rls worse in left leg
rls worse in left leg
It's 2:00 a.m. and I'm new to this discussion board. Thanks to you all for posting your experiences and suggestions. It makes me realize I'm not the only one up in the middle of the night. I discovered I had RLS 4 years ago when I read The Promise of Sleep, by Dement (was the sleep guru at Stanford Sleep Clinic for years). Lately, the RLS in my left leg is much worse than my right. Has anyone else out there noticed one leg being worse than the other? When I move my left ankle around, it creaks and groans, but my right leg makes no sound at all and seems to feel no pain in comparison. Lately I've been wondering if I might (also?) have peripheral neuropathy, or fibromyalgia. My RLS always kicks in during the evening, after dinner, and once I get to sleep wakes me up 2 or 3 times a night, even with drugs (I've tried Sinemet, Mirapex, Temazepam, and Tylenol #3). Being on drugs is a drag. It's tempting to go off everything, but I know I won't sleep. But I'll try some of the suggestions I've read tonight in other people's postings; some seem really hopeful.
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
Hi Oaklander
I'm Jan
Brady is right, at least in MY humble opinion. Having had RLS for 20 years, QUALITY of life is far more important to me than becoming dependent on drugs. My neuro told me several years ago, and I'm paraphrasing because the old memory isn't what it used to be, "What does it matter if you become 'addicted' to a medication--there is NO CURE for RLS and you'll have to be on medication the rest of your life." My neuro is a very well respected man who practices at Barnes Hospital in St. Louis, MO. He is in a practice with two other doctors who treat patients with MS, Alzheimers, Parkinsons, RLS, and Fibromyalgia (I may be missing something). Speaking of fibro, I was just diagnosed with that on Thursday of this past week. I've been in constant pain ALL OVER MY BODY for two months, I've had trouble walking, it hurts just to turn over in bed or to get in and out of the car, etc. I thought it was just my RLS becoming worse, at first. Then, I knew that it was something else, but didn't know what. I started to suspect fibro. I always have have had a pretty high tolerance for pain. But I've never had CHRONIC pain before--pain 24/7. It wears you down. The best way I can describe this feeling is a deep, burning, pain that is always present but comes in waves in my joints, fingers, shoulders, always present in my legs, neck, back, my RIGHT leg is worse than my left leg, I get cramps really easily--I just hurt!! And, unfortunately, some of the medication that helps fibro, causes RLS to be worse, so we have to experiment. I know this post is long--I do tend to be long winded (SORRY). I guess I just wanted to explain my situation to you so that you could see where I'm coming from. Everyone has to decide his or her own course of therapy, of course. I choose not to experience the creepy crawlies or pain anymore. I hope you get some relief anyway you choose!!! I'm always so sorry when I hear of someone else who has RLS (and I really hope you don't have fibro!!). I hope you decide to join our "family". We would like to have you!
Jan
Brady is right, at least in MY humble opinion. Having had RLS for 20 years, QUALITY of life is far more important to me than becoming dependent on drugs. My neuro told me several years ago, and I'm paraphrasing because the old memory isn't what it used to be, "What does it matter if you become 'addicted' to a medication--there is NO CURE for RLS and you'll have to be on medication the rest of your life." My neuro is a very well respected man who practices at Barnes Hospital in St. Louis, MO. He is in a practice with two other doctors who treat patients with MS, Alzheimers, Parkinsons, RLS, and Fibromyalgia (I may be missing something). Speaking of fibro, I was just diagnosed with that on Thursday of this past week. I've been in constant pain ALL OVER MY BODY for two months, I've had trouble walking, it hurts just to turn over in bed or to get in and out of the car, etc. I thought it was just my RLS becoming worse, at first. Then, I knew that it was something else, but didn't know what. I started to suspect fibro. I always have have had a pretty high tolerance for pain. But I've never had CHRONIC pain before--pain 24/7. It wears you down. The best way I can describe this feeling is a deep, burning, pain that is always present but comes in waves in my joints, fingers, shoulders, always present in my legs, neck, back, my RIGHT leg is worse than my left leg, I get cramps really easily--I just hurt!! And, unfortunately, some of the medication that helps fibro, causes RLS to be worse, so we have to experiment. I know this post is long--I do tend to be long winded (SORRY). I guess I just wanted to explain my situation to you so that you could see where I'm coming from. Everyone has to decide his or her own course of therapy, of course. I choose not to experience the creepy crawlies or pain anymore. I hope you get some relief anyway you choose!!! I'm always so sorry when I hear of someone else who has RLS (and I really hope you don't have fibro!!). I hope you decide to join our "family". We would like to have you!
Jan
No one is alone who had friends.
Hey, Oaklander and welcome!
So sorry that you're up at night, but glad you've joined us here if you're going to be awake anyway.
I'm thankfully still in a moderate level of RLS, and one that disrupts my life, but not as much of my sleep as you or many others here. I've not tried medications yet, and I feel my quality of life is acceptable SO FAR. But I'm not someone who does well on any type of drug (OTC or RX), so I'll be honest, I really FEAR the time when my quality of life question might end up being a choice between RLS ruining my life or the side effects of the drugs doing it.
Like Brady and Jan, I don't have an issue with the fact of potential dependency on drugs, if that's what we have to do to live, then there's no shame in doing it. I'm just afraid that I WON'T find something that gives relief without side effects that are even worse.
I did want to mention that overall, my right foot and leg are more affected by RLS than my left (though right now, just to annoy and contradict me, my left seems to be vying for attention!
)
I've had RLS for at least 20 years, but recently am having it a LOT more often (sometimes 24/7 everyday... but thankfully I can sleep... I just can't sit or stand still when it's at its worst.) As well as I can recall, I've always had a bit more frustration and irritation from my right foot than my left. I wonder what that means?
Anyway, welcome again, and best wishes to you. I used to have family that lived just below the Mormon Temple there in your city. I used to love to see it lit up at night; it seemed like a castle.
Sara
So sorry that you're up at night, but glad you've joined us here if you're going to be awake anyway.
I'm thankfully still in a moderate level of RLS, and one that disrupts my life, but not as much of my sleep as you or many others here. I've not tried medications yet, and I feel my quality of life is acceptable SO FAR. But I'm not someone who does well on any type of drug (OTC or RX), so I'll be honest, I really FEAR the time when my quality of life question might end up being a choice between RLS ruining my life or the side effects of the drugs doing it.
Like Brady and Jan, I don't have an issue with the fact of potential dependency on drugs, if that's what we have to do to live, then there's no shame in doing it. I'm just afraid that I WON'T find something that gives relief without side effects that are even worse.
I did want to mention that overall, my right foot and leg are more affected by RLS than my left (though right now, just to annoy and contradict me, my left seems to be vying for attention!
)
I've had RLS for at least 20 years, but recently am having it a LOT more often (sometimes 24/7 everyday... but thankfully I can sleep... I just can't sit or stand still when it's at its worst.) As well as I can recall, I've always had a bit more frustration and irritation from my right foot than my left. I wonder what that means?
Anyway, welcome again, and best wishes to you. I used to have family that lived just below the Mormon Temple there in your city. I used to love to see it lit up at night; it seemed like a castle.
Sara
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ViewsAskew
- Moderator
- Posts: 16584
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Alternating
I find it alternates over time. For months, it would start every afternoon in my left leg (I get mine in my thigh, not foot or calf), but in the evening it could be either. Most of the time I have it in one or the other but not both. Sometimes it's bad in one and minor in the other, but usually not bad in both at the same time. My sister, who also has it, says it always starts in her right leg and is more prevalent in her right.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Mine always starts in one leg and after that one FINALLY calms down, it starts in the other. I never have it in both at the same time. As for the drugs, I agree with my friends. Quality of life counts. Find what works for you and stay with it. RLS is a life-long reality. For many it may come and go but it never goes completely away. If certain drugs help you cope, then that's what you need to do. Just hang in there and know that you aren't alone.
thanks everyone
Hi to those who responded to my posting 10/29. I haven't been online to check this website since that night. Since then, Sinemet has been working miracles, compared to what I was experiencing before. Within 20 minutes of taking Sinemet, my symptoms (which were bad) were gone. But, I was waking up every 2-4 hours with it, so over the last few weeks I have become a walking zombie and decided to ask my doctor is there was ANYTHING out there that would allow me to simply sleep through the night. Last night, 12/3, was my first night on Requip, and it worked, although I think I have to fudge with the timing of taking it before bed (1-2 hours?). Anyhoo, if this doesn't work, I will have to try Neurontin, I suppose.
By the way, any of you out there who haven't seen the Algorithm for treatment of RLS the Mayo clinic put out this year, it's very good. My primary care physician had never heard of RLS until I mentioned it, and believe me, she is the best doctor I've ever had--incredibly proactive. She asked me to give her the RLS algorithm and just took a class on RLS and is going to try to help me with this, even though I have a neurologist helping me with it as well. I encourage all those who still haven't seen the algorithm to go to www.mayo.edu/proceedings and find it in the July 2004 articles, but it was also published in the Summer 2004 Nightwalkers newsletter. This is a great discussion board. Thanks everyone.
By the way, any of you out there who haven't seen the Algorithm for treatment of RLS the Mayo clinic put out this year, it's very good. My primary care physician had never heard of RLS until I mentioned it, and believe me, she is the best doctor I've ever had--incredibly proactive. She asked me to give her the RLS algorithm and just took a class on RLS and is going to try to help me with this, even though I have a neurologist helping me with it as well. I encourage all those who still haven't seen the algorithm to go to www.mayo.edu/proceedings and find it in the July 2004 articles, but it was also published in the Summer 2004 Nightwalkers newsletter. This is a great discussion board. Thanks everyone.
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nephriticus
- Posts: 88
- Joined: Sun Aug 22, 2004 5:02 am
- Location: Sequim, WA
Oaklander,
Thanks for the website. I haven't gotten to the RLS algorithm yet, but I did read the abstract on "neuropathic pain". I have encountered that term many times in these forums, but for some reason my brain-dense shields were up and the term didn't click. After reading the abstract I thought, "Hey, I've had that for the last thirty-two years!" Now I know that the heck some of you have been talking about.
At age thirty eight I was just a few weeks short of throwing in the towel and telling my employer I could no longer work. If I was awake, I was in pain. It was about this time that pain clinics began sprouting up. I asked my neurosurgeon to refer me to one. Twelve weeks later my life was turned around. No, the pain did not magically disappear, but I learned how to diminish the impact on my life.
My job entails constant work shift changes. Sometimes I have difficulty sleeping, RLS notwithstanding. Lack of sleep exacerbates the neuropathic pain, which in turn makes sleep difficult. A viscious cycle which many of you readers empathize. While the benefits of the pain clinic are not greatly effective in that instance, the learned methods of pain therapy do help greatly during waking hours. I emphatically recommend pain therapy to those who suffer from neuropathic pain.
Thanks for the website. I haven't gotten to the RLS algorithm yet, but I did read the abstract on "neuropathic pain". I have encountered that term many times in these forums, but for some reason my brain-dense shields were up and the term didn't click. After reading the abstract I thought, "Hey, I've had that for the last thirty-two years!" Now I know that the heck some of you have been talking about.
At age thirty eight I was just a few weeks short of throwing in the towel and telling my employer I could no longer work. If I was awake, I was in pain. It was about this time that pain clinics began sprouting up. I asked my neurosurgeon to refer me to one. Twelve weeks later my life was turned around. No, the pain did not magically disappear, but I learned how to diminish the impact on my life.
My job entails constant work shift changes. Sometimes I have difficulty sleeping, RLS notwithstanding. Lack of sleep exacerbates the neuropathic pain, which in turn makes sleep difficult. A viscious cycle which many of you readers empathize. While the benefits of the pain clinic are not greatly effective in that instance, the learned methods of pain therapy do help greatly during waking hours. I emphatically recommend pain therapy to those who suffer from neuropathic pain.
Neph
Currently RLS free. Symptoms stopped almost abruptly after my long term, full time care giving duties ended with passing of wife. No stress, no RLS.
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Currently RLS free. Symptoms stopped almost abruptly after my long term, full time care giving duties ended with passing of wife. No stress, no RLS.
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Anonymous
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Anonymous
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Guest
Hi,
I'm new to this site. Have had RLS for several years, but it has difinately gotten worse. Have not been to a nuro, yet. My GP has put me on Quinine (sp) didn't work and the side effects were rediculous. Then he tried amitripline (sP). I can't spell as you can tell. that did not work either, just left me drugged out the next day. Right now I'm just taking motrin (more at a time than I should).
A good night sleep is something I haven't had in years. It's not just having to constantly move my legs, the jerk. this happens more as the evening goes on, but can happen anytime. At times it seems to be all over my body, its really there tonight.
Its nice to find a site where people know what you are talking about, even though I don't wish this on anyone.
Ethel
I'm new to this site. Have had RLS for several years, but it has difinately gotten worse. Have not been to a nuro, yet. My GP has put me on Quinine (sp) didn't work and the side effects were rediculous. Then he tried amitripline (sP). I can't spell as you can tell. that did not work either, just left me drugged out the next day. Right now I'm just taking motrin (more at a time than I should).
A good night sleep is something I haven't had in years. It's not just having to constantly move my legs, the jerk. this happens more as the evening goes on, but can happen anytime. At times it seems to be all over my body, its really there tonight.
Its nice to find a site where people know what you are talking about, even though I don't wish this on anyone.
Ethel
neuropathic pain?
Does anyone out there know where i can find info on neuropathic pain?
Hello, Oaklander! Long time since we've heard from you! Hope you're doing okay.
I don't know anything specifically about neuropathic pain, but have you gone on Google or one of them, and just typed that in? I just did a quick search for "neuropathic pain" and got a LOT of website matches. I didn't take time to look them over, since I don't know just exactly what you're looking for, but I glanced at one or two, and they seem to have a lot of information. I took a little more time on one from "Brain Briefings" which was really interesting.
Good luck in your research. And take care.
Sara
I don't know anything specifically about neuropathic pain, but have you gone on Google or one of them, and just typed that in? I just did a quick search for "neuropathic pain" and got a LOT of website matches. I didn't take time to look them over, since I don't know just exactly what you're looking for, but I glanced at one or two, and they seem to have a lot of information. I took a little more time on one from "Brain Briefings" which was really interesting.
Good luck in your research. And take care.
Sara
neuropathic pain revisited
Hi Sara. Thanks for the reply! And I will do a google search. That's a good idea. Yes, it has been while since I've been on here. I've gone thru a lot of medical stuff (no surprise to most people on this site!) and have been a bit sidelined. I'm a h.s. teacher, but am out of work all this year with health stuff, and really hope to be back full time in the fall. Finally will be volunteering at Kaiser here in Oakland soon, I hope, to help other people and try to stay busy and feel useful. Thanks again for your reply and info.; I really appreciate this site.
Hi, Oaklander--
It looked like potentially a fair amount of info on the subject available on-line, as I mentioned. A place to start, anyway.
Sorry to hear about you health problems keeping you from teaching, but the volunteering sounds like a positive activity, too.
Hope you get some relief soon and into a smoother patch of life!
Take good care. Sara
It looked like potentially a fair amount of info on the subject available on-line, as I mentioned. A place to start, anyway.
Sorry to hear about you health problems keeping you from teaching, but the volunteering sounds like a positive activity, too.
Hope you get some relief soon and into a smoother patch of life!
Take good care. Sara