would work, but I can't get drunk every night. The sensation is hard to describe... but every few seconds you have to move your leg to relieve the sensation. It's like there is something in your thigh moving and the only way to stop it is to jerk your leg. But it returns a few seconds later. it's a horrible nightmare of uncontrolled jerking! NO SLEEP! NO PEACEFUL DREAMS! JUST A NIGHTMARE!

[rls-nightmare in reply to rls-nightmare]

It's called restless leg syndrome but for me, it's always been in the thigh. Restless thigh syndrome might be more descriptive. It's never below the knee, just in my leg muscle tissue above the knee -- quadriceps.

[SueJohnson]

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. 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 ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels you need it.. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin 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 (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and don't take calcium within 2 hours. As Joolsg said, 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...

By the way it would help us answer your inquiries if you would indicate in your profile if you are male or female and what country you live in.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol so getting drunk would definitely not help, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, 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 and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Madlegs1]

From your description it sounds like something is triggering your RLS.

Do keep a diary of everything you put in your mouth. You should be able to make connections after a few weeks.

Good luck.

[Munroist]

If you get up and move around does that give you any relief? Sometimes it's enough for people to get back to sleep.

[wendersgame]

when my RLS kicks in (which it has been doing again recently for some reason that I've no idea why!), I have to get up. I can't lay in bed waiting for it to go away. I accept I have to get up, go downstairs, maybe walk around, read a magazine, have a cup of (decaff!) tea... I just need to be moving and out of my bed. I get back to sleep much quicker if I accept I have to get up and spend the time moving. Once I go back to bed I'm usually good, and remain asleep for the rest of the night. If I fight it, I'm there longer...

[Hidden in reply to wendersgame]

Do you still use HRT?

[wendersgame in reply to Hidden]

Yes I do. I started it about a year ago. I'm seeing here today that it can cause issues with RLS. My GP said I could try HRT ir SSRI's which I've had before, but I wasn't keen for that route. I read SSRI's are potentially an issue too and looking back, my worst RLS and night terrors (as I have those too and the RLS kicks them off) coincided with the start of my SSRI's for post natal depression.

So HRT is my current vice!

[Hidden in reply to wendersgame]

You might actually be RLS free without the HRT. Notably, HRT only makes the “symptoms” of RLS worse. It doesn’t down-regulate our already pathetic dopamine receptors the way the DAs do. Possibly just the opposite - the HRT may actually have been up-regulating your receptors this past year while you’ve been suffering increased symptoms from it. Only one way to find out - if you taper off the HRT and find that your RLS has gone relatively silent - you’ll know why.