Driving & RLS
Driving & RLS
I've lived with RLS for atleast 15-20 yrs now and it just keeps getting worse!! I wonder if any one has a problem driving and the RLS acting up? I'm a single mother of a 3 yr old and when it starts when I'm driving I would like to lose my mind. Ive thought of applying for disability. Please any input on driving and RLS would be great. Also I've taken Requip for a few yrs then switched to Mirapex neither one seems to be working anymore and I only sleep for maybe 2-3 hrs a night. I don't know what to do anymore???
Kelli Rae
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woodsie357
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I'm so sorry to hear you're having difficulties with driving.
When I first got RLS being in the car was the worst. So I can understand just how horrible that is. I remember pulling over and walking around ever few minutes, long drives were out of the question. Being a single mom and not being able to drive is awful thought.. I'm afraid and this is only my opinion, and I could be wrong. I've heard that if you apply for disability and tell them how bad you have it while driving that they take away your drivers license, and I can't imagine how bad that would be for you.
Hopefully if there is anyone on disability on this forum that they might be able to give you some good advice.
My heart goes out to you!
When I first got RLS being in the car was the worst. So I can understand just how horrible that is. I remember pulling over and walking around ever few minutes, long drives were out of the question. Being a single mom and not being able to drive is awful thought.. I'm afraid and this is only my opinion, and I could be wrong. I've heard that if you apply for disability and tell them how bad you have it while driving that they take away your drivers license, and I can't imagine how bad that would be for you.
Hopefully if there is anyone on disability on this forum that they might be able to give you some good advice.
My heart goes out to you!
Someone cares about your sleepless nights
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mackjergens
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just curious, I have read several on message board that have applied and gotten disablity for rls. But do you really get enough money thru disablity to live a decent life??? and when you do that does that not actually lable your for the rest of your life? I am just curious as to how well this really works for someone. I know I have friend that applied for disablity for her diabeties, as it now has affected her eye sight and other physical problems and she said she barely gets enough each month to pay for her meds.
I have not worked in several yrs now, and when I did work my rls is usally at night, so I had very little rls during the work day to deal with, but on some days it was difficult to stay seated at my desk for long periods of time. I remember going to the restroom alot. just to be able to walk a little. Also sitting at desk and jiggling my legs under my desk.
honestly I cant imagine having rls 24/7 . Not for sure I could handle it!!
I have not worked in several yrs now, and when I did work my rls is usally at night, so I had very little rls during the work day to deal with, but on some days it was difficult to stay seated at my desk for long periods of time. I remember going to the restroom alot. just to be able to walk a little. Also sitting at desk and jiggling my legs under my desk.
honestly I cant imagine having rls 24/7 . Not for sure I could handle it!!
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SquirmingSusan
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Hi Kelli. Welcome to the forum. Please don't even dream of applying for disability until you've seen a good doctor who will work with you on your treatment. Requip and Mirapex are only 2 of many, many effective medication options for RLS. With some trial and error, and a doctor who is willing to prescribe what works for you, you'll get this under control.
You may wish to go to the "New to RLS" part of the message board and start reading the sticky posts at the top of the section. There is a lot of information about treatment in there, including links to the "Mayo Clinic Algorithm for the Management of RLS."
Apparently people can survive on disability, but it's not easy. You can also apply for medical assistance, which will pay for meds, and some other programs. It's really best if you can stay working, though, for quality of life issues. And it's just not worth going through that process if you haven't even tried most of the meds available for RLS.
You may wish to go to the "New to RLS" part of the message board and start reading the sticky posts at the top of the section. There is a lot of information about treatment in there, including links to the "Mayo Clinic Algorithm for the Management of RLS."
Apparently people can survive on disability, but it's not easy. You can also apply for medical assistance, which will pay for meds, and some other programs. It's really best if you can stay working, though, for quality of life issues. And it's just not worth going through that process if you haven't even tried most of the meds available for RLS.
Susan
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ViewsAskew
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Reading it, you said Requip nor Mirapex is working any more. Have you heard of augmentation? You can read about it here.
It may be making the RLS much worse than is really is and stopping the meds (if you are still on one of them) may reduce it. If you've stopped them and it's still bad, definitely you need a doctor who will work with you and drugs that may help you. There are at least 30 options, if not more, so it's likely something will help...finding it takes trial and error and a great doc.
So, the great doc comes first. If you have one, excellent. If not, finding one is the first task. Disability may be required, but my guess is that you have options before you need to go there.
Welcome.
It may be making the RLS much worse than is really is and stopping the meds (if you are still on one of them) may reduce it. If you've stopped them and it's still bad, definitely you need a doctor who will work with you and drugs that may help you. There are at least 30 options, if not more, so it's likely something will help...finding it takes trial and error and a great doc.
So, the great doc comes first. If you have one, excellent. If not, finding one is the first task. Disability may be required, but my guess is that you have options before you need to go there.
Welcome.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Krae,
On driving and RLS, I remember when I was still working, I had a job where I had to stand up all day, and on the way home in the car, there was a place in the road I had to hold down the brakes until cars cleared to make a left, and my leg would be shaking all over the place...I was afraid I'd have an accident.
On disability and RLS, I am on disability, but did not get it for RLS, altho it was listed as one of four things wrong with myself. All of my illnesses directly or indirectly came from a car wreck, including the RLS. I got disability for mental stuff, where I cannot concentrate and that sort of thing. But I suppose it's my back injury from that stooopid wreck years and years ago that is the hardest for ME to deal with and has led to everything else falling apart in my life as I've gotten older. The gov worked off the mental illness category, tho.
There was indeed another lady on this here forum who DID get it for RLS, she also had a few other things on her list, but she had to go all the way to the court level to get it. Her mind was gone like mine is. Delightful person, Kimberly I think her name was, and the post was entitled, "Social Security Disability," I believe, and it was in about July 2007, according to my poorly kept records. I don't know if she began the post, but Lynne was in the middle of it somewhere.
As for medication and RLS, I agree with the other posters, get thee a different bunch of medicines going, and you'll be able to tolerate your RLS a whole lot better. If you have other conditions related to your RLS, then start seeing physicians specifically for those problems, too, in order to establish a record, in case your RLS indeed one day puts you in a position of needing disability.
GG
On driving and RLS, I remember when I was still working, I had a job where I had to stand up all day, and on the way home in the car, there was a place in the road I had to hold down the brakes until cars cleared to make a left, and my leg would be shaking all over the place...I was afraid I'd have an accident.
On disability and RLS, I am on disability, but did not get it for RLS, altho it was listed as one of four things wrong with myself. All of my illnesses directly or indirectly came from a car wreck, including the RLS. I got disability for mental stuff, where I cannot concentrate and that sort of thing. But I suppose it's my back injury from that stooopid wreck years and years ago that is the hardest for ME to deal with and has led to everything else falling apart in my life as I've gotten older. The gov worked off the mental illness category, tho.
There was indeed another lady on this here forum who DID get it for RLS, she also had a few other things on her list, but she had to go all the way to the court level to get it. Her mind was gone like mine is. Delightful person, Kimberly I think her name was, and the post was entitled, "Social Security Disability," I believe, and it was in about July 2007, according to my poorly kept records. I don't know if she began the post, but Lynne was in the middle of it somewhere.
As for medication and RLS, I agree with the other posters, get thee a different bunch of medicines going, and you'll be able to tolerate your RLS a whole lot better. If you have other conditions related to your RLS, then start seeing physicians specifically for those problems, too, in order to establish a record, in case your RLS indeed one day puts you in a position of needing disability.
GG
"It's not how old you are; it's how awful you feel."
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Jitterlegs
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I have RLS 24/7. Driving really never seemed to bother me too much unit I started taking medications to TREAT rls. I now experience leg pain and primariliy in my right leg. Often it gets so bad I have to take my foot off the accelerator and rub my leg--not so easy in city driving. Otherwise, I just seem to fidget a lot when I drive/ride. I believe I have gotten so used to having RLS (I now realize I have had it since I was a young child) that I have just learned to live with it. I have to constantly bounce my legs when sitting--and I have a desk job for the most part. Luckily it is easy for me to get up and walk around. I have a really hard time watching tv or a movie. I am just waiting for the day that all sensations are gone and I can relax and sleep--and MAYBE even concentrate better!!!
I guess I don't have any help with driving and RLS, just wanted to let you know you aren't alone. I would keep searching for a medication that works. It has been a battle for me and I am still trying and HOPING! I have been through mirapex, requip, neurontin, lyrica and now on codeine--which so far has done nothing!
I guess I don't have any help with driving and RLS, just wanted to let you know you aren't alone. I would keep searching for a medication that works. It has been a battle for me and I am still trying and HOPING! I have been through mirapex, requip, neurontin, lyrica and now on codeine--which so far has done nothing!
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woodsie357
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Jitterlegs
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Yes, Woodsie, cruise control is definitely helpful and maybe it is an option for Krae? There are many times I can't wait until I can put it on and rub my legs, but when you are in the city, cruise control isn't much of an option. I know for me, even tapping my toes inside my shoes can sometimes be enought to help, but the foot in the accelerator could be a bit challenging.
Hi Woodsie,
I assume you were talking about ME putting the car in park when at an intersection and holding down the brakes. I tried that, but the wait was just short enough that I spent the whole time getting in and out of park! I was just telling her the example to let her know I had the same problem. There are instances where you have to put on the brakes just for a few seconds, and that's all it took for my legs to go. I don't work anymore now, so I don't have to take that particular route, and also don't have to stand on cement floors all day anymore either. But at the drive-thru bank line, I do put it in park, and also at intersections with a light. That spot I had to brake, there was no light, you had to hurry and go when you had a break in the oncoming traffic. Anyhow, driving can indeed be hazardous for people with RLS.
Jitter,
I'd like to hear more about your codeine situation, which you said has not worked for you yet. I take 30mg three times a day, that does it. But I also don't have to work anymore. Perhaps a bigger dose would help? Or maybe another codeine-type pill would work, there's a bunch. I'd keep trying with that one, is what I'm suggesting. Also, not trying to sing to the choir, but I assume you're not taking anything with an antihistimine in it, like Tylenol PM or anything? Benadryl type stuff always makes RLS worse, and there's even SOME vitamins that set it off for me, altho I'm still keeping track of that idea.
GG
I assume you were talking about ME putting the car in park when at an intersection and holding down the brakes. I tried that, but the wait was just short enough that I spent the whole time getting in and out of park! I was just telling her the example to let her know I had the same problem. There are instances where you have to put on the brakes just for a few seconds, and that's all it took for my legs to go. I don't work anymore now, so I don't have to take that particular route, and also don't have to stand on cement floors all day anymore either. But at the drive-thru bank line, I do put it in park, and also at intersections with a light. That spot I had to brake, there was no light, you had to hurry and go when you had a break in the oncoming traffic. Anyhow, driving can indeed be hazardous for people with RLS.
Jitter,
I'd like to hear more about your codeine situation, which you said has not worked for you yet. I take 30mg three times a day, that does it. But I also don't have to work anymore. Perhaps a bigger dose would help? Or maybe another codeine-type pill would work, there's a bunch. I'd keep trying with that one, is what I'm suggesting. Also, not trying to sing to the choir, but I assume you're not taking anything with an antihistimine in it, like Tylenol PM or anything? Benadryl type stuff always makes RLS worse, and there's even SOME vitamins that set it off for me, altho I'm still keeping track of that idea.
GG
"It's not how old you are; it's how awful you feel."
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Jitterlegs
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Hi GG. I just started the codeine--well a few weeks ago, anyway. I seem to be very sensitive to medications, so I assume that is why my dr. started me on just 7.5mg at night. I didn't even know I took anything. Then the second increase, I took 15mg and I was dizzy. I thought, oh great, here we go, but the second night, it was nothing. So, now I am taking 22.5mg and so far, the same thing, nothing. It doesn't even make me tired. I take it about 9 and don't go to bed until 10:30. My rx says to go up to 30mg, so I will see if that does anything. I am supposed to only increase every week. Do you get tired from taking it during the day? My dr. wants me to start taking it in the morning too as I have RLS 24/7 as I assume you do as well. No, I don't take anything else at night, but I have used benedryl before to fall asleep, and it helped me-didn't seem to make RLS worse either.
Driving & RLS
Ya the problem is I live in a big city so cruise really isn't an option for me. Just moved so have to find new better dr than the last. In Nebraska where I lived they only suggested mirapex or requip. I was also taking ambien cr at night. Always wanted to try taking 2 of them. If anyone lives in Denver Colorado do you know of any good drs that deal with RLS and know what the hell there talking about. I'm to the point I would love to cut my legs off!!!! 
It's very frustrating to try and drive anywhere with my 3 yr old or even get more than 3 hrs of sleep at night and get up with her every day. Please give me some more advice I'm desperate!!!! 
It's very frustrating to try and drive anywhere with my 3 yr old or even get more than 3 hrs of sleep at night and get up with her every day. Please give me some more advice I'm desperate!!!! Kelli Rae
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ViewsAskew
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krae, one of our members is in Colorado, possibly Denver (seems she's written this); not sure how happy she is with her doctor, though. Hopefully she'll read this and comment. She doesn't stop by all that often, though, so I hope it's sooner rather than later. Here is a link to her profile. You could try to email her. Her spam filter might get in the way. Or you could try a PM.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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woodsie357
- Posts: 147
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I can totally relate with you Krae, I also called my Dr and asked if I could take 2 ambiens because 1 didn't do anything. And I have a 2 year old. Before I moved I used to take her to the YMCA, they do free babysitting with membership, as long as you're in the building. I took her there because I couldn't give her enough attention due to lack of sleep. I also wanted to cut my legs off, and mentioned it to all my Doctors. Other then thinking I was crazy it didn't help. I looked up leg amputation and rls, I ran into a case study about a german guy that was missing both legs and had rls ghost sensations, and couldn't get up and walk around to make it better. How sad would that be. I've never been to colorado =( so I can't suggest anyone. I just wanted to let you know I feel your pain.
Someone cares about your sleepless nights
Jitterlegs wrote:My rx says to go up to 30mg, so I will see if that does anything. I am supposed to only increase every week. Do you get tired from taking it during the day? My dr. wants me to start taking it in the morning too as I have RLS 24/7 as I assume you do as well.
Hey Jitter,
Yes, I got severe RLS 24/7. First time I took the codeine pill, I hadn't slept well in six months, so I took two right off the bat. I took it around 6pm after dinner on a Friday, and I was out like a light, slept until around 10am. I'll never forget how great it felt to get a good night's sleep AND no restless legs when I woke up. A lot of people here can remember distinctly the first time a medicine helped them.
And yes, it always makes me sleepy. When I worked, I could drive with it, but work was around machinery, so I had to wait until I got home to take it... always after dinner, and eventually I could keep myself awake until around 9 or 10pm, which I do to this day. Since you work, and your doc wants you to take a second dose in the morning, I think you'll have the morning adrenaline going and work to keep you busy, so you won't notice the sleepiness. It's when you're good and tired that it will make you sleepy. But I like the feeling, I think of it as relaxed.
When you reach 30mg in the morning and 30 in the evening, you should notice a difference in your legs. I also wanted to "shoot my legs," and a lot of people here mention that sort of thing about RLS, too. I hope you will keep with the codeine, give it a few weeks. Also, the benadryl, that can indeed make the RLS worse, even tho you didn't notice it. But at 30mg of codeine in the evening, you shouldn't need sleep aides. And your doc is going slow so you won't notice those side effects so much.
GG