Hi all
I was wondering if anyone here as rls all the time?
I'm just hoping im not alone with this dreaded rls all the time.
gill(UK)
rls all the time?
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Polar Bear
- Moderator
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Yes Gill, I have it all the time, I just keep taking the meds and keep thinking ahead so that I am sure I have taken them in time.
Hubby and I went to the movies yesterday, had to be sure and take some codeine along with the usual med, to ensure I could sit through the movie... which was two and a half hours...... and yippee, I did it.
Gill, you've talked of this before, and I still don't see why you aren't on rls meds, or an opiate, and some counselling to help deal with it if necessary.
Please don't be offended, but it won't go away on its own, actually it won't go away, but you need to be in charge of it as far as possible and have some 'control' over the symptoms.
You need to get help.
Hubby and I went to the movies yesterday, had to be sure and take some codeine along with the usual med, to ensure I could sit through the movie... which was two and a half hours...... and yippee, I did it.
Gill, you've talked of this before, and I still don't see why you aren't on rls meds, or an opiate, and some counselling to help deal with it if necessary.
Please don't be offended, but it won't go away on its own, actually it won't go away, but you need to be in charge of it as far as possible and have some 'control' over the symptoms.
You need to get help.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
If I recall, she gets codeine for her arthritis, which even for that I think is probably woefully inadequate .. I'm not really sure what the deal is, I think she is the person who seems to be very sensetive to any meds, if that's right than I can understand the hesitation, but you really need to try a stronger opiate.
I don't know what to say anymore cause I've given all the advice I can, but we can't help you any further until your help yourself. All we can do is put words on the Internet, and that doesn't help RLS.
I don't know what to say anymore cause I've given all the advice I can, but we can't help you any further until your help yourself. All we can do is put words on the Internet, and that doesn't help RLS.
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Jitterlegs
- Posts: 90
- Joined: Sun Jul 06, 2008 3:45 pm
Hi Gill. I have RLS 24/7 as well. I have had bad experiences with the medications (mirapex, requip and neurontin) and am on my second try of Requip. My struggle is knowing how to balance dealing with the RLS vs. the medications and side effects. I worry that maybe my RLS isn't bad enough to warrant medications and their potential side effects. I worry that my RLS will get worse and then I will have no other medications to try if I start medications too early. I worry that maybe I should just wait until it gets so bad I can't stand it before going on medications. I have recently had a lot of pain in my legs which made me try Requip again. I figured I could withstand the constant jiggling legs while sitting, and can move around often enough, but the pain is much harder to deal with. So, I guess I just wanted to let you know, that no, you are not alone. I find this condition very frustrating because no one treatment seems to do the trick for everyone and there is a lot of trial and error. Not to mention no real "tests" to measure how you are doing. I also have up and down days with the pain when I keep hoping that maybe, just MAYBE it is gone for good. HA!!! Another frustrating part of this condition!! It is so unpredictable. I guess my dream is to have a pill you can take only when you are having problems and RLS would disappear completely. One can dream, right?? 
Good luck, I hope things inprove for you!
Good luck, I hope things inprove for you!Hi Gill
24/7 RLS here too ... currently on clonazepam, codeine and amitriptyline for it.
I suggest you ask for a long appointment with your doc. Before you go, write down all the conditions you've been officially diagnosed with, who diagnosed them, and then beside them, what medications you take and when. Also, write a list of questions you want to ask your doctor, that way you wont forget anything.
If you haven't consulted a specialist i.e. a neurologist or sleep specialist, i suggest you do so. If the first available appointment isn't for 6 months, ask to be put on a waiting list for any appointments that are cancelled by other patients.
Your Doc is there to help you and by the sound of it you haven't hashed out exactly what you REALLY need.
I have numerous conditions which require different medications and my doc, my specialist and I work together as a team to ensure that I am on the right medications for everything so I can get as good a quality of life as I can.
I echo and agree with what Zach said "we cant help you any further until you help yourself."
If you like I can email you an excel spreadsheet that I've been using which lists everything for me and it has been a great help to the doctors i've seen lately.
Time to take the bull by the horns, Gill
Take care of you!
24/7 RLS here too ... currently on clonazepam, codeine and amitriptyline for it.
I suggest you ask for a long appointment with your doc. Before you go, write down all the conditions you've been officially diagnosed with, who diagnosed them, and then beside them, what medications you take and when. Also, write a list of questions you want to ask your doctor, that way you wont forget anything.
If you haven't consulted a specialist i.e. a neurologist or sleep specialist, i suggest you do so. If the first available appointment isn't for 6 months, ask to be put on a waiting list for any appointments that are cancelled by other patients.
Your Doc is there to help you and by the sound of it you haven't hashed out exactly what you REALLY need.
I have numerous conditions which require different medications and my doc, my specialist and I work together as a team to ensure that I am on the right medications for everything so I can get as good a quality of life as I can.
I echo and agree with what Zach said "we cant help you any further until you help yourself."
If you like I can email you an excel spreadsheet that I've been using which lists everything for me and it has been a great help to the doctors i've seen lately.
Time to take the bull by the horns, Gill
Take care of you!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
Waterloo,
Sardsy has given you very good advice, jot down all your ailments, and also ask them to look at the info online at this website about recommended treatments, which includes opiate-derivatives... there are many mild codeine mixtures that would help you SO much. That's what I take, and I have RLS 24/7, the painful kind, and I remember what a wreck I was before I got ahold of my medicine. You are doing yourself a disservice by not getting that kind of medicine, as Zach suggested.
As long as you are not terribly overweight, you do not have to worry with it making you too sleepy, and you can stay on the same dose long-term. If you are taking other sedative-type drugs, that if taken in combination with an opiate would depress your nervous system a little too much, well, the doc can surely take you off one of them in exchange, so your breathing doesn't slow too much. I should think in Great Britain they would not hesitate to give you the heavier drugs that would take away the dreadful symptoms of RLS, the way they hesitate in the U.S. Just say, "May I please have some pain pills, I feel I'm going around the bend with this."
You have worried all of us with this untreated RLS you have, you have been downright pitiful in your cries, and you should cry in the doc's office and SHOW HIM how you feel, dear. Perhaps take a friend who knows you very well and how much you suffer, to lobby on your behalf with you. And DO see your doc right after the holidays, tell him on a scale of 1 to 10 how bad you feel, with 10 being the worst. I recall when I first went in after six months of untreated RLS, I was at 8 or 9 and panic-stricken.
GG
Sardsy has given you very good advice, jot down all your ailments, and also ask them to look at the info online at this website about recommended treatments, which includes opiate-derivatives... there are many mild codeine mixtures that would help you SO much. That's what I take, and I have RLS 24/7, the painful kind, and I remember what a wreck I was before I got ahold of my medicine. You are doing yourself a disservice by not getting that kind of medicine, as Zach suggested.
As long as you are not terribly overweight, you do not have to worry with it making you too sleepy, and you can stay on the same dose long-term. If you are taking other sedative-type drugs, that if taken in combination with an opiate would depress your nervous system a little too much, well, the doc can surely take you off one of them in exchange, so your breathing doesn't slow too much. I should think in Great Britain they would not hesitate to give you the heavier drugs that would take away the dreadful symptoms of RLS, the way they hesitate in the U.S. Just say, "May I please have some pain pills, I feel I'm going around the bend with this."
You have worried all of us with this untreated RLS you have, you have been downright pitiful in your cries, and you should cry in the doc's office and SHOW HIM how you feel, dear. Perhaps take a friend who knows you very well and how much you suffer, to lobby on your behalf with you. And DO see your doc right after the holidays, tell him on a scale of 1 to 10 how bad you feel, with 10 being the worst. I recall when I first went in after six months of untreated RLS, I was at 8 or 9 and panic-stricken.
GG
"It's not how old you are; it's how awful you feel."
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Jitterlegs
- Posts: 90
- Joined: Sun Jul 06, 2008 3:45 pm
GG--I have to wonder why it is that you say "As long as you are not terribly overweight, you do not have to worry with it making you too sleepy, and you can stay on the same dose long-term." I have never heard such a thing before. What would weight have to do with making you tired and needing to change a your dose over time?
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
I think waterloo has stated in other post that she takes pain meds and often, I am wondering why they are not helping with her rls? Also wondering if she is taking pain meds and if its not helping even her arthritis, why the Dr has not tried more powerful pain meds. I think she need to find another dr! The one she has, doesnt seem to be able to help her. I sure would not continue with a Dr that is not helping any problems I have.
What other problems do you have besides the rls and arthritis? you probably need to see a pain specialist!
What other problems do you have besides the rls and arthritis? you probably need to see a pain specialist!
Jitter,
The weight issue has to do with how well you breathe through your esophagus. Many people who are heavy also have breathing problems, including sleep apnea, which is when the throat closes up and ruins a good night's rest. Extra weight not only pushes out, but pushes in. Overweight people have a million problems with their health because of the pressure that weight puts on the body, and not just their bones, but their organs and internal systems in general.
Soooooo, if you give an obese person sedatives, this can be dangerous. For example, that's why when some folks who want that gastro bypass operation, they cannot have the op unless they are under a certain weight, otherwise they'll die under anesthesia. The weight interferes with their breathing when sedated.
I myself remember when I zoomed up in weight for about a year because of a medication I was on for awhile, and when I would recline or take a nap or sleep, I would wake up suddenly, practically choking to death. The extra weight gathered around my neck and closed down my throat. When I eventually lost the weight, I no longer had that scary problem.
I hope that explains the problems a person can have who is overweight and has to take central nervous system depressants. It's risky. I was just trying not to tell Waterloo to get on some heavy-duty medicine without that caveat about weight. Do you inquire because you have a weight issue perhaps?
Oh, and I don't think you were inquiring about the part of what I said, about being able to stay on the same pain medication dose long-term, but if you were, I can say this. Many people, not just me, have that experience, as those here who post at the RLS website have said many times. It's sad, really, that narcotics are denied people on account of the "drug war," which unfortunately has affected the way docs are allowed and not allowed to distribute helpful opiates. This is because while the meds are indeed addicting, they are relatively safe under a doctor's guidance.
In fact, the over-control of medical drugs got to a point where people who were terminal with cancer, they couldn't get morphine, until Hospice stepped in and freely gave it, and the result was these patients died in comfort, could be fairly lucid and therefore come to terms with their death, not to mention it stopped the obvious cruelty of not providing relief to so many dying people who desperately needed it.
GG
The weight issue has to do with how well you breathe through your esophagus. Many people who are heavy also have breathing problems, including sleep apnea, which is when the throat closes up and ruins a good night's rest. Extra weight not only pushes out, but pushes in. Overweight people have a million problems with their health because of the pressure that weight puts on the body, and not just their bones, but their organs and internal systems in general.
Soooooo, if you give an obese person sedatives, this can be dangerous. For example, that's why when some folks who want that gastro bypass operation, they cannot have the op unless they are under a certain weight, otherwise they'll die under anesthesia. The weight interferes with their breathing when sedated.
I myself remember when I zoomed up in weight for about a year because of a medication I was on for awhile, and when I would recline or take a nap or sleep, I would wake up suddenly, practically choking to death. The extra weight gathered around my neck and closed down my throat. When I eventually lost the weight, I no longer had that scary problem.
I hope that explains the problems a person can have who is overweight and has to take central nervous system depressants. It's risky. I was just trying not to tell Waterloo to get on some heavy-duty medicine without that caveat about weight. Do you inquire because you have a weight issue perhaps?
Oh, and I don't think you were inquiring about the part of what I said, about being able to stay on the same pain medication dose long-term, but if you were, I can say this. Many people, not just me, have that experience, as those here who post at the RLS website have said many times. It's sad, really, that narcotics are denied people on account of the "drug war," which unfortunately has affected the way docs are allowed and not allowed to distribute helpful opiates. This is because while the meds are indeed addicting, they are relatively safe under a doctor's guidance.
In fact, the over-control of medical drugs got to a point where people who were terminal with cancer, they couldn't get morphine, until Hospice stepped in and freely gave it, and the result was these patients died in comfort, could be fairly lucid and therefore come to terms with their death, not to mention it stopped the obvious cruelty of not providing relief to so many dying people who desperately needed it.
GG
"It's not how old you are; it's how awful you feel."
Jitter,
It's me, Gail, again. I thought some more about what you asked, and after my big speech yesterday, I realized what you were trying to say when you said: "What would weight have to do with making you tired and needing to change a your dose over time?"
I guess I was not clear in my original post. And then I did not answer your question very well. Weight would not affect having to up a dose of opiates over time. Normally with those drugs, you don't have to increase them hardly at all, so I mentioned that part because I didn't want her to think she'd have to take more and more for it to be effective; it is effective for a long time at the same dose. Some meds aren't like that; many need to be upped frequently. And the dose is set at the weight you are, so weight makes no difference in dose of opiate, except when it's set.
I think I already answered the part of your question about weight making a difference in making you too sleepy. I'll clarify it more, tho, by saying an overweight person doesn't want to get too sleepy. Opiates do make you sleepy. If an obese person gets too sleepy, their breathing might stop. So, I was trying to imagine why her doc won't give her pain meds, thinking maybe there was a concern with both her weight and perhaps any other drugs she takes. See, I don't know how much Waterloo weighs. So, I was trying to cover all the bases.
Do let me know, Jitter, if I'm making any sense, or if you have any direct questions for me. My mind stays confused because I am in a lot of pain from fracturing my back in a car wreck years ago. It's what triggered my RLS in the first place. So, I'm not always clear. Thanks, and sorry for the confusion!
GG
It's me, Gail, again. I thought some more about what you asked, and after my big speech yesterday, I realized what you were trying to say when you said: "What would weight have to do with making you tired and needing to change a your dose over time?"
I guess I was not clear in my original post. And then I did not answer your question very well. Weight would not affect having to up a dose of opiates over time. Normally with those drugs, you don't have to increase them hardly at all, so I mentioned that part because I didn't want her to think she'd have to take more and more for it to be effective; it is effective for a long time at the same dose. Some meds aren't like that; many need to be upped frequently. And the dose is set at the weight you are, so weight makes no difference in dose of opiate, except when it's set.
I think I already answered the part of your question about weight making a difference in making you too sleepy. I'll clarify it more, tho, by saying an overweight person doesn't want to get too sleepy. Opiates do make you sleepy. If an obese person gets too sleepy, their breathing might stop. So, I was trying to imagine why her doc won't give her pain meds, thinking maybe there was a concern with both her weight and perhaps any other drugs she takes. See, I don't know how much Waterloo weighs. So, I was trying to cover all the bases.
Do let me know, Jitter, if I'm making any sense, or if you have any direct questions for me. My mind stays confused because I am in a lot of pain from fracturing my back in a car wreck years ago. It's what triggered my RLS in the first place. So, I'm not always clear. Thanks, and sorry for the confusion!
GG
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Jitterlegs
- Posts: 90
- Joined: Sun Jul 06, 2008 3:45 pm
Thanks for the explanatioin GG. I see what you were getting at. When I first read your response, I was like HUH??? What would that have to do with it, but I so understand the sleep apnea thing, and I very well know you don't have to be over weight to have sleep apnea, although that is most common. Any time a medication suppresses your breathing, it can be scary, let alone other issues along with it. Thanks for the clarification.
I'm sorry to hear of your struggles, I hope things improve for you!
Jitter
I'm sorry to hear of your struggles, I hope things improve for you!
Jitter