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

What's wrong with a 'baseline' of the meds that you're on?

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

Pete

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.