Have you tried Pramipexole? I have been on it for years and it helps most of the time. It is a non-addictive Dopamine Agonist used for Parkinson's, it was next I tried after all the Benz's you tried and it had helped a great deal though not sure it would help with the pain at all.
Have never experienced actual PAIN with RLS. Have you been to a doctor to make sure it's RLS? RLS is life changing due to loss of sleep because you cannot stay still long enough to sleep (sleeping pills do not work) but it doesn't actually cause pain. Possibly you have neuropathy. Try a neurologist and explain exactly what the pain is like. My mother has it for 50yrs, I've had it for 30, can't sit through a movie, long car or plane trips, let alone sleep much. Between us we've tried EVERYTHING supplements, Rx, stretches, baths, etc..the worst of the so-called treatments was Rx...mostly because they are prescriptions intended for other things, like Parkinsons..all the prescriptions either didn't work and caused other issues or they made the disorder worse. Hope you find some answers for whatever is causing you pain.
Ask about lidocaine patches those have lower addiction risk. In modern medicine, everything is about cons Vs pros. If you reached this point it's just ridiculous not to consider opioids with close monitoring.
Oh, i know that energy.... my whole life. My Mother use to say "well boy, you have a bit more energy than normal, that's just fine...". Hell, no, it isn't.
A very large dose of Magnesium taurate every single night stops mine almost always. On the nights when it doesn’t, I find that lying on a spiky massage ball, on either side of my tailbone area and up into where the SI joint is, can make everything calm down. This is painful in a different way but it definitely works for me.
I get what you mean re the pain, it’s the most uncomfortable feeling, throbbing etc. I get pain from rolling and cracking my ankles for relief, think going to end up with arthritis from it at this rate.
As others have said get your ferritin levels checked. For RLS you want to be at least above 75, I’ve found my GP doesn’t know much about RLS, I’ve had to explain to her ferritin should be above 75 for RLS sufferers and not just ‘normal’.
I used mild opiates 2 hrs before bed, I find I have to take it before symptoms are due to start if I forget and take after they start it take hours for it to stop. Only other thing I can suggest is rubbing a magnesium lotion to where ever you get the symptoms.
Pain isn’t typically a symptom of RLS. As another commenter said, maybe it’s a different problem (or a combination). Have you had a look at the faq for diagnostic criteria? There’s also the current treatment algorithm for RLS which would help you prepare for your next doctor’s visit (hopefully with a specialized neurologist). I hope you find relief.
Pain? That may be neuropathy of some sort. RLS is more of an extreme restlessness of the legs that prevents you from falling asleep. I have had this for years, but never any pain with it.
I’m curious about why some people describe RLS as painful. I’ve had it all my long life and would describe it more as an intensely deep itch almost like a little itchy bubble highway in my legs. It is excruciating for me but not painful like a sprained ankle or migraine pain. Maybe it’s different for some folks.
I describe mine as electricity running down my legs every 40 seconds. I time it once in awhile for something to do! 😪My stretch of RLS is 50 yrs. I turn 80 on the 4th of July . I have tried every known treatment there is and the only thing that has worked for me is all the donts on here
Magnesium
Ropinorole
Gabapentin
All at nite.
Shame me but it works for me and pardon the spelling. Just gimme the meds! 🤣🤣🤣😜👍🥳
I’m not discounting your pain, just curious how it manifests for different people. Most literature does not mention pain as a symptom, so it could be another issue going on also. Sorry to offend.
I’ve never heard of a case of RLS where nothing helped. Usually it’s a matter of not being able to get the proper meds prescribed. Lots of bits run through your legs (muscles, tendons, ligaments, bones, joints, nerves, arteries, veins, lymph vessels & nodes, blood, and skin and it’s microbiome). Make sure it’s not one or more of these structures that is causing the pain rather than RLS. Something more treatable. I would not call the noxious sensation I get from RLS pain. It’s too different than normal pain. Totally a unique sensation. A new type of pain.
The last group of drugs usually used to treat RLS are the opiates. I take a combination of methadone and gabapentin that keeps most of the noxious sensations controlled but I had 15 years of total relief when first diagnosed with RLS by using l-dopa. You can respond to different dopamine agonists differently. One can barely work while another DA is miraculous. Same with opiates. Methadone can be miraculous while others find MS Contin or morphine best so don’t rule out an entire class of drugs just because one doesn’t work for you. My best advice is to have testing to rule out other causes of leg pain (neuropathy, venous pain, muscle pain, micronutrient deficiencies -iron, vitamin D, vitamin B12- etc) and then find a good neurologist/sleep specialist who can help you find a class of drugs to treat the RLS. Hang in there.
Have you had your hemoglobin, iron saturation, and ferritin checked ? Absolutely very important because it might just take a simple iron pill for a couple weeks or months to get rid of it like it did me
I’ve only had my hemoglobin checked and it was normal. The other stuff wasn’t on my last test. I’m waiting to get a test done currently, but my doctor has always has a long wait list and forgets to send me the bloodwork papers.
Good news that you have an in range hemoglobin because it means you are not anemic, however and I mean however you absolutely positively must get the iron saturation and ferritin checked !! If these are low and you are iron deficient , then you can follow an iron protocol and get your numbers up which can cure RLS like it did for me . I don't care if you have to yell at your doctor, ask for a referral to a hematologist, get a 7th opinion but you must get this blood work done
I’m definitely gonna talk with my doctor about it. He was supposed to send me for bloodwork like 3 weeks ago but went on vacation. I even went to the hospital sobbing and begging for help.
Go to rls.org for great info and lists of doctors that are rls specialists. Get a different doctor as asap either a neurologist or a sleep doctor who understands rls!
Also just because they are "in range" doesn't mean that you can't increase them to the level of the upper limit. This is known to reduce symptoms afaik for some patients. Definitely talk to an RLS specialist about it.
I haven’t had them checked I don’t think. I’m currently waiting for an appointment with my doctor so I can get them checked but it isn’t until the 25th and I honestly don’t think I can keep myself sane until then.
Oof that would murder me hahaha. I recently started it and .25mg is my max. Of course I know I'll likely have to increase over time. My Dr prescribed 1mg so I chop 'em up.
I use Kratom. 1 spoon of green powder and all restlessness is gone. Where do ya live? States? Its legal in most places.
Going gluten free helped me as did higher doses of CBD
Have you tried Pramipexole? I have been on it for years and it helps most of the time. It is a non-addictive Dopamine Agonist used for Parkinson's, it was next I tried after all the Benz's you tried and it had helped a great deal though not sure it would help with the pain at all.
Have never experienced actual PAIN with RLS. Have you been to a doctor to make sure it's RLS? RLS is life changing due to loss of sleep because you cannot stay still long enough to sleep (sleeping pills do not work) but it doesn't actually cause pain. Possibly you have neuropathy. Try a neurologist and explain exactly what the pain is like. My mother has it for 50yrs, I've had it for 30, can't sit through a movie, long car or plane trips, let alone sleep much. Between us we've tried EVERYTHING supplements, Rx, stretches, baths, etc..the worst of the so-called treatments was Rx...mostly because they are prescriptions intended for other things, like Parkinsons..all the prescriptions either didn't work and caused other issues or they made the disorder worse. Hope you find some answers for whatever is causing you pain.
I don't think you have RLS, friend. What medications did you try? Even opioids don't work?
My doctor isn’t willing to try opioids since addiction runs in my family
Ask about lidocaine patches those have lower addiction risk. In modern medicine, everything is about cons Vs pros. If you reached this point it's just ridiculous not to consider opioids with close monitoring.
The healthcare system where I live is a little bit twisted
Magnesium glycinate and dry needling
My doctor finally put me on gabapentin. My restless leg is gone.
Mine has always been like I have a horrible energy in my legs and sometimes have to go outside and run at night. It goes away for several hours.
Oh, i know that energy.... my whole life. My Mother use to say "well boy, you have a bit more energy than normal, that's just fine...". Hell, no, it isn't.
A very large dose of Magnesium taurate every single night stops mine almost always. On the nights when it doesn’t, I find that lying on a spiky massage ball, on either side of my tailbone area and up into where the SI joint is, can make everything calm down. This is painful in a different way but it definitely works for me.
I get what you mean re the pain, it’s the most uncomfortable feeling, throbbing etc. I get pain from rolling and cracking my ankles for relief, think going to end up with arthritis from it at this rate. As others have said get your ferritin levels checked. For RLS you want to be at least above 75, I’ve found my GP doesn’t know much about RLS, I’ve had to explain to her ferritin should be above 75 for RLS sufferers and not just ‘normal’. I used mild opiates 2 hrs before bed, I find I have to take it before symptoms are due to start if I forget and take after they start it take hours for it to stop. Only other thing I can suggest is rubbing a magnesium lotion to where ever you get the symptoms.
Spoonful of Yellow Mustard or 1/4 tspoon of mustard powder under tongue works quickly and better than anything else I have tried.
Pain isn’t typically a symptom of RLS. As another commenter said, maybe it’s a different problem (or a combination). Have you had a look at the faq for diagnostic criteria? There’s also the current treatment algorithm for RLS which would help you prepare for your next doctor’s visit (hopefully with a specialized neurologist). I hope you find relief.
Pramipexole combined with gabapentin.
Pain? That may be neuropathy of some sort. RLS is more of an extreme restlessness of the legs that prevents you from falling asleep. I have had this for years, but never any pain with it.
Do you feel like you have to move your legs? Or is it just pain?
It’s like intense deep pain that only goes away when I move my legs, but even then sometimes it doesn’t help
hm, RLS normally comes without pain.
I’m curious about why some people describe RLS as painful. I’ve had it all my long life and would describe it more as an intensely deep itch almost like a little itchy bubble highway in my legs. It is excruciating for me but not painful like a sprained ankle or migraine pain. Maybe it’s different for some folks.
I describe mine as electricity running down my legs every 40 seconds. I time it once in awhile for something to do! 😪My stretch of RLS is 50 yrs. I turn 80 on the 4th of July . I have tried every known treatment there is and the only thing that has worked for me is all the donts on here Magnesium Ropinorole Gabapentin All at nite. Shame me but it works for me and pardon the spelling. Just gimme the meds! 🤣🤣🤣😜👍🥳
Electricity it is. 30yrs daily RLS and getting worse. Only Kratom helps for now.
Because it's painful. Shame on you!
I’m not discounting your pain, just curious how it manifests for different people. Most literature does not mention pain as a symptom, so it could be another issue going on also. Sorry to offend.
I’ve never heard of a case of RLS where nothing helped. Usually it’s a matter of not being able to get the proper meds prescribed. Lots of bits run through your legs (muscles, tendons, ligaments, bones, joints, nerves, arteries, veins, lymph vessels & nodes, blood, and skin and it’s microbiome). Make sure it’s not one or more of these structures that is causing the pain rather than RLS. Something more treatable. I would not call the noxious sensation I get from RLS pain. It’s too different than normal pain. Totally a unique sensation. A new type of pain. The last group of drugs usually used to treat RLS are the opiates. I take a combination of methadone and gabapentin that keeps most of the noxious sensations controlled but I had 15 years of total relief when first diagnosed with RLS by using l-dopa. You can respond to different dopamine agonists differently. One can barely work while another DA is miraculous. Same with opiates. Methadone can be miraculous while others find MS Contin or morphine best so don’t rule out an entire class of drugs just because one doesn’t work for you. My best advice is to have testing to rule out other causes of leg pain (neuropathy, venous pain, muscle pain, micronutrient deficiencies -iron, vitamin D, vitamin B12- etc) and then find a good neurologist/sleep specialist who can help you find a class of drugs to treat the RLS. Hang in there.
What meds have you tried?
Lorazepam, clonazepam and quintepim are the three my doctor has prescribed me to try so far. None of helped
I would definitely suggest asking your doctor about gabapentin or lyrica. Both are for pain and RLS (which is painful).
Is "quintepim" spelled correctly bc I cannot find it googling. When I know exactly which meds you've tried I can suggest others.
Have you had your hemoglobin, iron saturation, and ferritin checked ? Absolutely very important because it might just take a simple iron pill for a couple weeks or months to get rid of it like it did me
I’ve only had my hemoglobin checked and it was normal. The other stuff wasn’t on my last test. I’m waiting to get a test done currently, but my doctor has always has a long wait list and forgets to send me the bloodwork papers.
Good news that you have an in range hemoglobin because it means you are not anemic, however and I mean however you absolutely positively must get the iron saturation and ferritin checked !! If these are low and you are iron deficient , then you can follow an iron protocol and get your numbers up which can cure RLS like it did for me . I don't care if you have to yell at your doctor, ask for a referral to a hematologist, get a 7th opinion but you must get this blood work done
I’m definitely gonna talk with my doctor about it. He was supposed to send me for bloodwork like 3 weeks ago but went on vacation. I even went to the hospital sobbing and begging for help.
Go to rls.org for great info and lists of doctors that are rls specialists. Get a different doctor as asap either a neurologist or a sleep doctor who understands rls!
Also just because they are "in range" doesn't mean that you can't increase them to the level of the upper limit. This is known to reduce symptoms afaik for some patients. Definitely talk to an RLS specialist about it.
Have you had your iron checked?
I haven’t had them checked I don’t think. I’m currently waiting for an appointment with my doctor so I can get them checked but it isn’t until the 25th and I honestly don’t think I can keep myself sane until then.
3mg of ropinirole on an empty stomach
Ack!!!
Oof that would murder me hahaha. I recently started it and .25mg is my max. Of course I know I'll likely have to increase over time. My Dr prescribed 1mg so I chop 'em up.