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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@jmb73

I have severe RLS- so bad that my leg and foot jump. In the evening, it would start when I sat in my recliner. I am 79 and have had this most of my life. I have a new PC and she ordered Ropinirole-.25 mg. I can increase the dosage, if necessary, as it's not a controlled substance. It is working!! I have slept through the night since I have been on it and no more problems in my recliner. It's for Parkinsons and RLS. I take it 1 hour before bed and have a small snack so it won't upset my stomach. I would recommend you ask your docs about it.
Hope this helps.

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Please read the newsletter from the RLS organization. Read about augmentation. This is where the brain responds to the medication by changing the dopamine response making the disease worse.
I too have severe RLS, ended my professional career.
The dopamine agonists were a god send for @3 years then the Augmentation began. Even after stopping the med the symptoms are worse than ever. Not sure if the 3 good years were worth the current status. But no use living in the past.
Some specialists in RLS recommend against ever using the dopamine agonists like Requip or pramipexol.
Read up on this. Discuss with your doctor.

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@miguels

Please read the newsletter from the RLS organization. Read about augmentation. This is where the brain responds to the medication by changing the dopamine response making the disease worse.
I too have severe RLS, ended my professional career.
The dopamine agonists were a god send for @3 years then the Augmentation began. Even after stopping the med the symptoms are worse than ever. Not sure if the 3 good years were worth the current status. But no use living in the past.
Some specialists in RLS recommend against ever using the dopamine agonists like Requip or pramipexol.
Read up on this. Discuss with your doctor.

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Thank you. I will check with my doctor.

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@3dogs

I've taken several meds for Parkinsons and RLS and had a reaction. I have reactions to many meds...blah I will double check if that is one that I tried, but pretty sure I tried this.

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I take a pramipexole 0.5 MG tablet (prescription),
and sometimes a couple of Tylenols at bedtime.
It does ease my RLS pain and help me get a good night's sleep.

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I just started Ropinrole a few weeks ago for restless leg. For the first time in several years I can get some sleep. I was shocked, surprised & so thankful. Also have PN & burning feet so I have to use ice socks ( from Amazon) at bedtime. Have 4 pair to trade off when the first pair thaws.
Daytime I use a 33 oz bottle of water I keep in freezer & roll it back & forth til feet cool down. I hope this helps someone.

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Only thing that has helped me are compression socks.

I have knee injuries. Had to strap up my knees one day, when they were in bad shape. Came back home. It was night. Sat down. And I realized the restless leg that was usually there, just wasn't.

And I use compression socks for other medical problems.

Those things do sometimes either end or reduce my restless leg.

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I have suffered from RLS for 25+ years. I have been on a number of anti-defense medications, Gabapentin, Requip, pramipexole, Neupro Patch, you name it. Since moving to Phoenix, I have seen four neurologists, one from the Barrow Institute, which took four months for an appointment. in 2021, he prescribed methadone, a low dosage, of which I said no immediately. I was ordered the pramipexole, yet had to stop due to augmentation. Today, it is not used as a first line defense for RLS, as the drug compounds the symptoms worse, as if your body reacts to the RLS in a worse way than before. I then had to slowly decrease the pramipexole, which was hell, and had 2 hours of sleep per night, and I am pleased I was retired. I tried the methadone and slowly crept up from 5 mg to 20 mg, assured from the neurologist this was a small dosage (?) pain attacks struck, and I tapered it down. I didn't have anything, I began seeing another neroyigst, a referral from a neurosurgeon who implanted a SCS in 2023. The neurologist also ordered the methadone. It s the only method that works for me. I began using the magnesium glycerinate over a year ago or longer, and use 6 capsules per night. The new neurologist ordered the methadone along with hydrocodone with acetaminophen for break-through though during the night. It has helped, but I don't like taking drugs. Though my trial and errors, I would recommend the magnesium glycerinate at 6 capsules, possibly more (and give it time) see if your iron levels are low (I had an iron transfusion over two years ago; since then, my iron level is very high) and try the low dosage methadone with the hydrocodone/aceptaminiphen. I also use a B 12 vitamin, as my feet were burning up at night (once again, give it time) If the neurologist isn't a good fit for you, try another. RLS is heredity, as I believe my Mom suffered from it, and with 4 remaining children out of 6, I am the only one with it. I am extremely active, and to be idle and take up a craft is not in my DNA. I wish you luck.

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@vikkitennis

I have suffered from RLS for 25+ years. I have been on a number of anti-defense medications, Gabapentin, Requip, pramipexole, Neupro Patch, you name it. Since moving to Phoenix, I have seen four neurologists, one from the Barrow Institute, which took four months for an appointment. in 2021, he prescribed methadone, a low dosage, of which I said no immediately. I was ordered the pramipexole, yet had to stop due to augmentation. Today, it is not used as a first line defense for RLS, as the drug compounds the symptoms worse, as if your body reacts to the RLS in a worse way than before. I then had to slowly decrease the pramipexole, which was hell, and had 2 hours of sleep per night, and I am pleased I was retired. I tried the methadone and slowly crept up from 5 mg to 20 mg, assured from the neurologist this was a small dosage (?) pain attacks struck, and I tapered it down. I didn't have anything, I began seeing another neroyigst, a referral from a neurosurgeon who implanted a SCS in 2023. The neurologist also ordered the methadone. It s the only method that works for me. I began using the magnesium glycerinate over a year ago or longer, and use 6 capsules per night. The new neurologist ordered the methadone along with hydrocodone with acetaminophen for break-through though during the night. It has helped, but I don't like taking drugs. Though my trial and errors, I would recommend the magnesium glycerinate at 6 capsules, possibly more (and give it time) see if your iron levels are low (I had an iron transfusion over two years ago; since then, my iron level is very high) and try the low dosage methadone with the hydrocodone/aceptaminiphen. I also use a B 12 vitamin, as my feet were burning up at night (once again, give it time) If the neurologist isn't a good fit for you, try another. RLS is heredity, as I believe my Mom suffered from it, and with 4 remaining children out of 6, I am the only one with it. I am extremely active, and to be idle and take up a craft is not in my DNA. I wish you luck.

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I'm absolutely shocked that a neurologist would prescribe methadone, hydrocodone and acetaminophen!!! These doctors are mostly western trained to see you in their office (if a specialist) 29 minutes and take out the prescription pad, though today they send scripts directly to pharmacist and it arrives at your door. Surprised the doctors don't have a staff member waiting at your house to pour pills down your throat. I take ALA, B12, and Magnesium 7. What's very good is Horse Chestnut and Butcher's Broom herbs. I do stretches, gentle yoga, take warm soaks in Epsom salt and baking soda, and my RLS and poly neuropathy are managed. https://www.youtube.com/watch?v=D6WmNTQTAfc

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@vikkitennis

I have suffered from RLS for 25+ years. I have been on a number of anti-defense medications, Gabapentin, Requip, pramipexole, Neupro Patch, you name it. Since moving to Phoenix, I have seen four neurologists, one from the Barrow Institute, which took four months for an appointment. in 2021, he prescribed methadone, a low dosage, of which I said no immediately. I was ordered the pramipexole, yet had to stop due to augmentation. Today, it is not used as a first line defense for RLS, as the drug compounds the symptoms worse, as if your body reacts to the RLS in a worse way than before. I then had to slowly decrease the pramipexole, which was hell, and had 2 hours of sleep per night, and I am pleased I was retired. I tried the methadone and slowly crept up from 5 mg to 20 mg, assured from the neurologist this was a small dosage (?) pain attacks struck, and I tapered it down. I didn't have anything, I began seeing another neroyigst, a referral from a neurosurgeon who implanted a SCS in 2023. The neurologist also ordered the methadone. It s the only method that works for me. I began using the magnesium glycerinate over a year ago or longer, and use 6 capsules per night. The new neurologist ordered the methadone along with hydrocodone with acetaminophen for break-through though during the night. It has helped, but I don't like taking drugs. Though my trial and errors, I would recommend the magnesium glycerinate at 6 capsules, possibly more (and give it time) see if your iron levels are low (I had an iron transfusion over two years ago; since then, my iron level is very high) and try the low dosage methadone with the hydrocodone/aceptaminiphen. I also use a B 12 vitamin, as my feet were burning up at night (once again, give it time) If the neurologist isn't a good fit for you, try another. RLS is heredity, as I believe my Mom suffered from it, and with 4 remaining children out of 6, I am the only one with it. I am extremely active, and to be idle and take up a craft is not in my DNA. I wish you luck.

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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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Prescription pills pramipexole 0.5mg, does ease the agony of RLS for me.

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@rjjb

Prescription pills pramipexole 0.5mg, does ease the agony of RLS for me.

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@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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