Restless legs syndrome ( RSL)

I'd like to ask anyone who has this condition, what medication due you take? and how you manage this condition. I have had RSL for about 40 years. When I first went to the Doctors about it., he said he said there is no such thing? Anyway, about 6 month ago I was offered a a referral to the Hospital, but I'd be lucky if I get seen in 2023. My current medication for this condition is Pramipexole, Amitriptyline, Codine. On reading the leaflets for each say they can make you sleepy, and I should take them 2-3 hours be2 bedtime. My problem is that I can have RSL anytime of the day, so what am I supposed to do? I feel very guilty about nodding off to sleep, and feel that I'm of little company to my wife. Although I have a quick fix that gives me some relief, this involves putting my feet in a bowl of water straight from the cold tap. This is not a pleasant experience. Also I and dreading Christmas. I don't want to sit in front of our quest with a bowl of water, of falling asleep in front of the family. I am often getting RSL in the early afternoons. Apart from having both my legs amputated, can anyone give me some practical advise? Before I screem in frustration.. I have been in contact with the Doctors. That's another story. They have a system online called ask my GP, so you cannot just phone for an appointment. So a face to face is like the lottery. Can anyone who has RSL, tell me how do you manage?

[Stuartmcintyre1402]

Hi. I have suffered particularly with RLS for about 20 years. Just recently and by chance, I have found Paracetamol helps to the extent that an hour after taking a 500mg tablet the restlessness has disappeared.

[fredwgarfield]

RLS (not RSL)…. mayoclinic.org/diseases-con...

[PhilipEastbourne]

Hi, Like you I have suffered from RSL for a number of years. GP's seem to ignore it.

I was referee to the Sleep Clinic by Cardiology for Sleep Anapea, and mention RLS. I was prescribed Gabepenin. The have helped a lot, to the extent of stopping it. The probem is there are side effects, so you need to discuss with your GP.

[SimpleFellow]

Hi, I am not sure if I can recommend anything but I'd like to share my experience. I suffered with restless legs for about two years. From what I went through, my anxiety triggers my body's 'fight or flight' response. Worry and feeling constantly helpless runs like a background task in my mind that keeps me stressed throughout the day. As a result I developed RL and muscle twitching in my arms and legs. As a desperate attempt, I tried CBD oil capsules. This helped me calm down and feel relaxed. I believe I developed "Learned helplessness" overtime, that made even mundane tasks trigger anxiety.

I figured my brain must be rewired from years of wrong thought pattern and problem approach. But before I could deal with the psychological aspect, I had to wean my body off this continuous cycle. Hence I decided to try CBD capsules. Unlike anti anxiety medication, it does not dull down my mind but calms me down enough to overcome anxiety that used to trigger restless legs.

It has been good so far. I do not have restless legs. Also, I did not want to develop dependency on CBD, so I only take the capsule on days where I feel my mind is beginning to worry about something.

[rols24]

Hello,

Like you I have suffered with RLS for about 40 years. In the early days I managed it with aspirin and paracetamol. In around 2009 I started on Pramipexole (one tablet 250MCG per day). The medication was increased first to two tablets and as of 2020 I am on three tablets. This is the maximum dosage that I am allowed to take. I also make sure that my iron and magnesium levels are ok. I don't drink or smoke. I take one tablet at 3PM another at 8PM and the last at 9PM. This gives me some relief during the evening and at sleep .time at around 10PM. From time to time I have to go for walks to provide relief. I do sometimes fall asleep in the daytime but my family and any visitors are informed of my condition.

I would recommend that you keep family and visitors informed and continue any treatment regardless of what anyone thinks of that. You are the one suffering and anyone else need to be considerate of that. Cheers

[Hidden in reply to rols24]

Thank you Rols24, that's good advice. I'll do the same with the Pramipexole and see how I get on. On the NHS Choices it tells you about other meds available. One is these patches which you use once a day, I was considering them, but not sure. We have a " Ask MY GP " Service, that's if you can call it that, but I imagine sending his a request for him to contact me, he'll say " oh god you again" Anyway thanks for your reply. and hopefully a peaceful Christmas. Best regards. Spiceboy.

[Ste_smig]

I take my Amitriptyline fairly early in the evening as I found that I was very tired the following day if I took it late