A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

[badnights]

I'm just afraid that as my arthritis get worse the WED/PLM will too. That's seems to be the pattern.

None of the available meds were designed to treat this disease. We're just shooting in the dark. We need targeted meds. We need more people researching the cause of this disease. All it takes is money, and the world is awash in money. But It goes to such odd endeavors - I spend ten times as much money in a year on government airborne geophysical surveys as the WEDF spends on research grants. It's not like there's not lots of money in the world. How do we divert some of it to finding out what causes WED?

[ViewsAskew]

I'm just afraid that as my arthritis get worse the WED/PLM will too. That's seems to be the pattern.

None of the available meds were designed to treat this disease. We're just shooting in the dark. We need targeted meds. We need more people researching the cause of this disease. All it takes is money, and the world is awash in money. But It goes to such odd endeavors - I spend ten times as much money in a year on government airborne geophysical surveys as the WEDF spends on research grants. It's not like there's not lots of money in the world. How do we divert some of it to finding out what causes WED?

I think it's going to increase exponentially now that heart disease, stroke, high blood pressure and early death are involved. This changes the stakes to those who provide funding. It seems to be common sense - it costs them money, so they want to prevent/solve/reduce it.

Or else I'm delusional from all the opioids I take, lol.

I choose to believe that it's common sense instead.

[debbluebird]

I thought the anti itch meds made WED worse. I know Benadryl does. I've been afraid to try anything else. Last night wasn't as bad.

[ViewsAskew]

I thought the anti itch meds made WED worse. I know Benadryl does. I've been afraid to try anything else. Last night wasn't as bad.

The newer versions do not for most of us. They do not cross the blood-brain barrier - on most lists they are considered safe. I've never had an issue with Zyrtec, though I've heard some people say they have.

[EeFall]

I don't think my WED/PLM is as bad as some of you guys. I took my one methadone and I have been itching all evening with some WED. That's what pretty much keeps me from taking more, the itching. I usually don't itch like this with just one. I seem to becoming so sensitive to meds. There is just no way that I can take more of anything. I've had those high doses and it was awful. I was a mess. I'm just afraid that as my arthritis get worse the WED/PLM will too. That's seems to be the pattern. I just wish there was an answer for you EeFall.

I slept 6 hours last night! I went to bed and almost immediately I felt like getting up. I fought it for awhile, I was thinking that I would need to get up at any moment - then I woke up and 6 hours had gone by Methadone makes me itch too, the more I take the worse it becomes, except I think at some point I am able to overlook it. I pretend it does not exist. After reading your post about itching I am feeling itchy like crazy, it has to do with focusing on it or not focusing on it. In general opiates (or synthetic opiates (opioid) like methadone) make most people itch. I don't know how I do it but somehow I ignore it and while it is really always there I usually don't feel it unless I am carrying on a conversation about it as now

I wrote Dr E an email today, he probably won't see it for awhile because of holiday but I told him briefly that I am having to take more of Lyrica and methadone and that it is giving me severe mood swings, I told him it was not just from lack of sleep but that it was the meds doing it too. I asked if there was anything else he could do, don't know what he will say, if anything. It is serious, there is no question about that. I am living in a dream world most of the time denying that I am living by a thread, but what else can I do? I have to work (thank goodness I don't work until Thursday because of holiday) yet I am getting substandard sleep even when I sleep such as last night. I am always exhausted.

It is not realistic that I can continue to do this for another 3-1/2 years until I reach age 62 to retire, yet that is exactly what I must do. Sort of living a paradox but everyday I get by it is one more day closer to success. We found out today that a classmate of ours died (don't know from what yet). Our high school class was made up of about 50 students, I think he is only the 3rd to have died, sort of strange but I had assumed that he would live longer than me since he was a health nut, healthy, etc...I guess it is more of the roll of the dice than anything else in reality.

[EeFall]

I can't believe we continue to make plans as if I can just continue to work forever, maybe it is human nature...

Gee. I constantly alternate between being appalled at how little I can do anymore, and making plans as I'm still whole. (I know, I'm not supposed to imply that I'm not whole. But that's how it feels.)

I think it's habit of mind. We've spent so many years, such a large portion of our lives and all the formative times, being capable and productive. Then this. How are we supposed to adjust?

And more: when does acceptance become giving up? If you're deathly opposed to giving up, how do you accept? I can't tell the difference.

It is a quandary. Like I just posted, a classmate dies (actually the 4th not the 3rd, I had forgotten about the classmate who died the summer after graduation from a car accident) who I thought would live much longer than me. Actually the one who died in the accident a few weeks after graduation, he was a perfect student, a nice guy, a nerd...I thought he would live a long life too.

Then what if we do give up and find out a cure is found the next day? We should never give up because of that, we never know when a cure will be found. Throwing money at it might not be the answer either, sometimes answers are found from unrelated events, even by accident. I learned the other day microwave ovens were discovered because a guy working in a lab on radar noticed his candy bars were melting in his pocket when he was doing certain experiments Anti freeze was discovered because they were dumping waste from a plant into the river and someone noticed it didn't freeze over in the winter anymore The list is long on unrelated events leading to discoveries.

[EeFall]

Boom, boom, boom! It must be another year.

[Polar Bear]

2014 - Let's all hope it's a good one.

[ViewsAskew]

2014 - Let's all hope it's a good one.

Here's to a year with breakthroughs in what we know about WED. That, in turn, will make all of our lives better.

[EeFall]

So I slept maybe 2 hours last night and drifted off a couple of times today for an hour or so. I go back to work tomorrow. I'll be going to bed in a few minutes, even though I am exhausted I have no idea if I will be able to sleep. At least it is only a 2 day work week. My doctor nor his office have replied to my note from a few days ago, they must be on vacation. I am in limbo once again and don't know why my sleep is practically non-existent. I'm going to try to continue working though. My wife has agreed to take me to work on days that I am not able to drive myself. I still have hope that this all will turn around. Hopefully I'll get 6 plus hours of sleep tonight, I need it for sure. Happy new year!

[EeFall]

Slept 6 hours last night and back at work today. Man did I need it! Happy.

[Polar Bear]

Your post made me smile... I am happy for you today.

[jannazoo]

Am interested in hearing how things are working out? I was diagnosed over 15 years ago and have been on carbidopa/levodopa for over a decade - it's wearing.

[EeFall]

Am interested in hearing how things are working out? I was diagnosed over 15 years ago and have been on carbidopa/levodopa for over a decade - it's wearing.

Suboxone - Living on the Edge
viewtopic.php?f=4&t=8742

I have since created the thread above. My doctor ended up putting me on Suboxone and it is working fantastic. Last night I slept 8 hours!

[Neco]

Am interested in hearing how things are working out? I was diagnosed over 15 years ago and have been on carbidopa/levodopa for over a decade - it's wearing.

Good god... you're not on this for daily RLS are you?