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Old 11-05-2012, 06:20 AM   #1
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RLS - Is there a cure?

Hello!

I joined these forums in my quest to seek relief from RLS and some other issues as I get older. RLS is a common problem and one that is horrible to live with but many doctors do not understand how difficult it is for the patient because they've not experienced it themselves.

I use to take Pramipexole (Mirapex) and although that drug seem to do the best job the side effects were worse sometimes than the RLS relief. I would wake up in the morning with what seemed like cold symptoms like stuffed up nose and nausea. I stopped taking Pramipexole because of those side effects. But, I don't know which is worse...having cold symptoms in the morning and being sick to my stomach or not sleeping and dealing with RLS each night.

Right now I am taking Gabapentin and I don't think it works at all. I've tried taking two pills to increase the dosage but that didn't help. I don't want to take too much. In fact, it almost feels like Gabapentin makes my symptoms worse but that just could be in my head.

I currently take Magnesium in powder form and usually mix it with some type of drink before going to bed but again, doesn't seem to help.

I've tried over-the-counter herbal remedies like Gaba and this stuff called "Restful Legs" you can buy in health food stores. Again, nothing touches it.

Note: I only get the RLS symptoms as it gets later in the evening and when I go to bed. During the day I have ZERO symptoms. But as the evening is winding down and I am sitting around watching TV I can start to feel my legs crawling and I know the battle has begun. It's not a good feeling and I dread nights. I am exhausted when I go to bed and sometimes I can fall asleep right away but like an alarm clock, about an hour later I wake up with extreme RLS. Sometimes I can't go to sleep because it's coming on so bad, other nights I wake up with it.

Something else to consider. Not only do I have the RLS symptoms I can't seem to relax at night. Sure, I am physically exhausted (due to the lack of sleep most nights) but my body can't relax. My mother had the same thing nearly all her life. Maybe it's hereditary but I can't relax, only when it gets later in the evenings. During the day I am perfectly normal BTW. I have consistent energy levels. When my mother was older and getting severe Alzheimer's I remember spending the night at her house and she also had what seemed like RLS. She would be physically exhausted at night but that's when her problems started. One time we took her to the hospital because she was going on a nearly a week without sleep and even the strongest local injections would not put that woman to sleep! The doctors were puzzled. I really feel like whatever my mother had is now happening to me.

I am amazed with all the medical wonder drugs out there for everything else why can't some chemist design a drug that can cure this awful problem? The medical industry doesn't seem to treat this as serious as some other issues and that's very alarming to me.

Here is what works for me and the ONLY way I can finally put a smile on my face and calm down at night and actually sleep:

Vicodin. Yes, Vicodin. (The crowd boos...) The problem with that is it's a narcotic and doctors are scared to death because of regulations to prescribe anyone with pain medicines. I've tried to explain to several doctors that I don't want Vicodin because I am a narcotic junky! I simply want to be able to sleep without the constant RLS symptoms but they will not do it, no matter how many nights I go without sleep. It's not about me, it's about them not losing their medical license.

I even tried to ask for a sleeping pill or something just to try it and they won't do that. Meanwhile I know friends and other family members who get 90 Vicodin pills a month because they claim they have back pain. No questions asked! The doctors have them on a monthly auto-fill program for chronic pain. Give me a break. The guys I'm talking about play softball and one even does MMA. Yeah right, if they are in so much pain how can they do these sports. But a person like myself who wants relief from a serious issue can't get a doctor to prescribe anything. I sometimes wish someone would take a baseball bat to my knee caps and break my legs so I can get some type of medication where I can finally get a good night's sleep.

I don't know where else to turn. No doctor I go to is helping so I'm hoping by discussing RLS with others I can possibly find something that gets me a little relief.

Thanks for any advice.

Last edited by OhioGuy22; 11-05-2012 at 07:31 AM.

 
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Old 11-06-2012, 01:35 PM   #2
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Re: RLS - Is there a cure?

I am on methadone for chronic back pain. Last year I went to a detox to get off drugs and try to handle the pain myself ( what a big mistake).

I got off the drugs and the RLS that I had forgotten about came back with a vengence not to mention the back pain was still there.

Lesson learned. Methadone stops a lot of pain and stops RLS completely while taking it. Also there is no HIGH with methadone so you funtion like normal people.

Good luck and God bless.
Mikeh66

 
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Old 11-06-2012, 02:20 PM   #3
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Re: RLS - Is there a cure?

Doctor was to chicken to prescribe Methadone. Well, I tried!

Off to find natural remedies I guess...

 
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Old 11-07-2012, 05:23 AM   #4
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Re: RLS - Is there a cure?

I understand............ best of luck and God bless

mikeh66

 
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Old 11-25-2012, 10:45 AM   #5
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Re: RLS - Is there a cure?

I am new to this board too. My doctor suspects RLS, although he is not certain. This is going to sound very crazy, but I have read that many people with RLS get relief from putting a bar (or bars) or Ivory soap or some plain type of soap on their sheets near their legs and feet OR in their socks or somewhere on their body. Apparently, the sodium chloride and other ingred. get absorbed in the skin during the night and help the condition. I'm going to try it this week. If you do an online search for it you will see lots of positive comments from others. Mine only happens when I wake up in the morning. For some reason my legs are often bent at the knees and if I try to straighten my legs they shake like crazy and I have to push them down to get them to finally stop shaking.

 
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Old 11-25-2012, 12:39 PM   #6
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Re: RLS - Is there a cure?

Did not help even a little bit.

I am on Methadone for chronic back pain and that also stop RLS completely. Hear that?!

I am 100% free of RLS while on Methadone.

God bless......... Mikeh66

 
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Old 11-25-2012, 02:41 PM   #7
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Re: RLS - Is there a cure?

Thanks! Does teh methadone help the back pain too or just the RLS?

 
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Old 11-25-2012, 03:11 PM   #8
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Re: RLS - Is there a cure?

I took the Methadone for my severe back pain and the side effect was that it also cured my RLS.

I am now taking 3x10mg tabs of Methadone 3 times a day. Basically methadone will not make you high (unless you really take a bunch). This is a win win situation. I used to take Oxycodone and many others before my doc put me on the methadone.

God bless..........
Mikeh66

 
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Old 01-24-2013, 06:45 PM   #9
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Re: RLS - Is there a cure?

your story is very similar to mine. I've had rls for 15 yrs. i'm only 27 years old and I've had this since I was 12! my rls is very severe. I have it in both knees and elbows, if I go one night without my medicine I do not sleep at all. i'm up all night with no relief from even standing. it's a nightmare and I've dealt with this way to much. it's extremely scary not knowing if you will sleep at night or not. I've not have a full nights sleep in so many years. I don't even know what it's like! My RLS is something that has progressively got worse with my age. I am the worst case my Dr has ever seen. I also do see a neurologist for my RLS. I was on and have tried all the medicines available which I was able to take for about half the time that I've had the RLS. They worked for a while but eventually quit working. My father also has severe RLS. He takes tramadol for his RLS, which I switched too. Unfortunetly that stopped working after about 6 yrs. My family Dr. talked to a neurologist and we came up with a treatment plan. I take 15 mg of oxycodone twice a day. Both my Dr's told me (you can look this information up online) that an opiate path of treatment is the last method of treatment for RLS but is NOT uncommon for treatment in cases of people that suffer from severe RLS. Your Dr. should not treat you like that and should be educated on the fact that opiates are a well known medicine that works for RLS. the chemical that opiates release from your brain is also the chemical that suppresses RLS and works by putting dopamine into your system. Dopamine is also a natural substance to your body so the medicine is completely safe to take even when your pregnant which I now am. Me and my husband even planned on adopting children because of my inability to go without my medicine. I couldn't afford to go on medical leave for my entire pregnancy although my Dr. did give me that option. Oxycodone is a schedule "B" drug. it's safter than most any other medication even tramadol or vicodin while you are pregnant. it's a miracle drug and if taken as prescribed and be a lifesaver. you should really go see another Dr. if you have a proven track record of Severe RLS and it's been a progressively worsening condition for you, then your Dr. should know that this is a totally viable and reasonable option as long as you do not have a history of drug addiction or abuse.

 
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Old 01-24-2013, 06:55 PM   #10
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Re: RLS - Is there a cure?

one thing that does help me though when I cannot take medicine is extra strength bengay, if you rub that on your joints the sensation is very strong and your brain will begin to focus on that sensation. as nothing really helps me these are the next best things that I do at night. One things sounds funny but an orgasm will do the same thing, and releases dopamine into your system so is as affective as an opiate believe it or not, I have done this successfully many times. My father says that he likes to lay on the carpet or floor with maybe just a sleeping bag and the pressure from the floor on his thighs helps. I've heard that a bar of soap under the sheets is another thing that helps. google it there was an article in MN a few years ago that held some information on that wacky idea with the brand of soap and all. I did try this and it did work for a little bit! good luck

 
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Old 01-24-2013, 07:59 PM   #11
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Re: RLS - Is there a cure?

I have had severe RLS for years. I have found the best relief with a combo of gabapentin (Neurontin) and Sinemet (a Parkinson drug), PLUS magnesium, calcium and sometimes a muscle relaxant (methocarbamal). The Sinemet works best, no hangover in AM but needs to be taken at least one hr before bed, Neurontin takes 2 or more hrs to kick in. The muscle relaxant helps and is not controlled, so most Drs have no problem with that. If I take all that stuff and still have RLS, I take Vicodin, as my RLS involves pain in legs as well as the restless uncontrollable urge to move nonstop. It is truly miserable. Caused by a Dopamine deficiency. Consider also some bupropion, an antidepressant that raises Dopamine, the neurotransmitter deficient in RLS. Good luck. I will think of you as I am thrashing about in bed. Be sure you are not anemic or low in iron (check a serum ferritin level) or low in Vit D, also can be checked on blood test.

Last edited by ladybud; 01-24-2013 at 08:02 PM. Reason: typo

 
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Old 01-28-2013, 07:08 AM   #12
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Re: RLS - Is there a cure?

Quote:
Originally Posted by ladybud View Post
I have had severe RLS for years. I have found the best relief with a combo of gabapentin (Neurontin) and Sinemet (a Parkinson drug), PLUS magnesium, calcium and sometimes a muscle relaxant (methocarbamal). The Sinemet works best, no hangover in AM but needs to be taken at least one hr before bed, Neurontin takes 2 or more hrs to kick in. The muscle relaxant helps and is not controlled, so most Drs have no problem with that. If I take all that stuff and still have RLS, I take Vicodin, as my RLS involves pain in legs as well as the restless uncontrollable urge to move nonstop. It is truly miserable. Caused by a Dopamine deficiency. Consider also some bupropion, an antidepressant that raises Dopamine, the neurotransmitter deficient in RLS. Good luck. I will think of you as I am thrashing about in bed. Be sure you are not anemic or low in iron (check a serum ferritin level) or low in Vit D, also can be checked on blood test.
I take methadone for severe back pain, it happens to completly releive very severe RLS. I used to take sinemet and ropinerole which were very short lasting.

 
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Old 01-29-2013, 01:12 AM   #13
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Re: RLS - Is there a cure?

I am a 46 year old female.I was in my early 20's when RLS symptoms started,back then no one knew what it was.I remember seeing so many doctors and they always looked at me like I had 3 heads when I told them that when I went to bed it felt like bugs were crawling up&down my legs.My feet were in constant motion,I couldn't sit still.Even in a chair,I was swinging my feet.At night,in bed,I would lay on my side&rock my lower body while rubbing my feet together.My ex husband would start rocking because I got him so used to it,he couldn't sleep without it.
One day I saw a commercial for medication and they showed ants going up&down the persons legs...& that's how I learned what I had.
RLS,I'm not crazy!!!This also runs in my family(at least 4 generations),but so far only the women have it.Both of my daughters,now in their 20's have started to complain about symptoms.
I am managing my RLS with 2-3 .25mg of ropinirole(requip)1 hr before bed.This medication can be adjusted to a higher dose if needed.Also I am on 150mg of lyrica,also can be adjusted.I have found lyrica to be a miracle drug.It's incredible at eliminating nerve pain.
Methadone is a very addicting drug,as are opiates.Because RLS is a life long disease and it often affects young people,I think that the drugs made specifictly for RLS should be tried first&adjusted as needed,if that doesn't work alone try adding a nerve medication like lyrica.
I sleep&relax so well,I forget that I have RLS.
I also want to add,I never had a problem during the day.For me it would start in the evenings&bed was the worse.My RLS also would give me a squeezing pain in my calfs&behind my knees.I can only discribe this pain like when a blood pressure cuff is puffed up too tight.
I hope this helps,and let us all hope they figure out not just a cure for this "syndrome"but also the where,who,what&why's of this.
Good luck to everyone!!!

 
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Old 01-29-2013, 06:55 AM   #14
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Re: RLS - Is there a cure?

Agreed about opiates, I happen to need Methadone for my back pain and luckily it is a complete cure, so to speak, for my severe RLS.

I also relate to years gone by. I have had RLS for 40 years.

God bless
Mikeh66

 
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Old 01-29-2013, 08:39 AM   #15
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Re: RLS - Is there a cure?

Hi OhioGuy:
Hopefully you have gotten responses to cry for help. I can completely relate. As soon as I sit down in the evening my left starts to scream. Its crazy. I finally went to the doc and got the mirapex, Ambien (to sleep), and got my iron tested. My iron was found to be low. So I started taking 325mg ferrous sulfate (which gives 65mg of iron), Magnesium in the pm with the mirapex and 5mg of folic acid in the am. Its all little steps. It helps enough so I can lay down and go to sleep. I really can't just sit on the couch yet and watch tv. I'm in a cast on my left leg and that made things really bad because I can't move my leg like it wants.

Don't give up. Look for a different doc that will at least give you ambien or lunesta to help you sleep.

Last edited by Administrator; 01-29-2013 at 12:02 PM.

 
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