← Return to Restless Legs - Any suggestions as seen many doctors and medications

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@californiazebra

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.

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Replies to "Hi @3dogs Like you, I've had RLS for 50 years since I was a kid. I..."

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.