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Posted: Sun Jul 25, 2010 11:22 am
by Betty/WV
Ann--Thanks for the information about the RLS clothing and merchandise. I am ordering the pin and T shirt. Thanks Again.

Gill--I to wish I could dance again too. When I was younger, healthier and was thinner, dancing was my favorite thing, oh how I loved to dance. Now my body or mind or both won't let me. Maybe if I wasn't overweight I could. I have a friend who ( in a round about way) is always reminding me I'm overweight and should lose weight. Haaaaa As if I didn't know that. I'm short, heavy and old and believe me I have tried but it isn't easy, by any means. And I read once where it said that most people with RLS are overweight. I think lack of sleep has something to do with it. I know you are probably thinking, "what kind of friend is that", but in other ways she is a good friend. :( :(

Sorry for the early morning vent.


RLS and sleep

Posted: Mon Jul 26, 2010 2:37 am
by carolsond

I have severe RLS. I can certainly relate to your feelings of frustration of only getting about 2 hours of sleep at a time. That's exactly what I get, if that.
My RLS has been very bad this last week. I had Tylenol #3 and Codeine pills which I take when my RLS is really acting up. I've had to take at least 1 Tylenol-Codeine almost every night this last week. It helps somewhat-not completely, however. I was pacing last night until I guess I was so exhausted I just fell on my bed and sleep finally came. My RLS had quieted down somewhat enough to get to sleep which doesn't happen very often. I think I got about 3 hours total of sleep last night. I have a 98 old mother who has dementia and I need to drive her to all of her appointments, church, shopping, etc. I dreaded having to drive because I felt like a zombie, so-to-speak. I'm taking Mirapex and I've actually fell asleep or nodded off a couple of times when I was driving. Fortunately, I woke up in time to get control of my car and prevent it from going into the ditch or hitting another car, thankgoodness!
Now I'm always afriad that might happen again. Fortunately, it did not today.
I didn't even feel like nodding off. I don't have any warning whatsoever that I'm about to nod off. It just hits me like a ton of bricks. I have an appointment to see my psychiatrist next week and he works in the Sleep Disorders Clinic at Mayo so I'm going to tell him about my RLS getting worse. The Mirapex doesn't seem to do hardly anything. I think it has lost it's effectiveness. I've been taking it about 8 years now. I have tried several RLS meds and none of them really helped my RLS or I couldn't tolerate the side effects. I wonder if acupuncture might help. Any thoughts about that?

This disease is like living in a continual nightmare. I wouldn't wish it on my worst enemy. I wish that new meds and/or a cure would be found for RLS.
However, I doubt that will happen in my lifetime.

I'm not able to work because I have other chronic and incurable health problems. I live on my Social Security disability which is just enough to more or less keep a roof over my head. Your are fortunate to be able to work
I'm 70 years old so I'm really too old to work anyway.


Carol Ann

Carol Ann

Posted: Mon Jul 26, 2010 8:39 am
by Betty/WV
Hi Carol Ann: Sorry to hear the Mirapex is no longer working. I have been taking it over a year now. It really helps the RLS, but I still don't sleep well. But at least I'm not up walking the floor, crying because I'm so tired and can't even lie down.

Please be careful about the driving. That doesn't sound good at all, you could have a terrible wreck. I have read where that is a side effect of Mirapex. So far, I haven't had that kind of trouble. Since you have been on Mirapex for 8 years, how long has this problem with the driving been going on. Surely it hasn't been from the beginning. I think it is a good idea to tell your doctor. And you are fortunate to live close to Mayo Clinic. Its hard to find a doctor who knows anything about RLS.

Best of everything. Hope you get this problem resolved. And it sure isn't easy since you have the responsiblity of caring for your Mother.

Take care.


Posted: Mon Jul 26, 2010 12:45 pm
by dogeyed
Hi Carol Ann,
I am sorry to hear your RLS is driving you nuts, and on top of that you gotta take care of an elder demented parent. I have a suggestion, if you want. When you visit your psych doc this week, I think you could ask them for a regular programme of the Tylenol Codeine #3, since you've already used it with some success. Maybe three times a day ought to do it for now. That's what was given to me when I was first diagnosed with RLS, altho they wanted to give me something stronger. Anyhow, it has kept my RLS almost completely under control for many years. I sleep pretty well, I always get at least five or six hours and sometimes eight. I don't take any of the other meds approved for RLS... tried them all, just didn't work.

Many people who have RLS wind up on the opiate derivatives, it's about the only thing that bring relief to us fairly consistently, few side effects, and the addictive problem is nowhere big a deal as some make it. Also, you can drive and do things without it interfering, once you get used to the dose.

I might add that until you can get your sleep straight or on days you don't, if you can afford it, consider phoning a taxi to pick up your mother for doc appoints and ask the driver to take her inside, and arrange for her office to always call one to pick her back up and also the office should take her out to her ride. And you could ask a church friend to maybe take her to church for you. That should keep you and her safe, and yet you will be able to meet responsibilities, until you can rest better.

Posted: Tue Jul 27, 2010 2:34 am
by badnights
Hi Carol Ann
You're having a rough go of things these days, that's for sure. You do need to tell your doc about the driving problem, as that's a clear indication that Mirapex is not the drug for you. Also, tell your doc it is not effective; 3 hrs sleep per night is nowhere near enough.

I could not use either of the dopamine agonists (Mirapex or Requip), nor could I use Neurontin (gabapentin) so I am now on hydromorphone, an opiod, and it quiets my day-and-night RLS and leaves my mind clear and awake. Don't be afraid of the opiods if that's what your doc recommends (and if he doesn't, he probably should!)

btw I found a link on another forum to acupuncture ... 793/3.html and it didn't work for any of the 10 RLSers on that thread who had tried it.

Posted: Wed Jul 28, 2010 5:18 pm
by waterloo2
Hi Beth
Accupuntre is for pain not rls just thought I would let you know.
Im thinking about massage for my legs.
Sure is hell this rls for my osteo arthiritis.

Posted: Wed Jul 28, 2010 5:55 pm
by Polar Bear
Gill, Osteo arthritis and rls.... not a good combination to have to cope with. What are you hoping to achieve with the leg massage?

Unfortunately as those of us with rls get older it is more than likely we will be dealing with the combination of rls and some form of arthritis. I know that I am already doing so.

I was having physio and the physio also did acupuncture so also have tried acupuncture for neck pain but did not feel any benefit, but good luck to anyone who finds relief from it.

Carol Ann, I empathise so with regard to your sleep issue. Nothing.... but nothing.... is helping me to sleep. Retirement has taken off the pressure of working hours and means that even tho I am not sleeping, the nights are not so stressful as I no longer need to clock watch to the same extent.
During the night I catch up on stuff and try to stop being concerned about being awake, and try to go with the flow. This is insomnia and not rls symptoms which are somewhat under control (at present :roll: :roll: )

Posted: Wed Jul 28, 2010 8:57 pm
by waterloo2
hi polar bear
i tried accupuntre for my bad knee once it really did help.
you're right not a good combination ouch.
on 8 pain killers a day.
geez im stressed out.

Posted: Wed Jul 28, 2010 9:01 pm
by Polar Bear
Gill, you said previously that you were thinking of massage for your legs. What are you hoping to gain from the massage - are you thinking it will help the rls symptoms?

Posted: Wed Jul 28, 2010 11:33 pm
by waterloo2
Hi polar bear
Yeah I am thinking it will helpwith the rls the dr mentioned it.

Posted: Thu Jul 29, 2010 2:16 am
by Polar Bear
I would have thought that massage of the legs may temporarily help if done whilst rls symptoms were active ( i.e. hubby/partner on hand at the right time) might give enough temporary relief to get over to sleep.

For myself, I cannot see how paying someone for leg massage during the daytime would be of any benefit come evening time. I am only speaking as to how I feel that leg massage would benefit me.

However, as we always say, we are all different, and anything that works for one person is a Godsend.

Posted: Thu Jul 29, 2010 3:31 pm
by waterloo2
hi polar bear
I have rls all day and night though.

Posted: Fri Jul 30, 2010 1:59 am
by Polar Bear
If you decide to go for the leg massage it will be interesting to hear your opinions on any benefits.

Posted: Fri Jul 30, 2010 4:08 pm
by dogeyed
Polar Bear,
For your insomnia, I presume you have eliminated sodas in the evening, as they have caffeine in them, and I hope you do easy exercise daily to help you sleep. And I wonder if you tried what I do when sleep doesn't come because of RLS (IF that's part of why you cannot sleep) and that's to put support stockings on, knee-highs, the compression makes the RLS go away just long enough to fall alseep. I have other ideas for insomnia, if you want them.

On the acupuncture being for pain, some RLS people have it with pain. I do. Your arthritis could be helped with it. Do you think it's your RLS or your arthritis driving you nuts, or the combination? Do your calves spasm and that's what is annoying? Just want to know precisely what needs to be fixed for you to get thru your days. On the Circulation Booster, if it's anything like this vibrating seat cushion I sit in sometimes, that thing was a life saver for me when I went thru a rough patch.

Posted: Fri Jul 30, 2010 8:02 pm
by Polar Bear
Dogeyed - I don't drink fizzy colas of any sort, only water, or use very little cordial to dilute. No alcohol, only on very rare occasions.

I golf in some fashion maybe 4 or 5 times each week, sometimes the driving range, sometimes the little practice course, not often the big 'real course' (it takes about 4 and a half hours) and also I just am not good enough !!

I only drink decaf coffee.

At present my rls is doing pretty good (almost afraid to say it... touch wood... etc. etc.)
But it is doing good cos I am very particular about taking meds on time, no caffiene et al... whether the mo-caffiene makes a difference or not I don't know but I don't take the chance. I even carry little sachets of decaf coffee in my purse for whenever I visit someone who does not have de-caf. :wink:

Sleep was always an issue with rls, tho the rls for whatever reason appears under somewhat better control at present. I don't know if this is because I am also currently on a steroid medication. Dr B said that the steroid should not make a difference one way or another.

The insomnia at present is like something from a different planet altogether and would appear to be steroid related, it is on the list of side effects, and anyone medical appears to assume that it is something to be expected.

Glad to say these last couple of days that tho the sleeping pattern is haywire I have had a few hours sleep.

Go to bed around 11, read... whatever.... then eventually perhaps have an hour's sleep around 1 or 2 or 3 o'clock following which I am wide awake, get up and potter about with the pc, sudoko for 2 hours at least. Back to bed at around 5 or 6 or 7am, depending on when I got up, and yesterday slept from 4.30 until 8.30am, and today slept from 6.30 until nearly 11am.

This wouldn't work for someone in employment but I am just so happy to take what I can get.

I am more than happy to hear of any ideas to help with insomnia.