Restless Leg Syndrome (RLS) and Opioids

Posted by kd1958 @kd1958, Oct 21, 2019

Getting nearly impossible to get meth in Wa. St. By Rx but heroin given out like candy. Will heroin work? Desperate

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@juniemoon1

Wow! I'm assuming that your ferritin was low at that time? How is it now? My ferritin wasn't in the single digits, but it had dropped by 50% in 6 months (80's to 40's). So, I'm also taking iron/vit C. At this point, the neuro said he wanted to concentrate on getting the symptoms under control, then we'll concentrate on the iron.

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My iron was fine , I guess, this combo is what the literature showed that worked

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@engelee

My iron was fine , I guess, this combo is what the literature showed that worked

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That's great that it worked for you. I'm constantly amazed at how many different treatments/options there are for RLS.

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@juniemoon1

Hi! I started the methadone 5 days ago. The first 3 nights were somewhat better. Where as before I couldn't get to sleep until 8:00-ish in the morning, I was able to get to sleep around 3 am. Then the night before last it was 5:30. Last night I went to bed at 10:30 and Slept Through The Night! I truly cannot remember the last time that happened. I woke up with a whole new outlook on life!

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@juniemoon1 How great to be able to sleep! I didn't realize that I had RLS until a few months ago when I asked my neurologist if he had noticed the involuntary movements of my fingers, and everywhere else.

At about the same time I was starting Duloxetine for neuropathy pain, and when I was up to 90mg, I began having major twitching. It was happening every second, sometimes multiple movements at once. I understand why you couldn't sleep if your symptoms were like mine. My wife suggested that it could be the increased dosage, so I went back down to 60mg, and the twitching subsided. That was not a fun experience. After a few weeks, instead of the 90mg at bedtime, I started taking 60 at bedtime and 30 in the morning. Two weeks ago I sent the neurologist a message letting him know that the pain is increasing and moving up my legs, so now he has me taking yet another 30mg in the afternoon.

I've been taking Clonazepam for anxiety for 15 years, and along the way I found that I didn't kick and punch in my sleep. It's the one medication my wife doesn't want me to stop taking.

With the increased anxiety surrounding covid19, I started taking the full dosage that I'm prescribed. I've always taken only 1mg a day unless I needed a second one. Since moving up to 2mg, I've noticed that my involuntary movements have calmed down. It's always irritated my wife.

How good it was that you found such a good neurologist. Being heard is a big deal. I've always appreciated that my pcp asks if there's anything else I want to talk about before he ends the appointment. I had an appointment with a neurologist several years ago, and he told me more about peripheral polyneuropathy than 3 others had over the course of 5 years. Bummer that he retired the next week. I hope that you continue to be so pleased with the new doctor.

Jim

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Hello, my husband has RLS and was using a neupro patch for almost a year and then it started producing blisters under the patch. His doctor told him to stop using them, but didn't prescribe anything else. His legs have started jumping again and he is getting no sleep.

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@schlagers

Hello, my husband has RLS and was using a neupro patch for almost a year and then it started producing blisters under the patch. His doctor told him to stop using them, but didn't prescribe anything else. His legs have started jumping again and he is getting no sleep.

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Hello @schlagers, Welcome to Connect. I'm sorry to hear that your husband's doctor didn't offer any alternatives or suggestions other than to stop using the neupro patch. I'm wondering if @engelee, @juniemoon1 and others may be able to offer some suggestions or more information on RLS treatment.

Here are a few home remedies that may help some — 5 Doctor-Approved Home Remedies for Restless Legs Syndrome: https://health.clevelandclinic.org/5-doctor-approved-home-remedies-for-restless-legs-syndrome/

Can you ask his doctor if there are any other treatment or medications that can be used in place of the patch?

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He talked to the office and they said they would call him back and that was over two weeks ago. He has a call in with Mayo next Wednesday. Thanks for the group discussion.

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I have been playing with this for awhile. Magnesium at midday helps, somewhat. At night, I do leg edema massage: toes to torso until there are no sore spots. Piriformis stretches, clamshell exercise. Rotate ankles, "pump" heel to toe, hamstring stretches. Elevation with heat pack for awhile. Sometimes, ice is better. Seems to get circulation going and loosen muscles. Compression socks and orthotics if I will be doing a lot of sitting and standing. Some like magnesium spray (online or DIY), or epsom salt bath. I take THC/CBD tincture sublingually at night.

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@marye2

I have been playing with this for awhile. Magnesium at midday helps, somewhat. At night, I do leg edema massage: toes to torso until there are no sore spots. Piriformis stretches, clamshell exercise. Rotate ankles, "pump" heel to toe, hamstring stretches. Elevation with heat pack for awhile. Sometimes, ice is better. Seems to get circulation going and loosen muscles. Compression socks and orthotics if I will be doing a lot of sitting and standing. Some like magnesium spray (online or DIY), or epsom salt bath. I take THC/CBD tincture sublingually at night.

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I am a 68 year old w/f that has been trying to deal with my severe RLS since I have been 15! I Rembrandt my first couple attacks. I come from a family of 8 girls and remembering.feeling some crazy feeling in my right leg! My 93 yr old mother and all my sisters have the dreaded RLS feelings in my leg.we are all very close and freq exchange info but not until about 20 yrs ago. I always knew when my mother was pregnant with my younger sisters by seeing either my grandmother RN or the doctor arrive every Saturday morning
for my mother’s weekly iron shot.she always had low iron but those levels level would fall to the floor.through the floor when she was pregnant!.For ten years, I from 2005-2016 , was infused every 2/-3 weeks when I suffered with low iron! ( That thought was heavenly to lay on the couch and watch the soaps but it turned out that I was total exhausted to do anything! )🥺☹️ I never had severe RLS attacks during that time, either. I also treated with anemia for 10 yrs mother get her iron shot every week while she was pregnant and with 7 sisters and herself, that was a lot of Iron shots she got! We suffered with what we called our “funny leg feeling”. Mom would walk the floors and caring one of my sisters just to trying to come out RLS attacks. iMy grandmothers on both sides never had systems! They never hadit but all the sistersand mother had it. I started with maybe 1 times a month, last maybe 15-20 minutes and be the time I walked a few mins, it was gone!,
As I grew the attacks was-was more freq to 3-5 times month! But it wasn’t discussed until a camping trips with all the sisters. In the early 90’s we started a journal on out attacks! We all called it something different. I would watch my sisters get up and walk the length of the cabin trying to get rid of it! About 15 yrs ago I went from a few a month( as like my sisters) head back to bed after 10-15 mins! Well, I am not to sure if I won the prize just like the horses at the race track, I was off running!
I have it now and starts as a little tingling in my my left leg, I hav in in both leg and both legs and although I would technically have no pain from the RLS attacks but with a disability over 30 years ago with sciatica and femoral nerve damage so the pain came in while kicking . It feels like a shot of electrical. What lasted then has least 1 every 2 days, lasting from 15 mins to most recently 3 hour attacks! What scares me is the sharp increase in length of attack, severety, all hours of day and night and I started to get uncontrollable upper body movements that exhaustesbwe for hours. At times I would set out of the bed and onto the floor so I didn’t hurt myself during those violent attacks. I have 2 studies with the university of Pennme . Some people experience some different! One of the people ask about caffeine and chocolate and even a bottle of Pepsi or a chocolate bar will guarantee me an attack usually with in 12 hours!! I have a neurologist for 30 yrs and for the first time in y life I cried for 3 hours straight! I would think and cry because I don’t like going
it! control, I recall when I would feel this tingling in my ankle and I am off again! My worst times have been for the last 3 years and when I feel that tingling I figure I have a good 5 mins to get to my bedroom so if I need him, I can wake my husband! During one very severe attack, I looked at my husband as my attack progress, I would see that helpless look in his eyes cause he realized that him had no idea how to help me. He would throw me some pillows cause he would feel helpless! And he is right, if I can’t control my attacks then he had no idea how!
I know what they are but that is it! They say to get in the shower during these severe my attack never really help but my bathroom flor was shiny from all the water I splashed on the floor. What used to be the nighttime attacks but I have them morning and .afternoon because I was tired! My most severe attacks. Sometimes the attack comes morning, noon, night any where from 30 to an hour. I Over the years I have written down every thought before, during and after my attacks and still can’t control itI can’t put my finger on it!After 40 years of marriage, my husband and I joke about the bad ones because if we didn’t we would never stop crying!
As a child we all were healthy, common childhood diseases we no problems! My mother had polio during her 3rd baby but no sever problems! Over the last 2-3 years
I also take medication CARBIDOPA, fast acting carbo. And the best part is, I have tried everything but passing by the nurse called me in and gave me samples of he drug called HORIZANT and with a lot of tweaking and daily checking, I can say it is works wonders! But if I miss one pill I know that I will have those feeling! I am tired and if I push, I know that them tinging in my feet! For most of my life I could never know which leg will start, but since of have found by mistak.
This disorder will drive the best of them crazy.I know this because,” I have been living this for a very long time! them cause aI live it every day! I only wish more doctors and hospital people would read up on it and. Do not want meds.

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@lezah8

I am a 68 year old w/f that has been trying to deal with my severe RLS since I have been 15! I Rembrandt my first couple attacks. I come from a family of 8 girls and remembering.feeling some crazy feeling in my right leg! My 93 yr old mother and all my sisters have the dreaded RLS feelings in my leg.we are all very close and freq exchange info but not until about 20 yrs ago. I always knew when my mother was pregnant with my younger sisters by seeing either my grandmother RN or the doctor arrive every Saturday morning
for my mother’s weekly iron shot.she always had low iron but those levels level would fall to the floor.through the floor when she was pregnant!.For ten years, I from 2005-2016 , was infused every 2/-3 weeks when I suffered with low iron! ( That thought was heavenly to lay on the couch and watch the soaps but it turned out that I was total exhausted to do anything! )🥺☹️ I never had severe RLS attacks during that time, either. I also treated with anemia for 10 yrs mother get her iron shot every week while she was pregnant and with 7 sisters and herself, that was a lot of Iron shots she got! We suffered with what we called our “funny leg feeling”. Mom would walk the floors and caring one of my sisters just to trying to come out RLS attacks. iMy grandmothers on both sides never had systems! They never hadit but all the sistersand mother had it. I started with maybe 1 times a month, last maybe 15-20 minutes and be the time I walked a few mins, it was gone!,
As I grew the attacks was-was more freq to 3-5 times month! But it wasn’t discussed until a camping trips with all the sisters. In the early 90’s we started a journal on out attacks! We all called it something different. I would watch my sisters get up and walk the length of the cabin trying to get rid of it! About 15 yrs ago I went from a few a month( as like my sisters) head back to bed after 10-15 mins! Well, I am not to sure if I won the prize just like the horses at the race track, I was off running!
I have it now and starts as a little tingling in my my left leg, I hav in in both leg and both legs and although I would technically have no pain from the RLS attacks but with a disability over 30 years ago with sciatica and femoral nerve damage so the pain came in while kicking . It feels like a shot of electrical. What lasted then has least 1 every 2 days, lasting from 15 mins to most recently 3 hour attacks! What scares me is the sharp increase in length of attack, severety, all hours of day and night and I started to get uncontrollable upper body movements that exhaustesbwe for hours. At times I would set out of the bed and onto the floor so I didn’t hurt myself during those violent attacks. I have 2 studies with the university of Pennme . Some people experience some different! One of the people ask about caffeine and chocolate and even a bottle of Pepsi or a chocolate bar will guarantee me an attack usually with in 12 hours!! I have a neurologist for 30 yrs and for the first time in y life I cried for 3 hours straight! I would think and cry because I don’t like going
it! control, I recall when I would feel this tingling in my ankle and I am off again! My worst times have been for the last 3 years and when I feel that tingling I figure I have a good 5 mins to get to my bedroom so if I need him, I can wake my husband! During one very severe attack, I looked at my husband as my attack progress, I would see that helpless look in his eyes cause he realized that him had no idea how to help me. He would throw me some pillows cause he would feel helpless! And he is right, if I can’t control my attacks then he had no idea how!
I know what they are but that is it! They say to get in the shower during these severe my attack never really help but my bathroom flor was shiny from all the water I splashed on the floor. What used to be the nighttime attacks but I have them morning and .afternoon because I was tired! My most severe attacks. Sometimes the attack comes morning, noon, night any where from 30 to an hour. I Over the years I have written down every thought before, during and after my attacks and still can’t control itI can’t put my finger on it!After 40 years of marriage, my husband and I joke about the bad ones because if we didn’t we would never stop crying!
As a child we all were healthy, common childhood diseases we no problems! My mother had polio during her 3rd baby but no sever problems! Over the last 2-3 years
I also take medication CARBIDOPA, fast acting carbo. And the best part is, I have tried everything but passing by the nurse called me in and gave me samples of he drug called HORIZANT and with a lot of tweaking and daily checking, I can say it is works wonders! But if I miss one pill I know that I will have those feeling! I am tired and if I push, I know that them tinging in my feet! For most of my life I could never know which leg will start, but since of have found by mistak.
This disorder will drive the best of them crazy.I know this because,” I have been living this for a very long time! them cause aI live it every day! I only wish more doctors and hospital people would read up on it and. Do not want meds.

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My rheumy gave me Ropinol, azithropine, and gabapentin (Horizant) – all seem to "light" up the nerves more. I do have hip issues that I relieve with piriformis stretches. For the leg, which I cannot predict its happening either I do stretches, ice/heat, elevation, and hope it works for the night. Some success with magnesium and Ligaplex II, but not consistent. During the day following an all nighter, I wear compression socks, which seems to help. Iron doesn't agree with me, but B-12 shots sometimes help for awhile. If I feel sore places on my legs, I put pain cream or CBD on those places at night. I've tried walking it out in the wee hours and hasn't helped. But stretching hamstrings and "pumping" legs with heel and toe is another thing to try. My EMG tests are normal, and I suspect it has to do with blood flow as it starts in about the time I lie down. (I am a year older than you!)

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@marye2

My rheumy gave me Ropinol, azithropine, and gabapentin (Horizant) – all seem to "light" up the nerves more. I do have hip issues that I relieve with piriformis stretches. For the leg, which I cannot predict its happening either I do stretches, ice/heat, elevation, and hope it works for the night. Some success with magnesium and Ligaplex II, but not consistent. During the day following an all nighter, I wear compression socks, which seems to help. Iron doesn't agree with me, but B-12 shots sometimes help for awhile. If I feel sore places on my legs, I put pain cream or CBD on those places at night. I've tried walking it out in the wee hours and hasn't helped. But stretching hamstrings and "pumping" legs with heel and toe is another thing to try. My EMG tests are normal, and I suspect it has to do with blood flow as it starts in about the time I lie down. (I am a year older than you!)

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Hi and. Thank you for your response! First, I noticed my spell check is not working and I never checked m y last letter till now! If Sister Phiilomenia, my spelling teacher 5th grade from catholic grammar school could see that letter!!
This is the first time I have talked to a group on Restless. This disorder has knocked out every one who suffers from it! Physically, mentally and psychologically! I never knew what it was till my sisters said they also suffer from it to various degrees! I have no children to ask but it is the same all around. I think my deepest problem is 2 fold. First the doctors and medical personnel are very uneducated about Restless and what gets to me is the first thing they want to say is,”Are you here for pain meds”say is if your are for pain meds, “! I get so angry when his said that! I wanted to ask him if he wanted some of mine! But I held my tongue!
My last attack was so severe because it involved more that the attack! It started with a anxiety attack that I had no idea where it came from then it advanced a little because I had not slept for 31 hours and then because of being so exhausted I started next with the Restless attack and when it stayed around for a few hours I was taken to the emergency room where the doctor wanted to treat me for everything other than the attack! After an hour and things were calming down, I ask him if he knew what restless leg was and how to handle it, he said no! I have had them for a while but about 6 months ago, the pain center advised me that I could not stay on both pain webs and anxiety meds because of a recent letter from the CDC where they lower the breathing so the doctor could not continue with both so I had to pick one! I have recently was told that there is a antihistamine that they are using for anxiety. I have used that for the last month and I believe it is working! Any medication I can take off the medication list is wonderful!!. Now I got to work on the rest! I will try what the doctor suggests! There is nothing that has helped for any length of time and I seem to be on a roll to manage the worst parts and that is my current list and sticking to the times and does! It involves sinamet, CARBIDOPA and 3 strict courses of HORIZANT. If I miss a does at the specific time, I will suffer! I have been disabled from a accident for approximately 30 years and the only thing that i can depend on showing up is my Restless Leg!! I have started some severe tics with my shoulders, arms.and face. When they start, I know that I will get a visit from my tooth fairy with another attack! That little fairy works double duty with me! I have type 2 diabetics, thyroid , iron anemia and age wide disorders! I pray big time for relief from this nightmare but for now I will continue attaching a little note with my medication list to hand to the doctor explaining restless!! Don’t expect the Doctor at the hospital to know what the symptoms are or how to handle it! God bless all the medical personnel for all their work they have done for us the year a 1/2 year. I don’t know where to start with education on RLS but it’s not over till the fat lady sings! Thank you !

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