Restless Leg Syndrome

Posted by jimbourg8 @jimbourg8, May 14, 2016

I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ….mostly worse in the late afternoon and evening. It’s usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can’t remain still…….upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago……….he confirmed that it was Restless leg syndrome…………there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms….there is not a definitive diagnostic test………all bloodwork etc…. is normal . I now take Gabapentin, and Klonopin to calm the “restless” nerves………..there is no cure for this ( my Neurologist says )……..It’s just something you have to learn to live with and take those medications for it……….It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS……..there is a possiblity that I had LOW thyroid for years before I was diagnosed with it……..hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that…..anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS……..appreciate any feedback. Thanks Jim B.

I have run the gamut of medications for restless leg syndrome (RLS) over the past 25 years, and most of them worked for a period of time and then stopped working or 'rebounded' and created increased symptoms of RLS after a period of time. As I age, my restless leg severity increases exponentially also. I also have fibromyalgia and chronic fatigue (diagnosed by Fibromyalgia Department at Mayo) so when I don't get enough sleep, those issues, along with a back that has had cervical and lumbar surgeries, flare up and are more painful also. Requip worked for about nine years, and then I needed to increase dosage: at first every two-three months, and then it was every two weeks. Each time, I experienced nausea/vomiting, dizziness and sometimes fainting, and a severe headache the next morning. I have been seeing a Sleep Center doctor at Mayo, and she is great, but we have been struggling to find something that works more effectively than Gabapentin which creates issues with my memory . . . when I was taking a higher dose of 1200 mg daily, I was afraid I was developing dementia my thinking was so skewed. Lower doses, 600 mg work better. I recently asked about Neupro which I heard about from a friend who knew someone who had great success with it. However, it too has side effects; same as Requip with the nausea/vomiting, dizziness/fainting, and headache at first dose . . . . but memory issues are somewhat different. With Neupro, at numerous intervals during the day, it will feel like someone dropped a blank box in my brain, and when I try to recall something I know that I know, it just isn't there. It's been a month and a half of taking Neupro, and for a period of four years, I was getting 1 1/2 – 2 1/2 hours of sleep per night sometimes in 15-20 minute intervals with a 6-7 hour night every ten days to two weeks. Needless to say I was a walking zombie. I am wondering if anyone else is taking Neupro and what their experiences are?

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@suecreader

I have run the gamut of medications for restless leg syndrome (RLS) over the past 25 years, and most of them worked for a period of time and then stopped working or 'rebounded' and created increased symptoms of RLS after a period of time. As I age, my restless leg severity increases exponentially also. I also have fibromyalgia and chronic fatigue (diagnosed by Fibromyalgia Department at Mayo) so when I don't get enough sleep, those issues, along with a back that has had cervical and lumbar surgeries, flare up and are more painful also. Requip worked for about nine years, and then I needed to increase dosage: at first every two-three months, and then it was every two weeks. Each time, I experienced nausea/vomiting, dizziness and sometimes fainting, and a severe headache the next morning. I have been seeing a Sleep Center doctor at Mayo, and she is great, but we have been struggling to find something that works more effectively than Gabapentin which creates issues with my memory . . . when I was taking a higher dose of 1200 mg daily, I was afraid I was developing dementia my thinking was so skewed. Lower doses, 600 mg work better. I recently asked about Neupro which I heard about from a friend who knew someone who had great success with it. However, it too has side effects; same as Requip with the nausea/vomiting, dizziness/fainting, and headache at first dose . . . . but memory issues are somewhat different. With Neupro, at numerous intervals during the day, it will feel like someone dropped a blank box in my brain, and when I try to recall something I know that I know, it just isn't there. It's been a month and a half of taking Neupro, and for a period of four years, I was getting 1 1/2 – 2 1/2 hours of sleep per night sometimes in 15-20 minute intervals with a 6-7 hour night every ten days to two weeks. Needless to say I was a walking zombie. I am wondering if anyone else is taking Neupro and what their experiences are?

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Hi @suecreader you may have noticed that I moved your discussion on neupro and restless leg syndrome to this existing discussion on RLS that you have taken a part in.

Let's open this up to the group. @mamacita @degarden_girl @barbarn @ssbionicknee @nightwalker18 @gaylea1 have any of you tried this medication? Or have you explored taking it with your physician?

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@suecreader

I have run the gamut of medications for restless leg syndrome (RLS) over the past 25 years, and most of them worked for a period of time and then stopped working or 'rebounded' and created increased symptoms of RLS after a period of time. As I age, my restless leg severity increases exponentially also. I also have fibromyalgia and chronic fatigue (diagnosed by Fibromyalgia Department at Mayo) so when I don't get enough sleep, those issues, along with a back that has had cervical and lumbar surgeries, flare up and are more painful also. Requip worked for about nine years, and then I needed to increase dosage: at first every two-three months, and then it was every two weeks. Each time, I experienced nausea/vomiting, dizziness and sometimes fainting, and a severe headache the next morning. I have been seeing a Sleep Center doctor at Mayo, and she is great, but we have been struggling to find something that works more effectively than Gabapentin which creates issues with my memory . . . when I was taking a higher dose of 1200 mg daily, I was afraid I was developing dementia my thinking was so skewed. Lower doses, 600 mg work better. I recently asked about Neupro which I heard about from a friend who knew someone who had great success with it. However, it too has side effects; same as Requip with the nausea/vomiting, dizziness/fainting, and headache at first dose . . . . but memory issues are somewhat different. With Neupro, at numerous intervals during the day, it will feel like someone dropped a blank box in my brain, and when I try to recall something I know that I know, it just isn't there. It's been a month and a half of taking Neupro, and for a period of four years, I was getting 1 1/2 – 2 1/2 hours of sleep per night sometimes in 15-20 minute intervals with a 6-7 hour night every ten days to two weeks. Needless to say I was a walking zombie. I am wondering if anyone else is taking Neupro and what their experiences are?

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@suecreader Oh Sue, I am so very sorry for all you are going through with this awful syndrome. I too was on requip for a few months but went off it because I felt so ill.

Once I hit on Vit D and found it worked for me, I have not sought any other medications. It sounds like you are desperate for something that will help. I have absolutely no idea if Vit D will be helpful to you but it is a pretty benign medication and worth a try. I take 4000 IU at bedtime. I believe that up to 5000 IUs are considered totally safe and if you want to try more than that, you should probably talk to your MD about monitoring your Vit D.

Yes, RLS does seem to be a problem dumped on us older people. There must be something in our brain that begins to malfunction. I have wondered if hormone replacement therapy would ease RLS symptoms. This issue seems to strike women more than men.

I wish you success with Vit D. Wouldn't it be a wonderful miracle if it resolved your problem.

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@ethanmcconkey

Hi @suecreader you may have noticed that I moved your discussion on neupro and restless leg syndrome to this existing discussion on RLS that you have taken a part in.

Let's open this up to the group. @mamacita @degarden_girl @barbarn @ssbionicknee @nightwalker18 @gaylea1 have any of you tried this medication? Or have you explored taking it with your physician?

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Thanks Ethan McConkey – I thought I was posting under that same discussion . . . sorry. I appreciate you noticing and correcting it.

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@degarden_girl

@suecreader Oh Sue, I am so very sorry for all you are going through with this awful syndrome. I too was on requip for a few months but went off it because I felt so ill.

Once I hit on Vit D and found it worked for me, I have not sought any other medications. It sounds like you are desperate for something that will help. I have absolutely no idea if Vit D will be helpful to you but it is a pretty benign medication and worth a try. I take 4000 IU at bedtime. I believe that up to 5000 IUs are considered totally safe and if you want to try more than that, you should probably talk to your MD about monitoring your Vit D.

Yes, RLS does seem to be a problem dumped on us older people. There must be something in our brain that begins to malfunction. I have wondered if hormone replacement therapy would ease RLS symptoms. This issue seems to strike women more than men.

I wish you success with Vit D. Wouldn't it be a wonderful miracle if it resolved your problem.

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@degarden_girl – your kind words of sympathy were so nice – thank you! I have not heard of high doses of Vitamin D as a therapy that would be effective against restless legs. I'll give that a try. As I said, sometimes I feel so desperate for sleep . . . . at the same time, I do want to make wise choices. Good advice to ask my regular MD who oversees general health issues how much Vit D is considered safe on a daily basis. Bet it felt like a miracle for you when you discovered that it worked for you. Yes, I believe I would feel like someone handed me a million dollars if I found something that would help me sleep and be 'normal' again. Not sleeping limits my activities since I'm afraid to drive very much since I drop to sleep involuntarily, and I don't stay travel or stay overnight with others since I never know what level of intensity my RLS will be.
As for the connection to the brain – I think you are right. When I tried the Relaxis pad, a representative from the company was checking in with me on a weekly basis and giving me different tips to try to get the pad to work for me. It is an FDA approved device, but it seemed to work in different positions and/or times of day for 2-3 hours, and then stopped working after two-three days. His company believes that RLS starts in the thalamus part of the brain, and during the day when the brain is active, we don't notice RLS symptoms. However, when we go to bed, the thalamus needs to be busy due to a chemical imbalance with hormones, and it kicks the RLS into gear thus creating the horrible feeling of not being able to lay still at night. He suggested listening to songs that are NOT soothing sounds, but instead rock music or other types that engage the mind more fully than nature sounds. I am on the road to believing him since it seems when I try to practice the CBT techniques of getting up and doing something calm .

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@degarden_girl

@mamacita My Vit D wasn't deficient before and is still very much within normal range so not at all sure why the Vit D controls RLS. Both RLS and PILM complicate the whole sleep thing. From what I understand, RLS occurs when we are just falling asleep. I wonder if your sleep Apnea has you "falling asleep" frequently through the night, especially now that your machine is broken. You might try the Vit D and see if that helps calm your legs. It certainly was an easy solution for me. I had MDs prescribing medications usually used for Parkinson's disease and they made me so sick.

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Oh boy, both your symptoms and outcomes sound so similar to mine @degarden_girl …. I too took drugs designed for treatment of Parkinsons before Requip came on the scene. And yes, they made me very ill too, and I had a blasting headache the next day as well.

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@mamacita

@degarden_girl I find this fascinating, as I too, was diagnosed with RLS. But I don't just have the compulsion to move my legs, they DO move about all on their own, throughout my sleep. I also have sleep Apnea, but my machine is broken. So I must get another appointment with the sleep doctor. Interesting to hear about the Vitamin D. Interesting too, that many doctors don't want us to take supplements that we are actually deficient in. Good luck and let us hear back how you are getting along, won't you?

Mamacita

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Interesting @mamacita,that your RLS manifests differently – it sounds like the CPAP machine helps you with getting a good night's sleep? That's very good news since it helps you function much better the next day and beyond too. I agree with degarden_girl that it's important to get your machine fixed. From people who have suffered through the getting-use-to-it part with the face covering, along with the straps to keep the mechanism in place, it ends up being worth it in the end. Many of these people won't go anywhere without their machine, so that also speaks to its importance.

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@suecreader

Oh boy, both your symptoms and outcomes sound so similar to mine @degarden_girl …. I too took drugs designed for treatment of Parkinsons before Requip came on the scene. And yes, they made me very ill too, and I had a blasting headache the next day as well.

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@suecreader I just thought I would outline my routine in case it is something you could adopt.

I take 4000 IU of Vit D at bedtime. I am usually able to go to sleep and stay asleep, no RLS, for several hours — sometimes as many as 4 hours. Then I am wide awake but still no RLS. If I cannot go back to sleep I first take a 100 mg cap of gabapentin and then about 10 minutes later, I take 1/4 to 1/3 of a 10 mg tab of Ambien. The Gabapentin stops the PILM and maybe RLS from kicking in as a result of the Ambien. This routine works for me. I am pretty careful about how much Ambien I take but every so often apparently my nibble was a bit more than usual and the foot flapping begins. But, then I fall asleep and either I no longer notice the foot flapping or it stops. The foot flapping is from PILM triggered by the Ambien, not from RLS although I think the two are somehow connected conditions.

I was not finding any of the Parkinson's drugs were good choices for me, including Requip. They made me absolutely ill. But this routine keeps me rested and sane. Some people will say I shouldn't take Ambien but my MD says it is fine if it resolves the sleep issue (I have had chronic insomnia which has continued to worsen since menopause). For me, this amount of Ambien just gets me back to sleep and I am then able to sleep for a sufficient number of hours that in total, gives me 7 to 8 hours of sleep a night.

You are in such misery from this awful syndrome, I do hope you are able to try this routine and have some success with it.

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@degarden_girl and @suecreader – those of us who suffer from RLS and PILM can so relate to you!!! I too worry about the memory problems with gabapentin. My dr just switched me from Requip to Mirapex, and for the first few days I thought that was the "miracle" cure, but the movement is back now. I agree that we each seem to need to find our own regimen, for me the Mirapex seemed so wonderful, but it makes me soooo sleepy – I fall asleep in the middle of a bridge game!!! (Not too bad at bedtime tho') And I think the Mirapex also does something to my memory!!! I will definitely take more Vit D!!! Another thing – I try to take a Tramadol when it is time to prepare dinner, as that gives me an energy boost for the evening so I'm more able to get up and move around when the RLS sets in.

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I have struggled a lot with restless legs and overall jitters at night. I use tonic water for the quinine….it helps. But I also put two tablets of AlkaSeltzerGold (must be the Gold!) into a glass of water and drink it. The results are oddly amazing. Amazon sells the AlkaSeltzerGold….I buy it by the carton! Try it…you will be so glad you did! Best wishes!

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@barbarn

@degarden_girl and @suecreader – those of us who suffer from RLS and PILM can so relate to you!!! I too worry about the memory problems with gabapentin. My dr just switched me from Requip to Mirapex, and for the first few days I thought that was the "miracle" cure, but the movement is back now. I agree that we each seem to need to find our own regimen, for me the Mirapex seemed so wonderful, but it makes me soooo sleepy – I fall asleep in the middle of a bridge game!!! (Not too bad at bedtime tho') And I think the Mirapex also does something to my memory!!! I will definitely take more Vit D!!! Another thing – I try to take a Tramadol when it is time to prepare dinner, as that gives me an energy boost for the evening so I'm more able to get up and move around when the RLS sets in.

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@barbarn @vickiekay Tramadol is a pain medication. Interesting that you find it provides you with energy. I looked at the ingredients of Alka seltzer Gold and they are all antacid meds. I know that heartburn and GERD can cause wakefulness and can also trigger premature ventricular contractions (PVC's) and both can cause problems sleeping. RLS seems to present itself in that stage where we are trying to fall asleep. If it is present after we fall asleep, I guess we don't notice it or don't care! But if there is some issue keeping us from going into a deep sleep, I would think that would also allow us to be more affected by or more aware of RLS.

This stuff is so complicated!

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@barbarn

@degarden_girl and @suecreader – those of us who suffer from RLS and PILM can so relate to you!!! I too worry about the memory problems with gabapentin. My dr just switched me from Requip to Mirapex, and for the first few days I thought that was the "miracle" cure, but the movement is back now. I agree that we each seem to need to find our own regimen, for me the Mirapex seemed so wonderful, but it makes me soooo sleepy – I fall asleep in the middle of a bridge game!!! (Not too bad at bedtime tho') And I think the Mirapex also does something to my memory!!! I will definitely take more Vit D!!! Another thing – I try to take a Tramadol when it is time to prepare dinner, as that gives me an energy boost for the evening so I'm more able to get up and move around when the RLS sets in.

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Thank you @barbarn, it's good to know (but I'm not glad that you are experiencing the same memory problems) about the side effects of Mirapex. I think if Neupro stops working, that might be a next step, so it is good to brace myself. That falling asleep involuntarily is disconcerting isn't? However, sleeping at night becomes such a treasured commodity that I'm willing to deal with almost anything else. An added note, I was taking Tramodol for awhile before I started with Neupro . . . . . I learned from the pharmacist that can also affect memory. Just so you know . . . . .you might be getting a double whammy there. However, I'm not advocating stopping since I was taking 100 mg before, and it was the only thing that would help with pain AND helped me sleep too.

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