Are my expectations of my pain management program unrealistic? I feel like my pain doctor is more than happy to leave me in pain for extended periods of time, and I just don't know what is normal in a pain management program.
[Note: Posted on behalf of my wife who is looking for an urgent answer before her next askme is available]
I am part of a pain management program to help manage fibromyalgia pain. This is all fairly new to me, I've only been part of the program since September. But the one thing I'm experiencing and I'm NOT liking is the pain specialist (MD) I'm seeing seems more than happy to let me be in pain and without sufficient treatment. Early on, I figured it was because the medications I was trying needed time to work. But lately, after those drugs haven't worked, I'm feeling less confident that is why I have these gaps where she's not doing anything. At a some what recent appointment, I was explaining that I still was getting inadequate pain relief, especially at night, making it difficult to sleep. It didn't help that the pain med I was on gave me insomnia (Tylenol 3) so I often had to choose between being awake from pain and hoping it would pass and I could fall asleep or just being wired and then but pain free, yet also guarantee not to sleep, making pain the next day worse. At that appointment she wanted me to wait until I saw a different doctor to do anything even though that was 6 weeks away.
Now, that has come and gone, and I was just recently back to see her again, and she seemed more than content to leave me in a state where I was still feeling that the treatment I was getting was not doing enough to control the pain. On top of that, I was building a tolerance and that really worried me. I experience pain nearly every day, but only took the tylenol 3 some of the days because I'm worried about the addiction side of it. But lately, my fortitude for dealing with pain has been at an all time low, and I wasn't prescribed enough to take every day anyway. After pressing her to do something more, she prescribed a butrans patch**. That was two weeks ago. I didn't try the patch until a week and a half ago though (I wanted my husband to be home when I tried it in case there were problems). I've gotten no relief from the pain, though the side effects have been minimal. Early Nausea, but it's mostly passed, and some insomnia, but that has seemed to have passed too. But I've been sitting here with no pain relief and am just tired out from being in pain every day.
I called and said it wasn't working, and the answer I got was that I what until all the patches are gone and then they'll decide the next step. Now, she initially advised me it could take a few days to start working, and my own internet searches on the drug have suggested the same thing. But nothing like a month or even a full week. Frankly, I think that waiting another 2.5 weeks without any pain relief or any attempts to change that from my doctor is unacceptable, in light of the fact that my understanding is that it should be working by now. I've gone from limited functioning to severely limited functioning, and as the days have worn on I'm just getting more tired out from being in pain every day.
This is what I don't know, are my expectations unrealistic? I've never been in a pain management program before, so maybe this is normal. It isn't life threatening. It just feels really shitty. On top of that, the doctor I see for sleep trouble has more or less said he's at a dead end until the pain is better controlled (which, makes perfect sense to me; I can't sleep because I'm in pain).
Relevant information; I'm not seeing a rheumatologist. The first one that diagnosed me left the practice and I didn't want to follow him because he was frankly kind of an ass, and would argue with me over things other doctors advised or diagnosed. Second rheumatologist for second opinion was a much nicer guy, but bounced me back to the pain management program after running a battery of tests the first didn't, saying that the pain management program handles fibro cases once diagnosed. I've also been to a neurologist among many other doctors to try and figure this out.
*I'm not particularly fond of another type of opiate either, but was willing to give it a go to at least see if I'd get some relief and then start talking to her about non-opiate options
. In case anyone at home is playing along.