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 08-21-2011, 04:10 PM #1
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Default What's a good med?

I'm presently taking a high dose of Lyrica which does very well except during flare ups.
My neurologist is leaning towards adding narcotics but I want to stay away from opiates. Anybody got any suggestions?
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Old 08-21-2011, 06:52 PM #2
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Gotta tell you Jimbo, this is a loaded question.

Every case of CRPS is somewhat unique. That means what works for one doesn't work for the other. As they say: Your results may vary!

You must experiment. I like to keep opiates as a last resort. Yes, they can be effective, but there are lots of other things to consider with them like dependency, potential damage to internal organs, etc.

I spent a year on percocet and about a half a year weaning myself off of it.

Sometimes it is best to get MULTIPLE opinions before embarking on a new meds strategy. Scratch that. It is ALWAYS a good idea to get multiple opinions.

Good luck to you!
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Old 08-21-2011, 07:03 PM #3
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That's what I'm doing here. I'm hoping to get some ideas....
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Old 08-21-2011, 09:12 PM #4
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Quote:
Originally Posted by jimbo View Post
I'm presently taking a high dose of Lyrica which does very well except during flare ups.
My neurologist is leaning towards adding narcotics but I want to stay away from opiates. Anybody got any suggestions?
My RSD started in my shoulder but it spread to my neck and my occipital area and I suffer from terrible headaches. For my head pain I use Fiorcet, which consists primarily of Tylenol and caffeine. But it can cause "rebound" headaches if you use too much of it. When my migraines get really bad I have Frova, which is a triptan.

I also take Topamax 200 mgs, Cymbalta 60 mgs, and Clonodine, .20 mgs., and Skelaxin, 800 mgs. The Skelaxin is for muscle spasms and if I use my arms a lot I will take an extra dose during the day ( I am written for 3 x 800 mgs day, I generally only take it at bedtime). Using my arms can cause headaches.

There is a newer med out called Nucynta. I take it when I need it. It is a pain med. In the opiate family. I also have Toradol, I need to inject that - which I totally hate to do. But when my head gets really, really bad it's fairly effective.

I also use a lot of Voltaren gel and Lidoderm patches.

Good luck, Sandy

Last edited by SandyRI; 08-22-2011 at 05:07 PM. Reason: Forgot one med...
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Old 08-21-2011, 09:30 PM #5
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Thanks Sandy,
That's what I'm looking for. Some names of meds I could mention to my neurologist.
I'll mention those non-opiate ones to her and see what happens...
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Old 08-22-2011, 12:17 AM #6
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Many with chronic pain have is an extended release/long acting med, and then something quick acting for break thru pain.
Sometimes an anti depressant can add to the pain relieving effects of other meds.
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Old 08-22-2011, 05:39 AM #7
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Forgot to actually list my meds when I replied. I take gabapentin (generic for neurontin) for the burning nerve pain, naproxen sodium (generic for Aleve) twice a day for general pain and inflammation, desyrel (generic for trazadone) for mood and sleep. I am having reasonable success with this cocktail, but having to make tweaks is not unusual.......
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Old 08-22-2011, 08:19 AM #8
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Quote:
Originally Posted by jimbo View Post
My neurologist is leaning towards adding narcotics but I want to stay away from opiates. Anybody got any suggestions?
Hi Jimbo,

What, exactly, is your objection to opioids?
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Old 08-22-2011, 08:53 AM #9
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Hi Dr. Smith,
I guess my main concern about opiates are the side effects and the chance of dependency. When I hospitalized after my accident I was on a morphine drip every two hours. Was stepped down with perc and darv. Don't want that again!
(I was addicted to 'Lost In Space' when younger too...)
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Old 08-22-2011, 10:03 AM #10
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Jimbo,
Do you have a good doctor? Mine is a fine neurologist Ph.D.
He KNOWS and is a genius with meds. (as Neuro's should be, but some neuro's are simply too egotistical and got into that field so they don't get 'dirty').
Mine also has rsd.
He didn't start me on, (I was with Dr S, and they were partners), Methadone, but, it's inexpensive, and there's No Buzz! Also, it's Very inexpensive. Some of the 'lighter sounding opiods' like those you said you were on, as well as others, can cause myriad side effects that are unpleasant. (I like to feel my feet touch the ground, even though it hurts, I don't want any 'buzz'.

I'm NOT saying that methadone is without risks, but I think most level heads would agree about dependency. When do you expect to be cured of RSD? So, I was taught to take it as I would say, 'Blood Pressure medicine'. OK.
What you need to know, is that it can cause constipation, esp. if you're sedentary, and don't have a good diet. There are numerous ways to correct/control that. Also, you don't want methadone if you have any breathing problems. It can depress your 'breathing'.
So you can go to www.drugstore.com, and other places to look up it's side effects.
When your RSD is cured, then worry about dependency!

Btw, I've been on methadone for 20+ years. My cocktail includes, besides methadone,
Cymbalta, (Nerve pain, depression) Diazepam,(muscle/nervous system relaxant), Zanaflex (it's generic form, muscle relaxant and for sleep), Migraine meds, Lidocaine patches, (only cut in thirds, for my neck / low back, where I have Herniated discs), and my 'head med', Aricept (off label it's for altzheimers, I have a TBI).
I also have TOS, and sleep apnea came with the TBI, so I use a CPap machine with O2 added.

So, as you can see or tell, that my doctor and I spent lots of time, decades experimenting on this cocktail, especially after the 2nd accident, which caused the Head Injury and discs and sleep issues. It's a bumpy road, but taking methadone was an easy decision for me.

I wish you well!

Pete

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