This came as a surprise to me about 2 years ago because it seems to be a family related situation. Several women had it and I didn't, but then it came on a couple of years ago.
Tai Chi helps and so does walking, but not fully. Aspirin? Who wants to take that all of the time? And, I don't want to take drugs that do damage to my organs.
I've experimented with natural things and may have come up with something.
Im a new user, just want to say hi to everyone
-
grandmawowo
- Posts: 4
- Joined: Thu Dec 01, 2005 2:26 am
- Contact:
hi All.
I am a former rls support group leader and for any imfo I suggest www.rlshelp.org. This is the Southern CA. support group site and it is AWESOME!!!!!! If this isn't the right url, go to rls.org and look up support groups in CA.
As for muscle relaxers and happy pills ( can't spell anti depressants) LOL
be carefull as they can realy make rls worse. Also, keep track of foods and drinks to see what sets you off. I can have a drink , but not wine coolers. Also, for those of you who use products with aspertame, it can do you in.
I have chatted with others and weather has always been a complaint. I never had this problem till this yr and I can tell you when the weather is changing!
Another thing is, some of us can't stand the heat of summer, like my niece and some can't stand cold, like me. I may have a fan blowing in the winter ,but not on my legs:)
I hope this is helpful, and to those of you with Dr's who "don't understand", please fire them and find one who does. A good rls Dr. whether neuro or sleep specialist or shrink is worth thier office visit.
One last thing. Please don't be offended by shrink and happy pills. My sense of humor keeps me going .
geandma wowo[/b]
I am a former rls support group leader and for any imfo I suggest www.rlshelp.org. This is the Southern CA. support group site and it is AWESOME!!!!!! If this isn't the right url, go to rls.org and look up support groups in CA.
As for muscle relaxers and happy pills ( can't spell anti depressants) LOL
be carefull as they can realy make rls worse. Also, keep track of foods and drinks to see what sets you off. I can have a drink , but not wine coolers. Also, for those of you who use products with aspertame, it can do you in.
I have chatted with others and weather has always been a complaint. I never had this problem till this yr and I can tell you when the weather is changing!
Another thing is, some of us can't stand the heat of summer, like my niece and some can't stand cold, like me. I may have a fan blowing in the winter ,but not on my legs:)
I hope this is helpful, and to those of you with Dr's who "don't understand", please fire them and find one who does. A good rls Dr. whether neuro or sleep specialist or shrink is worth thier office visit.
One last thing. Please don't be offended by shrink and happy pills. My sense of humor keeps me going .
geandma wowo[/b]
-
grandmawowo
- Posts: 4
- Joined: Thu Dec 01, 2005 2:26 am
- Contact:
Hi Again.
I suggest www.rlshelp.org for so many things I forgot one of the must important.
They have a book ,$13.00 as of this time last yr. that is a wealth of imfo for us. Please check it out.
grandma wowo
I suggest www.rlshelp.org for so many things I forgot one of the must important.
They have a book ,$13.00 as of this time last yr. that is a wealth of imfo for us. Please check it out.
grandma wowo
-
Walking After Midnight
- Posts: 649
- Joined: Sun Aug 21, 2005 5:23 am
- Location: Portage, Indiana
- Contact:
-
Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I'll give you my little speech for what it's worth. Learn all you can about RLS because most of the time we educate our doctors. But if your doctor blows you off, won't listen, won't learn, find a new one. Keep looking until you find a good one. As for meds, again educate yourself. Almost all of us, whether we use meds or natural remedies, have become our own guinea pigs. You just have to keep trying until you find what works for you. It takes time and gets frustrating but that's what we're here for. We've all been through it and we understand. Randy is right, there are some very smart people here and they are more than willing to point you in the right direction but it is up to you to do the work. This is the best support network I have ever known. We all really DO care about each other and many of us have had the wonderful experience of meeting each other. But we are always here for you. One thing that seems to help me is to keep a "sleep diary". Keep track of what you do and eat, drink during the day and then how you sleep at night. This can help find triggers that make your RLS worse. It also helps to take it to your doctor so he can see that you are serious about this (and helps you remember what you want to tell him) Anyway, keep us posted on your journey.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
-
kaz60969
New to the site, i too have RLS and back problems
Hi everybody, thank u 2 all tht has posted recently, u all give so much helpful info. This is all so new to me and sometimes hard to cope with, after i have been to the docs on monday and heard what she has to say i will take it from there, it doesnt really matter what i do, wether i have a relaxing day or have a busy day, my nights are still the same 
I have read from some on here tht caffeine is bad for RLS, i am really bad for coffee, but last week i stayed clear and it didnt make a difference so im bk on it again as bad as ever, i also stopped taking my co-proxamol and this seemed to make things even worse and yet i didnt think they were doing anything but they must of bn helpin a little, also i am still taking sertraline so i am wondering if this has something to do with it, i am really hoping i get somewhere when i see the doc nxt week.
I have read from some on here tht caffeine is bad for RLS, i am really bad for coffee, but last week i stayed clear and it didnt make a difference so im bk on it again as bad as ever, i also stopped taking my co-proxamol and this seemed to make things even worse and yet i didnt think they were doing anything but they must of bn helpin a little, also i am still taking sertraline so i am wondering if this has something to do with it, i am really hoping i get somewhere when i see the doc nxt week.-
nephriticus
- Posts: 88
- Joined: Sun Aug 22, 2004 5:02 am
- Location: Sequim, WA
"I have read from some on here tht caffeine is bad for RLS, i am really bad for coffee, but last week i stayed clear and it didnt make a difference..."
Speaking from experience here, Kaz, there may be a time element at abstaining from ingested substances before results become apparent. I had reason to suspect the el cheapo wine I was drinking was contributing to my RLS symptoms. I quit the fermented grape juice for four weeks with no effect, so I went back to enjoying it. About eight months later I quit the wine altogether for what reason I do not recall. But, after six weeks, the RLS symptoms went away almost entirely. Several months later I happened to have a glass of red wine and that night I had symptoms. I tried another glass the next evening and again had RLS symptoms. I abstained the following months and had zero symptoms.
Recently I began again having symptoms, albeit sporadic, for whatever reasons I do not know. But I definitely know that there is a connection with red wine, chocolate pudding and chocolate chip cookies. I do not drink caffeinated liquids, but I suspect they would affect me.
Speaking from experience here, Kaz, there may be a time element at abstaining from ingested substances before results become apparent. I had reason to suspect the el cheapo wine I was drinking was contributing to my RLS symptoms. I quit the fermented grape juice for four weeks with no effect, so I went back to enjoying it. About eight months later I quit the wine altogether for what reason I do not recall. But, after six weeks, the RLS symptoms went away almost entirely. Several months later I happened to have a glass of red wine and that night I had symptoms. I tried another glass the next evening and again had RLS symptoms. I abstained the following months and had zero symptoms.
Recently I began again having symptoms, albeit sporadic, for whatever reasons I do not know. But I definitely know that there is a connection with red wine, chocolate pudding and chocolate chip cookies. I do not drink caffeinated liquids, but I suspect they would affect me.
Neph
Currently RLS free. Symptoms stopped almost abruptly after my long term, full time care giving duties ended with passing of wife. No stress, no RLS.
***************************************
Currently RLS free. Symptoms stopped almost abruptly after my long term, full time care giving duties ended with passing of wife. No stress, no RLS.
***************************************
-
ViewsAskew
- Moderator
- Posts: 16599
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Yes, great observation, Neph. I think I read a post of the We Move site that said that you had to stop caffeine for two or three weeks to fully realize how much it really affects you. And, this includes stopping all caffeinated tea drinking, chocolate consumption, coffee (including de-caf because there is some caffeine) etc. Now, I don't know if that it true, but the person posting there stated that it had a dramatic effect on her RLS and that maybe we don't realize the full potential because most of us don't really stop ALL caffeine consumption.
I don't have caffeine and I usally say "Oh, I don't drink caffeine" in a self-congratualtory and pompous tone
when anyone asks. But, I do eat chocolate (just had some yummy chocolate-covered raisins while making a lasagna for dinner), and I do drink decaf coffee sometimes. This doesn't seem to affect me, but I really don't know as I never stopped all of it together.
I just went to the We Move site to see if I could find the post about caffeine. http://www.wemove.org/ubb/ultimatebb.ph ... tml#000003. The author mentions in another post in another thread about yellow dyes or other chemicals that can act like caffeine in the body.
You'll have to scroll down in the topics to find it.
http://www.wemove.org/ubb/ultimatebb.ph ... tml#000011
Ann
I don't have caffeine and I usally say "Oh, I don't drink caffeine" in a self-congratualtory and pompous tone
when anyone asks. But, I do eat chocolate (just had some yummy chocolate-covered raisins while making a lasagna for dinner), and I do drink decaf coffee sometimes. This doesn't seem to affect me, but I really don't know as I never stopped all of it together.
I just went to the We Move site to see if I could find the post about caffeine. http://www.wemove.org/ubb/ultimatebb.ph ... tml#000003. The author mentions in another post in another thread about yellow dyes or other chemicals that can act like caffeine in the body.
You'll have to scroll down in the topics to find it.
http://www.wemove.org/ubb/ultimatebb.ph ... tml#000011
Ann
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.
-
nephriticus
- Posts: 88
- Joined: Sun Aug 22, 2004 5:02 am
- Location: Sequim, WA
Ann,
That caffeine thread was an interesting read. It brought to mind several things:
1. (Pre-RLS) When I drank caffeinated coffee it was two or three cups in the morning. When I quit cold turkey, if felt as if someone was beating on the side of my head with a rubber hammer for about six days.
2. (Pre-RLS) For several years, before the coffee regimen, I would drink two or three cups of tea in the morning, never later than noon. When I quit drinking the tea, my one or two nightly trips to the bathroom ceased immediately, regardless of any other liquids I consumed, including coffee.
3. (RLS current) I can eat chocolate anytime before dinner. It's a no-no after dinner.
4. Grumpy Jumpy in that caffeine thread ought to pick the burrs out of his undershorts.
That caffeine thread was an interesting read. It brought to mind several things:
1. (Pre-RLS) When I drank caffeinated coffee it was two or three cups in the morning. When I quit cold turkey, if felt as if someone was beating on the side of my head with a rubber hammer for about six days.
2. (Pre-RLS) For several years, before the coffee regimen, I would drink two or three cups of tea in the morning, never later than noon. When I quit drinking the tea, my one or two nightly trips to the bathroom ceased immediately, regardless of any other liquids I consumed, including coffee.
3. (RLS current) I can eat chocolate anytime before dinner. It's a no-no after dinner.
4. Grumpy Jumpy in that caffeine thread ought to pick the burrs out of his undershorts.
Neph
Currently RLS free. Symptoms stopped almost abruptly after my long term, full time care giving duties ended with passing of wife. No stress, no RLS.
***************************************
Currently RLS free. Symptoms stopped almost abruptly after my long term, full time care giving duties ended with passing of wife. No stress, no RLS.
***************************************
-
kaz60969
New to the site, i too have RLS and back problems
Hi there everyone
Just to let you all know i have been to my doc and once again i have MORE meds, she has put me on DICLOFENAC( 3 a day), i also have to take 2 off my painkillers at night before bed which are CODYDRAMOL, i have already had one of the new meds and i will take another before bed along with my painkillers so lets see what happens from here. Has anyone been on this meds before and if so did it help any? My doctor didnt want to take me off my SERTRALINE as she was concerned tht if she change it then i might get more low, i did tell her i had been on this site and that it does say that sertraline can affect RLS but she didnt comment on it. Thanks for reading this in advance. Kaz
Just to let you all know i have been to my doc and once again i have MORE meds, she has put me on DICLOFENAC( 3 a day), i also have to take 2 off my painkillers at night before bed which are CODYDRAMOL, i have already had one of the new meds and i will take another before bed along with my painkillers so lets see what happens from here. Has anyone been on this meds before and if so did it help any? My doctor didnt want to take me off my SERTRALINE as she was concerned tht if she change it then i might get more low, i did tell her i had been on this site and that it does say that sertraline can affect RLS but she didnt comment on it. Thanks for reading this in advance. Kaz
-
Brenda
Hello
I am also new to this site. I have tried severaly medications and have had a lot of nausea. I have tried Requip, Mirapax and now Pergolide. Iam also taking Klonopin. I have lost 12 lbs since taking these different medications. Any suggestions as what meds to try that will NOT make me so sick. It is driving me crazy, i feel like i am going to vomit all of the time. My husband wants me to try another doctor, but i don't know if we just have not found the right medication yet or what i should do.
Any help would be appreciated.
Any help would be appreciated.
-
Guest
Dear Brenda,
Check out the sticky posts in the section for new to RLS. There are descriptions of medications you can take for RLS for you to print out and share with your doctor.
Not certain what dosages you were using, but a rule of thumb is less is better, go slow with increasing. Increasing dosages to quickly can cause problems.
In my humble opinion only, is if this doctor is willing to accept your input and suggestions, like taking in a print outs of information offered here, of medications etc and they discuss this with you - if they are commited to relieving your pain and discomfort, if they are open to prescribing opiates should all else fail, if they are willing to consult other drs to learn more about RLS, stick with them. It is trial and error for finding the right medication. It is trial and error in finding the right doctor. If this one is compassionate and you feel that you can work it out, stick with them. If not, by all means seek help elsewhere.
Keeping you in my thoughts and prayers, rowing with the others to stir up hope, Hazel
Check out the sticky posts in the section for new to RLS. There are descriptions of medications you can take for RLS for you to print out and share with your doctor.
Not certain what dosages you were using, but a rule of thumb is less is better, go slow with increasing. Increasing dosages to quickly can cause problems.
In my humble opinion only, is if this doctor is willing to accept your input and suggestions, like taking in a print outs of information offered here, of medications etc and they discuss this with you - if they are commited to relieving your pain and discomfort, if they are open to prescribing opiates should all else fail, if they are willing to consult other drs to learn more about RLS, stick with them. It is trial and error for finding the right medication. It is trial and error in finding the right doctor. If this one is compassionate and you feel that you can work it out, stick with them. If not, by all means seek help elsewhere.
Keeping you in my thoughts and prayers, rowing with the others to stir up hope, Hazel
-
moreta
Also Nauseous
Brenda - I understand.
I have finally pinpointed the Mirapex I've been on for the last year as the source of my nausea and vomiting. Went from occasional to daily. Got to the point I couldn't even _think_ of looking at food until almost 12 hours after taking my meds before bed.
Am seeing my dr. on Wednesday to discuss changing meds.
Everyone else -
I'm new here, so wanted to introduce myself. From central Arizona, I was diagnosed with RLS after a sleep study in August 2004. After describing an experience to my dr, and hearing him say "Yep - that's consistent with RLS. Was that recently?" I replied "Christmas Eve when I was 4 years old." So now know I've had this for nearly 3 decades now.
My sib has narcolepsy, and was diagnosed many years ago...part of why the doc wanted me to do a sleep study when I went to him saying "I sleep 8-9 hours a night, and wake up more tired than I went to sleep....I now feel like I can't even think straight."
After my sleep study, I asked my hubby why he never mentioned how much I move - his response was that he'd never slept with anyone else to know it's not normal sleep behavior. Sweetheart that he is, he insists he sleeps better when I'm there kicking him, so won't let me consider moving out to couch to let him sleep.
In talking with my grandmother, who keeps a stationary bike in the spare room so she can exercise in the middle of the night when her legs wake her up, we now think she may have it...but she's always controlled it with regular exercise and her midnight "rides" on the stationary bike. _Her_ mother used to get up and pace the house for hours at a time at night, because her legs were so tight.
I'm still perusing the other posts - but have to say it's comforting to discuss this with other RLS sufferers.
Thanks for being here.
moreta
I have finally pinpointed the Mirapex I've been on for the last year as the source of my nausea and vomiting. Went from occasional to daily. Got to the point I couldn't even _think_ of looking at food until almost 12 hours after taking my meds before bed.
Am seeing my dr. on Wednesday to discuss changing meds.
Everyone else -
I'm new here, so wanted to introduce myself. From central Arizona, I was diagnosed with RLS after a sleep study in August 2004. After describing an experience to my dr, and hearing him say "Yep - that's consistent with RLS. Was that recently?" I replied "Christmas Eve when I was 4 years old." So now know I've had this for nearly 3 decades now.
My sib has narcolepsy, and was diagnosed many years ago...part of why the doc wanted me to do a sleep study when I went to him saying "I sleep 8-9 hours a night, and wake up more tired than I went to sleep....I now feel like I can't even think straight."
After my sleep study, I asked my hubby why he never mentioned how much I move - his response was that he'd never slept with anyone else to know it's not normal sleep behavior. Sweetheart that he is, he insists he sleeps better when I'm there kicking him, so won't let me consider moving out to couch to let him sleep.
In talking with my grandmother, who keeps a stationary bike in the spare room so she can exercise in the middle of the night when her legs wake her up, we now think she may have it...but she's always controlled it with regular exercise and her midnight "rides" on the stationary bike. _Her_ mother used to get up and pace the house for hours at a time at night, because her legs were so tight.
I'm still perusing the other posts - but have to say it's comforting to discuss this with other RLS sufferers.
Thanks for being here.
moreta
-
Guest
Hi everyone....another newbie checking in.
I haven't been diagnosed with RLS, basically I am looking for information about...descriptions of symptons, possible causes and such. I have read the articles but I also know that talking to those who suffer from it is the best way to learn. Those who have a particular problem can give you more understanable info than all that techincal mumbo-jumbo. I like to learn as much as I can about somthing before I go to my doc so I can have an intelligent discussion with him. Luckily he is one who listens to his patients and wants them involved in the treatment plan decisions.
Someone earlier said they suffer from back problems. I have had a lamenectomy with intra-body fusion at the L5-S1. Prior to that I also had the shots (2) in the spine which did not last. I also developed drop foot and that is when the nuerosurgeon said surgery was a must. The surgery was sucessful in giving me my life back and relieved me from having to wear a brace for the drop foot.
Now on to why I think I may have RLS. Since the surgery (2 years ago on 12/9) I get these weird, very hard to describe feelings in my legs. I get them mainly at night but sometimes during the daytime if I am not active and I sit too much. I feel like I constantly want to stretch my legs...holding them out straight as far as I can and tightening the muscles. I also flex my feet, pulling my toes towards me. Nothing seems to make the feeling goe away. It's not every night, in fact at the moment I couldn't tell you how often because I just never kept track. I have a friend who has RLS (diagnosed) and have listened to her talk about it. It is only the past couple of days that I began to wonder if maybe that is what my problem is. Nothing I read talked about back problems possibly being a cause but wondering if there were a number of others who also suffered from back problems and RLS and could that be what has triggered whatever this nasty feeling is. Any comments would be appreciated. TIA
I haven't been diagnosed with RLS, basically I am looking for information about...descriptions of symptons, possible causes and such. I have read the articles but I also know that talking to those who suffer from it is the best way to learn. Those who have a particular problem can give you more understanable info than all that techincal mumbo-jumbo. I like to learn as much as I can about somthing before I go to my doc so I can have an intelligent discussion with him. Luckily he is one who listens to his patients and wants them involved in the treatment plan decisions.
Someone earlier said they suffer from back problems. I have had a lamenectomy with intra-body fusion at the L5-S1. Prior to that I also had the shots (2) in the spine which did not last. I also developed drop foot and that is when the nuerosurgeon said surgery was a must. The surgery was sucessful in giving me my life back and relieved me from having to wear a brace for the drop foot.
Now on to why I think I may have RLS. Since the surgery (2 years ago on 12/9) I get these weird, very hard to describe feelings in my legs. I get them mainly at night but sometimes during the daytime if I am not active and I sit too much. I feel like I constantly want to stretch my legs...holding them out straight as far as I can and tightening the muscles. I also flex my feet, pulling my toes towards me. Nothing seems to make the feeling goe away. It's not every night, in fact at the moment I couldn't tell you how often because I just never kept track. I have a friend who has RLS (diagnosed) and have listened to her talk about it. It is only the past couple of days that I began to wonder if maybe that is what my problem is. Nothing I read talked about back problems possibly being a cause but wondering if there were a number of others who also suffered from back problems and RLS and could that be what has triggered whatever this nasty feeling is. Any comments would be appreciated. TIA