Rls somtimes or all the time

For everything and anything else not covered in the other RLS sections.
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jrowley
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Rls somtimes or all the time

Post by jrowley »

I see some of you only have rls sometimes or go through episodes of it. Is there anyone out there that has it all the time? And is there anyone that has it 24 hours? Like myself. I have it 24 hours and all the time it's not a matter of today i have rls and tomorrow I don't or I have it this week then I don't for a month. I was under impression that everyone has rls all the time and not periodicaly and unless medicated and when not medicated the rls is back. From what I have read once gotten you never get rid of (unless its secondary rls caused by meds or illness ect..) you only treat symptoms of. My neuro said the same and that is why it is so difficult to find the right med or combination of meds to work as the symptoms are different with everyone. Any imput on this?
Jan :roll: Can't wait to sleep!

ViewsAskew
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Post by ViewsAskew »

Jan, it must be frustrating to have had so little success in treating your RLS to date. In terms of frequency, there are many ways a person can be affected by RLS. becat posted recently that it is characterized by how often you have it - intermittant or daily - and how much time you have it when you have it - just at bedtime, most of the day, all of the day -and how severe it is when you have it.

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=1074

Only a small amount of people have it 24 hours a day. According to Dr Buchfurer, with all of the different meds out there, everyone should be able to find relief with a good doctor and the right med combo.

According to the Mayo Clinic Algorithm everyone with daily RLS should start with the dopamine agonists (DAs). if they don't work, then the next thing to do it to add a drug from the anti-seizure, benzo, or opioid category. If someone tries two or three of the DAs and they don't work or they can't take them, then it's considered refractory and the algorithm says the only option is to try opioids. This algorithm was the first time that many RLS specialists agreed on a course of action to treat RLS. If your doctor is not following this, it's important that you find out why. I don't know the path you've been on; I do know that Depakote is not a first-line RLS drug and that may be why you are having so many problems.

As we talked about in the other thread, with medication most of us have no RLS at all. If we do, it means that the drugs are either not the right drugs, we're not taking them at the optimal times, or in the wrong amounts.

As for me, I had nightly PLMD every night and severely, but only intermittent RLS. It was severe when I got it, but with lifestyle management, I could prevent it most of the time. The drugs I was given for the PLMD gave me daily RLS that started out only in the evenings and progressed to 24/7. With the new drugs, when I do take them on time and in the right dosages, I have no RLS at all. I have no intention of going off of them at the moment to find out how severe it would be if I weren't on them :shock: .

Hope this helps.

Ann

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jrowley
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Post by jrowley »

no no depakote is my fourth drug I started with mirapex didnt work then i went to klonopin worked but couldnt wake up so then it was back to mirapex but a bigger dose didnt work then to neurotin no go then the depakote which doesnt stop the jerk but helps with the pain and my headaches that i have had for 14 years. so she kept me on it and added parcopa which is the same a sinemet its a levodopa/carbidopa mix. So we are way past the individule drug and now are trying a cocktail with me.
Jan :roll: Can't wait to sleep!

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Post by jrowley »

and i forgot to mention my rls was 24/7 most all my life before any drugs
Jan :roll: Can't wait to sleep!

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Post by jrowley »

and i guess i miss spoke myself the previous post i did ask who had it 24/7 and on this post i am asking who has it and have had it all their lives it seems to me that there are really very few and maybe i should be traveling down a different path that maybe rls is not what i have because since i have taken 6 different drugs and nothing seems to work and i have it all the time
Jan :roll: Can't wait to sleep!

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jrowley
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Post by jrowley »

ViewsAskew wrote:As we talked about in the other thread, with medication most of us have no RLS at all. If we do, it means that the drugs are either not the right drugs, we're not taking them at the optimal times, or in the wrong amounts.



So what your saying here is that everyone on here is having trouble with their meds cuz seems to me they have a come and go situation when they are on their meds. Like the rls breaks through their med. I guess im not understanding too much about it. Because I see a lot of ppl talking about how they are up at wee hours of the night because their rls is keeping them up. Are these ppl on meds and its not working or does the med work and they have a perodic breakthrough of the rls?

And see my rls doesnt keep me up nor does it wake me, it wakes my hubby from my jerking but the only thing that wakes on me is my brain however i feel the pain from it all day long and the constant having to move my legs and feet. So if i am that bad is there really a med out there that is going to help because i am not seeing a lot of ppl on here having much problem during the day but they have a huge problem at night. Or is it I have had it so long that i built a intolerance to my rls so that i dont feel it as much even though it there just as often. Im a bit confused about all the stuff I feel like i shouldnt be here because it so different.
Jan :roll: Can't wait to sleep!

colleen
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Post by colleen »

if ti is driving you nutz and the people here can relate and understand that feeling of helplessness than you belong here ,mearily for that reason alone ,and i think your cool too thats another big reason !
im not takin any meds as a matter of fact i didnt even no what this was or that it had a name till 2 days ago ,im not to keen on meds ,im gonna fgo the all natural route first if i have no luck with that than ill hit the pharmacy .but hopfully it wont get to that point ,but my sanity is more important to me than not takin medcine ,ofcorse not haqvin health inn. doesnt help any

becat
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Not so Jan

Post by becat »

Jan,
That's just not so. When people come here and read a post from someone like me, probably on the severe side of this......the last thing I want is for them to try and compare themselves to me. That's just my thoughts.
Comparison is not a good idea for any of us. We share with one another, but truth is we can't feel each others symptoms. I can't really tell you what yours feels like.
We need every level, every kind and form of RLSer around here. You'll find those of us that are struggling with meds, docs, or the right doses and times to take it, because many people just want to figure it out. I have a good treatment path that works for the most part. I stick around because I have a passion for RLS to be known, treated well, and those that suffer know they don't live in isloation while they are here. Many people get answers here, post once or twice, or never, and leave. It's just the way it goes.
If it's a matter of finding the right medication or the right dose then it's doable. Most of us seek medical intervention when our Quality of Life is suffering. I would have never needed meds in my late teens and 20's. After I got treatment, it took another 2-3 yrs to stumble on what I've got now. And I might have to change that in a yr., couple of yrs. .....No treatment is promised to work for any peroid of time.

I'm a double whammy RLSer, as you seem to be, it might be totally different for us because it's a heightened form of the gene. 24/7 RLS does happen as you know, but even with it, your Quality of Life is what will tell you that it's gone far enough. I've been 24/7 since 1995, I had to find relief. I got torked off about the trial and error thing as well, many of do. But there are people that do well with medications for yrs at a time. It just wasn't me and Mirapex.
I did response to Mirapex in the begining and I did for a short time after is was raised. But I topped out with it and it's not likely that I would go back without a fight.
I hope you know that the eay your feeling is not out of line, but your welcome here anytime. Always!

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jrowley
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Post by jrowley »

Becat I am not trying to compare it's just I haven't seen much of anyone posting about a 24/7 thing and it seems everyone is in some form of treatment and yet they are still having problems I guess I want to know what works for everyone that are having relief right now not what doesnt work for them. What doesnt work give me of no idea of going to to the doctor and saying lets try this. I have seen from all things of how bad depakote is and ppl dont want to take it yet it is one I take and it has helped with the pain and my headaches yet doesnt help with the jerk. I don't know seems to me that know one person can get relief from any of the drugs or combination of drugs that are typically used for rls. So in my eyes whats the sense of taking anything and wasting money if there are no combinations that will work see what I'm saying. So I am asking for ppl that are having simular problems with the severity to come forward with what works for them or have worked for them. So I have a idea of to talk with my doctor about to try with mine. And so far most of the ppl that are posting are night time rls'rs so yeah I can find something the night time but what about all day when I am working? See what I mean And my doctor right now is following the logrithm that ann talks of but if that doesnt work what will, looks like nothing to me. So you can see where the confussion starts to set in.
Jan :roll: Can't wait to sleep!

TxSongBird
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Post by TxSongBird »

Jan I suffer from it during the day also, extremely painful arms and legs and feet. I have to be in constant motion or I feel like the world is spiraling out of control. My family thinks I am nuts but my late father and Grandmother had this and of course no one knew 25 years ago what this was. I would describe myself as a hot worm in ashes. I also have Fibromyalgia and that only makes it worse.

Donna
Donna

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jrowley
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Post by jrowley »

What do they give you for your rls donna and is it working or helping
Jan :roll: Can't wait to sleep!

TxSongBird
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Post by TxSongBird »

I am on Requip 50 mg at this time and in four days I will go up to 1 mg and then see the Dr. again for a follow up. I have Fibromyalgia and take Soma 500 mg at night for the muscle problems and Xanax when needed. I also take Lexapro 10 mg for anxiety/panic disorder. The Requip has made a big difference in my sleep.

Donna
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jrowley
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Post by jrowley »

Thats good you are getting relief from the requip I havent tried it yet
Jan :roll: Can't wait to sleep!

TxSongBird
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Post by TxSongBird »

Jan today I am feeling really bad pain in my left upper back region and arms. I told DS who is 18 that if he would punch me in the back I think I would find relief from that. It is crazy how the RLS and Fibro are so maddening and that others around us think we are nuts. My husband says I have floppy syndrome and thank God the Requip is working at night beause he was being kicked, scratched and literally beaten. I always tore the sheets off the bed thrashing around at night. Now during the day my Fibro is bad and I have to work so I can't take med's that are so strong that I fall asleep at my desk.

Donna
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Post by ViewsAskew »

[/quote]

So what your saying here is that everyone on here is having trouble with their meds cuz seems to me they have a come and go situation when they are on their meds. Like the rls breaks through their med. I guess im not understanding too much about it. Because I see a lot of ppl talking about how they are up at wee hours of the night because their rls is keeping them up. Are these ppl on meds and its not working or does the med work and they have a perodic breakthrough of the rls?

And see my rls doesnt keep me up nor does it wake me, it wakes my hubby from my jerking but the only thing that wakes on me is my brain however i feel the pain from it all day long and the constant having to move my legs and feet. So if i am that bad is there really a med out there that is going to help because i am not seeing a lot of ppl on here having much problem during the day but they have a huge problem at night. Or is it I have had it so long that i built a intolerance to my rls so that i dont feel it as much even though it there just as often. Im a bit confused about all the stuff I feel like i shouldnt be here because it so different.[/quote]

Let's see if I can answer all the questions. I guess people are here for several reasons. Some because they haven't ever found the right med, like you, some because their meds stopped working, some that have RLS that comes and goes, some that don't need meds because they can handle it without it, etc. Not all people here are on meds. Some of them are on meds and the meds handle the situation so they have no problems. The degree to which people are affected is quite variable. There are few absolutes when it comes to RLS.

Although some people have had RLS all their lives - from children, I don't know of anyone that has posted here that has RLS all their life and it's been 24/7. Becat's been here longer then I have, maybe she will know differently.

It would be PLMD that wakes up your hubby. It is the kicking in your sleep. It is not exactly the same as RLS and can be caused by many things other than RLS. While 80% of the people who have RLS also have PLMD, only 20% of people with PLMD have RLS. That leaves a lot of other possibilities as to why you have PLMD.

Most people with RLS, even if they have pain, move because of an 'uncomfortable sensation' that is relieved by movement. If you have pain and no uncomfortable sensations, it could be you don't have RLS. I do know that I have ongoing pain from old bone breaks and my wild, wild youth and that certain positions contribute - if I move around, it makes the pain go away. I am not saying this is your case - I'm clueless! - just that maybe it is something else.

I do know that if it is RLS, Dr Buchfurer - one of the foundation's board members and a well-respected expert in RLS - feels strongly that it can be treated. Since there are so many meds, it's not really that many that you've been on. I've been on 9 different meds so far! And other people have a higher count than I.

Mirapex didn't work. Is it because of side-effects or that it was not effective on its own? If it wasn't effective, the next option would be to try Requip. Trying carbidopa/levadopa is considered a last choice - I don't think they recommend it at all, but I don't have it in front of me at the moment. And when the first two most common DAs don't work but are tolerated, then you would try one of the other 3 categories of drugs WITH it. With daily and severe RLS, the algorithm has you go straight from Mirapex and Requip - first alone, then with one of the other 3 categories -, and then to opioids. You switch from the DAs to opioids with daily severe RLS when the DAs are not tolerated or have terrible side effects. The only cases in which opioids do not work as I understand it are the cases in which the opioids are not tolerated.

Since they always seem to work, I would think that you and your doctor could do a simple test to see if this is RLS. Take a strong opioid and see what happens. People with RLS immediately respond. But if that works, it still won't solve the PLMD. Opioids do not have much impact, if any, on PLMD. If your PLMD is related to RLS, the DAs seem to have a great rate of working well. Only a sleep test can determine that, though. Again, as you brought up, it's possible that this is not an RLS issue.

It seems that you have a lot to work out. I am sure this is extraordinarily frustrating for you. I hope that some of the answers from the board help at least a little.

Ann

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