Venting!

[dogeyed]

EeFall, Let me clarify a couple things I posted. I so appreciate you postin back to me, and the others, one by one. Now, as to the Tylenol-Codeine #3 (I now take #4), when I first took it, I took it several times a day, to get it up in the bloodstream not ONE pill, but THREE pills. Later I went to four pills, and later switched to #4. But in each change, I always took them three times a day, and later four, before I switched to double dose with #4. That's probably confusing, but in NUTSHELL, if you're going to go on off the Mirapex FOR GOOD, then I would recommend you take the oxycodone more often in the day, and when you take your last one near bedtime, you should be able to stay asleep quite awhile because it turns off the pain or at the least the annoyance of RLS. It is listed in the four categories of meds to take for RLS, opiates are, which oxycodone is the strongest opiate you can get a prescription from the doctor. I've taken it, it's quite powerful, and you may want to go with two pills, but switch into three after three days. These are just MY IDEAS. You can run them past your doc and see if it's okay.

I think you can get a loan based on your work, and even tho you don't own the land, you apparently have a mortgage still on the house? In any case, I did not own a house when I got my first loan, it was small, I cannot recall what I got it for, but I think it was for several unpaid bills that built up between jobs, and I had been at my new one for six months or so. And what I meant about leaving your job was, IF your supervisor was to tell you to leave. Unless your supervisor has said something about being sick too much, which you're allowed to be sick in this here world, and nearly all workplaces make allowances even OVER the granted sick leave; they don't want everyone else in the workplace to get sick, and sometimes they'll even give you unpaid leave if you get sick, which in that case the company doesn't lose any money; they just lose you as a worker for a period of time until the sickness subsides.

Now, you said you stopped Mirapex and took oxycodone at night, and it didn't help. Now, when I took that drug, I was already on a tranquilizer and antidepressant because of panic disorder and depression and anxiety. I was in deep trouble on that, had bee on them about three or four years before the RLS showed up, which as it turns out was a function of my lower back pain, something pushing on a nerve, and so then I took Lyria to kill that pain. The codeine wasn't enough to do that. It still controls my legs completely, but Lyrica is for my spinal nerves, and the codeine seems to be for my musculature. As they say, RLS is a neuromuscular disease, and while I treated half of it, the other half, the origin, went untreated until it showed itself with a whole lot of pain. I never have episodes with RLS now, and I had the worst kind you can have, severe, painful restless legs. My feet even hurt.

Well, I'm not trying to be too bossy, I just wanted to clarify. You know perfectly well how to work your meds, and you were just venting. But I couldn't help myself, I am so relieved not to have it bother me that when I hear people having problems, I can't help but promote opiate drugs to kill RLS. GG

[jakesmom]

You guys are so fortunate to have docs that will give you opiates. My doc seems determined to see how much Mirapex she can give me. Since the other DA's didn't work and I couldn't take Horizant, Neupro or Lyrica due to side effects, I am stuck with Mirapex as the only thing she will give me.

I read an article where it is possible the lawsuits re Mirapex may soon involve the doctors who prescribe it if they didn't advise patients of side effects. I'm okay with not being told upfront, I'm not okay with having them ignored when I present them and Mirapex being my only option. I'm tired of begging doctors to take me off this drug, paying to see them and getting a 10 min consultation that ends with no.

I know it's not nice to envy, but I envy you guys who have knowledgable doctors.

[dogeyed]

JAKESMOM, there is even on WebMD a section where doctor after doctor says this whole anti-opiate thing is ridiculous, that as long as a patient has pain, they are NOT going to get addicted. And I'm living proof. Can you believe that just 50 years ago, with all the drugs they have for pain, docs even then were reluctant to give morphine to patients with terminal cancer???? It's an old wive's tale, and docs should NOT be so concerned about prescribing them... it's the pharmacies they go to that need monitoring, for crying out loud. As I've said time and again, I saw a documentary on South Miami and the prescription racket, where people actually line up around blocks after blocks, to get SOME sort of script filled, they did this whole TV show on it, and did I see a cop? NO. Don't ask me why. But a doc and patient ought to be able to work things out on the addiction front, which according to all sorts of research, ain't gonna happen because pain and pain meds DO go together, NO addiction.

And again, EeFall, your oxycodone WILL work, if you kind of separate it out from your other drugs at bedtime, and INCREASE what you were taking at bedtime of it, but do not take Mirapex or much of anything else with it unless it's a tranquilizer or like drug. I really hope everyone one day gets what they need for this insidious and often painful, sometimes disabling problem, IF NOT TREATED CORECTLY. And while some categories help some, if it does not help a patient, ON TO THE NEXT CATEGORY until satisfactory relief is found. There is a government website for neurology that explains RLS very well and the several categories of treatment, including opiate drugs, and WebMD has PROOF that pain drugs as long as a person is in pain IS OKAY, for crying out loud. Yes, it's hard to get some docs to listen, which means perhaps you should try another doc, younger, with a GROUP practice of internal meds or neurology docs. All the best, GG

[debbluebird]

I am also so sick of this. I am sick of being so tired all of the time. I am sick of dragging around. It's all I can do to walk across the room, much less going out to get somewhere. I am so exhausted all of the time with no energy. It seems like that it's getting worse, even though I am getting a little sleep. I think I'm averaging 3 to 5 hours, which seems like a lot. I should be happy with that. Especially to those who are sleeping less. I'm sorry for that. It is just so hard to do anything. I have to make myself do everything. I used to run circles around people with my energy. I know part of the reason is that I take my CPAP mask off or it leaks. I know then that I'm not getting quality sleep. I get claustrophobic with my mask and/or I get hot with being all covered up. Sometimes I feel like I can't breath and rip it off. Then, just standing is an effort, I always have to sit down after a short time.
Now I feel like that's all I do is complain. I hate the night. Sometime is feels like I"m just counting the days before it will all be over for good. No more pain, no more exhaustion, no more nights. It could be another year or 20 plus years. Who knows. The thought of living that long with this more than likely getting worse, is almost too much.
When I was able to reduce my meds, I thought somehow I would feel better. In some ways I have. I've lost a little weight which helps, but this exhaustion just weighs me down. I am very fortunate to have a husband that understands. He tries to help me where he can. I know this is hugh. I tell him so. I'm sure he gets sick of all of this too. He has his own issues to deal with.
If I, we, could only sleep to feel rested, that would be a miracle. I am grateful for the people on this site and the support. It's a new day and I will trudge on. I do contine to try. I go to water aerobics three days a week. I sew and paint. I participate in activities with my friends, which forces me out of the house. I have made three quilts in the last year. I'm about to finish another one. I have embroidered shirts for the Grandkids. I'm going to make little dresses for needy girls with my material scraps. Those are going to be fun to make. We are still working of remodeling our little house, 600 sq ft. (I help where I can). I paint landscapes. I take photos of the Rocky mountains that are around us for ideas to paint. When I think of all of that, that is good. When I was working, 12 hours a day, I didn't have time to do any of that. After saying all of that, I feel better. Oh well.

[ViewsAskew]

I oh-so wish you weren't feeling that way....and wish that I didn't absolutely understand and feel empathy because I've felt (and often feel) exactly the same way.

[Polar Bear]

We all know exactly how you are feeling and you have our empathy and our best wishes.
However, that doesn't take away your discomfort and frustration.
Congratulations on getting rid of some weight, give yourself a pat on the back for that.
And please know that we all care.

[rthom]

I wish there was something we could do to help, If there is..... Maybe we could all send you material, and then you would have something new to do----organize and find room for it all, lol. Anyway, you have been very supportive to everyone here--so if there i anything more we can do let us know. Otherwise, remember we are all here for you.

[Betty/WV]

I too understand where you are coming from. I am getting some relief from the Miraex but still I only sleep 2 or 3 hours at a time. It seems I only do what I absolutely have too. I hate the weight gain, the depression, and I really really hate the nights. But you sound so active, and you are accomplishing so much. As someone said "to give yourself a pat on the back," I agree. I spend a lot of my time in my nightgown, watching TV. There are so many other things I SHOULD be doing. I recently started cardiac rehab, I had a blockage and had to have a stent put in my arterie. It will be a struggle getting there 3 days a week. Just getting ready to go anywhere wears me out.

So give yourself a lot of credit, at least you are doing something productive with your time. But I know how hard it is when you are so tired. That I understand. Take care and I wish you the best. You are doing a good job under the circumstances.

BETTY/WV

[debbluebird]

Thanks everyone. I guess what really bothers me the most is that I have always been very active. I'm not the type to sit and watch TV. Now even when the TV is on, I'm usually sewing. I have two more quilts to make. After that who knows. I want to do more painting. The weather has finally broke here. In the 50's to 60's. I felt better today. Maybe because I spoke my mind. That always works for me. So thank you all for listening.

[rthom]

[dogeyed]

I feel for you, DBIRD, and hope eventually SOME doc will provide you with the drug you need (opiate) to kill this RLS nonsense. I take Tylenol-Codeine #4, and it stops the restlessness, stops the pain, and allows me to sleep good. It is about the mildest form of an opiate you can get, and yet even tho I had the severe painful kind of RLS, it knocked it out cold. Go ahead and BEG one of your docs to give you what you need. There are neurologyg government websites that talk about the categories of meds you can take for RLS, and opiates is one. You should not have to spend the rest of your life struggling with this, when COULD BE relief is just one pill away. Always, GG

[Betty/WV]

Amen to what you just said, dogeyed. Opiates are a recommended drug for WED/RLS. Shows how much doctors know.

[EeFall]

I created this thread April 23rd, 15 days ago and NOTHING has changed except I am closer to calling it quits at work. I worked 5 hours today after having a few hours sleep last night and then being woken up by RLS at 2am. I go to work and I know after 2 cups of coffee I am extremely tired so I go down to the machine and purchase two 15 ounce energy drinks and drink them down.

The whole time I am nodding off and waking up within a few seconds from RLS jerking me awake. At 10 am I had enough and put in for my 5 hours and 3 hours of vacation and left. I am beyond tired. I have to take many drugs just to be able to take a shower and get out the door. Help me! I scream to myself, or God, or whoever runs this madness called a world. I am sick to death of this situation.

I'll talk to my wife about taking early retirement when she gets home from work and she will once again talk me out of it. I shouldn't even be behind the wheel when I feel so extremely, severely tired to the core of my being. A day or two of sleep just isn't going to do it. I would need at least 3 days of 8 pldssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss. See, I feel asleep just now, I don't even remember what I was typing.

It doesn't matter, I will just have to carry on until they fire me or whatever. I am soooo tired. I'm sad, very sad. Can't whoever created this mess just end me. Why am I being tortured? I don't think I have done anything to justify this. Mainly it drives me away from the possibility of God. If this is his great design I don't want any part of it! dsssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssklp Get the *&^% off my couch I just yelled to no one!

It is a sad state of affairs, one might say. I'm having a very bad day, week, month, year, life.

[rthom]

Have you stopped using anything lately? Maybe your homeopathic remidy? I wonder what is different for you.
Sorry you are having it so hard right now.

[Polar Bear]

It seems at times that we take ourselves around in an unending spiral.
We know something needs to change and it seems impossible that we could ever achieve this.

I totally understand your need for early retirement, how blissful would it not be to forget about watching the clock.
Some of us have managed one way or another to arrive at some sort of a solution.
Ann/Views has adjusted her working situation to suit.
The economy forced my earlier than previously anticipated retirement.
I know you have previously said that early retirement isn't really an option for yourself, but would it be possible to change your working day to suit your own body timetable.
Hmmm... your symptoms possibly don't make any time a good time.

Those who do not suffer this disease have no idea of the rippling effects in our lives.