My WED/PLM Cycles

[debbluebird]

I'm in my less sleep period now. It's been over a week now, since I slept well. I was getting 8 to 10 hours of sleep. Now it's a broken 4 or 5 hours of sleep. In other words I might get in two hours, be up several hours, the sleep a few more hours. Eventually I will go back into the good night of sleeping. The longer this lasts the worse that I will feel. Sometimes I don't get my CPAP on, so the sleep that I do get isn't very good. It might be in the car or my chair. When I'm not sleeping at night, then I'm very sleepy during the day. Sometimes I can sleep then, but most of the time I can't. My legs won't let me. Last night I managed to get in 2 hours with my CPAP on from 9:30 to about 11:30. Then I was awake until around 4 am. Got up about 7:30. It's hard for me to get much done during the day when I'm so sleepy. Then in the afternoon, my PLM's usually start to keep me from sleeping.
I'm just waiting for a good cycle to start. I never know how long the cycles will last. I don't plan on changing my meds at this time. Have to end this note, my legs have kicked in and need to turn off computer.

[ViewsAskew]

That happens to me, too. Weird, isn't it? It MUST be related to our chemistry in some way, but who knows how?????

I hope it changes - and very soon. It definitely has a huge impact on how a person feels - and never for the better.

[badnights]

Hope it gets better soon, Deb. Mine ebbs and wanes, too. Darned if I can figure it out.

Another thing that happens, sometimes even if the WED symptoms are at a low, I may feel weak and exhausted for days in a row when I just can't do anything. Do you get those cycles too? I can't tell if they're completely unrelated to the WED cycles.

[debbluebird]

Yes, I do feel like that at times. Even when I am in a period of sleeping ok, I'm still tired. I'm only good for about a half a day of doing stuff. Then when I sit down to rest my legs will start in. So then I'm up again. That's when I get on the treadmill, or bike. If I've already done that, then I get into a hot tub of water. It never ends. I about fell asleep in church yesterday. I was so sleepy.

[cornelia]

The circle of good nights followed by weeks of bad nights happens to me too. Also the weak feeling and exhaustion. The weak feeling might be from the opiates accoording to my neuro. When I was on DA's my RLS was worse but I didn't feel weak, that's a fact. The exhaustion probably will be there when you have done to much (which you don't always recognize I guess). I always think that when I do too much that my PLM's are stronger, also when stress is involved.

Corrie

[badnights]

How interesting the weakness may be the opioids.

I can't wait to try iron infusions.

[debbluebird]

I feel exhausted a lot, no matter how much sleep I get. Before I go to bed, whenever that is, I feel like I haven't slept in days, even though maybe I have gotten fairly good sleep the night before. I just finished the down cycle, sleeping fewer hours, four. The last couple of nights I've been able to sleep more with usually two interruptions of WED for just about a half hour or so, eight.

[ViewsAskew]

I rarely feel energetic - between feeling physically exhausted and mentally tired/sad/depressed much of the time. Even when I do sleep, I rarely feel like it's been a GOOD sleep. I seem to be in REM a lot - I seem to recall that this is a sign of being sleep-deprived. I start dreaming within moments of falling asleep most times.

I have a feeling that some of us may not be resolving our PLMS - my husband tells me that I move a lot. He's often not sure if it's me waking up with WED or me with PLMS. But, either way, something is still causing major interference with sleep.

I have to give credit to the DAs there - I don't think I moved at all when I took them. Not so with the opioids. If we could just tolerate a teensy bit of a DA, I wonder what would happen? I'd experiment with it, but the DAs cause such depressive feelings these days that I can't stand the thought of it.

[cornelia]

Physically and mentally I feel exactly the same. It scares me that in the foreseeable future our lives will not get better. Maybe for a relatively short time after a complete drug holiday. My neuro also thinks that it will take quite some time. I hope the morfine pump will be added to the list of treatments.

I also agree that the opiates don't work as well for the limb movements as the DA's do, although my husband doesn't see me move a lot most of the times. Dr B has written in his book about the DA's working better for the movements than the opiates, so yes, it would be a good idea to mix a DA in (dr Montplaisir wrote about this idea in 2004). But at that time we didn't know a lot about augmentation which prevents us from taking these meds anymore.

It's just an ongoing struggle.
Corrie

[badnights]

It scares me that in the foreseeable future our lives will not get better.

We actually have no idea when the next breakthrough will come or what form it will take. It is quite conceivable that we will all be happy campers in the foreseeable future. It's not a ridiculous thought. I readily admit I can't see how, but I know from experience that just because I can't see the answer doesn't mean it's not there.