Restless Legs - Any suggestions as seen many doctors and medications

@3dogs welcome, you have come to the right place for all kinds of suggestions.

I have had RLS for years. My neurologist gave me PRAMIPEXOLE and I’ve used ROPINIROLE. Both worked great until my body got used to them. I still take the PRAMIPEXOLE but have had up increase the dosage. It works fine for now.
I believe RLS has a genetic component to it because my grandmother had it, and my sister has it.

I've tried both and had an unacceptable reaction so cannot take. But FYI the reason you need a higher dose is because they can make RLS worse, so it's probably become worse, and you need a higher dose. When I first read about some medications that can make it worse, I asked my doctor and he said yes, but they don't really know what dose starts making it worse, so they start you on a low dose. Didn't matter for me as could not take it but found it worrisome that the medication that helps can makes it worse to where you will always have to take and at higher dosage. I've tried so many things that I'm hoping someone has something new to try....LOl

Hi

i am just a everyday person. not doctor or research. just add some experience and thought.
i often notice a single flinch in my legs as soon as i am near sleep. but no knowledge of RLS -
i sleep alone.
however was once plagued by nightmares and my whole body reacted and woke up stressed and sweating.
after many months of intensive practice of lucid dream control, i did reduce the intense dreams and fear. l learned to fly away in my dreams . so did not feel trapped in a stressful dream.
maybe this can help ???
i had a friend sleep over, her legs moved when she was dreaming. when i calmly talked to her it
would stop and she stayed asleep.

i do often play disc golf and feel my arm moving while sleeping.
just a twitch, but definitely related to the game play motion. sometimes wakes me.

so i am aware of the connection between dreams and actual body motions.

i also am adverse to medications. i prefer foods and TCM.

maybe you can get some relief in lucid dream practice, dream journal - to gain awareness and sone control.
hope you find relief.

So sorry, I know exactly what you are going through as I too have had RLS since I was young. I finally saw a sleep specialist when I was 64, and was given pramipexole, which worked for about a year, but then I started augmenting. The answer I got was to get on a higher dose- I refused and stopped the med on my own in June and then joined the RLS Foundation. The information was invaluable and I have taken much of their advice. For people with RLS, your iron ferritin levels should be at least 75 (much higher than what is considered normal) , and magnesium supplements should be magnesium glycinate, intake 500 mg 1 hour before bedtime. Even if you don’t join the foundation, they still offer a great deal of advice on their website.
Hope your journey gets easier.

Hi, thanks for the info...I've tried pramipexole and had an unacceptable reaction, which is good because later I read that some of the drugs used to treat RLS can make it worse, and the result would be higher dose and taking it forever. I asked my doctor about that and was told that yes some can make it worse, but they did not know the dose that started making it worse, so they always start people on a low dose. I might try the magnesium glycinate as I currently take Mag-Ox 400 Magnesium Oxide as other magnesium made my stomach upset and these do not. I was just taking in the morning and about 2 weeks ago started taking another dose at bedtime. was doing in the morning as my RLS will start during the day, but mostly around 5 or 6pm. I will also check my last blood work on Iron level as I took extra Iron but did not notice a difference and my new primary doctor (moved) said to stop after a year on it. thanks for your info....

In my case my legs will start bothering me at like 5 or 6 pm, riding in a car, flying etc so I'm awake. I've always gotten leg cramps and as a kid had what they called growing pains. Even some medications will cause sever foot and ankle cramps. o for me it's more in the evening (or day) and at night I can sleep but toss and turn. It does bother me sometimes at night where I cannot sleep, but not as much as in the evening. It's annoying in the evening when trying to eat dinner, watch TV, read etc...and it's almost every night.

Hi @3dogs
Like you, I've had RLS for 50 years since I was a kid. I first remember having it at 12 when I would ride in the car. I do have a rare disorder called hereditary neuropathy with pressure palsies and that makes me prone to RLS, cramps, numbness, pain, etc. I don't do well with meds in general so I haven't tried any for RLS. My suggestion to you since you've tried so many meds and supplements is to take a different approach and figure out what your triggers are. An ounce of prevention is worth a pound of cure as they say. Even though I have a medical condition, I have learned there are specific behaviors that trigger my RLS. Your triggers may be different.

I'm very caffeine sensitive so I don't drink caffeine, but if I eat chocolate, it is guaranteed I'm going to have RLS that night plus other neuro issues. Dark chocolate is the worst since it has more caffeine. Note that decaf coffee still has caffeine. I'm betting chocolate/caffeine may be a trigger for everyone.

Salt -- if I eat salty foods or add salt to anything, I'm going to have bad calf cramps in bed that night. RLS too? Not sure. I don't even tuck in my blankets because I need to come flying out of bed to get out excruciating cramps.

Tight pants: this is the pressure palsies part of my condition, but still make affect others with neuro issues. Like others, I've always had an issue in cars, movie theaters, planes, just sitting down. I noticed long ago that pants that are tight on my legs (especially) or even tight in the waist will trigger my RLS. Worse when I sit down as both the waist and pant legs become tighter. As pants ride up when you sit, the slim ankle portion of your pants are now hugging your calves. I started wearing loose leg pants and stretchy waist, also very loose PJs and it has really minimized my RLS when sitting and lying down. Loose leg pants may not be stylish, but they really help me.

Stretching my calf muscles. When I watch TV, I sit in a recliner. I love to stretch my calves by moving my feet back toward my head because it feels good, but I've noticed when I do that at night, I start having an issue with RLS shortly after. Just the pressure on my legs of sitting in the recliner will trigger RLS and bad leg pain. Also, lying in bed. I even put my legs on pillows which helps, but not enough.

I don't drink or smoke, but those are listed as triggers. Some meds/supplements can also be triggers.

The sports back massager on high (ouch) helps get out cramps in my shins or ankles that are hard to walk off especially in the middle of the night. So I have wondered if I used the dual head sports massager on my calves before bed would it help prevent cramps or RLS? Haven't tried yet, because I'm a night owl and the old one I have is very noisy so it would wake up my condo neighbors like a blender. The one I have is 30 years old from Walmart, but looks something like the thumper sport massager on Amazon for $139 or the Homedics Back Massager on Amazon for $40. Maybe new ones are quieter?

Anyway, these are some of my triggers so if I avoid them, I really reduce my RLS issues. Try keeping a diary and look at what you ate on your worst RLS days or what activities you did. Some of my triggers may be triggers for you or maybe you have others. I know what a miserable disorder this is and really interferes with sleep. I hope something in my response helps one of my fellow sufferers. Best to you all.

Sorry to read all that you are going through.... and I hope this comment isn't taken as a flimsy offhand response (I too have a laundry list of health issues) and this is from a column appearing in the newspaper we used to get... not sure if USA and Canada it was called Dr.Gott, I think he has passed away now. He had heard from readers with RLS that put an unwrapped bar of soap in their bed under the bottom of the sheet and for some reason it helped many readers! Years ago didn't have Internet to check these things but years later people are still saying it helps them and others saying its simply not proven to help. I just read these and this response from experience with husband from leg cramps and honestly he didnt even want to try but he has not had them since our putting the soap in and in fact one day I changed his sheets to launder and bar must have fallen on floor other side of bed I didnt see it.. the next morning he said oh he had cramp back - later when making be discovered soap missing, put it back and hasnt had since. Am sure a quick internet search MIGHT give some information and I hope it's ok to mention this considering what you are going through and the medications and other health issues but just thought would mention and has anyone else ever heard of this or tried it? J.

I might try this as it cannot hurt....but for me it's starts early around 5 or 6 pm, but I still might try it...thank you

Hi, I like your idea of trying to find out what triggers it...problem is it's almost every day. We don't drink often and don't smoke, I don't use a lot of salt, but when I've used soy sauce to where it's a salty meal have not noticed a difference. Coffee is one thing we like, and I drink every day, but started using unsweetened almond milk and use so much it's basically a latte but just drip coffee. It cuts down on the amount of coffee I drink but I still drink coffee. a few years ago, I stopped for almost 3 weeks and didn't notice any difference, so I started again. I have wondered if sugar is a trigger but have not really tried to see if that's the case.
Pants...I don't wear tight pants especially when traveling, but sometimes they are so will start looking at that. When RLS is bad I'm moving mt feet and stretching my ankles, but if they are not bothering me then I tend not to move an inch if I can help it as it's rare, they are not bothering me. I always have a heating pad in my chair and use it often as that helps. Year ago, I bought this foot massager that also has heat but did not notice much help so only used it a few times. I really like the idea of a diary to see if I can find a trend. Sometimes support stocking feel good and help and other times they annoy me the second I put them on....lol I did discover when flying I use a thermo wrap on my back and it helps greatly when traveling.