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.

@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.

Liked by barbarn

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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.

Liked by degarden_girl

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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!

Liked by barbarn

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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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@vickiekay

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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@vickiekay – thank you!!! I will order AS Gold! it is hard to find here in my small mountain town! so nice to know I can order it from Amazon. bb

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@degarden_girl

@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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@degarden_girl – RLS also gets you anytime you sit down to relax (as in watching TV in the evening) – it also awakens me about 4 or 5 am – sometimes it is accompanied by pain, sometimes not. As far as the Tramadol, many others here in Mayo Connect have volunteered that it seems to contain some kind of stimulant – or maybe it just deals enough with the pain that it's effective!?

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@barbarn

@degarden_girl – RLS also gets you anytime you sit down to relax (as in watching TV in the evening) – it also awakens me about 4 or 5 am – sometimes it is accompanied by pain, sometimes not. As far as the Tramadol, many others here in Mayo Connect have volunteered that it seems to contain some kind of stimulant – or maybe it just deals enough with the pain that it's effective!?

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@barbarn Interesting about Tramadol. My mother was prescribed tramadol for her RLS which also was a problem anytime in the evening. She used to stand behind her chair and lean on the chair to watch TV. She had to stop taking Tramadol as it seemed to be causing her to faint and then she was put on Gabapentin. It seems there are many degrees of RLS and different manifestations and we all have to do what we have found works for us. I am so grateful that the Vit D seems to keep it in check for me and I well recognize that I may not have it as bad as others.

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@degarden_girl

@barbarn Interesting about Tramadol. My mother was prescribed tramadol for her RLS which also was a problem anytime in the evening. She used to stand behind her chair and lean on the chair to watch TV. She had to stop taking Tramadol as it seemed to be causing her to faint and then she was put on Gabapentin. It seems there are many degrees of RLS and different manifestations and we all have to do what we have found works for us. I am so grateful that the Vit D seems to keep it in check for me and I well recognize that I may not have it as bad as others.

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Yes, we are unique individuals so it is not surprising that some things work for certain people, and not for others who need to find their own 'just right' solution. It's the searching, searching for that solution that can be exhausting, and in the meantime without much sleep, it can be discouraging and feel life altering.

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@suecreader Indeed, you are correct. There is no "fits all" solution to this issue. Interestingly, I found out about the Vit D connection quite by accident. My sister developed RLS and separate from that, had a physical and a blood test and was called back to the MD's office because her Vit D was determined to be low. She had an injection and her RLS ceased to be a problem for her. On her next visit she mentioned it to the PA who told her the RLS diminished because of the Vit D. The MD's seem to just prescribe medications and don't look at anecdotal evidence of what works. Anyway, I tried Vit D, increasing from 1000 IU to 4000 IU and that did the trick. The second sister who developed RLS immediately went to Vit D at 4000 IU and her problem was resolved. This might just work for the RLS that particularly affects my family. There may be many causes of RLS.

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So, your sisters were helped by Vitamin D too? You're so right about the anecdotal evidence not being considered – I think doctors stick to the adage "it's not scientifically based evidence." that's why your post is so valuable . . . . . just like the thalamus connection whereby it doesn't work for me to do the CBT approach recommended by Rochester (for people with insomnia–and RLS is NOT the same as insomnia ….as I keep telling people who have the latter). In CBT, people are supposed to have quiet time before bed, no blue lights from TV or other devices, if unable to sleep, get up and do something boring and not at all stimulating. However, I've tried this approach for six months, and it never worked as my RLS just got worse if I tried to read a dull or dry book or do a crossword. With the thalamus connection, the representative from Relaxis indicated that the thalamus needs to stay busy — so, after walking two-three hours and being even more exhausted, sometimes laying down (if my RLS let me) and watching TV allowed me to drift off to sleep. He also recommended listening to something that would be engaging like rock music via headphones . . . . that has worked for some people as told by him (again anecdotal evidence). Thanks for more detail about your story . . . I already take 2000 mg of Vit D but will increase that if Neupro stops working. I don't like to add too much at one time since then it is hard to tell which approach is the one that is most successful.

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@suecreader

So, your sisters were helped by Vitamin D too? You're so right about the anecdotal evidence not being considered – I think doctors stick to the adage "it's not scientifically based evidence." that's why your post is so valuable . . . . . just like the thalamus connection whereby it doesn't work for me to do the CBT approach recommended by Rochester (for people with insomnia–and RLS is NOT the same as insomnia ….as I keep telling people who have the latter). In CBT, people are supposed to have quiet time before bed, no blue lights from TV or other devices, if unable to sleep, get up and do something boring and not at all stimulating. However, I've tried this approach for six months, and it never worked as my RLS just got worse if I tried to read a dull or dry book or do a crossword. With the thalamus connection, the representative from Relaxis indicated that the thalamus needs to stay busy — so, after walking two-three hours and being even more exhausted, sometimes laying down (if my RLS let me) and watching TV allowed me to drift off to sleep. He also recommended listening to something that would be engaging like rock music via headphones . . . . that has worked for some people as told by him (again anecdotal evidence). Thanks for more detail about your story . . . I already take 2000 mg of Vit D but will increase that if Neupro stops working. I don't like to add too much at one time since then it is hard to tell which approach is the one that is most successful.

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@suecreader I understand your reluctance to muddy the waters with multiple approaches to control RLS. If you find Neupro stops working, try doubling your Vit D. I found immediate relieve that very night that I started that regimen. Take it at bedtime. I hope you find relief.

I too did the CBT training for insomnia, unconnected to the RLS. I really did practice it for about 6 months but it just wasn't working. I have found using a Kindle for reading, with the light on the kindle at about half power and the room lights off makes me really, really sleepy. Not that I can always fall asleep when this happens but maybe it is helping me not be wide awake. I cannot imagine having headphones on, playing rock music would ever help me fall asleep. I do best in total quiet and often wear earplugs as well.

Liked by barbarn

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@suecreader

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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I am so tempted to try the mouth device that you can get through some dental offices! Lugging a C-Pap machine through an airport with a suitcase, purse, and a carryon bag is for the birds. Ha!

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@blindeyepug

Hi. I have RLS. I have had it for over 10 years. I also have fibromyalgia, rheumatoid arthritis and sjogren’s syndrome. I am on several different medications. My iron has never been low. My thyroid is normal. I have been on Klonopin before. Did not work for me. I am now on Trazadone. It is working for me. The best thing is to be able to get some sleep, which is hard when your legs ache and you feel a need to move! If you are still having issues, I would try having a sleep study done. I would also try a different medication if you aren’t getting relief. Many doctors will tell you with RLS or fibromyalgia or other types of diseases for which there is no cure, that you just have to live with it. But you don’t. If that is what your doctor has told you, you need to find another doctor. I have gone through several doctors before I ever even got my diagnosis of fibromyalgia. It was a sleep study that gave me the diagnosis of RLS. Do not give up hope. I also was very low on vitamin D. I take supplements now.l I think it is helpful, too. Hang in there. You can get better relief than it sounds like you’re getting.

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Im going to chime in here on RLS For our bodies to respond without drugs its important to take Vit D3if your low in it ,have lab work done but along with this calcium and magnesium are needed as they all complement each other But ever one is different and responds to perscribed medicine differently.

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