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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)

Methadone for CRPS/RSD

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Unread 05-19-2009, 12:49 PM   #1
fmichael
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Question Methadone for CRPS/RSD

My pain mgt. doctor, in whom I repose all the trust in the world, has recently switched me to methadone, where like so many drugs that had gone before it, Oxycontin was no longer working for me: a 20 mg. tablet would give me 90 minutes of pain relief, as opposed to the advertised 12 hours. As I expressed on another thread, when I asked for an increase in my prescription, which was quickly turned down on the grounds that the drug was simply not working for me anymore (I remember years ago when the same thing happened with Vicodin) and to increase the amount of the dose would be simply to invite something called Hyperalgesia or "abnormal pain sensitivity manifested as increased pain from noxious stimuli and as pain from previously non-noxious stimuli." http://neurotalk.psychcentral.com/thread87018.html And as noted in the other thread, in addition to being a strong relatively opioid, methadone is also an antagonist of NDMA (Nmethyl-D-aspartate) receptors, which makes it particularly interesting in the treatment of CRPS. Opioid Guidelines in the Management of Chronic Non-Cancer Pain, Andrea M. Trescot, MD, et al, Pain Physician, 2006; 9: 1-40, at 14, http://www.rsds.org/2/library/articl...sician2006.pdf

And for what it's worth, after some fiddling around and consultation yesterday with a clinical fellow (where my doctor is out of town at a conference) it's been determined that I will take a total of 20 mg. a day: 5 in the morning, 10 in the early afternoon (when my pain is almost always at its worst), and another 5 at night. So far it seems to be working fairly well, although I'm not yet in a position where I would feel comfortable driving on the 10 mg. dose, and that's even with a 200 mg. Provigil. And on bad days, I still have to dip into the oxycodone, in 5 mg. increments.

Now, I'm not particularly looking for lectures on the dangers of methadone, where I think I'm pretty familiar with them. Here's the current FDA "Prescribing Information" sheet for physicians, which I've more or less tried to commit to memory: http://www.fda.gov/cder/foi/label/20...134s028lbl.pdf I commend it to anyone who is interested. And as to the concern about respiratory depression that I expressed in the prior thread, I have been assured by docs, as well as my pharmacist, that it is no greater than it was for the levels of Oxycontin/oxycodone I was on, save and except that the risk continues even when the analgesic effect of a particular dose has completely dissipated.

What interests me is the experience of people who have actually used methadone, and in particular for CRPS or other chronic pain. (If you personally know someone who has used it, whether for chronic pain or addiction control, that may be helpful as well.) All issues are open, including effectiveness of pain control; alertness, mental clarity and concentration once you have become accustomed to the medication; bowel motility; male sexual functioning, etc. Any comments along these lines would be greatly appreciated. Thank you.

Mike
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Unread 05-19-2009, 02:15 PM   #2
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Hey Mike!
I've got rsd, tos, cervical, and lumbar discs (both lower quadrant), tbi...

I've been on Methadone since about 1991, started @ the "standard dose" (I know, what's that?) 60 mg. Wow, I got my life back, kind of!
I was busy, a single parent and running a business.
I was in another accident, as time went by, I first lowered ALL my meds to the lowest possible levels, and that brought my methadone down to 10-15 mg/day..
I also took and still do, diazepam.
After the second accident which caused the tbi, my dose went up to 100mg/day.
As long as I was busy, or on that (imho) "Evil Provigal". (for me, incredible migraine, and it was just legal "speed"). It did it's job with the tbi for a few years. Now, I can't even lick a pill without getting ill.
back to the methadone.
Now, I'm back to 50-60 mg. / day.
Along with diazepam, zonegran at bedtime (prophylactically for migraine), I recently stopped Keppra, due to behavioral side effects (Thanks Allison), and migraine meds as needed.
Also, some altzheimer meds for the tbi.

The methadone has always had a "Male sexual effect" on me, as I would imagine it would for a female. What numbs you, numbs you. I never had any "performance issues", I had "enjoyment" issues. (Wife ALWAYS finished before me, if I even did, how's that for role reversal?)

It does NOT fog my brain or thinking at all. No Buzz, No High.

Now that I'm more sedentary, and eat less healthier (bachelor) I use Miralax for my bowels. I use just what I need, no more.. And, I use it daily, Never prn!

And, I won't lecture you on the dangers, all these drugs are dangerous if not respected!
With my tbi, however, I developed sleep apnea, and I DO stop breathing!
I use a cpap machine now, and it makes all the difference. Don't get Drunk using methadone.


There are some "pains" that it does absolutely nothing for. Headaches, Migraine. I also occasionally worry that it "masks" other pain that might raise concern, normally, because I take a lot, everyday. (Although there are others who take 3X what I take). My teeth for example, it can mask tooth pain.
It won't do anything for "upset stomach", I still take a Tum or two, about once a week..

Other than that, any questions, I"m here for you!
I've been using it for close to 20 years. I've never found that I "needed more" just because.
I'm very happy with it.

I wish you Be Well, Mike!

Pete
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Unread 05-19-2009, 03:09 PM   #3
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A week and a half ago I went on 5 mg Methadone 3 x a day for my head pain. Prior to starting the methodone, my head pain was excrutiating, and the 5/325 Percocet (lightest dose) that I had been taking for my RSD since I was diagnosed a number of months back was not controlling it at all. I thought the head pain was migraines. But Pete says that the methadone doesn't touch migraines, so perhaps my headaches were not migraines but just RSD of my head membranes? In any case, the methadone does work so much better than percocet alone, but like I stated in a previous post this afternoon, I still need to take the percocet in additon to the methadone to control my pain, and I am never completely pain free. My head pulses in the back behind my ears, more on the right side than the left, right above the shoulder where my RSD started. I take 1/2 a perc at a time when I feel I need one, and probably take a total of 3-4 percs by the end of each day (I don't count, I just bite a pill in half when I want one).

I may need to eventually increase the mg of methadone I take to eliminate the need to take so much perc for the "break-tru" pain, or get a better break-thru med. But for now the methadone is much better for pain relief than what I was trying to use a few weeks ago. This has had a huge impact on the quality of my life - it is so much better than what it was. Of course, it would be even better if I could get rid of the RSD altogether.

I've noticed that Methadone does make me feel much more tired than percocet did. I am OK driving, and working, but I fall asleep most evenings by 9:00 at the latest. I get up and walk around a lot when I need to at work to stay alert, and drive with the windows open in the car if I feel I should. I do not feel too dopey or stupid, and I rarely drink (thanks to Topamax, which nixes that urge altogether!), and on the rare occasions that I do, I stick to sipping a bottle or 2 of Amstel or Sam Adams Lite, so I do not worry about mixing drugs and alcohol.

I do not have any experience with other opiods or morphine derivatives yet, so I can't opine on those.

Good luck, Sandy
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Unread 05-19-2009, 03:14 PM   #4
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Sandy,
Quick note:
Maybe it just doesn't work for MY migraines?
(I know you and I both have some head pain issues).
Maybe yours is like a muscle pulling up the back of your neck/head, I think those are called "Occipital" Headache. If it's muscular, methadone works for me. Just not MY migraine.

As it goes.... We're All different!

Wish you all well,

Pete
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Unread 05-19-2009, 04:10 PM   #5
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Pete -

Thanks for your response. And sorry to hear about the tbi on top of everything else. With the recent unpleasantness in Mesopotamia, I imagine there have been tremendous advances in treatment and long-term care just in the last few years. I know that conflict really popularized continuous regional anesthesia. Are you keeping up with what's been coming out of Walter Reed for tbi? (I understand that tbi is the defining medical condition of the war.)

I noticed that we're on a number of common meds, where I've been taking a benzodiazipine (Xanax) for years for the control of "shooting pain" and am also on Altzheimer meds - Namenda (memantine HCL) and Razadyne (galantamine HBr) - in what's probably a vein attempt to hold back the well-documented loss of grey matter in the brain secondary to chronic pain.

It's funny how people react differently to meds, whether because their bodies produce certain enzymes at different rates, or what must be a host of other factors. For example, I am barely aware of having taken a Provigil, and certainly don't get migraines from it. On the there hand, I can't tollerate any SSRIs (or even SNRIs) because they incredibly exacerbate the cramping/spasms in my legs, for which I an completely dependent upon bacofen. And I'm now wondering if there isn't some interaction going on between the baclofen and methadone, where - only three days into this - I can be loopy 5 hours after taking a 5 mg. methadone and I know that the 10 mg. I just took will knock me on my posterior, not right away perhaps, but maybe in 2 - 3 hours.

Did you ever get that sort of a response to methadone?

Frankly, I'm just hoping that it's just because I'm a newbie. Time will tell.

thanks again,
Mike

PS I wouln't think of doing any serious drinking on methodone, and as luck would have it, am already on a BiPAP machine (sort of a modified CPAP). Now I'm thinking about getting a battery back up with alarm, in case of power failures. I never thought about this little device as a life or death matter, but with the right combination of depressed breathing and sleep apnea, it may very well be.
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Unread 05-19-2009, 04:40 PM   #6
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Quote:
Originally Posted by fmichael View Post
Pete -

Thanks for your response. And sorry to hear about the tbi on top of everything else. With the recent unpleasantness in Mesopotamia, I imagine there have been tremendous advances in treatment and long-term care just in the last few years. I know that conflict really popularized continuous regional anesthesia. Are you keeping up with what's been coming out of Walter Reed for tbi? (I understand that tbi is the defining medical condition of the war.)

I noticed that we're on a number of common meds, where I've been taking a benzodiazipine (Xanax) for years for the control of "shooting pain" and am also on Altzheimer meds - Namenda (memantine HCL) and Razadyne (galantamine HBr) - in what's probably a vein attempt to hold back the well-documented loss of grey matter in the brain secondary to chronic pain.

It's funny how people react differently to meds, whether because their bodies produce certain enzymes at different rates, or what must be a host of other factors. For example, I am barely aware of having taken a Provigil, and certainly don't get migraines from it. On the there hand, I can't tollerate any SSRIs (or even SNRIs) because they incredibly exacerbate the cramping/spasms in my legs, for which I an completely dependent upon bacofen. And I'm now wondering if there isn't some interaction going on between the baclofen and methadone, where - only three days into this - I can be loopy 5 hours after taking a 5 mg. methadone and I know that the 10 mg. I just took will knock me on my posterior, not right away perhaps, but maybe in 2 - 3 hours.

Did you ever get that sort of a response to methadone?

Frankly, I'm just hoping that it's just because I'm a newbie. Time will tell.

thanks again,
Mike

PS I wouln't think of doing any serious drinking on methodone, and as luck would have it, am already on a BiPAP machine (sort of a modified CPAP). Now I'm thinking about getting a battery back up with alarm, in case of power failures. I never thought about this little device as a life or death matter, but with the right combination of depressed breathing and sleep apnea, it may very well be.



Hey Mike,

Glad we can "compare notes"!
Thanks for the info on Walter Reed. I'll look that up. I don't know what continuous regional anesthesia is?
However, You're right, TBI IS the defining medical condition of this war! Sadly.

I have Namenda, bedtime, more for pain. Then Razadyne and/or Aricept to help the tbi. (My doctor is great with samples on these expensive meds).

As for the Provigal, I'm sensitive to a cup of coffee! That tells ya.

I do take 60mg of Cymbalta/day.

About the Methadone knocking you out. Hmmm. This I've never heard of. I take Zanaflex prn for sleep. I understand that's quite different from Baclafin, am I correct?

This is the "problem" with a cocktail of meds.
When you add a new one such as Methadone, (Anything for that matter), some thought must be given to how it will affect the rest of the mix?


Also, with my CPAP, I have an O2 concentrator, and often (not always) connect it, to add some oxygen to the mix. A friend of mine just got a BiPap, and she is still adjusting to it. Not low O2, but high CDioxide.


I don't take any muscle relaxer during the day, because the tbi made me naturally "drowsy". Sometimes a 5mg diazepam, or a half of one. Just to calm my nerves, or, some Topomax, I have a "Tremor" from the tbi as well. (which is kind of funny, people ask me why I'm shaking, mostly, until it gets painful, or interrupts my typing I don't notice. I guess my eyeballs shake at the same "tempo" as my hands!

And the ankle bone's connected to the shin bone.....

Hope you're feeling better, and get by that drowsiness, Mike! (And SANDY!)
I've NEVER had that with methadone!

We're all a little bit different, we're all a little bit the same...


Pete
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Unread 05-19-2009, 05:37 PM   #7
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Methadone is the only opiate that affects QT of heart.

So you should have a EKG before starting it, and avoid drugs that are additive for this effect.

Dehydration and low potassium and magnesium increase this risk.

This website has complete lists of drugs, and explanations:
http://www.azcert.org/medical-pros/d...drug-lists.cfm

Otherwise methadone is a viable opiate alternative. Just use it safely.
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Unread 05-19-2009, 05:41 PM   #8
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Quote:
Originally Posted by SandyRI View Post
. . . I take 1/2 a perc at a time when I feel I need one, and probably take a total of 3-4 percs by the end of each day (I don't count, I just bite a pill in half when I want one).

I may need to eventually increase the mg of methadone I take to eliminate the need to take so much perc for the "break-tru" pain, or get a better break-thru med. But for now the methadone is much better for pain relief than what I was trying to use a few weeks ago. This has had a huge impact on the quality of my life - it is so much better than what it was. Of course, it would be even better if I could get rid of the RSD altogether.

I've noticed that Methadone does make me feel much more tired than percocet did. I am OK driving, and working, but I fall asleep most evenings by 9:00 at the latest. I get up and walk around a lot when I need to at work to stay alert, and drive with the windows open in the car if I feel I should. . . .
Dear Sandy -

Your Percocet use with Methadone sounds exactly like my ongoing consumption of oxycodone, for what it's worth.

And we are both having similar responses to Methadone, except that (at least initially) mine is more extreme. As in, "you know those four brownies I had an hour ago, they did have a funny taste to them . . . ."

Major kudos for hanging in there and working through all of this.
I had to give it up after a year and a half. At which point I exchanged the world of being a busness bankruptcy lawyer for my neighborhood meditation sagha in Santa Monica, something I was introduced to by a pain psychologist, specifically a "Mindfulness Based Stress Reduction (MBSR)" class, set up initially at the Univ. of Mass by Jon Kabat-Zinn, PhD to bring the insight that could come from meditation and very gentle yoga to people in chronic pain. Since then we moved to "the Valley" so that one of my son's could take advantage of a great high school opportunity, but little is happening locally in terms of buddhist communities, etc. To say that life's quieter than when I was working a a litigator would be something of an understatement.

so hang in there,
Mike
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Unread 05-19-2009, 05:52 PM   #9
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Default Hi Mike,

I was on Methadone for over 6 years. I've said this many times on here.

I love it. I have since been able to get off of it but I do keep it around for flairs with my RSD, pelvic pain and shoulder pain. It does the job. I can take it and get out and function like a normal person.

I started out at 5 mgs. 3 times a day but as I got my pain levels down, I was able to go to 1.2 of a 5 mg. a day. I still take half of a 5mg for my pelvic pain which is nerve pain and it works when nothing else will.

I hope it does as good for you as it did for me.

Ada
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Unread 05-19-2009, 07:19 PM   #10
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Quote:
Originally Posted by mrsD View Post
Methadone is the only opiate that affects QT of heart.

So you should have a EKG before starting it, and avoid drugs that are additive for this effect.

Dehydration and low potassium and magnesium increase this risk.

This website has complete lists of drugs, and explanations:
http://www.azcert.org/medical-pros/d...drug-lists.cfm

Otherwise methadone is a viable opiate alternative. Just use it safely.


Hello Mrs. D

I have to ask, because I don't understand your statement, and was even more confused by clicking on the site.

What exactly is QT of the heart?
And why is Methadone the only opiate that affects this?
(sounds kind of tough to believe). As the site you linked us to pointed out,
just because a drug is NOT listed, might only mean it has not been tested.
Methadone has certainly been around Long Enough for the medical community to know
more about it than they do about most other drugs! Especially the newer, more expensive ones, that end up on the streets.

Of course, everyone in this discussion has advised safe use of this medication, it's a strong drug.
However, Opana, and other's newer to the market, have far less safety trials, (and the test of time) behind them!

For now, I'll stick with Methadone, so long as I need it.
Thanks for your concern, and, respectfully, look forward to your explanation of my questions, or perhaps you can direct me? Thanks Again! (Always looking for more info!)
You're a big help!

Be well!


Pete
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