Relief at last?

[Allyp69]

I am a 71 year old woman and have suffered from RLS since my 20s....when I was pregnant..but my mother also had RLS. I have tried everything..recently copper bracelets, giving up caffeine, alcohol-- taking Valerian, magnesium, lying down with legs up, exercises etc..Some days I am ok but others it is unbearable...especially at night, at the cinema, watching TV, at the theatre etc..But, I think I have found a remedy that works for me and I am so excited as it costs nothing and doesn't involve taking any medication...

The other evening I decided to listen to music on my phone using headphones...60s pop music...I hadn't listened to music for ages...and every time I listen..the RLS disappears immediately. Not sure why...could it be that the brain is concentrating on the the sounds?? I have no idea but would be interested to hear if anyone else gets relief like this? I am flying to Sydney in January and was dreading the long flight as RLS worse on flights...now I hope listening to music will be the remedy I need. If this helps anyone else, I'd be glad to hear..

[Hidden]

I am so glad it helps!! I think you're right about your concentration moving to the sounds. Weird how that works, huh?

I wouldn't say that my RLS disappears when listening to music, but it definitely helps calm things down.

[Parminter]

The experts speak often about finding intensely involving distractions. No doubt music could be one of them. As I am similar in age to you, and like 60s music, I shall certainly try it. Thanks for this.

[Allyp69]

Hope the music works for you...tried soap....copper bracelets at night help...plus Valerian and any over the counter sleep aid..reluctant to take sleeping pills like Zopiclone as addictive! But hoping music on flight is going to be the solution.

[Elaniemarie]

I also found that playing the piano or knitting a lacy pattern had the same affect. When I knitted plain though, the effect was not so good. Interesting!

[Allyp69 in reply to Elaniemarie]

And you can't knit and do other things at the same time!😀

[Hidden in reply to Elaniemarie]

I found playing the piano ad knitting helps as well though it does't stop the wakeups, just settles the horrible feeling earlier so can get back to sleep - before the next wakeup. Sometimes though I'm so tired i can't get my brain to knit or play the piano.

So, I am excited to try playing music - another girl of the 60's and 70's - as that sounds easier. I'm going to work out how to work headphones and what the source of the music will be! I don't tend to use them.

I do find that watching TV doesn't work though, or reading. I often jiggle about or walk about trying to watch a programme I want to during the ........ feelings have kicked in but I presume music must have a different mechanism.Fingers crossed. I'm still working on the iron as well.

[Allyp69 in reply to Hidden]

Hope music helps...digital portable radio? Doesn't have to be phone but headphones may be essential... don't know why..TV is the worst thing for my RLS...get someone to help with headphones.😀

[Elaniemarie in reply to Hidden]

I cannot tolerate earphones unfortunately, tried several times. It has to be more that listening, a combination of senses all engaged seems to work. The piano playing engages touch ,sight, sound and coordination, so maybe knitting while listening to music eg. I am exploring it all,lol!

[Allyp69 in reply to Elaniemarie]

And we need to find out what is causing RLS....going to try iron tablets for a month as remember RLS starting while pregnant and bring very anaemic. Hope you find relief...

[Gmc54]

Might be that the pleasure of the music sparks off dopamine in your brain. I too have found music helps sometimes.

[Hidden]

I had a bad acttack right before bed a couple of nights ago, where my legs were in so much pain that I started crying. Although the magnesium oil helped the most with that, I’m sure the music I had flowing through my headphones made it easier to cope.

[rkatt]

Yes, it’s similar for me, though it takes a little longer. I start with punk, then blues and folk. I think I start with punk because RLS makes me angry and desperate. Now I listen less to music, more to audiobooks. No matter how interesting the book is my RLS fades and I fall asleep, for a time at least. Once, when I was on Zopliclone, I fell asleep with a phone in my down facing ear and my device on Music Library, so it played on and on. I’ve had tinnitus in that ear ever since.

So glad to hear of things that work.

[Elaniemarie in reply to rkatt]

Sounds familiar, my legs were going so bad I was ready to jump off the window, because I was suffering sciatica at the same time 😣.

[Allyp69 in reply to Elaniemarie]

Hope you find some relief...

[Elaniemarie in reply to Allyp69]

I went to my doctor recently to try a different med.Pramipexole, I was already on 4mg per day Ropinerol and wondered if a change would be good. I was put on the lowest dose of Pramipexole which of course had no affect are all. After the weekend I was told to double the dose every 4-7 days until the right level was found. As you may imagine, it was torture because it was just too low a dose. As they are both dopamine agonists, a similar dose would have worked better surely. As my doctor was away for 2 weeks, I had to go back to Ropinerol as before, to get any relief. Has anyone else experienced this?

[Allyp69 in reply to Elaniemarie]

Presume you don't live in the UK ? Doctors in UK seem to have no interest in RLS and don't prescribe anything....could be wrong...sorry you are suffering so badly..

[Elaniemarie in reply to Allyp69]

I do live in the UK, but understanding of RLS is very limited indeed. I think the name makes it sound trivial, and is not taken seriously enough. For us who suffer with it of course, is anything but. It a central nervous system disorder with a fault somewhere in the wiring, but nobody knows why or how. It is the worst. I suffered endometriosis for many years, but at least I had respite on a regular basis! RLS is relentless. I now have ME/Chronic fatigue as well so not good. We all are struggling with this accursed affliction to the best of our ability, and desperately need more support from the medical profession.

[Allyp69 in reply to Elaniemarie]

Yes the condition is not considered to be very serious but we know how unbearable it can be.

[DisneS in reply to Allyp69]

Yes. I remember reading an article 3 or 4 years ago about RLS and the author was being patronising and amused about the condition. Don’t think there is much more knowledge around now, either with the public or with the medical profession. It’s just disgusting!!

[auntiesioux in reply to Elaniemarie]

Wow, I adore this support group as I am hearing more and more folks expressing my feelings which the "others" just don't get. I have tried to stop using the term restless leg syndrome as you are absolutely right, most people make this into a trivial complaint. The more 'scientific' name of Willis-Eikbom Disease is after the physicians who actually named the disease, not even in this century. I now say I have Willis Eikbon Disease (WED) and most people either say they never heard of that or simply do not ask. I also say that I have 'leg seizures.' This does not solve much except not trivialized so much. If you are doing any on-line research, try using the name Willis-Eikbon Disease. I do that and the articles seem to tend towards the latest 'discoveries' of what it is and what to do. Auntie Sioux

[Kaarina Administrator in reply to auntiesioux]

Hi auntiesioux

It is Willis-Ekbom Disease (WED) if anyone wishes to do an on-line search.

[Hidden in reply to Allyp69]

I think some do but as several folk below have said, the name makes it sound trivial.

When I was a working GP I already had RLS but at first not nearly so severe and more of a nuisance which was copeable with. I clearly remember a lady coming to see me, explaining her RLS symptoms. She had no idea what it was. To some extent she was glad to know I knew about it as I had it too - but I said to her that there was no treatment available, which at that time was correct - it was pre the DA's. She went away resigned to it. I have often wondered how she is now and whether she is badly afflicted. I have no idea if she was short of iron or not. No one knew to check then. I also knew about RLS via my mother and watched her just put up with it too. I had absolutely no idea of the possible torment it could cause. I don't think my Mum knew how widespread it was and she just put on a brave face though I remember that laterly she was upset when her GP wouldn't give her something to help her sleep - he I assume thought she was just an elderly lady who would me likely to fall if prescribed a sleeping tablet. I remember if I called her in the am she would often say she had got up late having had breakfast then gone back to bed which I presume was her trying to take advantage as I do of some sleep once the RLS has worn off for the night/early am

[FLAME43]

fantastic, thank you for the share

[Allyp69]

My husband became addicted si I am very wary. He managed to wean himself off them but one of the side effects is bladder cancer...which he has...

[auntiesioux]

Wow, Allyp69, are you sure you are nor me? I am right with me, at age 77 and have also tried EVERYTHING. I would though, add to your list Ivory Soap under the sheets. Geez, made my sheets clean and my feet smell good. I have been listening to the radio to fall asleep since I was a young teen. If I can settle down before my legs and I start dancing, the radio really does help, but not all night. Actually I don't listen to music because I will want to sing alone. I listen to pod casts. When I am awake off/on all night and feel that I have not slept, I realize I have missed listening to at least two Pod Cast. I wish that was the

"cure" not just the bandaid, be for now, what the heck.

I am following "curing" the cause, not the retched symptoms. I have just ordered some theanine, an amino acid, to reduce the excess glutamate in my brain. Stand by, well I am on 'stand by' also. Have a great trip to Australia. That is a challenge for even the best of men. I don't think I could do that these days. Traveling, movies, sitting to use the computer is , for me also, a challenge. Auntie Sioux

[Allyp69]

Have ordered effervescent zinc and vitamin c plus iron....need to get rid of this awful condition...but it doesn't affect me every night... can't work out why?! Thanks for sharing your thoughts.