Restless Legs Syndrome (RLS) Discussion Board

My normal has changed again. I'm up now most nights. Before this I was able to go to sleep around 11 pm, but only sleeping 2 hrs, up, then 2 more hrs, up then 2 more hrs. The up time was about 30 min to an hr.
Now my sleep Is still only for 2 hours. Then I'm up for a bit then another 2 hours. So my sleep is in the mornings, 4 to 6 hrs total. Starting around 6 am.
My leg spasms aren't as bad as they used to be, but enough to keep me from sleeping. Sometimes I would call them mild.
I'm also getting more RLS than I ever used to have. Hits me in the evenings. I just walk around, then go back to sitting.
I ride my bike a couple of times during the night, hoping that will help like it used to do. Lately, not.
I have not changed meds since the first of Feb. Taking Gabapentin 600 mg every 8 hrs. and Methadone 2.5 mg every 8 hrs.
I add different things most nights. Hemp oil, Kratom, Mirapex .125 mg or oxycodone 5 mg. I don't take the oxy very often or the Mirapex. They just don't help that much like they used to. I try to wait at least a week for the oxy and mirapex. At first these helped, now not so much.
So needless to say, I have no energy to do anything. I watch tv or read. I'm sick of tv.
I'm waiting for time to go by. My back fusion was in Oct. Doctor said it could take a year for the nerve endings to recover. I think it's funny that I'm having RLS. I rarely had it before.

I'm so sorry Deb.

Deb - your sleep pattern is very like my own although I don't try to sleep until about midnight.
The only blessing is that I am retired and can sometimes manage to sleep on a little in the mornng until about 9am.

I'm so sorry that you are suffering.

I've had it worse actually. The RLS is driving me crazy tonight. Jumpy leg as everyone says.
I tried the meat on earlier tonight. So far no good. Oh well. This too shall pass.

I hate the RLS! When it is bad, I hate it more than the PLMs. When the PLMs are bad, I hate them more. I guess I actually hate them equally!

I am counting my blessings that I don't have PLMs. Statistics show that quite a high number of RLS Sufferers also have PLMs.
My husband confirms that I don't do any kicking during sleep.

I hear both of you. Mine are better, yet I still don't sleep like I'd like to. Spasms aren't as painful. RLS has increased. Weird. At times spasms seem very mild, yet enough to keep me from sleeping.
Thurs and Fri night I slept better. I took the Kratom at 8 pm in addition to regular stuff. I was taking it after trying to sleep, but failing, then I'd take it at 4 am.
But then there was that period where I was up all night.
Tonight is not good. I traveled by car 3 hrs, then by plane for an hour. So not my usually. So I am awake. I took an oxy, so no symptoms. I'm just awake. This just all gets so old.
On a better note, I didn't have to take a wheel chair at the airport. I walked the whole way. I haven't done that in years.

Great news about walking at the airport!

I got through the week. I had to take extra meds.

debbluebird wrote:I got through the week. I had to take extra meds.

Tonight is bad.

I wish people would stop telling me that I have my day and nights mixed up.

debbluebird wrote:Tonight is bad.

Deb, did you get some sleep? Are you seriously thinking of killing yourself?

I appreciate the contributions you make to the me and the RLS community. I'm so sorry things are bad now.

Deb, the middle of the night can be weird, the world is sleeping, and there we are.
I've managed to gain weight just from the nighttime hours that need to be filled. I read, have a bowl of cereal, read a bit more, go onto the compuler, have a few cookies and a glass of milk.... and so it goes. Yes, some of my many meds have weight gain as a side effect but in the end, it's only me that can decide to raid the fridge.

Like you, I know that when I head back to bed at around 5 or 6 am - I am likely to find some sleep.

Something I read somewhere was --- give yourself permission to not sleep, permission to be awake ---- and I try to accept this.

Please don't be hard on yourself. Also like you, I find myself taking extra medication. As I am trying to come off the ropinerole I make sure not to take extra of it, but i do take some extra codeine.
It's how I manage, and Deb, if it's how you manage then that's ok.

I'm not suicidal at the moment. Even at my worst, I would never do it, but I end up driving my husband crazy and crying a lot. But it is always just a couple of nights with little sleep away.
I have done this to myself by trying to wean off methadone. I'm only taking 2.5 mg times two. 1 pm and 9 pm. It seems like I should be able to stop it. Is it really doing that much ? That small of dose ?
Yeah, I've gained weight again too. Drives me crazy. I was feeling so good. I try to keep the sugar and flour out of the house. I'm sure it is the gabapentin. I hate taking it.
When I say it's a bad night, it is when I have been up all night with spasms never stopping. When I have two of those nights in a row, is when I feel the worst.
My Doctor doesn't like it when I add an oxy. I try to only take one only 2 or 3 times a week.
Last night I added Kratom twice. 1/2 teaspoon each time, about 7 hours apart. It finally worked. Finally got some sleep. That's the most I've ever taken in one night.
The reason I decided to start weaning was that I was having several nights a week without symptoms. I feel like the weaning is probably causing the problems.
Last time I quit methadone I had withdrawal symptoms for a month, then ended up going back on. I had done it for one of my doctors. He thought I could just go back on mirapex and gabapentin. Wrong! I can't take it every night. I have figured out, no more than once a week, which I'm doing now. This week I gave in and took it on day 4. It didn't work as well as it did the time before.
All of the drugs that I now take all give my body the signal to take more, by not working as well as before.
I do tend to experiment, so like I said before, I do this to myself.