I just want to say that I don't think the new member's name is gr8tnanal. Great-n-A n a l?
I'm pretty sure her name is Gr8tnana1. Great Nana 1.
I'm not 100% sure, but pretty sure.
ANYONE NEW PLEASE ANSWER
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Walking After Midnight
- Posts: 649
- Joined: Sun Aug 21, 2005 5:23 am
- Location: Portage, Indiana
- Contact:
I'm new, just joined tonight. I'm so thankful to find this.
I've been suffering with RLS for about 3 years now. It has progressively gotten worse. My doctor has tried all kind of drugs. They work in the beginning and then after a few days it stops. This has been very frustrating. I'm now on Lyrica. It was great for a few days then WHAM, it stops working as well.
Tomorrow I'm going to my doctor to get samples of a new drug. I've forgotten the name of it.
I've been miserable for weeks. I feel like I've been cursed!!! I got this miserable thing from my mom.
Oh, by the way... I'm 50yrs old and have been married for 30yrs. I have 3 grown daughters. So far they have no symptoms.
Well, just wanted to post something tonight. Kinda like breaking the ice so to speak.
Thanks for reading this.
I've been suffering with RLS for about 3 years now. It has progressively gotten worse. My doctor has tried all kind of drugs. They work in the beginning and then after a few days it stops. This has been very frustrating. I'm now on Lyrica. It was great for a few days then WHAM, it stops working as well.
Tomorrow I'm going to my doctor to get samples of a new drug. I've forgotten the name of it.
I've been miserable for weeks. I feel like I've been cursed!!! I got this miserable thing from my mom.
Oh, by the way... I'm 50yrs old and have been married for 30yrs. I have 3 grown daughters. So far they have no symptoms.
Well, just wanted to post something tonight. Kinda like breaking the ice so to speak.
Thanks for reading this.
Paula B.
Hi Paula. Welcome. I am glad you are here. I am very sorry to hear that you are having alot of pain. I have RLS all my life, but I never was actually diagnosed until a short time ago. I know how painful RLS can be. Like many of us who have RLS, I suffer with it everyday. Some better than others. I am taking Lyrica, Requip, and methadone. So far the only thing that helps at all is the methadone. I will see my doc this week and hopefully I will be able to try something new. This is a great group, as I am sure you will see. Everyone is wonderful here. We are all family. Everyone here is happy to help if you should ever have any questions or need to vent. Please check out our New to RLS sticky, You will find alot of great info there. I hope you find some relief from the pain. Please keep us posted, ok?
Rebecca
Hi!!! I'm so glad I found you guys!!!! I think I've had RLS off and on through my 20's and 30's. I had symptoms when I exercised strenuously. I didn't know what it was or what it was called.
My mother has it and has been plagued since her 50's. She's 74 now and is taking sinimet with good results.
I just turned 50 in August. Since that time my symptoms have gotten alot worse. I wake up with my arms and legs just going crazy. It's horrible. I haven't had a whole night sleep since I don't know when.
I'm also on some psych drugs. I'm on Wellbutrin XL, Geodon, and Provigil. Does anyone know if any of these make RLS worse? I know Wellbutrin is okay from some posts I've read
My sleep doctor has tried just about everything there is. There are alot of the meds they use that I can't take. It is making life difficult.
I went to my PCP Saturday for a ferritin level. I forgot that my sleep doctor had told me to do it. I know it sounds weird, but, I hope that's the problem. I hope to get the results on Wednesday.
The medicines I can take seem to work at first but as time goes on (a week) it stops working! I'm on Lyrica now and it stopped working after about 5 days. I take 150mg at 4:30pm and again at 8:30pm. I'm supposed to take another dose at midnight.
One night I started at 10:00pm and it went on for an hour or two. Last night it started at midnight. I took the Lyrica and it took another hour for it to work. At times I take Tylenol and it helps some too. Needless to say I called my doctor. He's leaving samples of another medicine at the front desk for me. I'm glad he did that because money for the meds I can't use is staking up.
I went to my doctor's office today and got some samples of Dostinex. Has anyone out there tried this before? And if yes, what was your experience?
I've read that some people go to neurologists. Is that common? I go to a sleep specialist. I've had 2 sleep studies. They also found out that I have sleep apnea.
I've read alot of the posts and they have been helpful. Thank you so muchy for being here. It's comforting to know that I'm not alone.
I apologize for the length of this post. It's the first time I've posted.
Again, Thank You!!
My mother has it and has been plagued since her 50's. She's 74 now and is taking sinimet with good results.
I just turned 50 in August. Since that time my symptoms have gotten alot worse. I wake up with my arms and legs just going crazy. It's horrible. I haven't had a whole night sleep since I don't know when.
I'm also on some psych drugs. I'm on Wellbutrin XL, Geodon, and Provigil. Does anyone know if any of these make RLS worse? I know Wellbutrin is okay from some posts I've read
My sleep doctor has tried just about everything there is. There are alot of the meds they use that I can't take. It is making life difficult.
I went to my PCP Saturday for a ferritin level. I forgot that my sleep doctor had told me to do it. I know it sounds weird, but, I hope that's the problem. I hope to get the results on Wednesday.
The medicines I can take seem to work at first but as time goes on (a week) it stops working! I'm on Lyrica now and it stopped working after about 5 days. I take 150mg at 4:30pm and again at 8:30pm. I'm supposed to take another dose at midnight.
One night I started at 10:00pm and it went on for an hour or two. Last night it started at midnight. I took the Lyrica and it took another hour for it to work. At times I take Tylenol and it helps some too. Needless to say I called my doctor. He's leaving samples of another medicine at the front desk for me. I'm glad he did that because money for the meds I can't use is staking up.
I went to my doctor's office today and got some samples of Dostinex. Has anyone out there tried this before? And if yes, what was your experience?
I've read that some people go to neurologists. Is that common? I go to a sleep specialist. I've had 2 sleep studies. They also found out that I have sleep apnea.
I've read alot of the posts and they have been helpful. Thank you so muchy for being here. It's comforting to know that I'm not alone.
I apologize for the length of this post. It's the first time I've posted.
Again, Thank You!!
Paula B.
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cornelia
Hi Paula, welcome to our group!
Just a short message from me, because I do not have much energy right now.
I want to say something about Dostinex. It is a dopamine agonist with a long half life (60 hours I think it is), so it is long-acting, as opposed to requip (Adartrel) and Mirapex (Sifrol). I should say Dostinex is for severe RLS, 24/7.
For me it was a no-no. I had sleep attcks with it and no energy at all. For my friend it is a totally different story. She has been on it for about 4 -5 years and she is very pleased with it. We all react so differently to meds.
You will not find many people on this forum who are on Dostinex, as it is very expensive in the USA.
Hope this helps you some.
Corrie
Just a short message from me, because I do not have much energy right now.
I want to say something about Dostinex. It is a dopamine agonist with a long half life (60 hours I think it is), so it is long-acting, as opposed to requip (Adartrel) and Mirapex (Sifrol). I should say Dostinex is for severe RLS, 24/7.
For me it was a no-no. I had sleep attcks with it and no energy at all. For my friend it is a totally different story. She has been on it for about 4 -5 years and she is very pleased with it. We all react so differently to meds.
You will not find many people on this forum who are on Dostinex, as it is very expensive in the USA.
Hope this helps you some.
Corrie
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douginlondon
- Posts: 1
- Joined: Thu Oct 26, 2006 10:12 pm
- Location: London, Ontario, Canada
- Contact:
New to this forum..........
I am new to this forum, but have an ongoing acquaintence with RLS. My unending curiousity drove me to investigate RLS on the internet and I am happy to say that I found a local support group where I live as well as this forum. The personal statements about the medications are very interesting and give me a lot of information to take to my specialist (in movement disorders) when I next see him in January 07. I have been prescribed 1 mg of Requip (by the same doctor) but on my own, I have increased my daily dosage to 3 - 4 mg depending on how bad my legs and body feel. I say body, because I get severe jerking of my arms, shoulders and head in combination with my jumpy legs. Through this forum, I have found that I AM NOT ALONE with my syptoms. That in itself is a terrific boost. So I will sit back and read what you all have to say, so that I can be super knowledeable when I go back to my doctor. I think this will be a first step in a long journey.
Dugger
I want to say "welcome" to all of you "newcomers." I am so glad you all found this site---it has saved me so many times. I am very sorry that you all have RLS, but I found that knowing I wasn't alone made so much difference.
To each of you, no post is ever too long, there are no silly questions, and we all understand what living with RLS is like.
Personally, I find that I often learn something new about RLS when I come here. We have wonderful researchers and people who really care about others on this forum.
Good luck to all of you and please keep us posted on your progress.
Welcome!
Jan
To each of you, no post is ever too long, there are no silly questions, and we all understand what living with RLS is like.
Personally, I find that I often learn something new about RLS when I come here. We have wonderful researchers and people who really care about others on this forum.
Good luck to all of you and please keep us posted on your progress.
Welcome!
Jan
No one is alone who had friends.
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dallas girl
- Posts: 1
- Joined: Sat Nov 04, 2006 5:53 am
My first time here, and I'm pretty confused. I had a sleep study done to determine whether or not I have sleep apnea -- and I do. I knew I had a lot of the symptoms so it was a relief to get that diagnosis. I'll be getting my CPAP soon.
But they're also saying I have RLS. Can I have RLS and not know it? I'm not aware of any of the symptoms. When I mentioned it to them, the nurse said, "It wakes you up all night, sweetie."
So it can be waking me up but I don't feel any of the symptoms in my legs?
The doc gave me samples of Requip and I took my first one tonight, but I feel kind of strange about taking them since I can't see anything on this website that indicates you can have RLS and not know it.
Thanks in advance for any feedback.
But they're also saying I have RLS. Can I have RLS and not know it? I'm not aware of any of the symptoms. When I mentioned it to them, the nurse said, "It wakes you up all night, sweetie."
So it can be waking me up but I don't feel any of the symptoms in my legs?
The doc gave me samples of Requip and I took my first one tonight, but I feel kind of strange about taking them since I can't see anything on this website that indicates you can have RLS and not know it.
Thanks in advance for any feedback.
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ViewsAskew
- Moderator
- Posts: 16580
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
No, you cannot have RLS and not know it. RLS occurs while awake, not while sleeping.
But, you CAN have PLMD (periodic limb movement disorder) and not know it. It sounds like you have this - they are leg movements in the night. SOme people are not bothered by them, but others are awakened by the movements - not awake enough to know it, but awake enough that you don't get phase 3 or 4 sleep.
PLMD often accompanies apnea. I would press your doctor for more information. I would read more about PLMD and apnea. From the little I've read, it seems that the PLMD may go away when you are treated for apnea. So, if that is true, it would seem that waiting awhile, using the CPAP (or bipap), and seeing how you feel would be better. After a few months, if you are still tired and don't see an improvement, then make an appointment for another sleep study. This time, have them do it while using the CPAP - then they can see if it is working correctly and if you still have having PLMs.
Hope that info helps you some. If you go the "sticky" in this section - about managing RLS - there are some links in there to info on PLMD. That might help you get started in doing more research.
But, you CAN have PLMD (periodic limb movement disorder) and not know it. It sounds like you have this - they are leg movements in the night. SOme people are not bothered by them, but others are awakened by the movements - not awake enough to know it, but awake enough that you don't get phase 3 or 4 sleep.
PLMD often accompanies apnea. I would press your doctor for more information. I would read more about PLMD and apnea. From the little I've read, it seems that the PLMD may go away when you are treated for apnea. So, if that is true, it would seem that waiting awhile, using the CPAP (or bipap), and seeing how you feel would be better. After a few months, if you are still tired and don't see an improvement, then make an appointment for another sleep study. This time, have them do it while using the CPAP - then they can see if it is working correctly and if you still have having PLMs.
Hope that info helps you some. If you go the "sticky" in this section - about managing RLS - there are some links in there to info on PLMD. That might help you get started in doing more research.
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.
I just found the site after I did a search from the myspace search engine. I just joined about a day ago. Ive had symptoms on and off since i was a teenager, but they have really been getting more episodic and bad lately... to the point im not sleeping at night and im moving a lot and its like some electric live wire in my legs, tightening pain, or prickly like everyday in the past week and a half already. and ive been falling asleep during the day or sleeping until 2 or 3pm from 7 or 8 in the morning when i finally get to bed. or i fall asleep where im not supposed to due to exhaustion. and i wake in the middle of the night with it sometimes. ive been doing lots of night walking too.
i first heard about rls after i saw the commercial for it on tv and got the rls kit in the mail...and have been filling it out everyday- the tracker.
i see the doctor on Tuesday for it
i first heard about rls after i saw the commercial for it on tv and got the rls kit in the mail...and have been filling it out everyday- the tracker.
i see the doctor on Tuesday for it
well KT sorry to say but it sounds like you have RLS. I don't get the jerking and twitching so much as I do the tightning pain and it's all day long. before i found a doc, i was like a walking zombie, and i had an infant at the time. now i just have to contend with work all day and the dreaded office chair! i bring a pillow from home to put in mine.
good luck with your doctor, print some of the stuff you have seen on the net about RLS, sometimes that helps.
dee
good luck with your doctor, print some of the stuff you have seen on the net about RLS, sometimes that helps.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
i have been having mild to moderate symptoms of RLS for a couple of years. then, in October, i had a severe bout that wouldn't let me sleep for days. seeing commercials on tv for Requip certainly alerted me as well. i thought, "wow. that's me." when i went to my doc about it and was having a second severe bout, she named it quickly as RLS, telling me that she was familiar with the condition. so here i am. i bet the arrival of FDC approved drug along with the tv ads has a lot to do with the recent influx of new members. Moll
hi
I had found you a couple years ago when I typed in chat groups for rls. I was only here a short while and then we moved and I was not on the internet much. I just resently got my computer turned back on and came back. I to have read how much we all have so much in common and how we can vent to one another and know what each other is going through. I wish I did not have it but I am so glad we have a place to come to and I thank you all very much for being here for all of us!!
I had found you a couple years ago when I typed in chat groups for rls. I was only here a short while and then we moved and I was not on the internet much. I just resently got my computer turned back on and came back. I to have read how much we all have so much in common and how we can vent to one another and know what each other is going through. I wish I did not have it but I am so glad we have a place to come to and I thank you all very much for being here for all of us!!
Hey debt_59
I'm so glad you found your way back here. It's a shame that we all have to HAVE such a place as this, but I'm also grateful that we do! It's saved me so many times. Like you, just knowing that I'm not alone--that I'm not crazy or weird--and knowing that I can let go when life gets too hard is amazing.
We're all in this together, as a great friend of mine says... So, we learn from you, you learn from others and we all can laugh, cry and scream together. Welcome back!
Jan
I'm so glad you found your way back here. It's a shame that we all have to HAVE such a place as this, but I'm also grateful that we do! It's saved me so many times. Like you, just knowing that I'm not alone--that I'm not crazy or weird--and knowing that I can let go when life gets too hard is amazing.
We're all in this together, as a great friend of mine says... So, we learn from you, you learn from others and we all can laugh, cry and scream together. Welcome back!
Jan
No one is alone who had friends.