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 05-21-2009, 09:35 PM #21
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In an earlier post someone made the distinction between "muscular type" of pain and how they found methadone to be most effective with this discomfort.

I agree 110% and would go further that if you are having the radiculated nerve pain that many people with spinal issues or complications have - and I had an episode with earlier in my life - that methadone may be totally useless in helping with this.

My primary pain is a combination of severe muscular pains in both legs that is akin to feeling like they are literally being torn away from the bones. I take 240 mgs of Methadone a day so I can stay semi functional.

It wasn't until I found this board earlier this month that I began to fully understand how few options are left and how unsustainable my current path is long term.

Good luck!
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Old 05-21-2009, 10:59 PM #22
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Default Methadone use


Hello Michael,

I was in a motorcycle accident in 2003. I still own my house out in Sacramento, I'm still hoping fora miracle. After all the broken bones, torn liver, ruptured kidney and punctured lung healed. I developed RSD/CRPS. I was lucky that I had a really great Doc who tried me out on different drugs. I have been on Methadone for 5 years now. I take 300 mg Lyrica per day, 30mg/40mg Methadone per day depending on how bad the pain is. I never got any kind of high or dizziness from it at all. I rarely take the extra pill. I had many concerns about the dependency factor, but I have tried going without the Methadone. The pain goes up in a serious way. I have done the same thing with Lyrica and I have the same result. In the beginning, I was on Norco and that worked for the first 2 years. Then it stopped working. Oxycontin didn't work for me at all. Morphine didn't work either. I get the best result from the Methadone, Lyrica and Cymbalta. This pain however is insidious, it never stops it is sooooo sooooo painful. I will keep on looking for something else until I can get some relief. Have you ever tried Hyperbaric treatments? I'm not sure why I never had any kind of problems with the Methadone, but right now I can't do without it. Let me know if you have ever heard of Hyperbaric treatments.
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Old 05-22-2009, 07:34 PM #23
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Default Methadone intolerant

After a grand total of five days on methadone (long enough in light of the drug's long half-life to get the amount in my bloodstream up to its dose dependant maximum) my pain doctor agreed this afternoon to let me throw in the towel and go back to Oxycontin until I see him in a month, where methadone (for me) was worse than ineffectual.

I started it on Sunday, taking 10 mg. 3x/day. And as noted in the initial thread in this post, by Monday I was so stuporous that it was suggested that I change the dosing to 5 mg. in the morning and at bedtime, with 10 at mid-day, when the pain was typically at its worst. I was okay for a couple of days thereafter, but then by Thursday, as my blood levels continued to rise, I was totally messed up by my mid-day 10 mgs. (okay, I know a number of you folkj are on doses that are an order of magnitude higher) and was concerned where this arc was taking me. I called my doc. who said to skip the nighttime dose and then just stick with 5 mg 3x/day beginning today, commenting that the good news was that we had found an opioid I was sensitive to.

This morning, I drove to a store near my home, and realized that I was having trouble staying awake, notwithstanding a 200 mg. Provigil with the rest of the morning meds. Around 1 pm I took the afternoon 5 mg. dose and by 3 pm was totally out of it. Fortunately, I was able to reach me doctor who told me to get off of it entirely and go back to the at-best marginally effective Oxcycontin, where I still had enough of it to get through a couple of weeks. It's now past 5 pm, I'm still messed up, overheated, never did get any pain relief, and am dependent on enemas of all things, notwithstanding my regular use of various medications that should of addressed that issue.

Now, my reaction is no doubt atypical and might be due in part one or more of the many medications I take: Xanax being high on the lists Mrs D was kind enough to provide. Whatever the cause, I seem to have drawn up a whole bucket of side-effects without any pain relief to show for it. Strange daze indeed.

Mike
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Old 05-22-2009, 08:02 PM #24
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Quote:
Originally Posted by fmichael View Post
After a grand total of five days on methadone (long enough in light of the drug's long half-life to get the amount in my bloodstream up to its dose dependant maximum) my pain doctor agreed this afternoon to let me throw in the towel and go back to Oxycontin until I see him in a month, where methadone (for me) was worse than ineffectual.


Mike

Sorry about your experience, Mike. For about the first week I took the med remember that I was very spacey. My dose is 5 mg 3x a day and I weigh between 130-135 lbs . But after that I settled down and could think better. I doubt I'm as sharp as I was before I started taking so many meds (I take a total of 3 or 4 Percs a day also), but I'm willing to swap some mental accuity for the improvement in pain relief I get from the Methadone.

I sincerely hope you find an answer soon.

BTW - what is Provigal? I've seen it mentioned a few times on this board. Do you use it as a sort of caffeine substitute?

Sandy
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Old 05-22-2009, 09:25 PM #25
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Quote:
Originally Posted by fmichael View Post
After a grand total of five days on methadone (long enough in light of the drug's long half-life to get the amount in my bloodstream up to its dose dependant maximum) my pain doctor agreed this afternoon to let me throw in the towel and go back to Oxycontin until I see him in a month, where methadone (for me) was worse than ineffectual.

I started it on Sunday, taking 10 mg. 3x/day. And as noted in the initial thread in this post, by Monday I was so stuporous that it was suggested that I change the dosing to 5 mg. in the morning and at bedtime, with 10 at mid-day, when the pain was typically at its worst. I was okay for a couple of days thereafter, but then by Thursday, as my blood levels continued to rise, I was totally messed up by my mid-day 10 mgs. (okay, I know a number of you folkj are on doses that are an order of magnitude higher) and was concerned where this arc was taking me. I called my doc. who said to skip the nighttime dose and then just stick with 5 mg 3x/day beginning today, commenting that the good news was that we had found an opioid I was sensitive to.

This morning, I drove to a store near my home, and realized that I was having trouble staying awake, notwithstanding a 200 mg. Provigil with the rest of the morning meds. Around 1 pm I took the afternoon 5 mg. dose and by 3 pm was totally out of it. Fortunately, I was able to reach me doctor who told me to get off of it entirely and go back to the at-best marginally effective Oxcycontin, where I still had enough of it to get through a couple of weeks. It's now past 5 pm, I'm still messed up, overheated, never did get any pain relief, and am dependent on enemas of all things, notwithstanding my regular use of various medications that should of addressed that issue.

Now, my reaction is no doubt atypical and might be due in part one or more of the many medications I take: Xanax being high on the lists Mrs D was kind enough to provide. Whatever the cause, I seem to have drawn up a whole bucket of side-effects without any pain relief to show for it. Strange daze indeed.

Mike

Mike,
I started methadone, @ 60mg. / day.
I had no side effects. None.
I took no other meds, besides Diazepam, up to 20 mg / day.
Oh, and something Flex, to sleep.

I don't know and can't say.
I'd guess (I would NEVER take Xanax, instant gratification). But there's something in your mix, that's making the wonderful pain relief of methadone impossible for you. You'd hafto give a full list, and I'm not a doctor, but, that's what you need, a full list to your doctor to help.
Zanex is poison, as is provigal, IMHO.
And, they must be tapered off.

As I said, I'm not a doctor, but I do know that provigal, DROVE my pain!
I don't know why you're on it. You do.

There are of course, some of us, who cannot take methadone.
If that's you, I'm sorry, I'm not attacking you.

Just be sure you have a good neuro, or PM who knows what they're doing, and whom you trust, prescribe ALL your meds!

As far as almost ALL pain meds go,
if you're sedentary,
nothing like Miralax, to keep things "moving"....

Hope this helps!

Pete
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Old 05-22-2009, 10:18 PM #26
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Excellent Post. Very Informative. Thank You ALL
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A Positive Attitude Will Assist Me Toward An Active Life, Once Again
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 05-24-2009, 04:16 AM #27
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Sorry for being late to respond. I'm back on the Oxycontin and much better for it.

My pain doc. is one of the best in California, and I've had an excellent neurologist as well, although he is in the process of retiring, so I'm looking.

One thing I've learned from this experience is how different we are when it comes to meds. By example, Pete and I had virtually opposite experiences with both Methadone and Provigil: a "wakefulness-promoting agent" with cardiac effects somewhat but not - at least compared to the effects of most ADHD meds on adults - greater than the controls, e.g., Tachycardia appeared in 2% of the test subjects taking the drug, as opposed to 1% for the controls. http://www.provigil.com/media/PDFs/prescribing_info.pdf

Maybe it just in our hereditary profiles vis-a-vis drug metabolizing enzymes, but I suspect it's more than that, where I've been told that there are a number of pairs of drugs that share identical enzyme breakdown paths, yet I can tolerate one and not the other. Then too, when it comes to Xanax, most people use it to relieve anxiety - and some people abuse it - yet I can't even feel it: it just stops the shooting pain in my feet. (There was one study I came across some time back that attempted to explore Xanax's effect on neuropathic pain, but didn't come up with anything statistically significant.)

I guess that's why I have a difficult time condemming the off-label use of drugs, so long as they are prescribed by experienced clinitians.

And to Isabel, I would love to try HBOT, but for the cost factor, where one apparently has to do them more or less in series and they're not covered by insurance (at least not by mine). So with discretionary income going toward our kids' educations, there's not a lot of room for treatments that aren't going to be at least partially covered by insurance.

Finally, a note of thanks to Mrs. D: I went through your link to methadone and drug interactions carefully. It was excellent.

And my thanks to everyone who took the time to respond to this thread. Your information (and concern) was greatly appreciated.

Mike

Last edited by fmichael; 05-24-2009 at 04:55 AM.
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Old 05-24-2009, 07:06 PM #28
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Mike,

What you write is all true.

I want to add this.
At one point in my treatment, I went to a PM psychiatrist, to have her take me down, to least meds possible.
I got to the point where I stopped methadone completely for four months. I don't recall if I took some otc med, but that would have been the most.
I do believe I still took some diazepam for sleep, and headache prevention.


I was then, we thought, "clear enough" to make a decision.
That decision was, NO WAY!

God gave us these meds, I'm going to make use of the smallest amount I can!
(I had work to do, and a family to provide for).

And, so I did.
My opinion of Provigal is only that. It did give me benefit for three years! After the tbi!
Then, MY propensity to HA, forced me to stop.

To each, their own. What's right for me, might not be right for you!

I learned about HBOT, by actually diving.
I took lessons, and thought, ya know, there's NO WAY, I can do this tomorrow. I was exhausted. I woke up the next day, and felt great!
So I know that the O2, permeated into our muscles at "depth" is a great pain reliever, and, it's also good for our grey matter.

I use O2 with my cpap.

Also, Mike,
I've been on other ADHD meds, due to the TBI, and some helped for a bit. That was all.
Then, they drove me nutzo.

So, as you're stating, You do what' best for you, because you have a doctor you trust!

Very good observations, and writing Mike!
I thank you!!!

Pete
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