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Restless Legs - Any suggestions as seen many doctors and medications

Posted by 3dogs @3dogs, Sep 25, 2023

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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slip275 | @slip275 | Jun 25 3:47am
In reply to @3dogs "Thanks for the info and waited to reply as had an appointment with a neurologist couple..." + (show)
@3dogs

Thanks for the info and waited to reply as had an appointment with a neurologist couple of days ago. First it was the 2nd time I saw him and disliked him even more after this appointment...lol so he was not any help. I need to find another. I take B-Complex but wonder if I should try the B12 instead. On the Magnesium you stated that you take 6 capsules. What mg is each one? While waiting for this appointment I asked 2 different pharmacist, and both said that magnesium is not just flushed from your system like some vitamins and so should be careful how much I take. Tried to talk to this neurologist about it, but he could not be bothered to answer other to say what I take now was sufficient. I have had Iron test in past and even took extra Iron for about 8 months with no change so current primary said to stop since my levels were good. This neurologist mentioned another Iron test but said levels could end up being good, but body/brain not absorbing which I had just read about....he said no way to test that part. because I have had reactions to 4 different types of meds for RLS he wanted to give me pregabalin, but he got mad when I said no. My primary had given to me and when reading the side effects, it scared me. I know everything has side effect, but pregabalin seemed to have very serious side effects and because I have reactions to many types of medication including the 4 given for RLS that I was scared to take. I even have reactions to benadryl so I'm the person with the bright pink wrist band when in hospital for surgery...lol Will see what this new Iron test shows and think I will try the extra magnesium. While I don't think my mom had RLS she did have leg cramps all the time...I remember even as a kid that my mom would jump up from leg cramps. I get leg cramps often; some medications give me foot/ankle cramps. example recently I started taking prescription Omega 3 and now have leg/foot/ankle cramps every day, which I had planned to discuss with the neurologist, but after I said no to the pregabalin he was mad and he said he had another patient and left. think I was with him for about 10 maybe 12 minutes. I take 150 mg trazadone to help me sleep and even with that I move so much that have worn a hole in bottom sheets. I've taken that for about 25 years when a doctor discovered I hardly slept and just had surgery which is not good. my brother only sleeps about 3 or 4 hours a night and several things have not helped him... I know trazadone can irritate RLS so tried to stop in 2019 and didn't sleep for 30 days. Recently my primary said I should not have stopped cold turkey on my own...he had me take 100 for 2 weeks, then 50 then none...for 6 weeks I had almost no sleep and my legs bothered me even more or rather with no trazadone to help me sleep I feel the full effect of RLS so after 2 weeks of nothing and no difference in my legs I started taking it again. My legs will bother me even during the day or evening and can be worse if too much activity or if too little...lol Its a rare evening when my legs don't bother me so when they don't, I will sit and not move my legs....I will not even twitch my toes...and wait until the very last minute to get up and go to the bathroom and then hope my legs don't start bothering me. Ive tried so many things it crazy.

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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

REPLY
vikkitennis | @vikkitennis | Jun 25 7:29am
In reply to @3dogs "Thanks for the info and waited to reply as had an appointment with a neurologist couple..." + (show)
@3dogs

Thanks for the info and waited to reply as had an appointment with a neurologist couple of days ago. First it was the 2nd time I saw him and disliked him even more after this appointment...lol so he was not any help. I need to find another. I take B-Complex but wonder if I should try the B12 instead. On the Magnesium you stated that you take 6 capsules. What mg is each one? While waiting for this appointment I asked 2 different pharmacist, and both said that magnesium is not just flushed from your system like some vitamins and so should be careful how much I take. Tried to talk to this neurologist about it, but he could not be bothered to answer other to say what I take now was sufficient. I have had Iron test in past and even took extra Iron for about 8 months with no change so current primary said to stop since my levels were good. This neurologist mentioned another Iron test but said levels could end up being good, but body/brain not absorbing which I had just read about....he said no way to test that part. because I have had reactions to 4 different types of meds for RLS he wanted to give me pregabalin, but he got mad when I said no. My primary had given to me and when reading the side effects, it scared me. I know everything has side effect, but pregabalin seemed to have very serious side effects and because I have reactions to many types of medication including the 4 given for RLS that I was scared to take. I even have reactions to benadryl so I'm the person with the bright pink wrist band when in hospital for surgery...lol Will see what this new Iron test shows and think I will try the extra magnesium. While I don't think my mom had RLS she did have leg cramps all the time...I remember even as a kid that my mom would jump up from leg cramps. I get leg cramps often; some medications give me foot/ankle cramps. example recently I started taking prescription Omega 3 and now have leg/foot/ankle cramps every day, which I had planned to discuss with the neurologist, but after I said no to the pregabalin he was mad and he said he had another patient and left. think I was with him for about 10 maybe 12 minutes. I take 150 mg trazadone to help me sleep and even with that I move so much that have worn a hole in bottom sheets. I've taken that for about 25 years when a doctor discovered I hardly slept and just had surgery which is not good. my brother only sleeps about 3 or 4 hours a night and several things have not helped him... I know trazadone can irritate RLS so tried to stop in 2019 and didn't sleep for 30 days. Recently my primary said I should not have stopped cold turkey on my own...he had me take 100 for 2 weeks, then 50 then none...for 6 weeks I had almost no sleep and my legs bothered me even more or rather with no trazadone to help me sleep I feel the full effect of RLS so after 2 weeks of nothing and no difference in my legs I started taking it again. My legs will bother me even during the day or evening and can be worse if too much activity or if too little...lol Its a rare evening when my legs don't bother me so when they don't, I will sit and not move my legs....I will not even twitch my toes...and wait until the very last minute to get up and go to the bathroom and then hope my legs don't start bothering me. Ive tried so many things it crazy.

Jump to this post

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.

REPLY
rjjb | @rjjb | Jun 25 3:09pm
In reply to @SusanEllen66 "@rjjb I also take PRAMIPEXOLE but my body is not reacting to it very well anymore...." + (show)
@SusanEllen66

@rjjb I also take PRAMIPEXOLE but my body is not reacting to it very well anymore. I’m now taking 300mg a day.

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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.

REPLY
dewatobay | @dewatobay | 13 hours ago
In reply to @3dogs "I've tried both and had an unacceptable reaction so cannot take. But FYI the reason you..." + (show)
@3dogs

I've tried both and had an unacceptable reaction so cannot take. But FYI the reason you need a higher dose is because they can make RLS worse, so it's probably become worse, and you need a higher dose. When I first read about some medications that can make it worse, I asked my doctor and he said yes, but they don't really know what dose starts making it worse, so they start you on a low dose. Didn't matter for me as could not take it but found it worrisome that the medication that helps can makes it worse to where you will always have to take and at higher dosage. I've tried so many things that I'm hoping someone has something new to try....LOl

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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.

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