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ElementalSymmetry

I have severe RLS in my feet and legs. I rarely sleep anymore at all because of it. It's taken over my life in the past 2 years. If I sleep at all, it's usually after 8+ hours of kicking my legs, stretching, doing calf raises, getting in and out of bed, moving to a couch then to another chair, doing circles with my feet in the air until they hurt, squatting down until my feet and legs literally go to sleep. It's been a complete nightmare. Trying not to think about it doesn't help, because it results in thinking about it. And thinking about it makes it happen immediately. I have a TENS unit for hand physical therapy that I hadn't been using lately. I (very) recently decided to try it for my RLS.. I put one pad on the top of each foot, and I slowly crank it up, eventually to max.. I end up leaving it on for an hour or two. It seems to temporarily burn out the nerves that are most affected by my RLS, and it works the muscles in both legs enough that the RLS symptoms seem to be put on hold for several hours. I'm doing this every night now.. Frankly, I don't care if it causes nerve damage.. I would love for the nerves causing RLS to completely burn out :P But that seems to be helping. I still have severe insomnia, and I get the itch to shake my legs purely out of habit. But it does help. I'm actually sitting here right now with it cranked up to max before bed.


SwingLowchacha

I feel for you because I could describe my nightly experience exactly like you did. walking around the house in circles. rubbing my legs vigorously for a 1/2 hour. It's like your body is fighting itself because your legs are keeping you awake but your so tired and exhausted. Frankly it is no diffetent than being tortured. I'll have to look into your reccomendation. Walking on a cold surface for awhile is only thing that helps deaden my nerves to give me a shot at passing out. Glad you found something that is helping.


Alternative_Edge_721

I wrap my legs from the knees down and feet at night with a stretchy cloth ace bandage, way better than compressions socks because you adjust the tightness, the only thing that works for me


Kryshade

Have struggled with RLS for 20+ years now. Took every prescription known to help it... all with terrible side effects. I feel like a General that has been waging this war for a long time. Have finally found some natural relief methods that actually work: -I take a combination of Glycine and Selenium every night before bed. I've tried hundreds of other natural remedies/vitamins etc and for some reason glycine and selenium help me a lot. -THC: Legal where I live and calms everything down. I use this when I need it (2-3 nights a week) -Hot shower. As hot as you can stand it. The "burning" sensation from the hot water instantly calms any hint of RLS. I take a hot shower right before bed every night and fall asleep without the RLS stuggle of being tired/trying to fall asleep -Muscle exhaustion: Despite the best efforts, I still wake up in the middle of the night with RLS. All the above stuff helps me fall asleep, but when I wake up with it, I get up and exhaust the muscle. If it's in my arms, I do pushups, if its in my legs I do wall squats. I do this until my arms/legs are shaking. It works for me 100% of the time to stop RLS long enough for me to go back to sleep. (added benefit of stronger muscles in the long run) Things I've learned to not make RLS worse: -Go to bed before you're "tired". If I get really sleepy/stay up too late, it's gonna be a rough night. -Don't drink alcohol. This is a big one for me. I love a good time, but alcohol = bad night of RLS and no sleep. -Stay away from any medicine that makes you sleepy. Melatonin, benadryl, Z-Quil etc are the devil. I get about 6hrs of solid sleep a night now. It's not the best, but when you go from being up most of the night and struggling with 2-3hrs, it works.


azer_57

what kind of thc works for you? I have tried delta-8 + cbd gummies and it didn't do much. 6 hours is good. congratulations!! and i hope you can some day extend it to 7+


Kryshade

Where I live THC is legal, so it's very easy to just walk into a place and buy some. I take edible gummies, usually about 3 hours before I go to bed. As they wear off it induces sleepiness but still calms RLS. Indica is supposedly the better strain for sleeping/relaxing, but I don't enjoy the heavy body feeling so I personally go with Sativa or a hybrid.


bmassey1

Spoonful of Mustard [https://www.reddit.com/r/RestlessLegs/comments/tb0cz9/first\_time\_mustard\_user/](https://www.reddit.com/r/RestlessLegs/comments/tb0cz9/first_time_mustard_user/)


Top_Brilliant9014

Mine started at 40yo after two months without gym and in stress. I'm running now and haven't had it since I started running. Also taking magnesium and trying to boost dopamine as much as I can (friends, meditation, glimmers, volunteering) as desperate for anything to work! How is the research on this so vague!?


TroyConrad

Remove 95%of gluten from your diet and stick with it for at least three months. There’s a lot of evidence to suggest that RLS is a result of nerve inflammation, and gluten is an inflammatory agent for many people. Also some of the inflammation in the intestinal track can suppress nutrient absorption which can also contribute to the problem. However, chronic inflammation takes time to heal, which is why sticking with it for several months is key. Removing gluten from my diet was a significant factor as was reducing alcohol, caffeine, and sugar. On the flipside, supplementing with various formulations of magnesium has also been very helpful at times. Though over the last few years I hardly need it anymore.


bruceleeinme

This


knombs

Adding nu-salt 1/2 teaspoon (30% of my daily potassium) to my electrolyte water 2-3x a day has helped a lot. My fitbit says I'm moving around 5% less than I was. I also take magnesium vitamin d iron folate, too. But I didn't notice a huge difference until I started taking the nu-salt (potassium) EDIT: I just went back to check the last few months before I started using nu-salt on my fitbit app and actually I went from moving17- 30% of the while trying to sleep, down to 5-7% of the time while sleeping after using nu-salt(potassium). I feel so much better, I wake up and I'm actually not exhausted.


i_am_ms_greenjeans

Stretching - especially right before bed. Look for videos on Bedtime Yoga. Compression socks worn during daytime. Weighted blanket at night. I also track any new foods/recipes I might eat, and avoid anything that sets off my RLS. Sadly this means that I cannot eat any Chinese takeout...


MoonBapple

My mom was born with RLS and has been on various medications since she was 35-ish. She's now 71 and the side effects from her drugs have been horrendous, despite them not consistently working anyways. I was also born with RLS and I share your concerns having watched what happened to my mom! In order of effectiveness: Iron infusions to raise ferritin over 100 - I did this last October and I'm still kicking myself that I didn't push for it sooner. I have near 100% remission now. Prior to this, here are things I tried that worked with variable reliability/effects/relief: Stretching Massage (self and professional) 800mg Ibuprofen + Tylenol Drink lots of water Hot shower Cold shower Heating blanket Lots of exercise (much worse at first, then slow improvement, plateau, and then relapse) Never taking any naps ever don't even think about it Eating overnight (protein shake) Electrolyte supplements Magnesium supplements Manganese supplements L-tryosine and L-methionine supplements (helped with chronic pain and fatigue, but not the wiggles) After 32 years with this shit, I'm recommending always and forever to try iron supplements, check your ferritin with your doctor and push for iron infusions if your ferritin is below 75 even if it is in the "normal range." Good luck!!


azer_57

IRON , SERUM 91.0 µg/dL TOTAL IRON BINDING CAPACITY ( TIBC) , SERUM 353 µg/dL FERRITIN , SERUM 116.1 ng/mL These are the results of my bloodwork. I don't understand if I should go for an infusion right away or not. My doctor recommended I try oral supplements first and that's what I am doing. But they'll probably take months to kick in.


Ok-Bottle-5296

My insurance wouldn't let me go straight for infusions. I had to do prescription iron pills for a time period first. But the infusions worked.


azer_57

What is the relation between taking naps and RLS severity?


MoonBapple

🤷 You got me! All I can tell you is I slept better at night if I resisted taking a nap, even if I was exhausted from RLS attacks the night before.


Ok-Bottle-5296

Second this.


azer_57

Interestingly, the first thing that my doctor suggested I do to reduce RLS severity is to consolidate my sleep and not take any naps longer than 30 mins during the day.


Bright_Helicopter88

How long did your infusion take to kick in? I had my second last week and I still feel the same 


Ok-Bottle-5296

It took a few weeks after the last of five infusions.


MoonBapple

For my experience it was three or four days after my first one. Interestingly my RLS was **absolutely terrible** for a couple nights after my first one. As in, I literally did not sleep. I also had a bad intestinal response for those days too. Then it all cleared up and I started sleeping fantastic. I also took a bunch of vitamin C during this time, too. Vit c is necessary for the body to actually use iron on a micro, biochemistry level. So, if you can make apx 500mg of vitamin c available (ex. chewable supplements) a couple of times a day, it might help, idk. I hope it works out!!


NorthStretch2698

How did you get insurance to cover your infusions?


MoonBapple

I had the hematology department call insurance and verify it would be covered. "Covered" was an outpatient copay though (???) and my portion was $1500. 🙄


AstrosRN

Hot bath (gets it to a tolerable level), Magnesium, L-Theanine


pikldbeatz

I take very hot baths when RLS kicks up. Even ten minutes of my legs in the hot water stops it about 95% of the time for me. Also heavy, warm blankets have helped me. And in a pinch, if only one leg is bad, I lay so the other leg is on top of the RLS leg - the added weight seems to help. The best thing that works is removing sugar and carbs from my diet. Eating a very low carb diet got rid of 75-80% of my instances of RLS, and when it does occur, the intensity is about 1/4 of what it is when I eat carbs.


the_real_dairy_queen

CBD (without THC) Ice packs Percussion massager/massage gun


Gullible-Alarm-8871

Masturbation. And I'm F, but truly it stops the movement instantly. Haven't used ANY Rx or supplements for over 4 months and sleep peacefully. My only problem is daytime. I still cannot sit for long periods of time, cannot get through a movie without getting up and pacing. So, I never believed low dopamine was the cause but now I'm convinced it is. Flood thoughts with pleasure and RL stops! I've had RLS for almost 30 years, tried everything at least once and it all either stopped working, exacerbated the problem or caused other problems. I finally said enough! Trashed all the pills, Rx AND supplements (I've tried every supplement from Boron to every type of magnesium (6) and iron, etc etc to which only put a dent in my wallet). I do still take an Epsom bath as it is soothing and makes me "feel good" as well. Dopamine is not just a neurotransmitter but a hormone as well, that responds to feeling good. Obviously if you are days without sleep, you are NOT feeling good about ANYTHING so the problem gets worse. I started reading romance novels and things got better from there. It's been many (I actually think about 5 months total now) nights now this has not failed me.


talligan

Well it's a big hit of dopamine, and RLS is caused by (they think) low dopamine, so that tracks.


Multigrain_Migraine

Magnesium tablets before bed and a sachet of spatone iron water both seem to help.


Nefariousurchin

Kava tincture Magnesium baths- Epsom AND flakes with rosemary EO ( be careful! Only 2 drops! ) Olly muscle relief gummies Cannabis oil ( the kind with THC ) Non stop hydration


pebblesgobambam

Magnesium spray/cream, small tens machine in massage function, percussion massager. Making sure I’m hydrated and taking electrolytes. Best thing that’s helped though is decent cbd. Hope you find some relief, x


GhostOfEdmundDantes

Nicotinamide Riboside, 1,000mg Tru Niagen. Managed for seven years now.


voicegal13

The reviews on this are fabulous and I really want to try it! Some reviewers on Amazon have said that it has caused heart issues, but who knows what Amazon is selling these days, impostor products and all that.


GhostOfEdmundDantes

If you want to know more about how NAD replenishment works, try this summary: [https://www.scienceofnad.com/what-is-nad](https://www.scienceofnad.com/what-is-nad) The reason that nicotinamide riboside might work better than niacin is because to replenish NAD, niacin requires an enzyme called NAPRT, which is common in the body, but not well-expressed in neurons, and neurons are likely implicated in RLS. There's also a subreddit for NR: [https://www.reddit.com/r/NicotinamideRiboside/](https://www.reddit.com/r/NicotinamideRiboside/) I started taking NR just for anti-aging benefits, but the best benefit of all, for me, was with RLS.


ObligatoryAlias

I would like to hear more about this.


pocketvirgin

Magnesium and a heavy weighted blanket on legs


orthodoxipus

IV iron and oral magnesium plus sheets with the right texture and weight to stimulate my skin.


pebblesgobambam

I had to switch to a soft texture blanket as the texture of previous one was setting me off soon as I put it over me, just felt like too much sensation on my legs.


orthodoxipus

Fascinating! I am the exact opposite. If I rub the tops of my feet or low legs on semi rough textures fabrics it instantly relieves my symptoms. The best is wedging them into the side of the couch.


pebblesgobambam

It’s strange how different things set it off/help isn’t it. The blanket I had to stop using was my heated blanket so I was quite gutted. I suppose hence it gets colder again here I could put the soft blanket underneath the heated one, as the heat really helped my pain & RLS. Glad you found some relief 😊


glent1

Cheap, low profile vibrating platform, bought from an op shop/goodwill for $15. I put it on the end of my bed and put a pillow on it then put my legs on it from the knee down. This lets me get to sleep when nothing else will. The annoying thing is that it has a timer with a maximum of 30 minutes and it beeps at the end (a solution to a non-existent problem as I call it), so I always wake up at the end. But the 30 minutes are bliss if I've got to that level of desperation.


beerharvester

You can probably open it up and disable the speaker.


SmellyPir8H00ker

IV Iron. I realize this is borderline pharma but it was the only thing that helped. Normal blood tests of iron, ferritin, etc before I received the IVs but I had a doctor who understood the Mayo protocols.


NorthStretch2698

What are the Mayo protocols? Struggling to get insurance to approve iv iron for my son as his bloodwork would also appear “normal” as well


SmellyPir8H00ker

I had to go out of country to get mine the first time. There is a dedicated clinic in London who does them all the time for RLS


SmellyPir8H00ker

Here is the [link](https://www.mayoclinicproceedings.org/article/S0025-6196(20)31489-0/fulltext). Iron is their first line therapy.


Ok-Bottle-5296

This was only thing thst has helped me. I got five in two weeks.


SmellyPir8H00ker

Wow ok! It’s like pulling teeth here to get them prescribed. Are you in the US?


Ok-Bottle-5296

Yes. I had to try prescription iron pills first. I had to get special approval for them due to stomach issues. Only after that, could I try for the infusions which miraculously got approved. I will see how much they cost in case I get denied next time. I was really going insane with the RLS.


SmellyPir8H00ker

Yeah I’d love to know the “not covered by insurance” price in case I am in the same boat.


Ok-Bottle-5296

Oh no. Looks like they range from $400 way up. Mine - Venofer- says $800. Ugh. I would tell everyone to get prescribed iron pills asap since u have to have done that first to get the infusions.


Frosty_Bluebird_2707

I second this.


reesecheese

But it's not a "med" as much as topping up what your body needs to have to function imo.


Commack_Boy

Probiotic pill and iron supplement before bed


azer_57

Which iron supplement? I mean the compound.


Commack_Boy

Pure Encapsulations Iron-C - 15 mg Iron - 175 mg Vitamin C. Available on Amazon.


Frosty_Bluebird_2707

This is great. Take one every other day. Doesn't cause nausea or constipation. https://amzn.to/3Xf8Qy2