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 07-20-2010, 06:37 PM #1
hollyk24 hollyk24 is offline
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Default Is this 'normal' for rsd treatment?

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.
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Old 07-20-2010, 07:00 PM #2
hannah1234 hannah1234 is offline
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UMM... if i had a doctor tell me that i would RUN!!!! They must not understand RSD at all!!! I am so sorry for this with this doctor!!! That is not fair for you to suffer more for them to "understand your pain level" it hurts.


Especially if its not your pain doctor doing it... seems really strange to me. I would DEFIANTLY consult with your pain doctor before you do anything!!!

best of luck

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Old 07-20-2010, 08:11 PM #3
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I would talk with the doc that prescribed your meds about this , as there is a reason he prescribed them . That seems odd that the non prescribing doc wants to change things up so drastically . You have to be your own advocate is one thing I have found in the many years of fighting this stuff as some of persons that are supposed to be helping us just do not understand RSD .
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Old 07-20-2010, 10:35 PM #4
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Okay, good, that is what I thought, and my pain doctor, the one prescribing, has never mentioned anything like this before to me. This dr that said this is also a pain dr, but I only see him for physical rehab, and his views on treatment are drastically different then my pain doctors. He has gone as far as to write nasty letters to my pain doctor expressing his displeasure at my pain dr wanting me to do the scs trial . . .

I'm thinking it's just time to stop seeing this doctor . . .
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Old 07-21-2010, 05:52 AM #5
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Default I here this more and more...

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Originally Posted by hollyk24 View Post
Okay, good, that is what I thought, and my pain doctor, the one prescribing, has never mentioned anything like this before to me. This dr that said this is also a pain dr, but I only see him for physical rehab, and his views on treatment are drastically different then my pain doctors. He has gone as far as to write nasty letters to my pain doctor expressing his displeasure at my pain dr wanting me to do the scs trial . . .

I'm thinking it's just time to stop seeing this doctor . . .
I have been with my PM doctor since the beginning of this nightmare, have done the ketamine inpatient 3x's, not the coma, did boosters with Dr. Schwartzman. Since the beginning he has always discussed that narcotic meds. are not always the best in the long run, it actually can make the pain worse because that is what your brain is thinking. After 7 years of surgeries, pm procedures lots of pain and scars I am on the least medication I have ever been on, I have even stopped any time release meds. And honestly yes I still have pain but I am not clock watching waiting until I can take the next pill and now I even forget sometimes. That's only 1 idea of why they want you to cut down or stop. The second is the FDA is really cracking down on doctors who RX narcotics because of patients getting meds. then selling them etc. I'm sure we have all read this in the newspapers over the last year....The scs I would really think about.....

I know it's hard to here or even imagine living with this disorder without any pain meds. When they mentioned it to me I thought he was crazy. But over time we got it down he never pressured me would write my RX for what I wanted, as long as he saw some progress in cutting back. Please keep in mind I am just on maintenance at this point no future surgeries or invasive pm procedures so this is the time for me to do this it might not be for you... but don't count it out...

good luck

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Old 07-21-2010, 12:28 PM #6
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Go with your gut feeling, only do what you feel is in your best interest.


It might be this one dr has a strong anti med belief??

Or perhaps he is trying to chase the other dr off and get you as his patient only??

I think I would quietly look around for another Dr - or an advanced phys therapist to do the rehab/PT.

does the Rxing pain Dr have a list of PT places that he works with?
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Old 07-26-2010, 02:22 AM #7
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Default Ex Doctor

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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