Hello fellow RLS sufferers. I recently found this site and have read the discussion board 2X now. I feel empathy for many of you as I suffer with PLMD (the twitches during sleep). My dad has restless legs and I suspect also has PLMD. So far RLS seems to be a minor problem for me. I have trouble sitting still for very long, but no actual pain.
I was diagnosed with sleep apnea (OSA mild) and PLMD (severe) at St. Luke's Hospital Sleep Lab in KC, MO spring of '03. I had suffered for many years with poor sleep and never felt rested, and had no idea I had either one of these sleep disorders. But I definitely knew something was very wrong and disrupting my sleep.
The sleep lab doctor put me on 600 mg Neurontin and .5 Klonopin at bedtime, actually I take them about an hour before bedtime as they take awhile to work. (I tried Mirapex and never slept a wink all night.) I feel fatigue during the day and sometimes very sleepy which I just try to ignore. Since starting these two meds I was able to get off Ambien (10 mg) and Restoril (7.5-15 mg) most nights. On occasion I need to take one or both to get to sleep or stay asleep.
I learned that the sleep meds tend to keep one in the lighter stages of sleep (stage 1-2) and reduce the REM and stage 4 sleep cycles which means we don't feel rested the following day. So I am happy to off of them most nights.
I also use a C-PAP machine and mask for the obstructive sleep apnea and that has helped me sleep better with fewer awakenings. To tell the truth I do NOT enjoy the mask at all, but don't like to complain about something that has helped. I am aware that many people upon trying the C-PAP refuse to wear it because it is so uncomfortable.
Thank you everyone for sharing as we learn from each other. I am praying that there is more help out there for everyone who suffers from these disabling conditions. Sometimes it seems very slow and a process of trial and error.
I am not happy with my quality of sleep, but it is better than before I had the sleep lab. The sleep lab was definitely worth the expense (I had to pay for it twice), at least I now know more than before why I could not get a good night's sleep.
Until next time,
New to this board
New to this board
Thanks for listening, Sue
Hi Sue. Welcome and thank you for sharing your story with us. Not many people can understand how relieved we are, even when we just get SOME sleep. 
You're in good company.
I'd like to suggest that you NOT completely rule out the possibility of RLS. If I read your post correctly, you said you don't think you have it because you don't have pain. You certainly do NOT have to have pain to have RLS. The major symptom of RLS is restlessness...the incredible urge to move the legs, when resting. Whether that be in bed, sitting in a car or watching tv. It can take place in other limbs and some even have it in their butts. It's very individual and everyone describes the feeling a little differently but the one common thread amongst RLS sufferers is the unquenchable need to move. Just something to keep in mind.
Glad you found us.
You're in good company.
I'd like to suggest that you NOT completely rule out the possibility of RLS. If I read your post correctly, you said you don't think you have it because you don't have pain. You certainly do NOT have to have pain to have RLS. The major symptom of RLS is restlessness...the incredible urge to move the legs, when resting. Whether that be in bed, sitting in a car or watching tv. It can take place in other limbs and some even have it in their butts. It's very individual and everyone describes the feeling a little differently but the one common thread amongst RLS sufferers is the unquenchable need to move. Just something to keep in mind.
Glad you found us.
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
Welcome Sue!
Hi Sue!
I'm Jan. My bio is on page 1/New to RLS/New Members and Current Members Please Help.
Sole said:
She is exactly right. I've had RLS for approximately 20 years and have just now started to experience pain. I have had the other symptoms increase gradually during the past 20 years, starting with periodic restlessness to not even being able to sit through a movie or having to walk the floor all night long. I also have PLMD. I don't think I've ever mentioned that one before. My husband says he can lie in bed after I fall asleep and count to five and my legs will kick. He has done that for 30 minutes before. . . every five seconds. I don't do that EVERY night. But, it does happen. I have had a sleep study done, and it happened then. I'm really glad you found us. Sorry you have these problems, but there are so many wonderful people on this site. You've already met one--Sole. She's a sweetie! And, I'm a pretty good listener!! We all have our own special abilities. Just feel free to ask anything or vent or whatever. Someone will see your post, and before you know it, you'll get an answer, a shoulder, or an ear--whatever you need.
Jan
I'm Jan. My bio is on page 1/New to RLS/New Members and Current Members Please Help.
Sole said:
I'd like to suggest that you NOT completely rule out the possibility of RLS. If I read your post correctly, you said you don't think you have it because you don't have pain. You certainly do NOT have to have pain to have RLS. The major symptom of RLS is restlessness...the incredible urge to move the legs, when resting. Whether that be in bed, sitting in a car or watching tv. It can take place in other limbs and some even have it in their butts. It's very individual and everyone describes the feeling a little differently but the one common thread amongst RLS sufferers is the unquenchable need to move. Just something to keep in mind.
She is exactly right. I've had RLS for approximately 20 years and have just now started to experience pain. I have had the other symptoms increase gradually during the past 20 years, starting with periodic restlessness to not even being able to sit through a movie or having to walk the floor all night long. I also have PLMD. I don't think I've ever mentioned that one before. My husband says he can lie in bed after I fall asleep and count to five and my legs will kick. He has done that for 30 minutes before. . . every five seconds. I don't do that EVERY night. But, it does happen. I have had a sleep study done, and it happened then. I'm really glad you found us. Sorry you have these problems, but there are so many wonderful people on this site. You've already met one--Sole. She's a sweetie! And, I'm a pretty good listener!! We all have our own special abilities. Just feel free to ask anything or vent or whatever. Someone will see your post, and before you know it, you'll get an answer, a shoulder, or an ear--whatever you need.
Jan
Thank YOU
Dear Sole and jan3213.
Thanks for your replies, yes it does help to know others care and are willing to share what we have discovered on this journey of RLS. Hopefully there will be light and hope spread here they will help everyone of us sleep better.
I probably do have RLS, I didn't mean to imply that I don't have it. It's just that at this moment in time, it's not a great trial to me. As I wrote to Sole privately (perhaps I should post that on the main board) I think I am developing perhipheral neuropathy. On second thought I don't know how to retrieve that private message. Sole perhaps you could post it here. It might be helpful to those others who have questions about that disorder.
Have a contented day. (No spell check here?)
Thanks for your replies, yes it does help to know others care and are willing to share what we have discovered on this journey of RLS. Hopefully there will be light and hope spread here they will help everyone of us sleep better.
I probably do have RLS, I didn't mean to imply that I don't have it. It's just that at this moment in time, it's not a great trial to me. As I wrote to Sole privately (perhaps I should post that on the main board) I think I am developing perhipheral neuropathy. On second thought I don't know how to retrieve that private message. Sole perhaps you could post it here. It might be helpful to those others who have questions about that disorder.
Have a contented day. (No spell check here?)
Thanks for listening, Sue
Hi Sue,
You didn't private message me. The post you wrote on foot neuropathy is in the "Foot Neuropathy" thread, in the General Forum. I've copied your post below.
You didn't private message me. The post you wrote on foot neuropathy is in the "Foot Neuropathy" thread, in the General Forum. I've copied your post below.
Hi Sole,
Yes, I think I am in the beginning stages of developing peripheral neuropathy. I'm fairly sure of this because my dad suffers with peripheral neuropathy in his feet so when my feet started tingling, stinging, feeling hot (they were always cold before this), uncomfortable, and restless, I recognized that I am having what he has had for years. In my case I assume it is herediary. I also have PLMD and posted to the New to RLS discussion board earlier this evening.
Neurontin helps him with this problem, but he still has symptoms. He takes 300 mg am and pm. It also makes him sleepy during the day, especially after he takes it in the am with b'fast. So since he is 86 yrs young, he goes back to bed.
Hope this helps.
_________________
Thanks for listening, Sue
Sole
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."
-
Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I also have peripheral neuropathy and it sure isn't fun. When you add RLS to the mix, I would just as soon throw out the batter because the cake will be awful. The PN started about 5 years ago and I was tested for all sorts of stuff. It wasn't until I went to a new doctor for the RLS that I learned about PN. It was just like when you thought you were crazy because no one understood what you were going through with the RLS. Then you find a site like this and feel such relief--someone understands!!! That's how it was when I described my other symptoms and she gives me her clinical diagnosis. I am interested in the pain aspect of RLS. For those who have pain; is it all the time? Is it an achy feeling or definite pangs? There are times that I have pain. It is mainly in my joints, lower back and now my hands. I don't know if it is connected to RLS, PN, arthritis or what. I go to a doctor for a shoulder injury I received several months back that is giving me trouble again, so I want to discuss it with him. Any information my friends can give me will be greatly appreciated. In the meantime, hang in there...keep us posted on your journey. We're here for each other.
Welcome, Sue:
Belatedly I also join these emphatic and compassionate ladies. There is not much left to say but let me say them.
It is interesting that you are "ruling out" (actually not, you just do not think is a big problem right now) RLS because you have no pain. For many years RLS was thought to be painless. Even now on this Discussion Board you will read about doctors who state that if there is pain it is NOT RLS.
Of course, they are wrong.
Anyway, you do have PLMD and the majority of RLS patients also have PLM (it is not true the other way around). And you have another cause of sleeping disorder, sleep apnea. You could even have narcolepsy.
If you do have some neuropathy than you will find Neurontine helpful. As you may know they use it for patients with shingles who have stubborn nerve pain after the disease.
You wrote:
You are right, many sleeping draughts or medication are such. There is one exception, though. You can read about it in the narcolepsy thread.
Xyrem is a short-acting sleep drug that actually preserves and legthens the so-called slow wave sleep stages, i.e. stages 4 and 5. And these are the ones during which the body repairs itself.
Wishing you the best!
It is interesting that you are "ruling out" (actually not, you just do not think is a big problem right now) RLS because you have no pain. For many years RLS was thought to be painless. Even now on this Discussion Board you will read about doctors who state that if there is pain it is NOT RLS.
Of course, they are wrong.
Anyway, you do have PLMD and the majority of RLS patients also have PLM (it is not true the other way around). And you have another cause of sleeping disorder, sleep apnea. You could even have narcolepsy.
If you do have some neuropathy than you will find Neurontine helpful. As you may know they use it for patients with shingles who have stubborn nerve pain after the disease.
You wrote:
I learned that the sleep meds tend to keep one in the lighter stages of sleep (stage 1-2) and reduce the REM and stage 4 sleep cycles which means we don't feel rested the following day. So I am happy to off of them most nights.
You are right, many sleeping draughts or medication are such. There is one exception, though. You can read about it in the narcolepsy thread.
Xyrem is a short-acting sleep drug that actually preserves and legthens the so-called slow wave sleep stages, i.e. stages 4 and 5. And these are the ones during which the body repairs itself.
Wishing you the best!
Jumpy Owl
RLS pain description - Ruby
Hi Ruby - this is Jan
I'm going to try to describe the pain I have with RLS. My pain occurs mostly in the morning when I first get out of bed. I can hardly walk - the pain is mostly in my joints, like I think arthritis would be. I feel stiff and have a deep muscle ache. I also experience pain when turning over in bed. I have trouble walking up and down our stairs (we live in a tri-level). After I'm up for about 2 hours, the pain subsides somewhat. I also experience pain in my upper torso and hands. Stress definitely plays a part in my pain. I also experience pain after riding in the car for even as short a time as 1 1/2 hours (a trip to St. Louis from our home in Mt. Vernon, Il). But, it doesn't last that long. Sometimes, I feel like an 80 year old woman. Just a year ago, I was exercising all the time, and bouncing out of bed in the morning. As I said, I do think stress has a lot to do with my pain. And, I have been under a great deal of stress lately. We'll see what happens when my life settles down. And, as we all know, we can't always control life situations, nor do we always know the WHOLE story of what is really going on in someone's life. So, stress is a natural part of life. We just do the very best we can to handle everything. By the way, I hope I explained my pain well enough, Ruby, and thanks for what you said in another thread! I appreciate it!!!
Jan
I'm going to try to describe the pain I have with RLS. My pain occurs mostly in the morning when I first get out of bed. I can hardly walk - the pain is mostly in my joints, like I think arthritis would be. I feel stiff and have a deep muscle ache. I also experience pain when turning over in bed. I have trouble walking up and down our stairs (we live in a tri-level). After I'm up for about 2 hours, the pain subsides somewhat. I also experience pain in my upper torso and hands. Stress definitely plays a part in my pain. I also experience pain after riding in the car for even as short a time as 1 1/2 hours (a trip to St. Louis from our home in Mt. Vernon, Il). But, it doesn't last that long. Sometimes, I feel like an 80 year old woman. Just a year ago, I was exercising all the time, and bouncing out of bed in the morning. As I said, I do think stress has a lot to do with my pain. And, I have been under a great deal of stress lately. We'll see what happens when my life settles down. And, as we all know, we can't always control life situations, nor do we always know the WHOLE story of what is really going on in someone's life. So, stress is a natural part of life. We just do the very best we can to handle everything. By the way, I hope I explained my pain well enough, Ruby, and thanks for what you said in another thread! I appreciate it!!!
Jan