Restless Legs Syndrome (RLS) Discussion Board

At the risk of triple posting this , I felt this needed it's own thread

I was about to commence Buprenorphine, but wanted to delay it for multiple reasons

I discovered that FRISSION caused by listening to emotion provoking music , although briefly, made RLS go from treatment refractory to almost non existent within 48 hours
... my RLS has since come back after a great 5 week run , partially because I began to run out of stuff I hadn't heard in many years combined with my Circadian rhythm disorder messing up my routine BUT ... there was no denying the profound effect older , familiar emotion provoking music had on my RLS .

We often hear about Parkinson's or dementia patients listening to music
I believe this is similar, if not even more profoundly relevant to those of us who suffer from RLS .

I'm not kidding

You need to find music you loved from your youth ...
Press play
Reap the benefits

We definitely know that emotion is tied to neurotransmitters. Glad you had at least a temporary reprieve.

ViewsAskew wrote: ↑

Wed Aug 18, 2021 10:40 pm

We definitely know that emotion is tied to neurotransmitters. Glad you had at least a temporary reprieve.

Oops

Should be spelt FRISSON

Moderator EDIT Aug 23: Fixed spelling

I have a theory about the old music, at least as to how it relates to my periodic limb movements. When I started using a TENS Unit on my lower back for my legs, I realized that even if my legs weren't repetitively jerking, my brain was still like a stuck record with a phrase repeating over and over for hours. It took probably a year or more to get my brain to break that pattern.Tried listening to nature sounds, classical music - you name it. It wasn't until I tuned in to soft rock oldies that I began to get some relief. My theory is that I needed auditory input for the brain to keep processing and not get stuck, but not input that required me to actually listen to it and thus keep me awake. Songs I knew by heart played just loud enough to hear the words did the trick. The brain is a creature of habit, and I think that aspect of our healing hasn't been given the study it deserves.

I was browsing and saw this old thread. This is great advice! I haven't tried it yet but I will. I am a musician; majored in music in undergrad. Music has a powerful effect on me, often brings me to tears when it is real, coming from a place of truth, not ego.

Music used to be a huge part of my life but lately I have hardly been listening to any music at all because this disease has made me so apathetic. I haven't been playing much either, and certainly haven't played with other musicians, which I think is the greatest panacea there is; I am just too tired.

I will make the effort, though, and find some device to play some music to myself as I go to bed and maybe all night long. If I could convince my wife to accept music at night I wouldn't have to wear earbuds, which is something I am not at all used to.

BTW, there was a study of nursing home patients with advanced dementia who were essentially nonverbal with no social interaction whatsoever. The music therapists put headphones on them and played the popular music from their younger days and the patients perked right up and started talking and interacting again, even when the music was not playing!

Music!!

What a lovely story about the nursing home patients.

Maybe your wife would be willing to wear ear plugs.

My favourites are the silicon ones which remind me of a cross between bubble gum and candlewax.
I live on a river with rapids and in the summer when I need to sleep with the windows open I use them.

Boy, do I hear you on the apathetic. When I was in my thirties and forties and the RLS was causing issues, I fought back. Now, as I get close enough to think about retirement age? I just want to make it through. I have no energy. I just don't care the same way.

Just getting through, yes. I admire Members like Beth, and several others who have such determination and work at the different diets etc seeking a better lifestyle while trying to reduce meds.
Oh my, my drug cabinet.... My husband kids me that If I went downtown on a Saturday night with the contents, I could make a fortune...... Please note I am just joking

Yes, ear plugs for my wife, maybe a good idea. Not sure the best way to play the music at night. I guess I could use Pandora on my phone. I'm not very tech-savvy.

but yeah, I can relate to the drug cabinet comment. Before this disease I never took anything. Nada. Now I have baskets full of pill bottles, most of which I don't take because of side effects but haven't thrown away.

Dr.P.... I have a box, a proper substantial cardboard box, of meds no longer used but not thrown away...... just in case.

Music is WONDERFUL and definitely you should return it to your life Paul. Especially since you can make music - you must return to that. I have read a number of articles about music therapy for stroke patients (after my dad had a stroke) and also for dementia patients (after my mom developed Alzheimers). It is astounding what music can do.

Listening to music releases endorphins, dopamine, and serotonin. Music is processed in an area separate from language, which explains how some dementia patients can understand and create song but not speech. Listening to music reduces anxiety and encourages our parasympathetic nervous systems to claim ascendancy over our sympathetic fight-or-flight systems.

I lost all the music out of my life at some point - - first, I left my parent's piano behind when I left home. I couldn't play well, but I loved to play. Then I lost my voice by straining it and couldn't sing afterwards, and although that was almost 40 years ago, I still cry whenever I think of it. I wasn't even a good singer, I couldn't carry a tune, but I loved to sing to myself; I would to play a song I liked (or play the piano, back when I had it) and sing along. That was my way of soothing myself, and it worked wonders (I needed a lot of soothing). Once I couldn't sing anymore, I lived with that horrible loss ever since.

I lost more when the music world went digital. Although I gathered a huge collection of digital music, I didn't know what 80% of it was, it was unsorted. In the midst of WED/RLS developing and progressing, I didn't have the energy to sort my music files. I couldn't just "put on" the CD or cassette I wanted to hear. So I didn't even listen to music anymore. I didn't put on my fast music and dance wildly with myself. Nor my sad music and daydream tragic things that somehow soothed me.

Finally I did create a folder containing a lot of my favorites. I made an effort to bring music back into my life. Now I have a Spotify account and Prime music, and I've grown accustomed to finding music I love online.

Dr.Placebo, get it back! Listen, and do also make music while you can! I know that you're tired, but it will give you energy. It will soothe your mind. If you can jam with buddies every now and then, so much the better, but it's hard to commit without knowing whether you'll have the energy to carry thru. Start small, just listen to a song or two during the day, especially if you're having symptoms - throw some music on and get lost in it as you walk around the house.

And of course find that bedtime system you're thinking about. Maybe your wife will actually like hearing your music as she falls asleep?? or you can alternate nights with ear plugs