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 07-21-2010, 10:21 PM #11
AintSoBad AintSoBad is offline
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AintSoBad AintSoBad is offline
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What's wrong with a 'baseline' of the meds that you're on?

This guys sounds like a typical 'duck'....
Sorry.

Pete
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Old 07-22-2010, 08:39 AM #12
hollyk24 hollyk24 is offline
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hollyk24 hollyk24 is offline
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I don't know what wrong with a baseline of the meds I'm on. As I said, I just changed to these meds 2 months ago, and finally feel stable for the first time since having rsd. Before that, I was able to go to work for about 4-5 hours a day, starting very early in the morning, then come home and pretty much do nothing for the rest of the day except go to my dr appts and pt appts. Wouldn't be able to sleep much because of the pain, was throwing up because of the pain spikes, was totally miserable. With my new meds, I'm down to about a 5-6 on average. So now I can work my normal 8 hour day, then come home and nap, then do a few excericises, then go lay in bed and try to get to sleep. So my current meds allow me to function just enough to get by, by no means making things so much better that I'd say I function normally or even close to normal. There are so many things I still can't do with my family that I'd love to do, like go for bike rides, so it's not like my meds have made me 100% better and I'm out running all around. I'm happy with the level of relief because of where it was before, and i don't expect or want any meds to take the pain away completly.

The thing is I wouldn't mind going down a bit on the narcotics, I think they only help with the deep bone ache I feel, and I wouldn't mind taper down to see what the difference would be. I would however mind being taken off my topamax and klonopin, which have together made a huge difference in the stabbing pains and muscle cramps that used to last for 8-12 hours at a time and make it impossible to sleep. I also would not want to do without my compunded cream (its got ketamine, gabapentin, clonidine, & lidocaine) it helps like no other meds I've tried when my foot starts to burn. It's also used on an as needed basis. And my birth control. The last thing in the world I want right now is to get pregnant. I understand that in some way the hormones may be having some affect on my pain, as some studies have linked some hormonal connections in women to rsd, but really, I'm married, newly married, and a baby is something we have discussed and both agreed that now is not the time.

I talked this over with my prescribing dr, and he thinks I should just stay on everything for now, that I just got stable, and that we shouldn't make any changes unless I think it's necessary or something else comes up.
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Old 07-26-2010, 02:22 AM #13
yiisd yiisd is offline
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Quote:
Originally Posted by hollyk24 View Post
I'm curious, one of my doctors keeps telling me he wants me off all my meds to get a new baseline of my pain. Now, I just got to a point where I feel the slightest bit comfortable and stable with my meds last month. This doctor does not prescribe my meds, only does the physical rehab part of things, and my pain doctor has never mentioned taking me off all of my meds before.

Has anyone else done this before? It seems like unneedless torture to me. I could see if I was improving or having less pain or something that reducing or eliminating meds would be appropriate, but when my pain is not improving, it doesn't make sense to me. Am I missing something here? None of my meds are ones that can just be stopped, so it would be a long painful process that I don't see any benefit for me in. And this doctor isn't just talking pain meds, he wants me off all meds, period. It just seems odd to me, when I'm telling him things are getting worse, spreading to more parts of my body, that he would want to put me through that just to get a new baseline of my pain.
My EX DOCTOR told me the same thing. Don't do it! It will set you back.
I found another doctor & am improving.
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