Restless Legs Syndrome (RLS) Discussion Board

I also carry the medical alert card.

http://www.rlshelp.org/
This link should take you to the Southern California site and the Medical Alert Card.

Heating pads have worked for me when I first get that tingle, I know you all know what I mean.
Also, I have a treadmill and I swear by it for RLS when only legs are involved. When I have restless "Limb" syndrome nothing works. I can't grip anything to exercise my arms so I am walking endlessly shaking my arms and stomping my feet. If I mess up and don't take my meds correctly I am doomed to hours of agony.

jittery girl wrote: If I mess up and don't take my meds correctly I am doomed to hours of agony.

I absolutely, utterly and without qualification, totally agree with this.

The answer is to stay ahead of the symptoms. If I don't medicate on time (even tho I may at that particular time be symptom free) I will definitely pay for it later. The gremlins will appear and get such a hold that the meds at times seem to be fighting a losing battle even when they do kick in.

Medicate on time.

jittery girl.: Maybe that is my problem, not taking my meds on time. Thanks for the advice. I know if you mess up and let the WED get started, even if you take your meds. the WED doesn't want to stop.

Thanks again.

BETTY/WV

Polar Bear wrote:

jittery girl wrote: If I mess up and don't take my meds correctly I am doomed to hours of agony.

I absolutely, utterly and without qualification, totally agree with this.

The answer is to stay ahead of the symptoms. If I don't medicate on time (even tho I may at that particular time be symptom free) I will definitely pay for it later. The gremlins will appear and get such a hold that the meds at times seem to be fighting a losing battle even when they do kick in.

Medicate on time.

Ditto!!!!!

I few weeks ago, I put the pills out on my desk at the right time and noted I didn't have any water in my glass. I went to get the water, talked to hubby, came back, and forgot to take them.

The symptoms hit instantly and voraciously about 45 minutes later. I was confused at first, thinking, hey, didn't I take my meds? I looked down, they there were! I think I finally slept at 6 AM for 2 hours.

Ouch !! This shows just how we will pay for a delay in medicating.

One of the first things to find out when you get a new med is how long does it take to kick in?
-- a lot of the WED meds take 2 hrs to kick in
-- You let the disease get rolling, it will have a 2-3hr head-start, so it's strong and harder to kill, plus you will have to wait two hours from whenever you realized you forgot your pills.

Another thing to ask is the half-life - how long it takes for your bod to break half of it down. The way this works is exponential not linear, so don't go thinking this means it's all gone in the twice the half-life. No, say the half-life is 5 hrs. After 5 hrs. it's half gone, after 10 hrs a half of the remaining is gone - there's a 1/4 left in your body, after 15 hrs, there's 1/8 left in your body.... If you take another dose every 12 hrs, note that does adds on to the stuff that's still in your body from the first dose.

Something to keep in mind for medications like clonazepam with a 40hr half life... that stuff constantly builds up in your body.

badnights wrote:Anyone else use an old-school rubber hot-water bottle? I like it better than a heating pad because there's no wire so I can shove it around with my legs; and the heat feels deeper. It still has a bit of warmth in the morning.

This worked for me when the WED was bad. Also - I used those stick on tape like things people put on their backs for back pain. I put them on my calves and the side of my thighs. They are expensive, but they did help a little. My WED is so bad now only drugs help. It has been a huge help for people to tell about not using over the counter sleep and allergy meds. I used to try them to knock my self out when it was bad!

I'm glad a hot water bottle helps you. Nothing works for me except the hard stuff. I take Mirapex. But I still don't sleep good. I'm doing a little better since I've been on a CPAP. And then I'm sleepy in the day time. This crazy disease is so dibilitating. And people think RLS/WEB is just a trivial thing. HAH It controls my life to a large degree. And has for decades.

Wish you all restful sleep.

BETTY/WV

Betty
Sorry your experience is like that. I'm with you though. Those things seem to aggravate more than help me, and peoples point of view is annoying at best. But your last line brought me to a thought, I was wondering even with those that have meds working well, do yo get a restful night sleep or just a long night sleep. I even when medicated, am more like passed out than restfully sleeping. Anyone else?

rthom-
I am passed out like a drunk.

rthom: I have been on Mirapex (pramipexole) for a while, maybe 2 years. The RLS/WED is gone, sometimes it sneaks back. But it is better than before. I read the information sheet that came with the meds. Guess what? One of the side effects is "INSOMNIA". So when I sleep I don't think I'm resting and I am awake every 2 hours. I can't win for losing. My life has been stolen from me by this monster. On top of everything else, I have high blood pressure, high cholestrol, fibromyalgia, GERD, arthritis and I wouldn't doubt that some of this or all is related to the RLS/WED.

BETTY/WV

Betty/WV wrote:jittery girl.: Maybe that is my problem, not taking my meds on time. Thanks for the advice. I know if you mess up and let the WED get started, even if you take your meds. the WED doesn't want to stop.

Thanks again.

BETTY/WV

If I helped you one tiny bit I am thrilled!

Polar Bear wrote:

jittery girl wrote:... The gremlins will appear ...

I like that word "gremlins" to describe it. I'm going to start using it for the rare time I have to describe it to someone other than a doctor. Hope you don't mind.

I like the term "gremlins" too...as I can imagine them sneaking in when the rls begins at night. I'm the one who mentioned that a heating pad was so helpful to me. I have just ordered one that does not have an automatic shut-off to see if that helps me sleep more than in two hour stretches (the shut-off time for the pads found in local stores). I know manufacturers warn against sleeping with a heating pad, but I place it on top of my thighs and don't overdo the temp...and even checked with my doctor. This and the drug Horizant makes it so I can sleep fairly well, but I know I'm missing the benefits of the deep sleep. I take the Horizant because I can't tolerate drugs like Mirapex and the agonists.