Suboxone - Living on the Edge

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doety
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Re: Suboxone - Living on the Edge

Postby doety » Tue Apr 29, 2014 7:06 pm

My whole story about Suboxone is on the board somewhere. Please be so careful with it.
Almost impossible to stop it. When I finally did, after titrating it so slowly, I walked for nine days and nights. The doc said it was a "sticky" drug, that no other drug (like oxy, etc.) would help and you just had to wait it out.

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Sun May 04, 2014 6:34 am

doety wrote:My whole story about Suboxone is on the board somewhere. Please be so careful with it.
Almost impossible to stop it. When I finally did, after titrating it so slowly, I walked for nine days and nights. The doc said it was a "sticky" drug, that no other drug (like oxy, etc.) would help and you just had to wait it out.


I will go on a quest to find your post about suboxone after writing this. I have had to get off many drugs that I was physically dependent on including methadone and I can already tell this would be hell to get off of, I knew that the first few days I took it. I have no choice whatsoever though. Nothing else works. Suboxone isn't perfect but it is the closest thing I have found yet to giving me a normal life. Thankfully the dose is staying the same. I tried to take more a few weeks back when it seemed not to be working as well but it made me so itchy I couldn't sleep much anyways. I went back to the regular dose after a few days and I am back to good sleep.

So I guess if this dose does stop working I will be between a rock and a hard place yet again. Nothing surprises me now after seeing the progression of this disease in my life. Even 30 years ago my sleep was beginning to get bad and it happened so slowly I did not realize that something was seriously wrong until 14 years ago. Now I can see clearly that it has progressively gotten worse, probably clear back to when I was a child.

There is no reason to think it isn't continuing to get worse, I just don't know how long Suboxone will treat it. Mirapex lasted for several years maybe Suboxone will too. I just have to continue to hope it will work or that there will be a new drug or a cure.

cornelia

Re: Suboxone - Living on the Edge

Postby cornelia » Sun May 04, 2014 8:39 am

It's scary Eefall, isn't it? Best is to enjoy while it lasts and live one day at a time otherwise it makes it so difficult to cope. I wish for you that it will last a very long time. Maybe by that time the implanted morphine pump will be the next and hopefully last step for you (and many of us on the board).

Corrie

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Sun May 04, 2014 1:46 pm

cornelia wrote:It's scary Eefall, isn't it? Best is to enjoy while it lasts and live one day at a time otherwise it makes it so difficult to cope. I wish for you that it will last a very long time. Maybe by that time the implanted morphine pump will be the next and hopefully last step for you (and many of us on the board).

Corrie


Yes, one day at a time and enjoy it while it lasts :D after the morphine pump we graduate to the opium den :mrgreen:

http://en.wikipedia.org/wiki/Opium_den

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Tue May 06, 2014 11:57 pm

It doesn't matter if I do get 6 or 7 hours of sleep a night. I am not me anymore, this dang Suboxone is as bad as all the other stuff. I can hardly cope at work. I have zero choice though which makes it an impossible situation. I don't even bring it up to my wife anymore because there is nothing she or I can do about it. I have to work for all the obvious reasons but I am making mistakes and I'm getting cranky.

The good news is that I cancelled 6 doctor appointments today. My shoulder has completely stopped hurting. No way am I getting surgery for a perfectly good shoulder. I am gradually doing more things with it, cautiously, and it seems to be working fine. Maybe it will act up again but for now I'm just going to enjoy having my health back in that regard.

ViewsAskew
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Re: Suboxone - Living on the Edge

Postby ViewsAskew » Wed May 07, 2014 5:49 am

I've honestly found the only way I can really manage these meds it to alternate them. As much as you hate pramipexole, you may find you need to use it sometimes. I augment in less than a week - always have. But, I can still take it one or two days, then one day of opioids, then back to the pramipexole. It prevents either drug from doing the worst to me and my psyche. You may find that this is the only option that prevents the opioids and similar drugs from taking over your personality.

I've had to stop doing it only because the depression caused by the pramipexole was unbearable. I have been tempted, however, to try it again and see what happens.
Ann - Take what you need, leave the rest

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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Neco
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Re: Suboxone - Living on the Edge

Postby Neco » Wed May 07, 2014 2:56 pm

You should be careful with that shoulder.. If your Suboxone is masking the pain and you still have an actual injury it could get much worse.

Also, yes long term opiate use can cause memory issues for some people. Sometimes I have bits of bad memory where I forget about stuff, but nothing too severe. Not like completely forgetting about forums I visit or anything

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Sat May 10, 2014 2:00 am

Zach wrote:You should be careful with that shoulder.. If your Suboxone is masking the pain and you still have an actual injury it could get much worse.

Also, yes long term opiate use can cause memory issues for some people. Sometimes I have bits of bad memory where I forget about stuff, but nothing too severe. Not like completely forgetting about forums I visit or anything


Yesterday I did feel the shoulder for a second, not the stabbing pain that had been happening but it brought me back to reality and I am being super careful. The appointments have all been cancelled and I'm not getting another operation for anything unless it is absolutely necessary. I am having such a miserable time of it now that I don't want to add to it by sitting around in pain for months, and then to go through another year recovering. What I need is to go into a doctor's office and get the shot that cures WED, that is all I need :lol:

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Tue May 13, 2014 5:22 am

I took a 20 minutes nap at my desk at lunch time today, I usually do that but today 5 minutes before I would usually get up I was jolted up with RLS symptoms. I had a 2mg Suboxone on me and I took it immediately. I was okay after 20 minutes or so. That sublingual method of taking Suboxone hits me rather quickly. A little disturbing though to think that after taking 4mg a day for a few months that this would happen. I am going to continue taking 4mg and hope it is just a strange occurance.

I am sleeping really good most days. Last night was 7 hours night before was strange because I had to get up between 1am and 4am so I only got about 3 hours sleep, but the night before I had 8 hours! I can go a whole week having between 6 and 8 hours sleep a night though. Maybe the other night is related to today, I hope not. Nothing surprises me anymore though. I know the drill. If the RLS is getting worse, or I am building a tolerance I will know within the next couple of weeks.

I will ask the doc if I can increase it to 6mg then I suppose. Frankly I am afraid to say anything though because I don't want him monkeying around with my Suboxone (as in putting me on something else). Suboxone would be awful to get off of, I'm sure it would be worse than anything I have had to get off of before. Unless it were going up to morphine I'm not sure what else he could give me anyways. I've taken everything under the sun.

Remarkably my shoulder is still doing good and I have been mowing and using the weedeater, even cleaned out the house gutters and replaced every light bulb in the house with new energy efficient ones (which meant dragging around our 40 pound collapsible ladder). I have felt a little something in my shoulder sometimes, but it is not the sharp pain as before. I hope it lasts through the Spring and Summer at least.

Last May my wife broke her leg in two places by her foot and she is just now back to normal (more or less), it would be awesome if we could both be in good shape for the good weather. She has been out doing all kinds of gardening (which she couldn't do last year) and everything is looking great. I had several surgeries in the last year too so we are both sick of taking care of each other :lol: and are back to enjoying doing things together. Our grandkids have been coming over often and we are having a bbq with them and their parents tomorrow which should be fun. It was 77f today maybe hotter tomorrow.

debbluebird
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Re: Suboxone - Living on the Edge

Postby debbluebird » Tue May 13, 2014 3:28 pm

Sometimes I will have a little RLS while taking a nap. I don't take anything when that happens. I just get up, walk around and it's gone. I can sit back down after that. I only increase my drugs when the nights get messed up. Hope yours was just one of those things.

debbluebird
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Re: Suboxone - Living on the Edge

Postby debbluebird » Tue May 13, 2014 3:33 pm

There was a post today that I read, that inflammation causes RLS. I think that is correct. I have severe Arthritis. Now, that the joints are now replace that were so inflamed, I'm having less RLS. I only bring this up, because of your shoulder. It is probably inflamed. Just a thought for you.

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Thu May 15, 2014 8:33 am

debbluebird wrote:There was a post today that I read, that inflammation causes RLS. I think that is correct. I have severe Arthritis. Now, that the joints are now replace that were so inflamed, I'm having less RLS. I only bring this up, because of your shoulder. It is probably inflamed. Just a thought for you.


I have been reading your page about your surgery, it does not sound fun at all. As ViewsAskew mentioned the memory of what you are going through will fade, thankfully, as the length of time increases. Sorry to hear your sister is having problems too. My shoulder is fine (which is totally jaw dropping amazing). Yesterday I even used a shovel to take out a tree that had died last year, it was a small tree that didn't make it but I ended up digging a two foot diameter hole about a foot deep to replant a different plant in the same spot. My shoulder is like it had a total replacement already.

The only thing I can think of is that about a year ago I took everything out of the shed by myself including some very heavy things. It could be that I hurt myself then and it has healed itself. I am actually very strong and muscular (for going on 59 years old) so maybe it was just an injury that has mended. On the other hand it wouldn't surprise me if the pain comes back but in the meantime I will enjoy the (apparent) total recovery.

RLS is the bad. I went to bed at 10pm and got up at 12:30am. I have now been up almost an hour. I had been thrashing around for awhile before I got up, totally WED. Instead of taking more Suboxone I took an oxycodone 5mg. So it was last Monday that I had the RLS at work and Saturday got up in middle of night like now. So every 3rd day something is happening for the past week. 4mg of Suboxone is some very strong pain killer it is difficult to comprehend that my RLS is coming back. I will wait another week before doing anything different in case it is just an anomaly but it is not looking good.

As it is the 4mg Suboxone makes me really pretty itchy. Almost every night when I lay in bed it drives me batty. During the day when I am busy it doesn't bother me but laying down resting it does a lot. 6mg may not be possible. Each time I have tried that amount the itching is horrible. At least my arm is not bothering me. My dang left ear tinnitus (hearing sound) is always there and difficult to ignore. It is like having a pressure cooker valve going off in my head continually. At least with having poor eyesight or something like that there is a way to correct it but with tinnitus there is nothing to do about it but live with the constant noise.

So anyway there is my diatribe. I have been up an hour now and will attempt to go back to bed. I see that about all the oxy has done is make me itchier and a little nauseous :lol: dang meds.

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Sat May 17, 2014 2:07 pm

Thursday I ended up staying up until 3:30am but got up and went to work so I had a little over 4 hours of sleep. I am getting used to having 6 or 7 hours of sleep, sometimes 8 hours. Having 4 hours is different now than when I barely got any sleep. It must be that one gets used to not having as much sleep (but not used to it much for sure). I am very thankful for the sleep I have had, it is nothing short of a miracle. Also my arm, another miracle, I just don't get that instant stabbing pain at all anymore. I do feel a little something once in awhile but it is just sort of a reminder that it was having problems (hard to explain).

I slept Friday and last night. At work I was much more tired than I should have been with 7 hours sleep. I suppose it is just the result of having to take meds for sleep but it is so much better than the ordeal I have gone through in the last decade, especially the last couple of years, I can still be extremely high 5 happy with my life at the present time :clap: :thumbup: :wave:

I hope others start trying Suboxone, even though it is not perfect it is the BEST med I have had since RLS got so bad 14 years ago that I had to start taking them. It has given my life back. I do whine still about having to work because it is difficult not being fully normal but the reality is that it is good for me. If I can still be useful to society and make a good living then it is a good thing. For the next few years my job will be very busy, and for my design engineering profession, exciting. I don't doubt this will be my last few years working but at least I will go out with a bang rather than a whimper.

EeFall
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Re: Suboxone - Living on the Edge

Postby EeFall » Wed May 21, 2014 2:23 am

If I didn't have to work then Suboxone would be okay, but I do, and I can't handle it anymore. Today I almost quit.

ViewsAskew
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Re: Suboxone - Living on the Edge

Postby ViewsAskew » Wed May 21, 2014 3:50 am

This is not a disease for wimps! I suppose no disease is, but this really really is not!
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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