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.

@gaylea1

@suecreader I was prescribed gabapentin as part of my pain relief regime but also noted that it is also used to treat restless leg syndrome. Maybe you could ask about this?

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Thanks so much for the suggestion. However, I was given Gabapentin for relief of RLS four years ago, and the doctors kept increasing the dosages up to 1,800 mg hoping larger dosages would override symptoms or restless leg. However, it gave me no relief of those symptoms at night. On the other hand, it really helped my fibromyalgia symptoms. Also, the side effects of that much was extreme forgetfulness – I was afraid I was developing Alzheimers since I would forget what people were telling me in the middle of conversations and didn't remember how to get to places which were in my normally well-traveled routes. So, we cut back to 900 mg daily, and I still had some symptoms that were still making me feel way too forgetful to function in a normal world, and now I'm taking 300 mg Gabapentin at 4:00 to prevent onset of symptoms of RLS, and then after I reapply the Neupro patches, which I'm to do every 24 hours. If I wake with some RLS symptoms in the middle of the night, then I can take 1-3 Gabapentin at 100 mg each. Some nights I need to use it, and other times I don't since the Neupro seems to take care of the legs and allows me to sleep too (whew!). I'm rather grateful to not being taking too much Gabepentin now since the Neupro has that side effect (for me anyway) of forgetfulness too. However, sleep is worth it. I hope that Gabapentin continues to help you with pain relief. Again, thank you for taking time to respond to me.

Liked by barbarn

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@barbarn

@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is supposed to impart! It "wires" me!!! Certainly cannot take it for "sleep"! I was taking Requip for the RLS, but as with you, had to start increasing the amount. So my dr switched me to Mirapex – which I thought would be the answer!!! For 10 days I had no leg movement! But then it began again, and am now increasing the Mirapex dosage! All the while I am taking gabapentin, and Tramadol, tho' only in the late afternoon and at bedtime. As with you, no alcohol or caffeine after 2 or 3 pm. Thinking of asking my dr about Neupro? Also thinking – what if … one could alternate Requip and Mirapex? …daily? weekly? monthly? Just a thought! I also have pain from spinal stenosis and/or neuropathy, so when you add the jumping around from RLS or PILM it becomes TERRIBLE!!! You dread evenings and night and would do almost anything (or take anything!) to get a decent few hours sleep! The Mirapex makes me sleepy, so it is wonderful to take at bedtime – however that effect lasts into the next day and I am afraid to drive or do anything that requires my full attention. What to do…

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Yes! @barbarn that has happened to me too, the fact that so many things that worked, only did for awhile, and then it stops! Such a relief to find something and get some much-needed sleep, and then so disappointing when it stops working! After only ten days when you were thinking you were going to get relief; that is especially disheartening. I also tried Mirapex once, but that has been about 10 years ago, and we (the doctor and I) stopped that since the headaches were so severe, I couldn't function. I took Gabapentin and Tramadol for two years too, although now that Tramadol has been reclassified, getting refills can sometimes be a bit difficult since my regular MD suggested I taper off. I was taking two 50 mg tablets at night for sleep, plus 600 mg of Gabapentin since that was the only thing that gave me even minimal relief. Even at that, I was only getting 1 1/2 hours of sleep at night, interspersed with three-four 15 minute intervals when I was able to doze a bit before the legs propelled me out of bed. I was unable to lay still at all, and so I totally understand what you mean about the dread and feeling of doom you feel as night approaches . . . . it felt like every night was a marathon in trying to control symptoms and walking/jogging through the house. And, like you, getting no sleep aggravated a host of other symptoms – high blood pressure, increased fibro pain, depression, etc., and I still had the forgetfulness with that since I learned that both Gabapentin and Tramadol can interfere with memory so coupled with no sleep, I felt like a walking zombie. I have wondered that too actually about alternating Requip with something else that might work. I haven't asked my doctor at Mayo about that however, since I had lumbar surgery in July, and we didn't want to be changing prescriptions while I was in the midst of recovering since I'm sensitive to many different medications already. I might add that higher dosages of Tramadol did help, which I was taking after surgery (other opiates make my restless legs worse, and they make me really sick as well), but again, taking too much of that is a double-edged sword due to possibility of addiction. It is so hard to find something that works that helps you sleep only to haveside-effects that interfere with your life isn't it? I tried to keep telling myself that RLS is not as bad as say, a cancer diagnosis; however, even tho I said that aloud to other people, at night I would feel hopeless since sleep is so necessary. I find that a good night's sleep now with Neupro has made it possible for me to stop taking Tramadol every night. It is worth a try to ask your doctor about Neupro, I think, although just a heads up, it is in the same 'family' as Requip. I was afraid that would mean it would stop working, but it has been two months now that I've been taking it and so far, it hasn't reached that augmentation point where I need more, and more, and more. So, I'm keeping my fingers crossed. Also, it is expensive @ about $1,200/month, but my insurance covered half that amount ($60 is still a bit when other medications are a bit on the pricey side too). However, I looked on the website for Neupro, and they offer a patient savings program and will issue a card you can use. I am going to see what happens in terms of cost when I pick up my next prescription in the next few days. Good luck – I so hope you get some relief!

Liked by barbarn

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@barbarn

@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is supposed to impart! It "wires" me!!! Certainly cannot take it for "sleep"! I was taking Requip for the RLS, but as with you, had to start increasing the amount. So my dr switched me to Mirapex – which I thought would be the answer!!! For 10 days I had no leg movement! But then it began again, and am now increasing the Mirapex dosage! All the while I am taking gabapentin, and Tramadol, tho' only in the late afternoon and at bedtime. As with you, no alcohol or caffeine after 2 or 3 pm. Thinking of asking my dr about Neupro? Also thinking – what if … one could alternate Requip and Mirapex? …daily? weekly? monthly? Just a thought! I also have pain from spinal stenosis and/or neuropathy, so when you add the jumping around from RLS or PILM it becomes TERRIBLE!!! You dread evenings and night and would do almost anything (or take anything!) to get a decent few hours sleep! The Mirapex makes me sleepy, so it is wonderful to take at bedtime – however that effect lasts into the next day and I am afraid to drive or do anything that requires my full attention. What to do…

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@barbarn I do find an occasional half of a Benadryl will help me sleep, but when I had cirrhosis I was given a prescription for oxycodone and I couldn't sleep at all. I literally lay in bed until about 6:00 in the morning staring at the ceiling. Then of course I was exhausted the next day. The doctor then gave Dilaudid, but that had the same effect. I haven't needed to take any drugs of that nature since then so I have no idea if it was related to my cirrhosis or if I would still have the same problem.
JK

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@suecreader

Yes! @barbarn that has happened to me too, the fact that so many things that worked, only did for awhile, and then it stops! Such a relief to find something and get some much-needed sleep, and then so disappointing when it stops working! After only ten days when you were thinking you were going to get relief; that is especially disheartening. I also tried Mirapex once, but that has been about 10 years ago, and we (the doctor and I) stopped that since the headaches were so severe, I couldn't function. I took Gabapentin and Tramadol for two years too, although now that Tramadol has been reclassified, getting refills can sometimes be a bit difficult since my regular MD suggested I taper off. I was taking two 50 mg tablets at night for sleep, plus 600 mg of Gabapentin since that was the only thing that gave me even minimal relief. Even at that, I was only getting 1 1/2 hours of sleep at night, interspersed with three-four 15 minute intervals when I was able to doze a bit before the legs propelled me out of bed. I was unable to lay still at all, and so I totally understand what you mean about the dread and feeling of doom you feel as night approaches . . . . it felt like every night was a marathon in trying to control symptoms and walking/jogging through the house. And, like you, getting no sleep aggravated a host of other symptoms – high blood pressure, increased fibro pain, depression, etc., and I still had the forgetfulness with that since I learned that both Gabapentin and Tramadol can interfere with memory so coupled with no sleep, I felt like a walking zombie. I have wondered that too actually about alternating Requip with something else that might work. I haven't asked my doctor at Mayo about that however, since I had lumbar surgery in July, and we didn't want to be changing prescriptions while I was in the midst of recovering since I'm sensitive to many different medications already. I might add that higher dosages of Tramadol did help, which I was taking after surgery (other opiates make my restless legs worse, and they make me really sick as well), but again, taking too much of that is a double-edged sword due to possibility of addiction. It is so hard to find something that works that helps you sleep only to haveside-effects that interfere with your life isn't it? I tried to keep telling myself that RLS is not as bad as say, a cancer diagnosis; however, even tho I said that aloud to other people, at night I would feel hopeless since sleep is so necessary. I find that a good night's sleep now with Neupro has made it possible for me to stop taking Tramadol every night. It is worth a try to ask your doctor about Neupro, I think, although just a heads up, it is in the same 'family' as Requip. I was afraid that would mean it would stop working, but it has been two months now that I've been taking it and so far, it hasn't reached that augmentation point where I need more, and more, and more. So, I'm keeping my fingers crossed. Also, it is expensive @ about $1,200/month, but my insurance covered half that amount ($60 is still a bit when other medications are a bit on the pricey side too). However, I looked on the website for Neupro, and they offer a patient savings program and will issue a card you can use. I am going to see what happens in terms of cost when I pick up my next prescription in the next few days. Good luck – I so hope you get some relief!

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@suecreader – You probably are much younger than I and have been dealing with these issues so much longer. Do you think that whatever the cause for lumbar surgery, could have some effect on the RLS? Also, in reading these posts – makes me wonder if the fibromyalgia contributes to the RLS? Seems I read of so many people that have Fibrom and also RLS? Hoping the Neupro continues to do the job for you!!!

Liked by lioness

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@suecreader

Yes! @barbarn that has happened to me too, the fact that so many things that worked, only did for awhile, and then it stops! Such a relief to find something and get some much-needed sleep, and then so disappointing when it stops working! After only ten days when you were thinking you were going to get relief; that is especially disheartening. I also tried Mirapex once, but that has been about 10 years ago, and we (the doctor and I) stopped that since the headaches were so severe, I couldn't function. I took Gabapentin and Tramadol for two years too, although now that Tramadol has been reclassified, getting refills can sometimes be a bit difficult since my regular MD suggested I taper off. I was taking two 50 mg tablets at night for sleep, plus 600 mg of Gabapentin since that was the only thing that gave me even minimal relief. Even at that, I was only getting 1 1/2 hours of sleep at night, interspersed with three-four 15 minute intervals when I was able to doze a bit before the legs propelled me out of bed. I was unable to lay still at all, and so I totally understand what you mean about the dread and feeling of doom you feel as night approaches . . . . it felt like every night was a marathon in trying to control symptoms and walking/jogging through the house. And, like you, getting no sleep aggravated a host of other symptoms – high blood pressure, increased fibro pain, depression, etc., and I still had the forgetfulness with that since I learned that both Gabapentin and Tramadol can interfere with memory so coupled with no sleep, I felt like a walking zombie. I have wondered that too actually about alternating Requip with something else that might work. I haven't asked my doctor at Mayo about that however, since I had lumbar surgery in July, and we didn't want to be changing prescriptions while I was in the midst of recovering since I'm sensitive to many different medications already. I might add that higher dosages of Tramadol did help, which I was taking after surgery (other opiates make my restless legs worse, and they make me really sick as well), but again, taking too much of that is a double-edged sword due to possibility of addiction. It is so hard to find something that works that helps you sleep only to haveside-effects that interfere with your life isn't it? I tried to keep telling myself that RLS is not as bad as say, a cancer diagnosis; however, even tho I said that aloud to other people, at night I would feel hopeless since sleep is so necessary. I find that a good night's sleep now with Neupro has made it possible for me to stop taking Tramadol every night. It is worth a try to ask your doctor about Neupro, I think, although just a heads up, it is in the same 'family' as Requip. I was afraid that would mean it would stop working, but it has been two months now that I've been taking it and so far, it hasn't reached that augmentation point where I need more, and more, and more. So, I'm keeping my fingers crossed. Also, it is expensive @ about $1,200/month, but my insurance covered half that amount ($60 is still a bit when other medications are a bit on the pricey side too). However, I looked on the website for Neupro, and they offer a patient savings program and will issue a card you can use. I am going to see what happens in terms of cost when I pick up my next prescription in the next few days. Good luck – I so hope you get some relief!

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@barbarn I also have taken gabapentin and tramadol but I add 30mg of mirtazapine and it puts me to sleep for about 2 hours then the rest of the night I'm awake every hour on the hour.

Liked by barbarn

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@lioness

@barbarn It's dill pickle juice as soon as they start I drink a couple of swallows Keep it around all the time hope you feel better new year,new you

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@lioness I also use dill pickle juice to help settle my stimach. It works for me.

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@gaylea1

@lioness I also use dill pickle juice to help settle my stimach. It works for me.

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@gayle1 Good glad it helps your stomach It's surprising how just spices,herbs,old fashion remedies helps

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@gaylea1

@barbarn I also have taken gabapentin and tramadol but I add 30mg of mirtazapine and it puts me to sleep for about 2 hours then the rest of the night I'm awake every hour on the hour.

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That is rough — sleep is so welcome, but two hours is NOT enough. So disappointing for you. I know the feeling of being awake that often during the night – are RLS a problem all those times too?

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@gaylea1

@lioness I also use dill pickle juice to help settle my stimach. It works for me.

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Wow – I've been taking dill pickle juice too since @lioness recommended it. I haven't had an upset stomach since so maybe that's why – a double benefit. Thank you @lioness

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@suecreader

Wow – I've been taking dill pickle juice too since @lioness recommended it. I haven't had an upset stomach since so maybe that's why – a double benefit. Thank you @lioness

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@suecreader your welcome

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Sorry @barbarn – I realized that I hadn't responded to one of your last posts. I may not be "much younger" than you since I am 67 . . . . I can't remember if I mentioned that my RLS have always kind of been there but mild at first, but they have been increasing severe for the past 20 years or so. I do believe, and my Sleep Center doctor confirmed it, that 'any pain below the waist aggravates RLS." So you are right about that . . . now that my surgery is done, and I'm feeling better physically, and the pain is minimized in the lumbar area (although now the doctors think I may have some bone-on-bone in my hip area . . . so this is 'another level of pain' that might need to be addressed). It could also be sciatica. I don't know if fibro contributes to RLS – I do think that lack of sleep can make people more exhausted, and with fibro it does complicate the whole healing process. Thanks for your good wishes . . . . I hope so with the Neupro too. Like you mentioned earlier . . . I am hoping if not, I can switch between Neupro and Requip since the latter worked for nine years but then stopped, pretty abruptly.

Liked by barbarn

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In case it might help someone, there are two things that I have discovered activate my RLS : wine at dinner, probably any alcohol, as well as SSRI medications. Even when avoiding these, I occasionally still experience symptoms in the evening, particularly when fatigued and relaxing in a recliner chair, but they are much less intense and more tolerable.

Liked by Lisa Lucier, barbarn

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I've had RLS for years. It's really horrible. I take Requip and it works great. Low iron does worsen the symptoms and well as certain medications for me anyway. I was told my iron levels needs to be at least 60 by a sleep doctor.
Hope this helps. It sucks for sure.

Liked by barbarn

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@susan2018

In case it might help someone, there are two things that I have discovered activate my RLS : wine at dinner, probably any alcohol, as well as SSRI medications. Even when avoiding these, I occasionally still experience symptoms in the evening, particularly when fatigued and relaxing in a recliner chair, but they are much less intense and more tolerable.

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Amen to that @susan2018! I quickly learned as my restless legs progressed that alcohol not only started them, but it worsened through the night. You mention wine, but for me, it is any kind of alcohol. It used to be that I couldn't drink any after 6:00, and over the past years, the time has become earlier and earlier so that now, if I drink alcohol at all, it can only be one beer or one glass of wine before 3:00 p.m. I do miss the occasional glass of wine at dinner, but the after-effects are not worth it. The same is true with any product containing caffeine – chocolate, Bufferin, or coffee. As for SSRIs, they worsened my symptoms as do Ativan, Compazine, Klonapin, etc. My Sleep Center doctor suggested I use only Wellbutrin for treatment of depression since studies have shown that SSRIs especially aggravate restless legs. So, you are right about the SSRIs too . . . I was taking Celexa and when I switched to Wellbutrin, it worked even better for me than Celexa.

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@suscros68

I've had RLS for years. It's really horrible. I take Requip and it works great. Low iron does worsen the symptoms and well as certain medications for me anyway. I was told my iron levels needs to be at least 60 by a sleep doctor.
Hope this helps. It sucks for sure.

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@suscros68 – have your RLS symptoms become worse as the years progress? Mine have. . . and I sincerely hope they've reached a plateau by now. I've had symptoms beginning with slightly aggravating and occasional to nightly and much more intense. I used to take Requip, but it stopped working and I had to start increasing to larger doses which then had side effects that made it difficult to function the next day. Now, I'm taking Neupro, a transdermal patch that is 'in the same family' as Requip, and so far I'm up to 3 mg and that dosage seems to work for me. I'm sensitive to many medications as well, and I was told by a fibromyalgia doctor at Mayo that it is common for people with fibro to have many sensitivities. I only mention fibro in case you might have that diagnosis or condition also.

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