Restless legs are awful
Legs are so annoying
Restless legs are incredibly frustrating and painful. So, you do not suffer from this problem, then you are lucky. It is a difficult sensation to describe. It affects the whole of my lower legs and feet but only when I go to bed in the evening. It is a classic hidden disability. I don’t know what causes it or why it is so painful. If I get into bed with the electric blanket on then it is even worse. Hey ho, I’ve just gotta live with it.
The awful problem
Restless legs happens in my both of them, not just the one that is seriously affected by MS. Over the last twelve years the problem has escalated from nothing to something that affects me every night. Remember I cannot stand without holding onto something for my balance. Therefore the nerve messages between my brain and legs are not all reaching their target.
Every night
As name implies I cannot keep my legs still and its only when I am lying in bed. It starts off as a mild burning or a tingling sensation in the calf muscles. My feet will then begin to twitch ever so slightly. Slowly it gets worse and worse. Eventually my legs start to twitch and move. Sometimes the movements are minor but other times a leg will do something that I could not possibly do myself. Both my big toes have a mind of their own. So very sporadic messages are passing down my nerves to my muscles. The feeling is not incredibly painful but neither is it restful. Worst of all I cannot stop the restlessness or relax my feet, calf muscles or legs.
Try describing restless legs
Think of stormy weather and waves breaking onto a beach. There is a lull between the waves crashing onto the beach, that’s when my legs are still. Now the next wave is moving towards the shore there is an irresistible urge to move and twitch my legs. At first the movement is barely noticeable. As each wave moves towards the beach getting steeper the feeling of restlessness builds up. Then the wave breaks and the sensation subsides waiting for the next wave to build up and crash onto the beach. I have no control over the time between each wave of restlessness or the strength of the restlessness.
Managing the problem
As far as I know there is nothing that completely stops the problem. Two drugs do help to calm the nerves and twitches. I take 2,400 mg of gabapentin in two 1200mg doses at 8pm and 11pm every evening. I also take 1 mg of clonazepam every night but it is very addictive. If I forget to take either then not much sleep that night. I have tried cannabis oil and Sativex, Neither made any significant difference and Sativex made me feel stoned as well, a sensation I do not like. Its bad enough having MS but being stoned as well is a terrible idea.
Falling asleep
If there is anything more than a dim light on in the bedroom then I cannot fall asleep. If my legs are twitching then there is no chance whatsoever. I have tried sleeping pills but over time they became less effective, now I just keep then for the awful nights. The only consistently reliable method is a glug of rum or vodka when I put my book down and turn off my bedside light. It relaxes my mind and body and, importantly, calms the restless legs but it is no guarantee that I will then fall asleep. Once asleep I do stay asleep but some nights I have counted several flocks of sheep.
Memo to self
Remember to take my pills at night. Make sure there is some rum in the hip flask on my bedside table. Double check that the electric blanket is turned off before I get into bed. Occasionally I have just gotta accept I will twitch for several hours that night.
March 2025
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HI Patrick,
I have similar symptoms to you but I have always thought (and my consultant agrees) that it is is spasms. Like you it mainly happens in the evening from around 6pm. My lower leg and foot starts to stiffen and my big toe twists up in the air, lasts for about 5 seconds and then stops for around 10 – 15 seconds and then repeats ad nauseum for about an hour. Usually one leg at a time but can be either leg. Because it disturbs my sleep, I take 4 Tizanidine tabs about 30 mins before going to bed and take one spray of Sativex every half hour from about 9:30pm until bedtime at 11:30pm. The spasms still happen in the night but some nights I don’t have any. John
Hello John,
Spasms is probably the medical term, restless legs describes the problem and sensation. Tizanadine was no help to me and I do not like the effect of Sativex after a couple of hours. A stiff drink works for me when I put my light out. People might disapprove but its my life.
Talk soon
Alright Patrick, same problem here. I’ve been doing ‘Riverdance ‘ from 7pm every evening and nothing stops it. MS nurse gave Pregablin a couple of years ago and I’ve been taking them since but they’re still dancing. I sit sometimes and count the seconds in between twitches (it’s usually about 10) and then the left leg joins in just to confuse things. I end up standing for a while and it stops for a few minutes then sit down and try to ignore/forget the legs and just imagine they have stopped. I haven’t found anything to stop it longterm.