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.

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

hannah

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 .

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

Gabbycakes

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?

Gabby - that would make sense, if he wanted me off just my pain meds, but he wants me off everything. And he is not the dr prescribing, so dea issues wouldn't be a concern with him, since he has nothing to do with any of the meds part of my treatment. He wants me off ALL meds, period, even my birth control, which I thought was just absolutly ridiculous.

I could and would understand if it was coming from my prescribing doctor, because of the reasons you mention. Then it would make some sense to me. Or if it was just the narcotics part, then it would make some sense to me. But all the meds, all at the same time, when my condition has been getting worse, not better, just too 'see' what my baseline of pain is seems to me like needless torture.

This doctor does have a strong anti med belief, which is why I've only seen him for physical rehab and never as a pain patient. He has tried to 'take control' several times in the past and has managed to make my pain mgmt doctor so angry that any suggestion that he would make now would be ignored. This doctor even wrote my pain doctor a very rude letter saying that scs's weren't good treatments for rsd and that he was going to do me harm by going through with a trial, then told me none of the pyschologists in his practice would do the pysch eval because he wouldn't allow them to play any part in me getting an scs because they are such awful things and I'd probably come out paralyzed.

I saw my pain dr today and he gave me some names of some other doctors that he knows, I'm going to give them a call and see how they are. I just want to have doctors that are open to working together and that will realize that some of their methods may work for me and some may not, but adding more stress by fighting over well known treatments and trying to scare patients by exaggerating risks is not going to help anyone.

Also, my prescribing doctor has just recently changed around all my meds, just 2 months ago, changed just about everything up, and I've been the most stable I've been since this all started. He hasn't mentioned cutting down or changing anything, and as far as the narcotics go I'm on a pretty low amount, at my appt today and my last appt he asked me if I want to up my dosage and I've said no both times because I'm comfortable where I'm at and I'm afraid any higher amount and it will affect my ability to work, so I know none if this is coming from my doctor that is prescribing my meds.

Hello,

Everyone's experience of RSD is unique, and everyone's bodies react to medicine differently, so you should of course always listen to your M.D. and to your own body. I just wanted to share my perspective, which is that during the course of my RSD nightmare, I discovered that I had rebound pain from the nerve blocks and pain medication and it wasn't until after weaning myself completely off all that junk that I really turned around and started feeling better. It took then about 6-months or a year of lots of physicial therapies & exercise before I considered myself to really be in complete remission. That's not to say I don't have RSD anymore, but it's no longer part of my daily life, just something that flares up when I am overly stressed physicially (such as illness) or emotionally.

Peace and healing,
Ariel

Wow, I did not realize it was even birth control and other meds. as you mentioned. That whole story is a little strange. Good Luck finding a new doctor for PT and I'm sure you will find a better doctor and one who will support you...which is most important....Gabbycakes