Oh, Jed, Diane - I so know how you feel. I've been so depressed with it all lately, I've been seriously considering checking into the hospital. Especially since my primary doc won't change my antidepressants to something more RLS friendly because "you aren't depressed." Yeah right.
It's just so hard to be so sleep deprived that I can't function. I barely get anything done at all on an average day.
Those TV commercials make this seem like a minor annoyance instead of a major disruption of everything.
Keep on plugging away. You'll feel better eventually. But it does seem to take time to get the right meds worked out.
Susan
Broke down crying at a concert last night
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SquirmingSusan
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SquirmingSusan wrote:
It's just so hard to be so sleep deprived that I can't function. I barely get anything done at all on an average day.
Susan: You took the words out of my mouth. Other than us here, nobody understands this.
I might be a bit better off than you because I'm able to function ok at work, but I've been starting 1-2 hours late each day the last few weeks. A while after I arrive, I get functioning ok, not my previous multi-tasking self, but decent enough. My coworkers don't understand that as soon as I get home, I am DONE. I go into about a 4 hour "coma-nap" until my hubby forces me to get up for an hour or so before bed. My coworkers see me functioning semi-ok during the day, so they find it hard to believe that I'm not like that in the evenings and on the weekends. About the only thing that gives me any credibility (in their eyes) is that my neurologist is sending me to Mayo Clinic.
Keep trying! I didn't realize I was sleep deprived until I started taking naps every day, during my lunch break. I turned to this discussion board and, after reading many testimonials about Ivory Soap, I tried it. I put a bar in my bed -- slept for 8 1/2 hours, right through my alarm! I now believe that my jerking legs had been partially waking me throughout the night, many many times -- once the jerking stopped, I slept. Ivory Soap is a mystery, but it works.
I also discovered how much reducing caffeine stops my rls symptoms during the evening. I only drink coffee at work so, after about a week at home without caffeine, I realized that my symptoms were greatly reduced.
When I do have bad symptoms, I take one or two Tylenol 3's. Takes about half an hour to work, but it completely stops my symptoms. This, too, was a remedy that I discovered by mistake -- I took the T3's for something else and noticed that my legs were fine.
You just have to keep trying different things. But definitely try the Ivory Soap in bed.
Hang in there.
I also discovered how much reducing caffeine stops my rls symptoms during the evening. I only drink coffee at work so, after about a week at home without caffeine, I realized that my symptoms were greatly reduced.
When I do have bad symptoms, I take one or two Tylenol 3's. Takes about half an hour to work, but it completely stops my symptoms. This, too, was a remedy that I discovered by mistake -- I took the T3's for something else and noticed that my legs were fine.
You just have to keep trying different things. But definitely try the Ivory Soap in bed.
Hang in there.
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SquirmingSusan
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Diane, why does your husband wake you up from your "coma-nap"? Do you want him to, or does he just think that for some reason you "should" get up for an hour before bedtime? What if he would just let you sleep?
I tell my family not to mess with me if I'm asleep. Not that they listen, they're always waking me up to eat. I'm too fat already, I need my sleep more than I need food!
It seems like first we need to work out getting rid of the creepy-crawlies. Then we have to figure out how to sleep when our circadian rhythms are completely out of sinc with the rest of the world. Or at least figure out when to sleep so that we can be involved in as much as possible.
Sleep is sacred to me. I hate it when people mess with my sleep.
Susan
I tell my family not to mess with me if I'm asleep. Not that they listen, they're always waking me up to eat. I'm too fat already, I need my sleep more than I need food!
It seems like first we need to work out getting rid of the creepy-crawlies. Then we have to figure out how to sleep when our circadian rhythms are completely out of sinc with the rest of the world. Or at least figure out when to sleep so that we can be involved in as much as possible.
Sleep is sacred to me. I hate it when people mess with my sleep.
Susan
broke down crying at a concert last night
Hey Susan I am with you regarding sleep. My husband is very considerate. If I am sleeping he does not bother me as he knows my sleep habits are not always good. If he did wake me up, It would take me a long time to go back to sleep.
Charlene
Taking one day at a time
Taking one day at a time
Susan, my husband means well. I make it a point to only take my coma naps on the sofa and only sleep in the bed at night. I wake up so slowly and I'm so delirious that figuring out what room I am in helps me know whether it's morning or not. He knows if I don't wake up in our bed then I'll never get up for work!
I also don't take my coma naps in bed because one of our dogs is always by my side. If I went up to bed for a coma nap, he'd skip supper just to stay by my side. When I nap in the family room, he'll leave me to eat his supper where he can still watch me from the kitchen. Then he hops back on the sofa with me. Dogs are the best!!!
I also don't take my coma naps in bed because one of our dogs is always by my side. If I went up to bed for a coma nap, he'd skip supper just to stay by my side. When I nap in the family room, he'll leave me to eat his supper where he can still watch me from the kitchen. Then he hops back on the sofa with me. Dogs are the best!!!
Hi everyone. Just spent 3 full days doing nothing but sleeping, so have some reading to catch up on.
The first time I realized I was sleep deprived was when I figured out I was sleep walking. Couldn't lay down because of legs so ended up doing things I never remembered doing (i.e. found pair of scissors in glass of pop
) I got to point where wonder if cutting off legs and being in wheelchair would be worth getting rid of this horrible illness. I PRAY[i] it doesn't get passed to any of my children or grandchildren. I also found that at its peak a couple ibuprofen help calm them down a little, and at that point any little bit helps. Tried the support hose, I think it helped, THANKS.
I am going through worst bout with all symptoms and side effects of my rls since I have had it. Diagnosed around 1996. My husband has just realized a whole lot about rls (think never tried to understand or realize how much we go through to deal with it)
Enough going on and on. Just wanted to mention Ibuprofen, support hose, and the need to sleep no matter what time of day. Get it while you can (no more feeling guilty about it for me) and tell people not to wake you (if situation allows) and turn off phone if possible.
The first time I realized I was sleep deprived was when I figured out I was sleep walking. Couldn't lay down because of legs so ended up doing things I never remembered doing (i.e. found pair of scissors in glass of pop
) I got to point where wonder if cutting off legs and being in wheelchair would be worth getting rid of this horrible illness. I PRAY[i] it doesn't get passed to any of my children or grandchildren. I also found that at its peak a couple ibuprofen help calm them down a little, and at that point any little bit helps. Tried the support hose, I think it helped, THANKS.
I am going through worst bout with all symptoms and side effects of my rls since I have had it. Diagnosed around 1996. My husband has just realized a whole lot about rls (think never tried to understand or realize how much we go through to deal with it)
Enough going on and on. Just wanted to mention Ibuprofen, support hose, and the need to sleep no matter what time of day. Get it while you can (no more feeling guilty about it for me) and tell people not to wake you (if situation allows) and turn off phone if possible.
Sometimes feel like throwing something at TV when see that lady all relaxed reading book, like every thing's great. I guarantee she does not have rls. Tried Requip, Made legs (jerking, creepy crawlies) about 75% worse than they were.Those TV commercials make this seem like a minor annoyance instead of a major disruption of everything.
Sorry haven't posted but been pretty screwed up.
Something weird going on with me. My rls is virtually nonexistent.
My Dr. had me trying all these different meds for bipolar disorder,depression and the rls (Depakote, Reisperdal,gabapentin,clonazepam,prozac, and others I don't recall right now) Any way, I was so messed up, lost 3 days, throwing up constantly, brain function basically nonexistent, crying all the time, felt like I was going to die. So I tool my self off all the meds.
I can now sit in a car with no episodes, sit on couch (prior was only on floor), in chairs, sleep with no incidents with taking only .5mg Mirapex before bed. I don't understand what's going on. It was SO SEVERE prior to med experiments. Dr. is baffled also, but pleased. He is sending me to see psychologist. He also has had me on sick leave from work for about 6 wks now and for at least another 3.
Still having major mood swings. Taking clonazepam for the anxiety, which is anytime I have to go anywhere. Mood swings more frequent and depression more severe when it hits. Can't wait to see new Dr. and maybe get some answers or help with current issues.
Regarding the car problem I had. If I was driving I would not have a leg problem but if I was a passenger I would have to basically double up on pills to keep legs calm. Has anyone else ever heard of this or experienced it? Can anyone explain why the difference between driving and being a passenger?
jed
Something weird going on with me. My rls is virtually nonexistent.
My Dr. had me trying all these different meds for bipolar disorder,depression and the rls (Depakote, Reisperdal,gabapentin,clonazepam,prozac, and others I don't recall right now) Any way, I was so messed up, lost 3 days, throwing up constantly, brain function basically nonexistent, crying all the time, felt like I was going to die. So I tool my self off all the meds.
I can now sit in a car with no episodes, sit on couch (prior was only on floor), in chairs, sleep with no incidents with taking only .5mg Mirapex before bed. I don't understand what's going on. It was SO SEVERE prior to med experiments. Dr. is baffled also, but pleased. He is sending me to see psychologist. He also has had me on sick leave from work for about 6 wks now and for at least another 3.
Still having major mood swings. Taking clonazepam for the anxiety, which is anytime I have to go anywhere. Mood swings more frequent and depression more severe when it hits. Can't wait to see new Dr. and maybe get some answers or help with current issues.
Regarding the car problem I had. If I was driving I would not have a leg problem but if I was a passenger I would have to basically double up on pills to keep legs calm. Has anyone else ever heard of this or experienced it? Can anyone explain why the difference between driving and being a passenger?
jed
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ViewsAskew
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The difference for driving is that your brain is much more engaged. We all know that in many cases (not all) we can stop RLS in its tracks when we get mentally engaged in something. That's sort of the premise of The RLS Rebel (Jill Gunzel - wrote a book and has a website of the same name).
It very well could be that some of the drugs your doc initially tried - like Prozac - worsened the RLS. Anti-depressants often do. It may have taken awhile to get the drugs out of your system. By stopping everything, you allowed your body to get back to normal. It's probably important to know what you tried so if you need to try anything in the future, you can look at that and see if there were any patterns.
Glad the RLS is under control, Jed.
It very well could be that some of the drugs your doc initially tried - like Prozac - worsened the RLS. Anti-depressants often do. It may have taken awhile to get the drugs out of your system. By stopping everything, you allowed your body to get back to normal. It's probably important to know what you tried so if you need to try anything in the future, you can look at that and see if there were any patterns.
Glad the RLS is under control, Jed.
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.
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sugbrendas
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The only time i can remember sleeping alot and being tired was when i was over medicated.
Did your Doc recently add a med to your regime?
I know when i go through a rough spot and they add a med it's like i have to write a note to be careful and eventually wean myself off of the new one cause I usaully get over whatever it is that rocks my RLS world apart.
just a thought
Did your Doc recently add a med to your regime?
I know when i go through a rough spot and they add a med it's like i have to write a note to be careful and eventually wean myself off of the new one cause I usaully get over whatever it is that rocks my RLS world apart.
just a thought
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
jed wrote:...I can now sit in a car with no episodes, sit on couch (prior was only on floor), in chairs, sleep with no incidents with taking only .5mg Mirapex before bed. I don't understand what's going on. It was SO SEVERE prior to med experiments. Dr. is baffled also, but pleased. He is sending me to see psychologist. He also has had me on sick leave from work for about 6 wks now and for at least another 3.
I wouldn't be surprised if being off work for 6 weeks was a huge factor in your major improvement. Even if you love your job (as I do), it is very stressful with RLS to even wake up for work and then to try to stay engaged and awake while at work. On these meds, I can no longer think clearly and multi-task like I could before. Each day is very difficult. I seem to give everything I have to work and I come home and there's no more energy left in me.
Here's an update from me (I started this thread.) My visit to Mayo Clinic is finally coming closer. I'm still all messed up. I hope they can help me and then maybe that information can help some of you.
.
I think it was the stress of the job like you say. My job duties made my legs worse and over time sent me right into depression (guessing anyway)
Exactly how I felt
I definitely feel I was being over medicated between mood stabilizers, anxiety pills,depression pills,sleeping aids and of course rls med.
And as for the get your mind on something else to help stop leg tremors, tried it all the time and only worked maybe 25% of the time, but always while driving. Maybe because you have to concentrate so much when driving.
Thanks for the input everyone.
Even if you love your job (as I do), it is very stressful with RLS to even wake up for work and then to try to stay engaged and awake while at work. On these meds, I can no longer think clearly and multi-task like I could before. Each day is very difficult. I seem to give everything I have to work and I come home and there's no more energy left in me.
I think it was the stress of the job like you say. My job duties made my legs worse and over time sent me right into depression (guessing anyway)
.can no longer think clearly and multi-task like I could
Exactly how I felt
I definitely feel I was being over medicated between mood stabilizers, anxiety pills,depression pills,sleeping aids and of course rls med.
And as for the get your mind on something else to help stop leg tremors, tried it all the time and only worked maybe 25% of the time, but always while driving. Maybe because you have to concentrate so much when driving.
Thanks for the input everyone.
Re: Broke down crying at a concert last night
A little different take, but although I have the same problem you do with the symptoms of long-term sleep deprivation, including severe depression, I actually look forward to concerts and plan to attend as many as I can, call me an 'avid concert goer'! There are NO other evening social activities I am able to participate in, but music plays a huge role in managing my disability and concerts are one activity that I can participate in because I can stand the whole time and move around as much as I like! I always request the handicapped section and take my walker with me. Yes, I've had to leave before the encore, which can be disappointing, but all in all, it is so good for someone like me, who's been forced to retire and who has little social life, to get out in the evenings and see that there is another 'world' of people out there who do actively participate in living life, especially at night 