Relief from RLS

By catrhall

1 min read

I have had restless legs now for 20 years I am 63 years old. I’m taking medication for it but sometimes that doesn’t even work, it is so miserable that I go through the day like a zombie then when I lay down at night is when it gets started.

I feel like there’s a monster in my legs I just have to get up and walk and walk and walk trying to relieve the misery. I’ve done everything I can over the years to try to get some relief. Maybe somebody out there has something I haven’t tried yet thank you very much for reading.

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Steffiep Member
I just found this site. I am trying to respond to the poor woman who is 63 and had RLS for a very long time. I know what the walking and walking is like. This is torture like the Nazi's undoubtedly used. The doctors don't seem to know what to do. Nor do they understand. My PCP told me to take the ambien at night but to take a nap until then...Nap...Nap. Who Naps...Who sleeps....
1. Lori.Foster Community Admin
 HI <inline-mention username="Steffiep" user-id="8791292"/>. Welcome to the community! I'm glad you found us. It sounds like your PCP is not very familiar with RLS. Here is an article about treatments: <a href='https://restlesslegssyndrome.sleep-disorders.net/treatment' target='_blank'>https://restlesslegssyndrome.sleep-disorders.net/treatment</a>. Ambien helps many people sleep, but it doesn't generally address RLS. Have you tried any of these treatments? Gentle hugs. - Lori (Team Member)
Writewaysusan Member
What a great site this is and thanks for the helpful hints. I’m 80 years old and have had RLS since I was 12. If I were to write all the different things I’ve tried, to no avail, it would cover two pages. I so understand the walk when you want to scream at the top of your lungs, “Wake up everyone because I can’t sleep therefore I need company and empathy!” Right now I’m doing as well as can be expected. I’m finding that these things are working most nights: magnesium-glutamine, potassium, iron, a little pink pill, NO SUGAR, water and 2 sleep aids, one over the counter and the other prescription. Does anyone else have the problem after a night of RLS, that your legs muscles hurt from kicking and walking and kicking? Like Tiny Tim said, “ Bless us everyone!” 
1. Lori.Foster Community Admin
 Hi <inline-mention username="Writewaysusan" user-id="8633797"/>. Thanks for sharing what helps. I am glad you found a combination that keeps your RLS in check most nights. I can see how it would take a lifetime of experience to figure that out! I imagine there must be others who have achy muscle after a night of all that activity. You might get more feedback if you start a Forum post with this question. Here is a link to the Forums, if you are interested: <a href='https://restlesslegssyndrome.sleep-disorders.net/forums' target='_blank'>https://restlesslegssyndrome.sleep-disorders.net/forums</a>. Wishing you the best! - Lori (Team Member)
2. Steffiep Member
 Oh yes. So so bad.
Lori.Foster Community Admin
Hi <inline-mention username="catrhall" user-id="4110870"/>. It has been a few years since you posted this story. I wanted to reach out and see whether things have improved for you or whether you are still struggling. Please know we are here for you whenever you need support or a safe place to vent. Gentle hugs. - Lori (Team Member)
JILLBROWN Member
I've been googling "treatments" for RLS - pills, creams, rubs, even machines. Are they all baloney or do some of them actually work?
1. Simone Yemm Member
 <inline-mention username="JILLBROWN" user-id="4535294"/> Some people swear by their treatments - even the odd sounding ones like banana tea or soap under the bedsheets. Different things definitely work for different people so it is often worth giving something a try. Personally I found lifestyle changes alongside magnesium and iron supplements helped me for many years. Eventually it deteriorated and I now use prescription medications. But I didn’t need them for many years. See what works for you! Cheers. Simone (Team Member)
Ray Li Member
<inline-mention username="catrhall" user-id="4110870"/> I am sorry to hear that medication doesn't always work for you, that's always frustrating. I am also sorry to hear that you have been suffering with RLS for as long as you have, it's definitely not an easy journey. At the same time, yay for surviving with this disease as long as you have. 👏🏻🙌🏻 Have you thought of doing a sleep study to see how much RLS impacts your sleep? I am hoping that we will have more advancements soon in the RLS/sleep disorder area.🤞🏻 Science is always advancing. Thanks for sharing with us all. Take care. 🌈🦄Ray (Team member)
Lucy Hoekstra Member
Hi Catrhall, I'm sorry to hear you’ve struggled so long. Unfortunately, you're not the only one. What helps me is to avoid as much stress as possible (but that can be difficult sometimes) and to do sports during the day. That last one is sometimes a bit difficult to find a right balance. For me walking and swimming early in the morning helps. But sometimes sports can also work as a trigger. Try to find out what works for you. Wish you all the best and remember you're not alone .
Joyce Ann Willis Moderator
Catrhall I feel your misery. I'm 66 years old and I've had RLS since I was 11 years old. So for half a century I've dealt with the agony of sleepless nights and exhaustive days and believe me I can empathize with you. At one time there was no medication specifically for RLS and I began my quest to find relief. There was no such thing as Google or the internet for that matter when I began looking for a "cure" for the monster that lurked inside my bedroom every night. I had an advantage being a Registered Nurse and was able to cut some corners to finding an answer to my problem. An although this syndrome was first described in the 1700's there wasn't much information in medical literature but I was determined to get a solution somehow. Some of the things I learned were hit and miss whereas others were right on in helping me to get through each night without an episode of RLS. The old saying that "An ounce of prevention is worth a pound of cure" is very true when one suffers from this agonizing syndrome. Let's look at some things I learned through the years. Since this is considered a sleep disorder then let's start with things that interfere with sleep to begin with. How much caffeine are you consuming throughout the day? Look at your coffee, tea and other drinks that can contribute to RLS. I discovered that chocolate was a big contributor to my RLS symptoms and I gave it up gladly. Another contributor was sugar especially in the evening so I limited sugar intake after 2pm. I had a tendency to be anemic during my childbearing years and I saw my primary healthcare provider for treatment. I knew I was anemic because I was suffering from Pica, an overwhelming desire to eat what is considered a nonfood, in my case salt and lots of it. I would almost cry if I couldn't get my salt fix which consisted of salt poured over crushed ice and eaten like a snow cone. I know weird but real! At the time that I became plagued with RLS night after night I also tried taking 600mg ibuprofen 2 hours before bedtime. Ibuprofen wasn't available over the counter at that time so I had to get a prescription from my doctor. I would take a hot bath right before bed. It seemed that adding Epsom Salt was even better and I would soak at least 20 minutes. It was me time and it did help a lot in allowing me to get to sleep before the monsters made their nightly appearance. How you dressed for bed affected how restful your sleep would be. I found that anything that fit to snugly around the waist or the top of the thighs at the groin would oftentimes contribute to having RLS. It actually seemed to help when I started sleeping commando style. Don't knock it until you've tried it. Another thing that helped was making sure I was drinking plenty of fluids and also making sure I was getting enough potassium and magnesium. It seemed magnesium was essential to my wellbeing but still it wasn't enough. I know exactly what it feels like to start "the walk". You're tired and need to rest just as all of us have to do. You lie down and within minutes there's the first twinge. Your mind argues, half asleep and says no, please no, not tonight. But as you're trying to drift there it is raising its ugly head. The uncontrollable need to move your legs and walk away the sensation of electrical charges going through your leg muscles. I discovered that walking isn't the only solution to helping relieve the tortuous feeling in one's legs and that is pressure. When we get up to walk away the "zings" going through our legs we are essentially putting our body weight onto our legs. Find something sturdy that one can put your feet against and press as hard as you can against the surface. It's better than walking and can actually get you to sleep faster than jogging around the house. If that means sleeping with your head at the foot of the bed then so be it. And last but not least. See your healthcare provider! Because one medication isn't working doesn't mean another won't either or even an increase in the milligrams of the medication you're taking will effectively treat your RLS. So let's do a quick review, avoid caffeine, sugar and chocolate. Stay hydrated. Treat anemia. Relax your muscles just before bedtime with a hot bath. NSAIDs may be helpful even as an adjunct to current treatment but again consult your PCP. See your PCP if you're not getting the relief you expected from a prescription specifically for RLS. As I told my doctor, I suffered for decades before any real treatment was available. I also told him that if I was allowed to have only one medication for the rest of my life it would be for my RLS. I think I made an impression on him that day as to how agonizing it is to have RLS. Peace always, Joyce
1. BarnGir1 Member
 I am so glad I found this older comment from Joyce. I have tried many things but Joyce listed some that I need to add or try to remember to do on a regular basis. Thanks so much for sharing. Barn Gir1 Aug8,2023
Simone Yemm Member
I'm sorry to hear you've struggled with RLS for so long. It's great to hear you have treatments that work for you sometimes, but sad to hear it doesn't work all the time. I hope you're able to take a little bit of time for selfcare during those exhausting days when nothing is working. Thank you for sharing your experience 😀 Cheers.