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 01-20-2010, 05:20 PM #1
RNcrps2 RNcrps2 is offline
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Default Finally medicine that works for me!

My RSD has spread hands, arm, shoulder, scapula, feet, leg. Taking Lyrica, cymbalta, lidoderm patches and oxycontin. Spreading continued so Dr. stopped oxycontin and started Methadone. I was upset about narcoticsl, but FINALLY my pain has decreased, less sensative, not turning purple constantly, walking is easier! I am so happy. I guess i have to just except the fact that i have RSD and i may need to take medicine that I dont like but that helps me. I still do epsom salt baths or foot baths which really help. Hope this helps someone else. momof4
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Old 01-20-2010, 06:22 PM #2
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I am really happy that you are getting some pain relief, I will pray that it stays this way for you.

Sandy

Quote:
Originally Posted by RNcrps2 View Post
My RSD has spread hands, arm, shoulder, scapula, feet, leg. Taking Lyrica, cymbalta, lidoderm patches and oxycontin. Spreading continued so Dr. stopped oxycontin and started Methadone. I was upset about narcoticsl, but FINALLY my pain has decreased, less sensative, not turning purple constantly, walking is easier! I am so happy. I guess i have to just except the fact that i have RSD and i may need to take medicine that I dont like but that helps me. I still do epsom salt baths or foot baths which really help. Hope this helps someone else. momof4
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Old 01-20-2010, 07:04 PM #3
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Default I can totally relate!

Every time I take a percocet (which works for me), I have to argue with myself to eat it. I feel guilty for "poisoning" my body -- mostly my liver and adrenal and hormone functions -- and want to do damage control by not taking it. But then, another part of me argues I'm doing my body more harm by NOT taking it, and need to give the screaming, angry nerves the relief they are crying out for. OY!!!!

But, just like you, I do the epsom salt baths and they truly are wonderful. Now, if I could only get rid of the guilt of using/wasting so much hot water.......
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Old 01-21-2010, 07:26 PM #4
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Have you guys tried mineral sea salts instead of epson salts? They come straight from the dead sea supposedly. You can get them at Whole foods. I take baths with that and put a drop or two of vitamin e oil for my skin so it doesnt dry out and i noticed it has helped alot....
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Old 01-22-2010, 12:08 AM #5
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Quote:
Originally Posted by RNcrps2 View Post
My RSD has spread hands, arm, shoulder, scapula, feet, leg. Taking Lyrica, cymbalta, lidoderm patches and oxycontin. Spreading continued so Dr. stopped oxycontin and started Methadone. I was upset about narcoticsl, but FINALLY my pain has decreased, less sensative, not turning purple constantly, walking is easier! I am so happy. I guess i have to just except the fact that i have RSD and i may need to take medicine that I dont like but that helps me. I still do epsom salt baths or foot baths which really help. Hope this helps someone else. momof4
Hi Momof4, I'm happy for you. I understand how you feel about meds. I just wanted to say I attended the RSDSA annual meeting this past spring in Scottsdale, AZ where I live. We had 4-5 RSD Drs. & Scientist. And they definetly were pro Methadone.
I have full body RSD-now 15 years with internal involvement,pelvic region. We need all the help we can get. My pain was increasing because I would be awake all night-ambien not working. Dr. put me on a 200 patient trial study and it worked, so was able to decrease the pain med a little. So grateful to sleep again.
Hope the best for you. your friend, loretta with soft hugs
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Old 01-22-2010, 12:13 PM #6
AintSoBad AintSoBad is offline
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Quote:
Originally Posted by RNcrps2 View Post
My RSD has spread hands, arm, shoulder, scapula, feet, leg. Taking Lyrica, cymbalta, lidoderm patches and oxycontin. Spreading continued so Dr. stopped oxycontin and started Methadone. I was upset about narcoticsl, but FINALLY my pain has decreased, less sensative, not turning purple constantly, walking is easier! I am so happy. I guess i have to just except the fact that i have RSD and i may need to take medicine that I dont like but that helps me. I still do epsom salt baths or foot baths which really help. Hope this helps someone else. momof4

Hello Mom!
I've had rsd since 83, with TOS, then a TBI and four discs, etc. thrown in by another accident in 98.
I've gone from the "useless burnout meds" that don't do much except "cloud the mind", to being put on methadone @ 60mg/day. I was told to think of it as blood pressure medication.
I didn't care, but, it surely helped! I weaned down to 10/15 mg/day.
Then, came the 2nd accident.
Back up to 100mg/day!

Now, I've weaned back down to 50-60mg/day. along with a few other things *cymbalta, diazepam, migraine meds, as addendum's.

I simply don't understand why someone would take Oxycontin, or worse, Oxycodone, which really mess's with your head, when you can take methadone.
It has it's drawbacks, as they all do.
It can be a breathing retardant.
It's not candy, you've got to be careful with it, as with all meds! If you have a good day, take one less, and hold it for "breakthrough pain".
That's what I've been taught.
And, it works well for me.

Of course, I still curl up in the fetal ball, and am not so happy. But, welcome to the life of RSD! Right?

Also, methadone is so inexpensive!
If your insurance pays for your meds, you might prefer oxycontin.
But, think. If it were to come out of Your Own Pocket, You'd switch to methadone, instantly!
No need to be greedy.
So, 20 years of methadone have really done me well.
I could not imagine a better med!

pete
asb
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Old 01-23-2010, 09:41 AM #7
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Default Hi,

I tried every med going until I got on the Methadone. I was on it for about 6 years and still keep it around if I need to take it. No other med helped the pain for me like Methadone. I can take it and it does wonders for my pain and the least side effects.

I hope it does what you need it to do for you.

Ada
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