Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-25-2010, 12:13 PM #1
hollyk24 hollyk24 is offline
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Default Breakthrough pain/talking to the doctor

I have a medication related question . . . . Right now I'm on oxycodone 15mg/5 times a day, and take amitryptiline at night (10mg). I have gone through multiple nsaids, non narctoic pain relievers, patches, neurontin, lyrica, tramadol, vicoden, etc . . . . And they all either have awful side effects that I can't tolerate, or do nothing for the pain. For a couple months my doctor had me on morphine controlled release and 5mg oxycodone for breakthrough, but I couldn't stand the morphine, made me so sick to my stomach and I felt so tired, even with smaller doses. So he ended up raising my oxycodone to 15 and that is all I can take during the day.

Lately, as I have been trying to not use my boot and do my physical therapy excersices, I have been having really bad flare ups and breakthrough pain almost every day. I take my medication exactly on schedule, and don't take an extra pill because I don't want to get in trouble. At my last pm appointment I talked to my doctor about my flares and breakthrough pain, and told him that I can't function or work when it happens. He told me to take the lyrica when it gets bad. His therory is that since I'm not working or functioning at all when the pain is so bad, the side effects from it (total zombie like state, general feeling of being not all there) should be fine since I'm not doing anything anyways. But my goal would be to control the pain and still function. I don't want to be seen as a drug seeker, but I can't stand taking the lyrica, and I've had another doctor tell me that it doesn't really work to it's full extent unless it's taken regularly. I don't know if that's true or not, but I would just like to be able to function. I know that's probably too much to ask for full out flare ups, but most days, especially in the morning and evening, my pain is out of control. I'm usually home by 1pm (leaving work early) to lay down because I can't do anything else.

How do I talk to my doctor about this without sounding like I'm asking for drugs? I don't care what it is, as long as I have something there to treat breakthrough pain.
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Old 02-25-2010, 12:39 PM #2
SandyRI SandyRI is offline
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Have you ever tried Methadone? Its great for nerve pain. You need someone that knows what it goes with to perscribe it for you - I know that it doesn't go with Fentanyl. I'm not sure what else it doesn't go with - maybe the oxycodone that you are on now.

I am getting Lidocaine infusions. I've had 6 to date. They have taken the edge off my pain, I feel like things are better controlled than they were before I started them. It took a while, and a few infusions, before I could feel much of a change in my system.

Good luck to you - I know how hard it is to try to work when you don't feel well. Try your best to stick with it...XOXOX Sandy

Last edited by SandyRI; 02-25-2010 at 12:41 PM. Reason: editorial
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Old 02-25-2010, 01:01 PM #3
hollyk24 hollyk24 is offline
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I'm trying . . . . Is it normal to be prescribed something for breakthrough pain? Or is that unreasonable . . . . It just seems like my current meds only provide enough relief to function at a decent level about 30% of the time.
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Old 02-25-2010, 01:02 PM #4
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I haven't tried methadone . . . . As far as the narcotics go, I've just tried vicoden, percocet, oxycodone, and MS contin
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Old 02-25-2010, 03:20 PM #5
RNcrps2 RNcrps2 is offline
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I agree Methadone works well and i it doesnt effect the brain like the other narcotics.
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Old 02-25-2010, 03:59 PM #6
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I have heard that stopping methadone is much worse then other opiates . . . . Is that true? I read that the withdrawal period can be much longer and drawn out, and I don't want to suggest anything to my doctor that I don't know all about first.

Is it a pill? I've only heard of methadone in reference to the "clinics" for addicts. How is it used in pain management? Can you guys tell me more about your experiences with it?
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Old 02-25-2010, 05:08 PM #7
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It's prescribed in pill form. I took 5mg 3x a day. Pete, who used to post on this board often, was at one time prescribed up to 80 mg a day (I think I have that right). My dose was a pretty low dose. It had a pretty good impact on my pain, which was getting totally out of control at the time. I was only taking percocet and it wasn't working well any more.

Then several months later my PCP put me on Fentanyl. For a long time I was on fentanyl with perc and methadone for breakthru. I didn't find out until 5 months later that the main ingredients in fentanyl don't go with methadone - they work AGAINST each other. Dr. Getson told me that. So I immediately stopped taking the methadone. I was on such a low dose that I never had any withdrawal symptoms.

My fentanyl has worked much better since I stopped the methadone - I've stopped taking as much breakthru meds and I've reduced the strength of my patch a little.

I've never gone thru withdrawal, because I have never gone off my meds completely. I want to slowly taper down a little. My head hurts too much to go off them completely - I can tell just by cutting back a little bit that it will be impossible to go without them for now.

I'm interested in seeing what people have to say about withdrawal, also. How do they go about it? Is there a med for that?

Thanks, Sandy






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Originally Posted by hollyk24 View Post
I have heard that stopping methadone is much worse then other opiates . . . . Is that true? I read that the withdrawal period can be much longer and drawn out, and I don't want to suggest anything to my doctor that I don't know all about first.

Is it a pill? I've only heard of methadone in reference to the "clinics" for addicts. How is it used in pain management? Can you guys tell me more about your experiences with it?
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Old 02-25-2010, 06:00 PM #8
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I know that the withdrawal period can be significantly longer then other opiates. I'm not sure if the symptoms are any different, but that alone makes me cautious to switch. I am not willing to accept that I'll be on these meds the rest of my life, so that's always a concern for me. I know the oxy won't be a walk in the park either . . . . I guess it's really gonna come down to the question of how much it helps. I have read a lot of things about it working well for this sort of pain, so I'm not going to discount it as an option.

Anybody that has any experiences with this I'd love to hear . . . .
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Old 02-25-2010, 07:53 PM #9
AintSoBad AintSoBad is offline
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Hello holly,
Sandy, I'm still here, (I have a friend with RSD, RA, and now Cancer, who I'm trying to help privately)....
I'm sorry I haven't been here as often. (I can grate nerves anyway, so ya'll have a break!)

Holly,
I've taken methadone, pill form for about 20 years.
Side effects: the biggest are constipation (easily remedied) and, too much can cause breathing arrest. Since I have sleep apnea, I'm very aware of that one!

I've taken up to 100mg, after my second accident (that I shouldn't have lived through).
I started @ 60 mg.. and, wanted to cut down on ALL medication. So, I was sent to a very good PM psychiatrist @ Jefferson, in Philly, and we slowly and scientifically got my methadone down to 12-15 mg/day.
Then accident 2.
That's when I shot back up to 60 / 80 / 100mg.
I'm back at 50-60 mg/day now. (if one day I only take 50, I have ten extra for breakthrough, I never take more than 70 now)..rarely.
some diazepam up to 20 mg/day.
60mg of cymbalta.

Then other things for other injuries.
Aricept for my brain injury.
and, migraine meds.

zanaflex, for sleep/pain.

So, no, you can't just STOP taking methadone. Especially if you have pain!!
But, I was told to think of it as "blood pressure medication", I'm gonna take it for as long as I live, or until a cure, or
some better med comes along for RSD (full body) pain.

It's been a blessing. I'd be curled up in a ball, without it.

Speak to your doctor, and take his advice. It's getting to be rather difficult with pharmacies, with so many pharmacists getting caught stealing it, along with oxycontin, etc..

I used to take FAR TOO MUCH of lesser medicines. Now, with methadone, I have the proper medication, at the proper dose! 60mg/ is average.

Be Blessed, and,
Be Well!

Pete
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