Restless Legs - Any suggestions as seen many doctors and medications
Hi, I’m new to Mayo Connect but here goes…I have had RLS (Restless Leg) for about 40 years and it started with just occasional problems to now it’s daily at 66 yrs old. I had an unacceptable reaction to a few different meds like Gabapentin and also other meds used to also treat Parkinson’s and the last one they wanted to try had so many BAD side effects that I said no as I have reactions to many types of prescription medications including over the counter Antihistamines, Aleve etc. I do take extra B-complex, Vitamin D, Magnesium, Potassium, tried Iron etc. I often get leg cramps or ankle and foot cramps and remember my mother having them all the time. It doesn’t seem to make a difference if I exercise or not and mine will start late afternoon or evening. I toss and turn at night and I’ve actually made a hole in my sheets before because of moving my legs/feet so much. Occasionally my arms will also bother me. Heat, support stockings, warm shower or bath can help sometimes, but have noticed what works today will not work tomorrow so it’s what do I want to try tonight as again its rare if I skip a day. Just adding to my leg issues … 8 years ago I had an extreme 3 disc fusion in my lower back that was successful, but I woke up in the hospital with both legs and feet numb, which is common, but mine did not go away. About a year after surgery a neurologist said I had some nerve damage in my legs which might or might not go away, plus ankles very tender. Numbness is now mainly in lower calf (so much better) and feet plus ankle tenderness. Told I had neuropathy probably from the back surgery. I can live with sore/numb but the RLS is bothering and need to find relief. I recently moved to another state and my new doctor (after he touched my ankle and I nearly jumped off the table on him) had me go to a neurologist. With his testing he said I did not have neuropathy and he ordered spine CT which was fine, blood work including for RA etc. and all fine. Anyone, have suggestions? Again, I can live with the numbness, but the restless legs are what bother me. Not only is it uncomfortable/ache for me, but I start bouncing my legs, feet, Stand up/down, walk around and back to tapping my feet etc. so I annoy everyone.
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Ropinerol completely stopped my RLS. Another drug that worked nearly as well was Sinemet. Before finding these drugs, prescribed by my neurologist, I had taken all the supplements you mentioned and got no relief at all.
I highly recommend these drugs and suggest you see a neurologist for treatment. The problem is in your brain rather than your legs.
Blessings,
Karen
The magnesium glycerinate per pill is 240 mg ( I believe; I ran out and need to purchase more) one pill wasn't enough, and I doubled it. Then I read 500 mg is the dosage, and began using 4 pills, then determined though another forum I am with, that six pills at 240 ( I can't recall if 240 g was two pills) The pain management doctor recommended magnesium glycerinate, not citrate, as the glycerinate works through your body. Many RLS suffers use glycerinate at well.
I would look into using another neurologist. How dare he abruptly walks out on you, because he wants you to stay on the pregabalin. The defense agonist (DA)of pregabalin is not used today by neurologists due to augmentation, which I suffered as well two years ago. The neurologist I saw had me go off pramipexole due to an increased dosage in one year. It was hell, and I had nothing to counter it. I slowly tampered it down, and lost many nights of sleep. He then prescribed methadone, of which I was set-dead against. I switched to another neurologist who is a good one, only to find out he too prescribed methadone, and knew after research, this is the correct path. I began small, and worked up to 20 mg, too high in my opinion, but it did work, except for the painic attacks. This struck me at any time, airplanes, medical testing, and it was alarming. I tapered down from 20-5 mg over 2-3 months, where I am at currently. I continue to have break-through RLS after the nightly methadone pill, and take a codeine with acetaphemin. I am set to see a sleep specialist with Mayo soon, and curious to see what they say. I have had two sleep studies, one in 2016 and one in 2023.Both inconclusive. I hope the Mayo doesn't prescribe another one. After experiencing RLS for over 25 years, I am doomed for life with this crazy disease, and can operate well the next day with only a few hours of sleep.
I would search for another neurologist. Since arriving at our current location, I have seen four, yet I am not a textbook case, and I am not wild about the methadone. I don't know what else is out there, as I have exhausted all medications out there for this wicked disease.
I have also tried a prescribed muscle relaxant and a pill with the same ingredients as those for
Parkinson's Disease patients. They are of no help, and I'm back to taking Pramipexole again.
RLS is VERY frustrating, but I keep on plodding along.
In WA state my Sleep Dr. is allowed to prescribe NORCO 5/325. That combined with 1600mg Gabapentin when I go to bed has helped keep it tolerable.
Try really tight support stocking again. I had the creepy crawly type RLS years ago and stockings stopped the need to move. It went away for years although coming Back again probably due to low ferritin.
Best compression stockings at low price were from AmesWalker.com.
No side effects like meds.
Worth a try
I've had RLS for decades and have recently tried compression stockings. I think they're helping! I wish someone had suggested them a long time ago.
yes, everyone seems to jump right away to drugs which of course have enough side effect. I came up with the idea one day when I had myself covered in ace bandages and looked like a mummy. I found that the compression seems to reduce the need to move even though you still fell it a little. I did a survey at a RLS site and almost anyone who tried it found relief, but many just dismissed it out of hand.
I did find relief from it. I now am using Noctrix Nidra sensor bands that you wear below your knee. They work quite well. However, I also take a med combo before bed. My severe (refractory) RLS is now under control. I would recommend the sensor bands.
Support stocking help but not every day...sometimes they just annoy me to the point I cannot get them off fast enough. LOL I have knee high support and also just the foot ones and use both off/on. When traveling I wear the knee high and a thermal wrap on my back and it helps when in a car or flying. For me nothing worked every day so sometimes support helped or worked and other times nothing or as I stated they annoyed me. Again, I have unacceptable reaction to gabapentin and all the other meds the doctors have prescribed. In some ways I'm glad I had a reaction to the medications as I've heard some bad things about some of them...The CBD with little THC 60:1 has worked for over a month now with no side effects. Couple of times I had a slight sensation in my legs, but nothing like normal and didn't notice at night at all.
I'm 70, female, have had trouble sleeping since I was a child. I joke, even though it's not funny, that I'm 60 years behind on my sleep
Twitchy legs were also a problem. My sleep difficulties were getting worse recently so, with my GP's help, I tried Dayvigo 10mg with Zopiclone 3.75mg. I also take Mg Bisglycinate 200mg with those meds. It worked! I fall asleep quickly, which I've never experienced before, and I get hours of deep, quality sleep. Also, one perk is just how "quiet" my body is. No more twitching or tossing and turning. I can lay still comfortably till I fall asleep. I'm sticking with these meds forever! Maybe they can help you too.