I know that I have this. I was diagnosed with it a couple years ago, and I have found no drugs or therapy that makes any difference at all.
I have found that at night I can't sleep with this. I roam the house sometimes. Now I find that if I lay down and rock back and forth till I fall asleep this works! It doesn't take very long before I sleep and by deliberately moving all the time like that my legs don't bother me as much.
Real problem with this ... I can't sleep in the same bed with my husband. It is driving him nuts and he can't sleep. Anyone have ideas on this?
What other things work .. especially at night?
I'm glad I found this sight. I hope that I will help someone else and maybe get new ideas to help me.
How I deal with this at night?
Nightwalker
Hi Keepingstepm it's Jan
I'm sorry I just now noticed your post about dealing with RLS at night. Have you seen a doctor yet? If not, you probably need to find one--but make sure you get a doctor who will LISTEN!! Are you on any meds?
Remember, we hire docors! They forget that little point!
Before I got a good doctor (neurologist), I walked all night long. It was exhausting, but that's the only relief I got. Oh, I would maybe catch a few zzzzs, but never longer than a 1/2 hour. I really feel for you! Been there and it's awful!!!! Sometimes a hot bath helped. I wish I could tell you something "magic" that wold help.
I kow I'm not a lot of help, but if you need anything, please feel to PM or email me. At the very least, I'll listed to you if you need to vent!! We all need to vent occasionally! Well, I'm going to hop back into bed for a little while. BTW, I've been sleeping on the couch in the family room--I just got diagnosed with fibromyalgia and have had a lot of pain. Better now--new medication!
You take care and remmeber, if I can do anything, let me know!
Sincerely, Jan
I'm sorry I just now noticed your post about dealing with RLS at night. Have you seen a doctor yet? If not, you probably need to find one--but make sure you get a doctor who will LISTEN!! Are you on any meds?
Remember, we hire docors! They forget that little point!
Before I got a good doctor (neurologist), I walked all night long. It was exhausting, but that's the only relief I got. Oh, I would maybe catch a few zzzzs, but never longer than a 1/2 hour. I really feel for you! Been there and it's awful!!!! Sometimes a hot bath helped. I wish I could tell you something "magic" that wold help.
I kow I'm not a lot of help, but if you need anything, please feel to PM or email me. At the very least, I'll listed to you if you need to vent!! We all need to vent occasionally! Well, I'm going to hop back into bed for a little while. BTW, I've been sleeping on the couch in the family room--I just got diagnosed with fibromyalgia and have had a lot of pain. Better now--new medication!
You take care and remmeber, if I can do anything, let me know!
Sincerely, Jan
No one is alone who had friends.
JANan, I CAN TELL YOU THAT YOU WERE MISSED AT LONG BEACH NAME, CAME UP NUMEROUS TIME.
MY TACHYCARDYA IS SOARING,STILL 148 AFTER THREE DAY!!!!!
I NEED TO STOP IT OTHERWISE I CROAK! i AM LEAVING TO ORROW TIME AND HAVE TO WORK AN A POSTER IN BETWEEN. sO NO REST FOR THE WICJED. NEED YLOUR GOD WISHES.
i AM SATURATED WITH BETA BLCOKERS AND TRANQUILQIZIERS, ANYTHING ELSE TO TAKE????? HOW BOUT MUSCLE RELAXANTS
MY TACHYCARDYA IS SOARING,STILL 148 AFTER THREE DAY!!!!!
I NEED TO STOP IT OTHERWISE I CROAK! i AM LEAVING TO ORROW TIME AND HAVE TO WORK AN A POSTER IN BETWEEN. sO NO REST FOR THE WICJED. NEED YLOUR GOD WISHES.
i AM SATURATED WITH BETA BLCOKERS AND TRANQUILQIZIERS, ANYTHING ELSE TO TAKE????? HOW BOUT MUSCLE RELAXANTS
Jumpy Owl
Thank you so much Jumpy
It's Jan
I want to than you so much for all you did for us, Jumpy! I wish I could have been there to meet YOU and be with all of you. I'm hoping for next year!! I KNOW YOU DID A GREAT JOB!! And, I really appreciate all of your efforts.
Take care of yourself. We only have one JUMPY and we need you!!!
You certainly have my good wishes for your trip!! You'll be in my thoughts and prayers!!
Jan
I want to than you so much for all you did for us, Jumpy! I wish I could have been there to meet YOU and be with all of you. I'm hoping for next year!! I KNOW YOU DID A GREAT JOB!! And, I really appreciate all of your efforts.
Take care of yourself. We only have one JUMPY and we need you!!!
You certainly have my good wishes for your trip!! You'll be in my thoughts and prayers!!
Jan
No one is alone who had friends.
-
cornelia
thanks too Jumpy/Jan
Jumpy, thank you too for all the work you did. Fabulous!
BTW Jan, if you are the one who has fibro as well as RLS: in another group I read there is a new Yahoo group for RLS/Fibro patients, called RLSand more. So I thought you might be interested, but don't leave this wonderful group! (you won't, I am sure of thet).
Corrie
BTW Jan, if you are the one who has fibro as well as RLS: in another group I read there is a new Yahoo group for RLS/Fibro patients, called RLSand more. So I thought you might be interested, but don't leave this wonderful group! (you won't, I am sure of thet).
Corrie
Thank you ladies!
All I can say is that I tried at Long Beach. My impression was that the patients present responded and were interested. Our own appeared to be less so but somehow we missed getting together after the talk. I still do not know what happened. BeCat swears that they were waiting for me, not exactly sure where.
The reaction of the RLS leadership was even more puzzling. Apparently nobody attended. The faculty was not notified. I only learned about it accidentally (!) Fortunately, I had a chance to talk with the chairman of the board of directors who appears to be a wise, reasonable person with RLS. I sent him the material.
I also talked with two Ph.D.'s who both impressed me. I have not sent them the material yet but definitely plan to do so.
I am glad Rubyslipper has become a groupleader. She brought her husband as some others did, too.
I had absolutely no time after the meeting!
I had only two days after the CA trip to get ready for Puerto Rico. I was still working in my son's place in Tyler near midnight. He took the disk down to KINKO's and they made the poster units just before they closed. I slept a couple of hours before I headed for the airport 120 miles away.
Had to change planes in Atlanta, GA. Arrived in San Juan early afternoon, the bus took us to Fajardo so we were in the hotel by 6 pm.
Then the "fun" started. Most people have not seen me for 5-20 years (I organized a similar meeting in November, 1984). However, this was a huge affair: 250 scientists from 24 countries (in contrast ours was 110 from 12 countries but on a shoe string budget). This one was a lavish affair,
Much to my pleasure, some groups attempted to continue in our foot steps although the official "party line" turned away from the straight and true in the nineties.
The closing remarks came as a surprise: no less than five speakers mentioned our efforts in 1984 and at least one (the major fund source) regretted that it did not continue that way.
I apologize for elaborating on this seemingly unrelated event. However, I see too many similarities. It will also will put large demands on my time in the next 5 months (full of deadlines). I will attempt to turn this leviathan away from its present course. It is an impossible task for one person but I think I will have help; both financial and personal help in the form of young researchers who are not satisfied with the present course of events. The research appears highly sophisticated and successful. But I learned with you RLS friends to look at the bottom line - the patients.
It is very clear that those patients, after twenty years are no better, and some of them are worse off. After spending billions of dollars in research, those doctors do not say any more (not often) that it is in their head, but either throw their hands up, or actually employ not the best available treatment for their patients while the research gives conflicting support.
Sorry, I really diverged. but I want you to understand that if I post less in the next few months why I am doing it. After 6months, who knows, possibly even the attitude of the RLS keadership may change.
ONE THING I WILL KEEP DOING! Since I do not give up easily. The on-line questionnaire will stay on until a considerable number accummulates which then will be evaluated. NOW these numbers and type of calculations are the one that will matter, as I stated in my talk. THEN we shall see how I could disperse the info.
ANOTHER: Since I will be no longer notified if someone writes a post to me, please notify me of that by private e-mail. I will always have time for you my cyber friends.
One more thing, if something interesting happens in my course of treatment/reaction I will also post that. I just will not be able to read this admittedly busy site regularly. Will miss you all.
UNTIL LATER MY FRIENDS,
I AND I HOPE YOU ALSO KNOW WHO YOU ARE!
The reaction of the RLS leadership was even more puzzling. Apparently nobody attended. The faculty was not notified. I only learned about it accidentally (!) Fortunately, I had a chance to talk with the chairman of the board of directors who appears to be a wise, reasonable person with RLS. I sent him the material.
I also talked with two Ph.D.'s who both impressed me. I have not sent them the material yet but definitely plan to do so.
I am glad Rubyslipper has become a groupleader. She brought her husband as some others did, too.
I had absolutely no time after the meeting!
I had only two days after the CA trip to get ready for Puerto Rico. I was still working in my son's place in Tyler near midnight. He took the disk down to KINKO's and they made the poster units just before they closed. I slept a couple of hours before I headed for the airport 120 miles away.
Had to change planes in Atlanta, GA. Arrived in San Juan early afternoon, the bus took us to Fajardo so we were in the hotel by 6 pm.
Then the "fun" started. Most people have not seen me for 5-20 years (I organized a similar meeting in November, 1984). However, this was a huge affair: 250 scientists from 24 countries (in contrast ours was 110 from 12 countries but on a shoe string budget). This one was a lavish affair,
Much to my pleasure, some groups attempted to continue in our foot steps although the official "party line" turned away from the straight and true in the nineties.
The closing remarks came as a surprise: no less than five speakers mentioned our efforts in 1984 and at least one (the major fund source) regretted that it did not continue that way.
I apologize for elaborating on this seemingly unrelated event. However, I see too many similarities. It will also will put large demands on my time in the next 5 months (full of deadlines). I will attempt to turn this leviathan away from its present course. It is an impossible task for one person but I think I will have help; both financial and personal help in the form of young researchers who are not satisfied with the present course of events. The research appears highly sophisticated and successful. But I learned with you RLS friends to look at the bottom line - the patients.
It is very clear that those patients, after twenty years are no better, and some of them are worse off. After spending billions of dollars in research, those doctors do not say any more (not often) that it is in their head, but either throw their hands up, or actually employ not the best available treatment for their patients while the research gives conflicting support.
Sorry, I really diverged. but I want you to understand that if I post less in the next few months why I am doing it. After 6months, who knows, possibly even the attitude of the RLS keadership may change.
ONE THING I WILL KEEP DOING! Since I do not give up easily. The on-line questionnaire will stay on until a considerable number accummulates which then will be evaluated. NOW these numbers and type of calculations are the one that will matter, as I stated in my talk. THEN we shall see how I could disperse the info.
ANOTHER: Since I will be no longer notified if someone writes a post to me, please notify me of that by private e-mail. I will always have time for you my cyber friends.
One more thing, if something interesting happens in my course of treatment/reaction I will also post that. I just will not be able to read this admittedly busy site regularly. Will miss you all.
UNTIL LATER MY FRIENDS,
I AND I HOPE YOU ALSO KNOW WHO YOU ARE! Jumpy Owl
JUMPY I WILL MISS YOU!!!
This is Jan
I don't know if you'll see this or not, but we've been through a lot together. I want you to know what you have done for me, Jumpy.
I'm a different person than I was when we first "met". You have made me re-examine myself many times. Though we haven't always agreed, I have learned so much from you--and have grown so much because of you and others!!! I will miss you, Jumpy!! The whole board will! But, maybe the torch has been passed for the time being! You have layed the groundwork. Now, it's up to the rest of us. We will not let you down! You have built a fire under some of us--and nothing will extinguish that fire! As I get older, I realize more and more how valuable friendship is. I count you as one of my dear friends, Jumpy. I hope you feel the same! Thank you for all you have done and we all will look forward to hearing from you!
Fondly,
Jan
I don't know if you'll see this or not, but we've been through a lot together. I want you to know what you have done for me, Jumpy.
I'm a different person than I was when we first "met". You have made me re-examine myself many times. Though we haven't always agreed, I have learned so much from you--and have grown so much because of you and others!!! I will miss you, Jumpy!! The whole board will! But, maybe the torch has been passed for the time being! You have layed the groundwork. Now, it's up to the rest of us. We will not let you down! You have built a fire under some of us--and nothing will extinguish that fire! As I get older, I realize more and more how valuable friendship is. I count you as one of my dear friends, Jumpy. I hope you feel the same! Thank you for all you have done and we all will look forward to hearing from you!
Fondly,
Jan
No one is alone who had friends.
-
Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
WE got side-tracked from the original question for our friend. Sometimes there is nothing else to do but sleep separately. Twin beds work for some so you are at least in the same room. Have you tried "rocking" in another room until the symptoms leave and then going to bed with your spouse? I am trying out a new massage pillow from Wal-Mart. It's around $13.00 and is contoured to fit your legs, slightly raising them and it has vibration and heat. Right now my legs are okay with the meds I am taking but I will have this to try on the nights when they don't work. It's a relatively inexpensive thing to try. RLS is nasty and the things that work now don't always work in the future. But keep us posted on your journey. We've all either been there or are there now.
Now, just in case Jumpy is reading this (or even if he isn't) the information he presented at the Long Beach forum was great. So many people found the information worthy of listening to because Jumpy is great at putting the info together. It was my first meeting with my good friend and I will miss him from this board. Hopefully he will come back because he will be missed. Jumpy, we have been through some tough times and now that I have met you (and got a real hug!) I appreciate you even more. Thank you for all you have done for us. I hope that the "newbies" will come to know how much we treasure your help.
Jan, you were definately missed. If anyone has the opportunity to go next year, please do.
Now, just in case Jumpy is reading this (or even if he isn't) the information he presented at the Long Beach forum was great. So many people found the information worthy of listening to because Jumpy is great at putting the info together. It was my first meeting with my good friend and I will miss him from this board. Hopefully he will come back because he will be missed. Jumpy, we have been through some tough times and now that I have met you (and got a real hug!) I appreciate you even more. Thank you for all you have done for us. I hope that the "newbies" will come to know how much we treasure your help.
Jan, you were definately missed. If anyone has the opportunity to go next year, please do.
online questionaire
I just joined this sight, I've been reading the RLS sight for years now. I signed up for the brain banka couple years ago, and am participating in the RLS survey. Is the survey the same thing as the questionaire you're talking about? Just curious.
Thx,
Shelley
Thx,
Shelley
Which survey
Hi Shelly,
Tell us more about the survey your apart of ....................There is one here by the famous Dr. Holly, aka Jumpyowl.......thath one?
Details are go here...................Can't wait to here what your doing and with whom?
Your welcome here. We're a great group of sleepy, stressed, pained, itching, twitching bunch of fun loving people..........LOL sound like a fun group HUH? Really we are always glad to have anyone that knows our life style, as strange as it usually is.
If you would like to I gather Quality of Life statements from people interested in sharing. I'll PM you on this site with more iformation.
I put together a few this year and took them to the National RLS Foundation Meeting this last month in Long Beach. The packets were given to all the keynote speakers and some others. I'd be glad to have your statement for next year. Look for an email from me.
Have a good one.
Tell us more about the survey your apart of ....................There is one here by the famous Dr. Holly, aka Jumpyowl.......thath one?
Details are go here...................Can't wait to here what your doing and with whom?
Your welcome here. We're a great group of sleepy, stressed, pained, itching, twitching bunch of fun loving people..........LOL sound like a fun group HUH? Really we are always glad to have anyone that knows our life style, as strange as it usually is.
If you would like to I gather Quality of Life statements from people interested in sharing. I'll PM you on this site with more iformation.
I put together a few this year and took them to the National RLS Foundation Meeting this last month in Long Beach. The packets were given to all the keynote speakers and some others. I'd be glad to have your statement for next year. Look for an email from me.
Have a good one.
Becat:
What I'm participating in is actually a "roundtable" discussion being led by Johns Hopkins. Every couple of months or so I get an e-mail asking a list of questions for me to answer and I have another person who doesn't have RLS answer the same questions for comparitive reasons I guess. Since joining the Harvard Brainbank I get something from Johns Hopkins a couple times a year asking my willingness to participate in different studies.
What I'm participating in is actually a "roundtable" discussion being led by Johns Hopkins. Every couple of months or so I get an e-mail asking a list of questions for me to answer and I have another person who doesn't have RLS answer the same questions for comparitive reasons I guess. Since joining the Harvard Brainbank I get something from Johns Hopkins a couple times a year asking my willingness to participate in different studies.