Feeling Very Discouraged Tonight

[Polar Bear]

Veldon7. I fully agree with you and also hate taking all these pills. Time after time... I also have degenerative disc disease - in my neck and shoulder, lower back, knees and hands - and it can be so frustrating to possibly have wed symptoms under control, only to be unable to find a comfortable position in bed to try to sleep. Couple this to the fibromyalgia and the wed... As it happens tramadol and codeine which I use as part of my wed treatment also kind of helps with the other conditions or I'd be rattling even more. It is pretty difficult trying to keep up at work during the day and I have to say that when I retired from the routine of employed work it made my lifestyle much easier.

[Polar Bear]

DEB - don't apologise for venting....... we all have done it, and will no doubt do it again in the future.

[badnights]

veldon7: it may be hard to do, given the condition you're in, but you absolutely need a new doctor, and it will be well worth the effort to find a new one. That is, if you're sure your current doctor knows about the opioid solution for RLS and just refuses to try it.

deb: probably this is not the answer, but a sleeping pill might help keep you asleep through the lighter episodes of RLS, and might also help you attain deep sleep?

[Hazel]

Dr Ekengren in Wichita Kansas is very informed regarding WED/RLS. An appointment is usually available within two weeks. He was informed and current on WED/RLS treatment protocals, including the use of methadone, and opiods. He is compassionate and for the first time in a long time I felt that a doctor understood my condition, and respected my in put. I've had a lousy couple of weeks. My sleep patterns have been disrupted from my previous doctor not refilling my scripts for five days, then having too fly to the East coast due to a death in the family. I'm so glad to have a doctor who understands, that just because I have my medication, that this is not unusual for this to happen and it will take time to get my WED/RLS manageable. Now I am finding out that I may be having problems and am being tested for Ménière's disease. love getting older! I have been thinking of you all, even if my body/eyes kept me from focusing on responding to your posts. Hazel

[debbluebird]

Well, I have been alternating night with the Mirapex for a couple of weeks or so. It was going ok, but then last night wasn't good. It was my off night for the Mirapex. I slept 2 hours, woke up to jerking/spasms in my right leg. Was up 2 or 3 hours, taking meds, etc. Then slept for 2 hours, again awakened by my leg. I ended up just getting up at 7:30 am. I'm begining to think that maybe restarting the Mirapex was a bad idea. I have augmented twice already. I just read on this site that if you have done that, then you shouldn't restart it. Well, I had a few nights of sleep at least. DEB

[ViewsAskew]

Well, I have been alternating night with the Mirapex for a couple of weeks or so. It was going ok, but then last night wasn't good. It was my off night for the Mirapex. I slept 2 hours, woke up to jerking/spasms in my right leg. Was up 2 or 3 hours, taking meds, etc. Then slept for 2 hours, again awakened by my leg. I ended up just getting up at 7:30 am. I'm begining to think that maybe restarting the Mirapex was a bad idea. I have augmented twice already. I just read on this site that if you have done that, then you shouldn't restart it. Well, I had a few nights of sleep at least. DEB

Dr B said that alternating shouldn't cause augmentation. When they say not to take it again, they mean not to take it daily again. There are some people who augment fast (I did in about a week). And I augmented in one night on Sinemet. I've heard of others augmenting in one dose of Sinemet. I am not sure I've ever heard of anyone augmenting on one dose of Mirapex.

Because of the short half life, it's like your body is taking it the first time each time it takes it. That means that problems are likely to be very rare.

Of course, they could occur. My point is not to beat yourself up or think you did the wrong thing by taking it. Heck, you got reasonable sleep for several weeks! That's a GOOD thing. And last night might not be because of anything you did. It might not be the Mirapex. This is a crazy weird disease and sometimes it goes nuts and we don't have any idea why.

I have some nights that just plain suck - no idea why. It's always miserable around my period, but sometimes out of nowhere comes a hellish night. Let's hope you were just having a bad night.

[debbluebird]

Thanks Ann for your support. I decided to keep going with the Mirapex every other night. I took it last night and it was ok. I have been on Mirapex twice on a daily basis and augmented both times. The first time it was years before I got into trouble. The second time it only took a few months.
Well at least I'm getting sleep every other night. Last nightI got 2 hrs, then I think 4 hrs. So that's not too bad. I'm to the point now that that's acceptable. Before WED I slept 9 to 10 hrs (mostly 10). But I really believe I had sleep apnea and RLS then. I think I slept through it. I've always been told that I moved my legs in my sleep. I think that's why I slept so long at night and I was always tired. I didn't know why I was always tired. My sleep study showed that I wake up 90 times an hour. That was back in 2009. Who knows now. I'm on CPAP. It took more than a year to get used to it. DEB

[debbluebird]

I've been doing the Mirapex .125 mg every other night now for awhile. Some nights are ok and other nights aren't so good. A good night seems to be sleep 2 hours, up an hour (take a med), sleep 2 hours, up an hour (take a med) and sleep 2 hours. On bad nights I max out on the meds and have to get up having even less sleep. Last night was one of those nights. So today I am very sleepy.
One thing that has been increasing of late is the strength of my leg jerks. It is pulling so hard on my right hip area that I yell out loud. It really hurts. I get no warning. It's like a knife stabbing me (the amount of hurt). My osteoarthritis seems to always increase my leg jerks. I've read that PLMD only happens when people are asleep. My leg jerks can happen when I'm asleep and awake. So, I don't know what it is. All I know, is it hurts like hell when it pulls on my bad hip.
I don't know anymore. DEB

[badnights]

PLMs can happen when you're awake too, they're not as common, but sounds like you have them.

[debbluebird]

Thanks Beth. When I looked up PLM, it said only when asleep. So then I didn't know what to think. This helps a lot. They can get so bad. It feels like my leg is going to pull away from my joint. DEB

[ViewsAskew]

Thanks Beth. When I looked up PLM, it said only when asleep. So then I didn't know what to think. This helps a lot. They can get so bad. It feels like my leg is going to pull away from my joint. DEB

The term PLM and PLMD and PLMS are used incorrectly a LOT - and on medical sites, too!

PLM - Periodic Limb Movements
PLMS - Periodic Limb Movement in Sleep
PLMW - Periodic Limb Movement while Waking
PLMD - Periodic Limb Movement Disorder, which can ONLY be diagnosed if you have NO other sleep disorders

So, yup - they happen during the day!

[debbluebird]

That's interesting. I know my leg/legs jerk happen while I'm asleep and while I'm awake. Last night was a mirapex night and had a very good night for a change. No leg jerks at all (unusual). I didn't get up until 11 this morning. I still had my wake periods. I feel very good for a change. The previous mirapex night, my leg started jerking about 5 am, so I got up. DEB

[debbluebird]

Well, the last two days I have been sleeping during the day without any problems. I may just keep this up. I did take an extra methadone first thing in the morning, 8 am. I slept from about 11 am to 3 pm today. So adding it to the 4 hours I got during the night, that's pretty good. DEB

[debbluebird]

I've have many good nights. At least what I consider to be a good night. I have been less strenuous lately and I really think that this had made the difference. I still feel tired but I think I'm getting about 7 to 8 hours of broken sleep. Up every 2 to 3 hours, taking meds. Don't know how long this will last. I live day to day. DEB

[Polar Bear]

The bliss of sleep.