Riding the Big One (RLS 24/7, Hanging Ten)

[EeFall]

Slept 7 hours last night using only 2 gabapentin to make me sleepy. The roller coaster continues but at least it is back to moving up the tracks rather than down.

[ViewsAskew]

I'll take up any day.

[EeFall]

2 more good nights of sleep!

[Polar Bear]

It's like winning a prize.

[EeFall]

The bad news is the nurse confirmed today that naloxone part of Suboxone is designed to mess up opioid receptors in the brain so that one can't get a drug addict type high but in so doing it will make my shoulder surgery extremely painful afterwards.

They will be giving me dilaudid, morphine, ibuprofen, and tylenol. All this is dependent on my doctor who gives me Suboxone. They said few are even able to give it as a prescription and the ones who are authorized know much more about it than they do, so they are going to contact him to make sure what they intend to give me will be the best thing for me.

I actually saw 2 nurses separately about this and they are very concerned because of my severe RLS and obstructive/central apnea. Normally they would have a patient that was on Suboxone gradually come off of it for a month or so before even having the surgery because it really does nullify narcotic pain medications. The primary nurse did not sugarcoat the situation and said that it is just about the most painful surgery one can have (shoulder surgery) and so they will be giving me all those meds but they may not help much.

She mentioned using a lot of ice packs on the shoulder. Putting them on for 20 minutes and then off for the same amount of time. She said it was very important to not continually use the ice pack but only 20 minutes at a time. She said it is about the best chance to reduce inflammation of the shoulder and thus the pain.

My wife has talked this over with me today and she is going to have a freezer full of them (these ice packs are ziploc bags with rice). She is going to take care of the ice packs and all of the medications, which the nurse mentioned too. It sounds like I may be sort of out of it for awhile, maybe a week or two. At least I know up front that it is going to be hell. Last surgery with Suboxone, the hernia surgery, they had warned me but I didn't really believe it I guess. At the height of my agony I called them on the phone and was yelling and cussing (I was out of it). Maybe it was good to have gone through that, at least I have a little idea how it might be, but it will be worse.

I wish I had an out but there isn't one unless my sleep doctor knows something they don't. It is not like he can change the opioid receptors though When one thinks that severe RLS just can't get anymore absurdly hellish, a new hell is created. I just hope that it will all be worth it. I hope I get my shoulder back and a year from now I will be pain free.

[ViewsAskew]

You'd think you could switch to plain suboxone for awhile. They make it. I doubt the naloxone is helping the WED - but maybe it does.

I'd be really unhappy right now - heck I'm unhappy reading it! You must be feeling a bit of concern about this.

[cornelia]

I would think too you can get plain Suboxone like with OxyContin. You get get that without Naloxone but also with, like they did in the OxyContin study if I'm not mistaken. But I guess someone would have told you that surely?

I hate it you have to suffer again; severe RLS is enough to have on your plate.
Corrie

[EeFall]

Thanks for both of your posts. I will be alright, just another thing with WED. I slept bad enough from just plain worry, even when I did sleep I had a continuous running nightmare, gawd, anyways I took a sick day and I'm home until Monday. I am pretty tired but okay.

I hate to mention it but one of the reasons for the bad sleep and nightmares was that I got a shoulder pain after being in bed for about 20 minutes and I totally freaked! It was the left shoulder, not right. I just verified again that it is sore exactly where my right shoulder started last year I'm hoping that if I stop lifting heavy things altogether and take care of my left arm now maybe it won't get so bed that I need surgery. It is just one of those things where I try to tell myself nothing can get worse...

[debbluebird]

What can I say ? At least you know what's going to happen. The ice will help. I used the ice for a long time. I also slept in the recliner for a long time. The physical therapy afterwards will be important in the recovery. My doctor told me that my range of motion will improve over the next year. I will continue the exercises. (I realize that my surgery was different from yours.) My other shoulder has been waking me up a few nights. I am guarding it too. I don't want to have the other side done either.
This too shall pass.

[EeFall]

What can I say ? At least you know what's going to happen. The ice will help. I used the ice for a long time. I also slept in the recliner for a long time. The physical therapy afterwards will be important in the recovery. My doctor told me that my range of motion will improve over the next year. I will continue the exercises. (I realize that my surgery was different from yours.) My other shoulder has been waking me up a few nights. I am guarding it too. I don't want to have the other side done either.
This too shall pass.

I got a call from a third nurse today, the one who was there for my previous hernia surgery. They are afraid that I will go into respiratory arrest. She wanted to know if I would spend at least two days in the hospital so they can watch me. I said I would rather go home as planned. She wants me to contact my sleep doc Monday and see if he will give me at least twice my Suboxone prescription for a week or two after surgery, they think it would be the best shot I have for pain management. I was scared before but now I'm thinking they really think I might not make it. I can't believe this. She knows the other nurses are going to try to contact doc but said it would be easier for me to try too.

I am so stressed out, they aren't helping me by making me get involved in this. I am not who I used to be, things like this make me crazy. My mind is not as sharp as it once was, I think I do a pretty good job of hiding it at work but, it is really difficult to explain. All I know is I need the surgery and want it over with. The nurse said something like so you would rather have to go into the hospital Monday. No one mentioned me even staying at the hospital until the conversation on phone today. Can it really be that painful?

Can't I just sit in my recliner built into my sectional, have the VPAP machine sitting here and my mask on, and have my wife giving me the meds and ice. Could it be so bad that I would start screaming like a madman? I just don't know what to do but they have scared me, if that is was what they were trying to do they have exceeded but I still have no choice, I have to have the surgery. I'll call the doc Monday and see what he says (if he is even available) but the other thing is anymore than 4mg of Suboxone makes me incredibly itchy. Presently at night I have some serious itchiness, more Suboxone would make it much worse.

[ViewsAskew]

Yeah, I have to admit - they must not have thought through how all of this was going to make you feel. Much better for them to do it!

[EeFall]

I'm writing note to my sleep doc tomorrow, I will be able to explain it better to him in a letter. It is difficult for me to talk one on one about something like this. The meds and lack of normal sleep makes it so I tend to forget important points and info, especially talking on phone. That is all I'm going to do. I will leave a number for the good nurse (rather than the one who called last who seemed mean spirited). I will let them work it out.

All of them to varying degrees are either afraid my pain will be too great or the meds so high that I will stop breathing. If I have to stay in hospital I would have to contact insurance before surgery to get okay or I could be stuck with whole bill. If I stay on couch recliner with VPAP machine mask on while (if) I sleep I doubt I will stop breathing (it's job is to prevent that). As far as pain I can take a lot (wife agrees) so I think it will be ok. If I'm wrong the worst that could happen is i won't have to worry about WED anymore or pain for that matter.

My wife said maybe I should just never have the operation but what kind of life would that be? Now with the other shoulder getting sore I am looking at more operations not less. Last year they took a cyst out of my back and didn't deaden far enough down and they did a deep stitch and I felt the full force of the pain. It was terrible but I ended up calming down the doctor and her assistant. I think it was worse on them. I would hate to go through that for days but I think I could if I had to. No worse than getting off Suboxone. I'm not even sure I can get off it. In fact I am mostly positive that I can't get off it by myself. I would have to be hospitalized for several months to detox.

I slept okay last night but writing this in bed at 11:45pm after laying here for an hour and half not being able to sleep. My wife was out 5 minutes after hitting the sack.

[debbluebird]

It is a legitimate concern that you could stop breathing. During my second knee surgery when I was in recovery my heart rate started dropping. No one was around except my husband. The nurses were across the room. They had given me a lot of drugs. I do not know what I was given. My husband had been watching the monitor and saw the heart rate. He slapped my face, called for the nurses and shook me. I don't really know exactly, since I was out. But it really scared him. Then I woke up screaming from a pain in my thigh afterwards. Even now on a regular basis my heart rate is lower than it ever used to be because of the methadone.
I'm glad they are concerned and everyone is contacting your sleep doctor. It seems like now days that no one thinks about what can happen until after the fact. Also the anesthesiologist should be in on the discussion. They might by helpful as to what to do.
But I'm sure it will all work out.

[EeFall]

It is a legitimate concern that you could stop breathing. During my second knee surgery when I was in recovery my heart rate started dropping. No one was around except my husband. The nurses were across the room. They had given me a lot of drugs. I do not know what I was given. My husband had been watching the monitor and saw the heart rate. He slapped my face, called for the nurses and shook me. I don't really know exactly, since I was out. But it really scared him. Then I woke up screaming from a pain in my thigh afterwards. Even now on a regular basis my heart rate is lower than it ever used to be because of the methadone.
I'm glad they are concerned and everyone is contacting your sleep doctor. It seems like now days that no one thinks about what can happen until after the fact. Also the anesthesiologist should be in on the discussion. They might by helpful as to what to do.
But I'm sure it will all work out.

I think that the anesthesiologist is in on all this. I did send a message to my sleep doc today. I wrote it all out succinctly (or so I thought) and then was informed by the email program that they have at their hospital that I was over the character count by about a 1,000 characters I then had to go into the message and throw out over half of it. I'm done with the whole thing and well let all of the people who are being paid to fix me up to do just that.

That must have been scary for your husband! Waking up screaming with pain sounds like a real nightmare. My wife is even more freaked out by this now after telling her your story. She is planning on now setting up the bottom part of a trundle bed we have out in the living room so she can sleep on it by me, at least for a few days after the surgery. I told her she didn't need to do it but she is anyway. Actually it gives me some comfort in knowing she will be looking after me.

This dang WED messes everything up, even surgeries. Who would have thought that?

[ViewsAskew]

I like the idea of making them deal with it! Sure, I'd want to know they did, but it's really their job.