25 years the sufferer and how I manage my RLS

[TheTruffleHound]

Hi, first post so be gentle

I've suffered from RLS since I was 10. I've gone through the whole thing, even get it in my arms when it's really bad. For me it's just like an electrical current continually building up and sparking. I used to suffer quite bad, where I'd punch and thump the offending limbs and suffer all the awful thoughts that came with it, and the label of being a fidget. Not being able to enjoy a simple film or play. Now however I'm managing it quite well.

I found that thinking about it can trigger it, also that when i'm in a state between awake and being ready to sleep it will also strike, boredom doesn't help either.

The physical things that aggravate it in me are caffeine and alcohol. I have now dropped the caffeine and very rarely have a drink, which seems to ease the severity of any attack.

The psychological part of it is the most interesting for me. Over the many years I've noted that if I can keep my mind 100% focused on a task with preferably some physical aspect to it, I can prevent it coming on completely.

How do I do it? I started off noticing that if i'm playing a video game (strategy works for me) , it won't come. Also I enjoy painting models, and when I do that it doesn't come. If I have to watch a film, it's got to be intense, none of this rom-com for me.

So now, in the evenings I don't relax by loafing on the sofa. But not relaxing makes getting to sleep harder, so essentially I push the activities to the limit until I'm ready to just hit the sack , then boom, lights out.

It was a bit of a fluke how I discovered this, but I can happily blame it on the arrival of my 3 year old son. Without him I would be able to carry out my hobbies in the afternoon and not the evening. He usually get's off to sleep by 8, leaving Wife and I 2 hours in the evening. A perfect time to self indulge.

So really, I'm just living life in 2 gears, Stop and go. I'm not saying it'll work for anyone else, it's just how I manage it.

As a side note, I have my mobile loaded up with social media, games and books, so if I prematurely head up the apple and pears I've got something to entertain me. I know it's not healthy, but getting in a fist fight with yourself isn't either.

Hopefully someone can take something from this nonsense I've just written. You all have my deepest sympathies

The Truffle Hound

[mwsteele]

Hi there, funny enough I find it a little easier when I'm on the Xbox...hmm...I guess I'm going to be getting better at certain games! I'm recently diagnosed, only suffered 7 days before medication started, and I'm on a very steep learning curve.

[Mopsy1950]

Hi I would just like to say welcome to all the new folk that have found health unlocked , it's a great place to air your horrible restless leg or body parts there is always someone that you can discuss things with and it's nice to know there are an awful lot of us with the same nasty 😷 Condition

[Shirleymaidment12345 in reply to Mopsy1950]

Mind over matter and over thinking is true it is now 2.39 and still awake with the twitches after watching the programme tonight 😩 should have watched it in the day really cause I knew this would happen. It's going to be a rough day...

I have noticed over the years it has got worse ( is it hormones ) and starting to age me with the lack of sleep and my memory has gone to pot ( or is this hormones , hard to know really ) know one thing , fed up !!! Never know if I'll get through a flight or watch a film at the movies with out an attack , even when driving it happens 😩😩

[Joolsg]

Welcome Trufflehound,

Everything you have written is spot on. Avoiding alcohol and caffeine and chocolate and sugar will definitely help as they are known triggers for most of us. Distraction is also a recommended technique for RLS so concentrating on video games or newspaper puzzles helps.

Have a good search on the site and you'll find people have different ways of dealing with RLS. Some people manage to get relief through diet/supplements alone while others need meds like gapaentin/pregabalin or tramadol/codeine. What you'll see is that no 2 people are the same and what works for one may not work for another so it really is a case of trial and error until you find the thing that works for you.

Thanks for sharing what helps for you,

Jools

[Hidden]

Good you've got a solution. I'd hazard guess that when you are in the thralls of the game you are moving many muscles and tightening and moving your legs without knowing it. How often have you jerked the controller or moved to the side to help corner an on screen car?!

I used to do the same, I've painted my whole house at night among other things, but unfortunately I've developed ME and haven't even the energy to move some nights - a case of rolling on the floor praying for death!

[TheTruffleHound]

Usually there is not a lot of movement, keyboard warrioring on Total War games mostly. Same with the model/figure painting. For me it's just occupy the mind. Which is quite hard, I get bored fairly easily.

Can't imagine how frustrating it is with ME too. I really feel for you.

[Hidden in reply to TheTruffleHound]

Yeah the ME makes it so much more difficult. I can't shake off a nights missed sleep like I used to, haven't the energy to move nor concentration to distract.

I used to content myself that I might be missing sleep and comfort but I can still achieve things, now its a harder slog. I miss me hobbies!