HEY EVERYONE,
I just wanted to say hello to all the new people in the forum. There have been alot of people comming in in the last few weeks. A couple of our dear welcommers are having some tough times right now. So I know once they are back on their feet they will be back to help you with any of your questions and daily aches and PAINS. I have been a member here for 7 months and it has made such a difference in my life, being able to come home from an upsetting doc visit and come here to vent not to mention the love,compassion and friendships Ive made has made my rls a little less painful. Many long nights of NIGHTWALKING and I finally found a place where there is usually someone doing the same thing and we can hook up in the chat room. I really do believe laughter is the best medicine and I am grateful for you all. So WELCOME TO EVERYONE you have found a soft place to fall here~~~~~~~~~~~~~~~~~~~~~Lyndarae
BIG WELCOME TO ALL THE NEW PEOPLE !!!!!!!!!
I just found this website as I believe others found it out of desperation of trying to find others who know of this disease. I was diagnosed in December 2004 after many misdiagnoses before. It has been such a struggle to try to talk to anyone as they have never heard of this disease. I am very thankful I have found this discussion group and see where many people have posted their problems, concerns and frustrations. I am now on my 3rd medicine to try to relieve the jerking of the limbs. The first two did not help….Sinamet and Mirapex. I was put on Requip this past week and hoping to see if this helps. My RLS is in both legs and arms. It is sometimes on both sides and sometimes only one side of the body. I have read many postings in the past three hours which have been helpful and made me feel some comfort in knowing I am not crazy. The jerking, pain and sleepliness is every night now and it is really getting to me. I have literally cried the last two nights as it is so painful at times. It seemed like I only had it occasionally until around November 2004 when it got to be nightly. I hope I can receive the assurance from others in this discussion board when I am down and need a shoulder to cry on and vice versa. My love and prayers to each person here.
I hope to go for now and maybe just maybe go to sleep.
Margie
I hope to go for now and maybe just maybe go to sleep.
Margie
Margie
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Guest
Well, I don't know how long I've had RLS. Not sure that's what I do have as it doesn't really sound like what I read here, but some of the things sound like they fit and the neurologist is insistant that it's RLS.
Two years ago I started my journey. I was exhausted. My legs were weak and shaky in the day time. My hands would "tremor" very fine though. I'd get a crawling sensation on my head and face. And my cognition was bad.
The first neurologist wrote me off as anxitety. So I was treated for depression. We did discover I was bipolar because of what anti-depressants do to bipolar people.
So then we opperated for 18 months on trying to treat my mania.
Until I finally said this is neurological. I made an appointment for a second oppinion with a neurologist who is one of the top docs in the US, but had to wait 12 weeks to get in. In the mean time, I became so sleep deprived that I was beginning to look like I'd aquired MS or Parkinsons and resigned from my job as my cognitive functioning was beginning to make me a liability.
So finally the neuro appointment. RLS. But the neurologist won't treat me because my GP is the one who diagnosed the bipolar and until I get that diagnosis confirmed by a psychiatrist and get treated by a psychiatrist he won't treat me.
Well, I just fired the psychiatrist the neurologist recommended today. She overmedicated me and then tried to tell me I was crazy. I'm back with my GP and, of course, feeling much better.
Got a follow up appointment with the neurologist on 2/9. The psychiatrist put me on klonopin. It's not working too well. If it's not sending me into the throws of depression, it's not letting me sleep. The ER gave me ambien in december. I think I got about three days of great sleep on it.
I'm better than I was this fall where I was up on average 7 times a night. I sleep with soap. I'm 34 and female and hormones affect me terribly. I'm at that time of month where I'm not getting much sleep so I'm tired.
I'm convinced that sleep has a lot to do with weight. I never stop moving, and I hardly eat anything and yet I can't loose any weight to save my life, yet when I got those three day of great sleep on the ambien I lost 6 pounds. Go figure.
Anyway, I'm glad to have found a place to talk to others about this. Seems like finding out is only the beginning though. Now we try to find out what works.
Thanks for listening,
Jamie
Two years ago I started my journey. I was exhausted. My legs were weak and shaky in the day time. My hands would "tremor" very fine though. I'd get a crawling sensation on my head and face. And my cognition was bad.
The first neurologist wrote me off as anxitety. So I was treated for depression. We did discover I was bipolar because of what anti-depressants do to bipolar people.
So then we opperated for 18 months on trying to treat my mania.
Until I finally said this is neurological. I made an appointment for a second oppinion with a neurologist who is one of the top docs in the US, but had to wait 12 weeks to get in. In the mean time, I became so sleep deprived that I was beginning to look like I'd aquired MS or Parkinsons and resigned from my job as my cognitive functioning was beginning to make me a liability.
So finally the neuro appointment. RLS. But the neurologist won't treat me because my GP is the one who diagnosed the bipolar and until I get that diagnosis confirmed by a psychiatrist and get treated by a psychiatrist he won't treat me.
Well, I just fired the psychiatrist the neurologist recommended today. She overmedicated me and then tried to tell me I was crazy. I'm back with my GP and, of course, feeling much better.
Got a follow up appointment with the neurologist on 2/9. The psychiatrist put me on klonopin. It's not working too well. If it's not sending me into the throws of depression, it's not letting me sleep. The ER gave me ambien in december. I think I got about three days of great sleep on it.
I'm better than I was this fall where I was up on average 7 times a night. I sleep with soap. I'm 34 and female and hormones affect me terribly. I'm at that time of month where I'm not getting much sleep so I'm tired.
I'm convinced that sleep has a lot to do with weight. I never stop moving, and I hardly eat anything and yet I can't loose any weight to save my life, yet when I got those three day of great sleep on the ambien I lost 6 pounds. Go figure.
Anyway, I'm glad to have found a place to talk to others about this. Seems like finding out is only the beginning though. Now we try to find out what works.
Thanks for listening,
Jamie
Hi, Margie and Jamie--
Sorry you need to be here, but glad you found us. Sounds like tough times for both of you, but no matter what the extent of our specific conditions, most here seem to agree that having someone UNDERSTAND is a huge help. A relief emotionally, if not physically.
I look forward to getting to know you better. Welcome to the forum.
Sara
Sorry you need to be here, but glad you found us. Sounds like tough times for both of you, but no matter what the extent of our specific conditions, most here seem to agree that having someone UNDERSTAND is a huge help. A relief emotionally, if not physically.
I look forward to getting to know you better. Welcome to the forum.
Sara
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Guest
Sara-------Thanks so much for the welcome,too! I just got back from a dance and I am sure hoping that tonight will be better. I already learned in the short time --- 
---24 hours----I have been on here----to take pain medicine before my RLS gets really bad......I am going to attempt this tonight.
Jamie------It is great to know there is a place we all with RLS can come and lend a shoulder or vent our feelings. If you haven't yet......read some of the various postings....it sure has helped me already in realizing I am not the only one in the boat.
Love to all and my prayers are with each of you
---24 hours----I have been on here----to take pain medicine before my RLS gets really bad......I am going to attempt this tonight.
Jamie------It is great to know there is a place we all with RLS can come and lend a shoulder or vent our feelings. If you haven't yet......read some of the various postings....it sure has helped me already in realizing I am not the only one in the boat.
Love to all and my prayers are with each of you
Margie
Margie--
I'm thankfully still in a mild enough stage of RLS that I do not have to take medication, but my "relief" is actually going to bed (I always hate to say that to you folks who suffer so much worse than I do and are not able to sleep.
)
But the PREMISE you brought up is the same for me with going to bed as with you taking medications... the sooner I go to bed, the more likely I am to sleep. It's hard on my dear old night-owl husband and older son, who like to stay up late. But I've learned that if I don't do what I can to take care of myself as soon as I realize I'm in for symptoms (in my case, go to bed, in your case, take medications), it only makes it worse in the long run. It's a good lesson, Margie, and one that had made my sleep better and my life easier.
Hope it was a nice dance.
Sara
I'm thankfully still in a mild enough stage of RLS that I do not have to take medication, but my "relief" is actually going to bed (I always hate to say that to you folks who suffer so much worse than I do and are not able to sleep.
)
But the PREMISE you brought up is the same for me with going to bed as with you taking medications... the sooner I go to bed, the more likely I am to sleep. It's hard on my dear old night-owl husband and older son, who like to stay up late. But I've learned that if I don't do what I can to take care of myself as soon as I realize I'm in for symptoms (in my case, go to bed, in your case, take medications), it only makes it worse in the long run. It's a good lesson, Margie, and one that had made my sleep better and my life easier.
Hope it was a nice dance.
Sara
HELLO EVERYONE!!!!! Im an oldtimer here and I have been busy working on my sobrity the last month and am afraid I havent kept up with the forum,so I'm looking forward to getting to know you all better. This family is the best and have saved my butt many times. MY best to everyone~~~~~~~~~~~~~~Lyndarae
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Well my friends, I believe I'm in for a real bad night. The muscles in my butt are throbbing and the backs of both thighs. Feels as if a 50 lb weight is sitting on both sides. My ankles feel like they're breaking. Wish me luck tonight. I really don't mean to complain so much, and I DO realize I have to learn how to live with this, but why? Why does there have to be pain?
Beware the Penguin
Awwww, Dawn.... so sorry it was a bad night. But don't apologize about talking about it. That's why we're here!!! Because this is ONE place where it doesn't just sound like "whining".
Do you notice your RLS is worse when you're stressed? I don't usually, but a lot of people on the forum do. (Mine's worse, I THINK, "that time of the month", though, which is a time of "physical stress" obviously.) I know you have lots on your mind this weekend, so I wonder if that's contributing???
I'm nervous this morning about my RLS, because I've been having in the mornings a lot this week (and have it now
)... and tomorrow I have a two-hour car ride to Easter dinner in a dress and stockings, and I probably won't get to drive there (certainly won't get to drive the WORSE two hours back up here, when I'll be tired, gaining elevation, and up later than normal, because my hubby ALWAYS does the night driving). 
At least today, I have mostly "on my feet" activities, and lots to keep my mind busy, since I'm cooking our big Easter dinner here. But I'm afraid that every time I sit down, it's going to be bad like right now.
And I was up late last night and up early this morning, so I feel like I WANT to rest some during the day. <sigh>
Oh, well.... at least YOU ALL understand.
Hugs--- Sara
Do you notice your RLS is worse when you're stressed? I don't usually, but a lot of people on the forum do. (Mine's worse, I THINK, "that time of the month", though, which is a time of "physical stress" obviously.) I know you have lots on your mind this weekend, so I wonder if that's contributing???
I'm nervous this morning about my RLS, because I've been having in the mornings a lot this week (and have it now
)... and tomorrow I have a two-hour car ride to Easter dinner in a dress and stockings, and I probably won't get to drive there (certainly won't get to drive the WORSE two hours back up here, when I'll be tired, gaining elevation, and up later than normal, because my hubby ALWAYS does the night driving).
At least today, I have mostly "on my feet" activities, and lots to keep my mind busy, since I'm cooking our big Easter dinner here. But I'm afraid that every time I sit down, it's going to be bad like right now.
And I was up late last night and up early this morning, so I feel like I WANT to rest some during the day. <sigh>
Oh, well.... at least YOU ALL understand.
Hugs--- Sara
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Oh Sara,
I DO understand! Last night I took 3 trazadone and my pain med (sorry I can't remember the name of it) and I "jerked" real bad for about 1/2 hour before I got knocked out. But I DO have the pain in the a.m. as well as night. I know too that we all have our good days and bad days just like "normal" people.
I don't envy your drive tomorrow. I know that I am much more comfortable driving than riding. Gives my legs something to do. Sure, it's still hard to get outta the car when you drive for a long time, but it's so much worse when you're riding.
I was wondering about the higher the anxiety to worse it could get thingy. As someone stated in one of these forums, stress causes a lot of EVERYTHING BAD in all people.
I hope everyone will have a nice, relaxing Happy Easter.
Much love
Dawn
I DO understand! Last night I took 3 trazadone and my pain med (sorry I can't remember the name of it) and I "jerked" real bad for about 1/2 hour before I got knocked out. But I DO have the pain in the a.m. as well as night. I know too that we all have our good days and bad days just like "normal" people.
I don't envy your drive tomorrow. I know that I am much more comfortable driving than riding. Gives my legs something to do. Sure, it's still hard to get outta the car when you drive for a long time, but it's so much worse when you're riding.
I was wondering about the higher the anxiety to worse it could get thingy. As someone stated in one of these forums, stress causes a lot of EVERYTHING BAD in all people.
I hope everyone will have a nice, relaxing Happy Easter.
Much love
Dawn
Beware the Penguin
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terryanderson
new guy
hello!! i'm so glad i found this place.i was beginning to think that i was a victem of a rare disease.i live in rural eastern kentucky and the doctors around here have no idea what rls is.if you try to explain to them what it is,they puff up and think you think you know more about medicine than they do.nothing could be farther from the truth.i have been suffering from this affliction for several years and it has progressively gotten worse.i can't find a doctor to treat me in this because prescription drug abuse is so rampant that doctors are afraid to perscribe any type of controlled substance and anyone in need of these medications instantly becomes a drug seeker.i wasn't sure what was wrong with me at first,so i began to educate myself about my symptoms.i have a lab standard case of rls and theres not a doctor around here who has ever heard of it.the quality of life has become unacceptable for me.all the years of pain and sleepness nights has completely ruined my health.i don't know how much longer i can last.does anyone have any suggestions for me?please help.
hello and welcome, Are you able to go to a bigger city to see a doc??? Are there any sleep clinics in the area???? It sounds like you are really having a rough time. There are alot of women in here that will jump in and give you some sites to find docs in your area and all sorts of good information. I have been so busy lately Im not in here too much aNY more but I know someone that knows what they are talking about will be able to get some info for you. I just wanted to let you know you have found the right place to be. We are all in this together and help each other through long nights and days. So hang in there and nice to meet you~~~~~~~~~~~~~~~Lyndarae