I am new to the board - signed up a week ago but finally got the confirmation to log on.
I have had RLS since I was a kid - just like most of you it went undiagnosed until about 7 years ago at 31. I was always told it was growing pains or that I was just restless.
I have been taking Klonapin for 7 years .5 to 2.0 mg at night. When I first started taking it one was enough I am now up to 4 and get no relief.
I have no problems falling asleep but wake about an hour later only to be miserable throughout the night this has been going on for the last month. I have not slept more than 4 hours in one night for that long.
I have an appointment with my GP on Monday. He is the Dr. that diagnosed my RLS originally. I want to make sure I am completely prepared when going in to see him. I have reprints of a ton of stuff along with a couple books that were recommended on this board. However I worry about going on Requip and having more problems in the future. I have discussed Requip with him in the last year and he said he wasn't "sold" on it yet and since the Klonapin was working he wanted to stay with that. But like I said things have gone from manigable to unberable in the last few months. Not sure what triggered it - if anything.
I have always had "all-day" RLS - I sit at a desk most of my day and have to frequently get up to walk around or shake my legs so bad I think I am shaking the walls of my office. But something I haven't heard much about is the pain - the real pain. I get the twitch - itchy - creepy crawly - ants in my legs "pain" but I also have real pain like I have just run a marathon. Is this from my constant leg movement or is it something unrelated?
I am so far beyond exhausted that I am falling asleep at very inappropriate times. Any suggestions on how to get throught the next few days until my appointment - I honestly feel like I just can't cope. And of course no one understands I come home and all I want to do is sleep - my boyfriend thinks I am sleeping my life away - what he doesn't understand is that when he is sound asleep all night I am up shaking rubbing moving just so I don't crawl out of my own skin.
I appreciate any help or information from anyone that I can use on Monday.
Thanks!
Help - new to board
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
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hchankin, prolly my bad in terms of your registration 
. We get up to 50-75 spam registrations a day (it varies), so the mods are pretty vigilant. When someone registers with an email that has a domain name that I am unfamiliar with, I check the domain name. Yours showed up as invalid. My bad, because I didn't check it WITH the www, only without. These days, most addresses work without the www, but every once in a while one is not registered that way. Not your fault, of course! But, I assumed it was spam and deleted it. Our fearless leaders at the Foundation saved the day when you emailed them.
Have you had a sleep study? I'd recommend one to see if PLMD is bothering you along with the RLS. It will also help your boyfriend and doc to see just how bad it really is.
Per Requip, I still think it's worth a try - that and Mirapex - for the beginning of drug treatment. There are almost no drugs that work forever. So, if you get two weeks, two months, or two years, that's more than you had without it. Yeah, you have to switch, but chances are you will switch again anyway.
Add to that. . .finding the right combo can be difficult and time consuming. You might as well just start at the beginning and find out. The DAs work with about 80% of those, so it's got the highest chance of being effective.
All that said, it won't work alone if you need 24/7 help AND you have pain. So, you'll probably need to take it at night and something else during the day anyway. Tramadol works well, but there are some risks if your dose gets too high, so just ensure you don't take more than you are prescribed. You also may find that a true opioid helps with both the RLS and the pain.
Per getting by until you see the doc, there is nothing I know of that you can do. Massage helps, warm baths, sometimes a B complex, magnesium, calcium, etc. helps. . .and so on. But, there is no magic bullet and when you get this tired, it's just plain hard.
You might be able to call your doc and ask if he/she would consider writing a short term script for Provigil (modafinil). Explain the circumstances. You can't be falling asleep while driving, say, and be safe. Nor can you keep your job if you fall asleep in a meeting!
Welcome - finally - to the board.
Oh, last thing. You probably know this, but be careful stopping the Klonopin. You have taken it a long time and some people have difficulties stopping it. Some don't. Hopefully you won't. . .just think through how you will stop it before stopping cold turkey.
. We get up to 50-75 spam registrations a day (it varies), so the mods are pretty vigilant. When someone registers with an email that has a domain name that I am unfamiliar with, I check the domain name. Yours showed up as invalid. My bad, because I didn't check it WITH the www, only without. These days, most addresses work without the www, but every once in a while one is not registered that way. Not your fault, of course! But, I assumed it was spam and deleted it. Our fearless leaders at the Foundation saved the day when you emailed them.
Have you had a sleep study? I'd recommend one to see if PLMD is bothering you along with the RLS. It will also help your boyfriend and doc to see just how bad it really is.
Per Requip, I still think it's worth a try - that and Mirapex - for the beginning of drug treatment. There are almost no drugs that work forever. So, if you get two weeks, two months, or two years, that's more than you had without it. Yeah, you have to switch, but chances are you will switch again anyway.
Add to that. . .finding the right combo can be difficult and time consuming. You might as well just start at the beginning and find out. The DAs work with about 80% of those, so it's got the highest chance of being effective.
All that said, it won't work alone if you need 24/7 help AND you have pain. So, you'll probably need to take it at night and something else during the day anyway. Tramadol works well, but there are some risks if your dose gets too high, so just ensure you don't take more than you are prescribed. You also may find that a true opioid helps with both the RLS and the pain.
Per getting by until you see the doc, there is nothing I know of that you can do. Massage helps, warm baths, sometimes a B complex, magnesium, calcium, etc. helps. . .and so on. But, there is no magic bullet and when you get this tired, it's just plain hard.
You might be able to call your doc and ask if he/she would consider writing a short term script for Provigil (modafinil). Explain the circumstances. You can't be falling asleep while driving, say, and be safe. Nor can you keep your job if you fall asleep in a meeting!
Welcome - finally - to the board.
Oh, last thing. You probably know this, but be careful stopping the Klonopin. You have taken it a long time and some people have difficulties stopping it. Some don't. Hopefully you won't. . .just think through how you will stop it before stopping cold turkey.
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.
Thank you so much for your reply. I was glad I finally thought to contact the organization to see if they could help glad they did.
Thank you also for your advise on the meds, supplements (which i have tried with no help) and the thought on stoping the Klonopin...I have heard that there can be withdrawl symptoms - which hopefully I won't have.
Will the Modafinil interfere with sleeping? Not that I am having much luck there but I keep hoping that tonight will be the night my body will finally give in
Any thoughts on something I can take to help me sleep that won't interfere with my RLS?
Thank God for this board - I am finding it so helpful - like not taking Benedryl - which I do for allergies right along with Zyrtec which i also found out is bad for RLS. I feel like I am so well informed - I am just hoping that all this information brings good results on Monday.
Thank you again!
Thank you also for your advise on the meds, supplements (which i have tried with no help) and the thought on stoping the Klonopin...I have heard that there can be withdrawl symptoms - which hopefully I won't have.
Will the Modafinil interfere with sleeping? Not that I am having much luck there but I keep hoping that tonight will be the night my body will finally give in
Any thoughts on something I can take to help me sleep that won't interfere with my RLS?
Thank God for this board - I am finding it so helpful - like not taking Benedryl - which I do for allergies right along with Zyrtec which i also found out is bad for RLS. I feel like I am so well informed - I am just hoping that all this information brings good results on Monday.
Thank you again!
hchankin,
welcome to the board, this board has helped me in so many ways. I brought tons of this boards posts to my doctor so she could see what other people were doing to control their RLS (or trying to control). She listened and didn't have a problem prescribing what I needed. I like tramodol during the day, it works really well. It wears off to soon, it didn't in the beginning but it does now. Yes get used to trying different meds until you find something that works, I hate to think it will stop working but that's what I've been reading.
Anyhow last night I was at my wits end, I took my MS contin, a tramodol, and ibuprophen and still lots of pain, I tried ice and it worked pretty good, I have to say I was happy about that.
I to have the pain you are referring to, mine is in my calves mostly, sort of like a throbbing almost charlie horse type pain, I don't like it. I also have Fibromyalgia so its hard to tell when one syndrome stops and the other begins. Do you have pain elsewhere in your body?
anyhow I think you are on the right track with your doctor by bringing in information. Show him/her what others are doing. Its my opinion that RLS isn't that well known by most docs. if you aren't satisified that this doctor is working in your best interest, then find a new one, I know the RLS.org site as a doctor search function.
welcome to the board, this board has helped me in so many ways. I brought tons of this boards posts to my doctor so she could see what other people were doing to control their RLS (or trying to control). She listened and didn't have a problem prescribing what I needed. I like tramodol during the day, it works really well. It wears off to soon, it didn't in the beginning but it does now. Yes get used to trying different meds until you find something that works, I hate to think it will stop working but that's what I've been reading.
Anyhow last night I was at my wits end, I took my MS contin, a tramodol, and ibuprophen and still lots of pain, I tried ice and it worked pretty good, I have to say I was happy about that.
I to have the pain you are referring to, mine is in my calves mostly, sort of like a throbbing almost charlie horse type pain, I don't like it. I also have Fibromyalgia so its hard to tell when one syndrome stops and the other begins. Do you have pain elsewhere in your body?
anyhow I think you are on the right track with your doctor by bringing in information. Show him/her what others are doing. Its my opinion that RLS isn't that well known by most docs. if you aren't satisified that this doctor is working in your best interest, then find a new one, I know the RLS.org site as a doctor search function.
Thank you for your welcome and your feedback. My main pain is in my calves and ankles if I am not crawling out of my skin with RLS my legs ache.
I am worried about what will happen on Monday. I absolutly LOVE my Dr. I have been seeing him for about 18 years now so he knows me very well. However he gives out pain meds very easily so I think he will not help me with that. I hate to even think about giving him up as my Dr. but I am at my wit's end and will do anything it takes to find the right medication or group of medications that works for me.
I am at work right now and feel like I am just not going to make it another 2 hours until I can go home I am so tired I feel like a walking zombie on top of that my legs are crazy. Does anyone think that RLS gets worse as you get more and more tired? All I want to do is go home and try to sleep.
I am worried about what will happen on Monday. I absolutly LOVE my Dr. I have been seeing him for about 18 years now so he knows me very well. However he gives out pain meds very easily so I think he will not help me with that. I hate to even think about giving him up as my Dr. but I am at my wit's end and will do anything it takes to find the right medication or group of medications that works for me.
I am at work right now and feel like I am just not going to make it another 2 hours until I can go home I am so tired I feel like a walking zombie on top of that my legs are crazy. Does anyone think that RLS gets worse as you get more and more tired? All I want to do is go home and try to sleep.
so ask to go home, then try to sleep. maybe if you fall asleep at your desk they will get the clue.
If you've never had a problem with pain meds before, and you bring him in all the posts from this site, or even the algorhythm thingy then how can he argue with reason?
Do your eyes hurt? When I get super tired from lack of sleep my eyes hurt, just wondering.
BTW, tramodol isn't a narcotic, so he might be willing to let you try that, and it does come in an extended release form call ULTRAM ER, my insurance didn't cover it but yours might. They did cover the regular tramodol however.
If you've never had a problem with pain meds before, and you bring him in all the posts from this site, or even the algorhythm thingy then how can he argue with reason?
Do your eyes hurt? When I get super tired from lack of sleep my eyes hurt, just wondering.
BTW, tramodol isn't a narcotic, so he might be willing to let you try that, and it does come in an extended release form call ULTRAM ER, my insurance didn't cover it but yours might. They did cover the regular tramodol however.
I hope I can sleep when I get home....yes my eyes burn so bad that when I do close them they start to water - I guess the least of my problems.
I have never had a problem with drug abuse - but I know that at one time I was having bad headaches and I suggested just giving me some pain meds to help and he said that wasn't an option. I guess I won't know what he will say until Monday. I have printed everything out about drug therapy and have lots of notes- I will keep my fingers crossed.
Does Tramadol make you sleepy or hyper? I do take Vicodin for female issues but I can't imagine it helping me sleep because it winds me up.
How come insurance never covers the drugs we need them to cover????
I have never had a problem with drug abuse - but I know that at one time I was having bad headaches and I suggested just giving me some pain meds to help and he said that wasn't an option. I guess I won't know what he will say until Monday. I have printed everything out about drug therapy and have lots of notes- I will keep my fingers crossed.
Does Tramadol make you sleepy or hyper? I do take Vicodin for female issues but I can't imagine it helping me sleep because it winds me up.
How come insurance never covers the drugs we need them to cover????
Tramodol doesn't make me hyper or sleepy, that I can tell. A bit euphoric feeling for some reason, but that was in the beginning, that has gone away since.
Vicodin and MS Contin make me hyper too, that is so funny. I emailed my doc just yesterday telling her the MS Contin was good for the pain, but wow was it difficult to fall asleep, I just wanted to stay awake and watch tv all night. One night I took it and my hubby went to bed around 10:00ish and at 5:30am when he woke up I was still sitting on the couch with the TV on, I had dosed off sometime during the night, but I know I was up most of the night because I remember. He laughed because I was asleep in a prone position with the remote in my hand.
My experience with bad doctors (I've had just one) but stick up for yourself, don't get to emotional or they will diagnose you with anxiety because you are tired and just want relief (OMG I hate that doc) and for some reason your crying means your depressed or have anxiety WHATEVER!!!!! but stick up for yourself, if he says no, point out something that says its good to try, don't be afraid to start at the bottom of the med list for RLS, I wouldn't go in off the bat asking for Methadone, he might think you have an issue. Sometimes all you need is some Carbadopa/levadopa and when that doesn't work then you have anxiety (oh sorry, I just can't seem to get past that). Well ok I say more, when I told him the C/L made me shakey he said that was odd and an unheard of side effect. I found on some C/L information website that if the C/L levels aren't just right, the person will be shakey, he didn't much like me sending him that information. He wasn't my doc long after that episode, and to this day I want to send him tons of information from this website, you know to do a service to his future patients, and maybe a little TOLD YA SO, but I think I deserve it.
Vicodin and MS Contin make me hyper too, that is so funny. I emailed my doc just yesterday telling her the MS Contin was good for the pain, but wow was it difficult to fall asleep, I just wanted to stay awake and watch tv all night. One night I took it and my hubby went to bed around 10:00ish and at 5:30am when he woke up I was still sitting on the couch with the TV on, I had dosed off sometime during the night, but I know I was up most of the night because I remember. He laughed because I was asleep in a prone position with the remote in my hand.
My experience with bad doctors (I've had just one) but stick up for yourself, don't get to emotional or they will diagnose you with anxiety because you are tired and just want relief (OMG I hate that doc) and for some reason your crying means your depressed or have anxiety WHATEVER!!!!! but stick up for yourself, if he says no, point out something that says its good to try, don't be afraid to start at the bottom of the med list for RLS, I wouldn't go in off the bat asking for Methadone, he might think you have an issue. Sometimes all you need is some Carbadopa/levadopa and when that doesn't work then you have anxiety (oh sorry, I just can't seem to get past that). Well ok I say more, when I told him the C/L made me shakey he said that was odd and an unheard of side effect. I found on some C/L information website that if the C/L levels aren't just right, the person will be shakey, he didn't much like me sending him that information. He wasn't my doc long after that episode, and to this day I want to send him tons of information from this website, you know to do a service to his future patients, and maybe a little TOLD YA SO, but I think I deserve it.
thanks you made me laugh - so true when you know more about something than a Dr. and then find proof - hopefully he sees the info now and thinks maybe he should have listened to you!
That is what I would like to tell my teachers from school and my Grandmother (RIP)- they always told me I had ants in my pants and couldn't sit still - It wasn't ants in my pants it was ants in my legs
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ViewsAskew
- Moderator
- Posts: 16584
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I haven't taken the modafinil, but as I understand it, it does not interfere with sleep if you take it early enough. It also does not make you jittery - just awake. They use it with narcoleptics. The worst case it see if he will call in a script for, say, ten. Try a half of one or something early and see what happens. It it bothers you, then ... on to something new.
Tramadol works well for some people, not for others. Many people says it keeps them awake, though, so it's not good for nightie-nights. I take methadone (if he won't give you other pain meds, he definitely won't give you that!) and it is totally neutral -doesn't wake me, doesn't put me to sleep, but I go to sleep fine after taking it. Not sure how it works in others - drugs are sooooo weird; what works for one of us in one way is sure to work differently for the next person.
Tramadol works well for some people, not for others. Many people says it keeps them awake, though, so it's not good for nightie-nights. I take methadone (if he won't give you other pain meds, he definitely won't give you that!) and it is totally neutral -doesn't wake me, doesn't put me to sleep, but I go to sleep fine after taking it. Not sure how it works in others - drugs are sooooo weird; what works for one of us in one way is sure to work differently for the next person.
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.
Well once again I have been up most of the night slept from 9:30 - 10:30
12:00 - 1:30 and 3:00 - 4:00. I have actually decided I am not going into work today. Not only for the saftey of myself but for others. I honestly don't think driving this morning would be the best idea. I am one of those people that always makes it to work even if it means I won't make it all day - I never call in. So this just shows the extreme this has gone to. I can't wait to see my Dr. on Monday. I am hoping that I can at least get some rest over the weekend so I don't go in like a babbling idiot.
I want to thank everyone that posts to this board. You have all been a huge help. I have read almost everything on this board - most of it this morning. So many of you have it so much worse than me - and I feel for you. I pray that someone come up with something to help us all. Until then this board is better than any friend, psychiatrist, etc!
Thanks again
Heidi
12:00 - 1:30 and 3:00 - 4:00. I have actually decided I am not going into work today. Not only for the saftey of myself but for others. I honestly don't think driving this morning would be the best idea. I am one of those people that always makes it to work even if it means I won't make it all day - I never call in. So this just shows the extreme this has gone to. I can't wait to see my Dr. on Monday. I am hoping that I can at least get some rest over the weekend so I don't go in like a babbling idiot.
I want to thank everyone that posts to this board. You have all been a huge help. I have read almost everything on this board - most of it this morning. So many of you have it so much worse than me - and I feel for you. I pray that someone come up with something to help us all. Until then this board is better than any friend, psychiatrist, etc!
Thanks again
Heidi
Hi Heidi,
Welcome to the board. I could have deleted you too! Sorry, and I'm so glad you contacted the foundation to get here.
I wanted to tell you that I don't have fibro, but I have extreme pain with my RLS. As you have read here, many others have pain as well. Our community experts (docs) flip flop some on the issue. One year it's in the symptoms list, the next they, they ignore it. Personal docs are taking big risks, based on government pressure, not for medical reasons.....unless they are just a no pain drug kinda of doc.....ewwwwwwww!
However, I think they are coming around to see that pain can very well be apart of progressive, higher levels of RLS. Ex: as a kid I had growing pains, but only at night, painful. All my life I have had bouts or attack where everything anyone claims as their own RLS symptoms, seems to attack all at once. I also have a daily 24/7 3 spots that are always on, 2 on my head, one on the right leg.
After 1995, it's gotten progressively severe, sometimes by the month, I broke my right leg that year. Life was never going to be the same again.
Point is,
It does take time and a good firm relationship, with most docs before they are willing to give out pain meds...Our DEA makes sure that they do it sparingly. Sad, but true.
I do believe that if I had been able to get some pain relief and a low dose of dopamine, I could have slowed the progression of mine. Like so many I had to really force the issue of pain control.
Yes, many take pain meds because they work well for them with the RLS, and they may be without pain. So asking that pain is addressed should not be out of line. I think it's becoming common among us to fear new docs, when they review what we have tried, taken for a while, and the volume of medications we have had.......they often think the worst. We often feel like we come off as pill seekers, when we simply want relief and a bit of control of our lives.
When or if, you have the chance to get some pain relief, do so the right way. Ask how long you should see a difference ( good about every med., some need time to build up). If it's not right, you'll know soon enough, and call the doc.
Keep your pain meds locked up. You must be able to keep yourself safe and others out of your meds.
Keep a good count and take it by the directions only, avoid self medicating.
Stand strong, explain in a clear short statement what your dealing with.
I normally take no more than 3 issues. And I tell the doc, this is what I would like to focus on today.
It gives them a direction, that is the bigger picture.
Ex: I might go in and say " we need to take about my sleep, pain is an issue, my mental alertness during the day."
The doc should start heading in that direction, if he seems not to get it, stop and redirect him. "wait how does that tied into my sleeping?"
You really have to make him or her be your partner in this treatment, the doc must listen, but make it easy for they. Stand your ground when they have it wrong. Don't get upset or crazy, unless you have to, LOL.
If you have a spouse, friend, or partner that lives with you, take them as backup. My husband provided a better look of my life and how it effects us, and me. He gave his own version of the same I had been telling all along. He was able to ask his own questions. He got to listen to what the doc said to me, and how I was spoken to......that is a great thing for you.
Be honest when something is not working, and don't wait til the next appt. to say anything.
Remember, You sign the front of the check.
Heidi, you get some sleep when ever you can. Be careful, and make the doc help you with the daytime fatigue.
Glad your here, only wish it were for just fun.
Lynne
PS, this board saved me many times. You've have found the best supporters, most caring bunch of angels. They will make you laugh, hug you when your overwhelmed. And we learn so much from each others.
You've likely love it here.......I do.
Welcome to the board. I could have deleted you too!
Sorry, and I'm so glad you contacted the foundation to get here.
I wanted to tell you that I don't have fibro, but I have extreme pain with my RLS. As you have read here, many others have pain as well. Our community experts (docs) flip flop some on the issue. One year it's in the symptoms list, the next they, they ignore it. Personal docs are taking big risks, based on government pressure, not for medical reasons.....unless they are just a no pain drug kinda of doc.....ewwwwwwww!
However, I think they are coming around to see that pain can very well be apart of progressive, higher levels of RLS. Ex: as a kid I had growing pains, but only at night, painful. All my life I have had bouts or attack where everything anyone claims as their own RLS symptoms, seems to attack all at once. I also have a daily 24/7 3 spots that are always on, 2 on my head, one on the right leg.
After 1995, it's gotten progressively severe, sometimes by the month, I broke my right leg that year. Life was never going to be the same again.
Point is,
It does take time and a good firm relationship, with most docs before they are willing to give out pain meds...Our DEA makes sure that they do it sparingly. Sad, but true.
I do believe that if I had been able to get some pain relief and a low dose of dopamine, I could have slowed the progression of mine. Like so many I had to really force the issue of pain control.
Yes, many take pain meds because they work well for them with the RLS, and they may be without pain. So asking that pain is addressed should not be out of line. I think it's becoming common among us to fear new docs, when they review what we have tried, taken for a while, and the volume of medications we have had.......they often think the worst. We often feel like we come off as pill seekers, when we simply want relief and a bit of control of our lives.
When or if, you have the chance to get some pain relief, do so the right way. Ask how long you should see a difference ( good about every med., some need time to build up). If it's not right, you'll know soon enough, and call the doc.
Keep your pain meds locked up. You must be able to keep yourself safe and others out of your meds.
Keep a good count and take it by the directions only, avoid self medicating.
Stand strong, explain in a clear short statement what your dealing with.
I normally take no more than 3 issues. And I tell the doc, this is what I would like to focus on today.
It gives them a direction, that is the bigger picture.
Ex: I might go in and say " we need to take about my sleep, pain is an issue, my mental alertness during the day."
The doc should start heading in that direction, if he seems not to get it, stop and redirect him. "wait how does that tied into my sleeping?"
You really have to make him or her be your partner in this treatment, the doc must listen, but make it easy for they. Stand your ground when they have it wrong. Don't get upset or crazy, unless you have to, LOL.
If you have a spouse, friend, or partner that lives with you, take them as backup. My husband provided a better look of my life and how it effects us, and me. He gave his own version of the same I had been telling all along. He was able to ask his own questions. He got to listen to what the doc said to me, and how I was spoken to......that is a great thing for you.
Be honest when something is not working, and don't wait til the next appt. to say anything.
Remember, You sign the front of the check.
Heidi, you get some sleep when ever you can. Be careful, and make the doc help you with the daytime fatigue.
Glad your here, only wish it were for just fun.
Lynne
PS, this board saved me many times. You've have found the best supporters, most caring bunch of angels. They will make you laugh, hug you when your overwhelmed. And we learn so much from each others.
You've likely love it here.......I do.
Thank you so much for you kind and helpful words. I got another hours sleep slowly I might be normal in a couple days (as normal as i can be). You mentioned breaking your leg - I broke my ankle in three places 2 years ago one was a spiral fracture that was really bad - went through a year of PT just to be able to walk normal again - could that be an issue? Funny thing is when I think of the times in my life when my RLS has been at it's worse - that is when it didn't bother me at all probably because i lived on Percocet for 6 weeks.
Another thing that I have notice - I have it all day at work - people laugh at my leg movements constantly - I am miserable in a meeting - get me on a plane and i want to jump, but we have a Haley and we ride a lot and obviously I can't shift around like a crazy person on the back - but I NEVER have RLS symptoms when I am on it - do you think it could be the vibration from the bike?
Another thing that I have notice - I have it all day at work - people laugh at my leg movements constantly - I am miserable in a meeting - get me on a plane and i want to jump, but we have a Haley and we ride a lot and obviously I can't shift around like a crazy person on the back - but I NEVER have RLS symptoms when I am on it - do you think it could be the vibration from the bike?
pokerdiva wrote:Tramodol doesn't make me hyper or sleepy, that I can tell. A bit euphoric feeling for some reason, but that was in the beginning, that has gone away since.
Vicodin and MS Contin make me hyper too, that is so funny. I emailed my doc just yesterday telling her the MS Contin was good for the pain, but wow was it difficult to fall asleep, I just wanted to stay awake and watch tv all night. One night I took it and my hubby went to bed around 10:00ish and at 5:30am when he woke up I was still sitting on the couch with the TV on, I had dosed off sometime during the night, but I know I was up most of the night because I remember. He laughed because I was asleep in a prone position with the remote in my hand.
I have no idea why this is not common knowledge, but people need to know Tramadol does bind to opiod receptors (and thus "mmmm yeah" ). It'll work on your fun center just like Vicodin and MS Contin and all that.
But as far as the two latter go, yes they are very good drugs for retreating and "chilling out" as it were.. At the peak of my experience with Vicodin I could stay up for days by redosing ("boosting"). It is very common to experience repeated dozing off and waking back up while the drug is in your system at a level you are not tolerant too. This is called being "on the nod", a suitable name I guess. I think you may find as you get used to your dosage level, the effects you are experiencing will dissapear, just like the euphoria did with the Tramadol once you got used to your dosage.
Hi Heidi, One more story of RLS. Everyone is different when it comes to RLS and I am no different. For me it has been as long as I can remember and I am now 71, so you know I went through many years of sit still, stop rocking the bed etc. I am lucky in that there is no pain but I can kick my legs so hard and beat them and so on. I was also told years ago when I went to the doctor and ask about my legs they just looked at me and I know they were thinking it's all in her head. Back then there was no name for it and no help.
Back in 1985 I went to see a neuro dr and he gave me clonazepam for sleep and that worked for about 2 hrs. He also told me my legs were a bad habit and I would just have to get over it.
Then we got a name for our problem, and that was wonderful because I started finding stuff on the computer, but the doctors didn't want to believe what was printed on the computer.
Then I went to my dr at the time with papers and said it has a name and there is stuff to take to help. He did start me on Parlodel and i stayed on the clonazepam and for the 1st time in my life I was sleeping through the nite. The Rls were gone.
Later after I retired it started back again and my new dr knew about RLS and just put me on paroldel 4 times a day and that worked.
In 2002 I needed back surgery and a laminectomy and my legs went crazy. One day I kicked my leg for 10 hours. I got to the pain dr and my husband always goes with me also, and he gave me neurontin and they stopped that nite.
To make a long story short, I have had 5 back surgeries the last 1 this past june. Over the last few years I have gone to requip and that worked, always staying on the neurontin and clonazpam. Some times I was taking 600mg's of the neu. 5 times a day and 2m'g of clona. But with the requip I started needing more and more and I was up to 6 mg's a day and was having augmenation.
The 1st of this year I went into a terrible time with the RLS and was not sleeping at all and in so much pain from my back. After seeing my dr and cutting the requip back to 3 I was put on maripex together with requip.
Once again my legs were fine and I was able to cut back on the neurontin. So like they have said in the other posts sometimes everything just stops working and always what works for one may not work for the other. But back surgery makes RLS worse. So between the back surgeries and rls I have changed my meds several times and will probably have to again. But what is working for me now is neurontin, maripex and clonazpam. Good luck with you app. and every nurse and dr I see I ask if they know about rls and most never heard of it.
Like you I have found so much help, and everyone is so friendly and nice. And there is always someone who can relate to your problem.
There is also a chat room and on Monday evenings you can find the ppl that post here in the chat rm. I am on the east coast so it's around 9 or 10 at nite.
Good luck and I hope I have brought another side to having rls. Jeannie
Back in 1985 I went to see a neuro dr and he gave me clonazepam for sleep and that worked for about 2 hrs. He also told me my legs were a bad habit and I would just have to get over it.
Then we got a name for our problem, and that was wonderful because I started finding stuff on the computer, but the doctors didn't want to believe what was printed on the computer.
Then I went to my dr at the time with papers and said it has a name and there is stuff to take to help. He did start me on Parlodel and i stayed on the clonazepam and for the 1st time in my life I was sleeping through the nite. The Rls were gone.
Later after I retired it started back again and my new dr knew about RLS and just put me on paroldel 4 times a day and that worked.
In 2002 I needed back surgery and a laminectomy and my legs went crazy. One day I kicked my leg for 10 hours. I got to the pain dr and my husband always goes with me also, and he gave me neurontin and they stopped that nite.
To make a long story short, I have had 5 back surgeries the last 1 this past june. Over the last few years I have gone to requip and that worked, always staying on the neurontin and clonazpam. Some times I was taking 600mg's of the neu. 5 times a day and 2m'g of clona. But with the requip I started needing more and more and I was up to 6 mg's a day and was having augmenation.
The 1st of this year I went into a terrible time with the RLS and was not sleeping at all and in so much pain from my back. After seeing my dr and cutting the requip back to 3 I was put on maripex together with requip.
Once again my legs were fine and I was able to cut back on the neurontin. So like they have said in the other posts sometimes everything just stops working and always what works for one may not work for the other. But back surgery makes RLS worse. So between the back surgeries and rls I have changed my meds several times and will probably have to again. But what is working for me now is neurontin, maripex and clonazpam. Good luck with you app. and every nurse and dr I see I ask if they know about rls and most never heard of it.
Like you I have found so much help, and everyone is so friendly and nice. And there is always someone who can relate to your problem.
There is also a chat room and on Monday evenings you can find the ppl that post here in the chat rm. I am on the east coast so it's around 9 or 10 at nite.
Good luck and I hope I have brought another side to having rls. Jeannie