In the spring my PM doctor sent me to physical therapy. It took a while to get it sorted out but eventually I got there and it helped some, I was just released from PT 2 weeks ago with a home program to follow and instructions to get a membership somewhere with a pool to continue my pool exercises a few times a week. I did a SGB in June which went horribly, caused a terrible flare and is something I never intend to repeat. At the beginning of July we tried Savella, I did the whole serotonin syndrome thing, caught it early thankfully and quickly sent that drug the way of the dodo. My next appointment with my PM doc is at the end of this month.

I recently did the follow up with the doc who did the SGB. They gave me a bunch of info on SCS and pumps. I informed them that for me those are at this point in time final resorts. They were pretty understanding about that and why I'm so reluctant to have surgery, no matter how "minor" they call it.

I've decided to take charge of everything myself. I've located a doctor pretty close to me (maybe 10-15 minutes) who does Calmare. My insurance doesn't pay for it so I started the process of an appeal to get them to pay for it. Once the paperwork is all faxed in it should only take a 7-10 days to find out if it's approved or not so that's pretty quick. I'm really hoping it is because it's completely non-invasive. The next thing on my list after this is ketamine. Dr. Pulley up in Salt Lake City (about 45-60 minutes) does it. My husband would have to apply for FMLA, which I'm for him doing anyway so he can get leave as needed for any appointments I need him for. We'd have to drive up to the city every day for a week, and back home. I'm not sure if my insurance covers this either, their billing person was on vacation last week but I left her a message to get back to me with the billing codes.

The thing is, I haven't discussed any of this with my PM doctor yet. He has me on tramadol, and not much. Although I'm going to ask for more at my next appointment because 30 a month is not enough. My policy used to be that I'd rather find natural alternatives or suffer than take "weird" pills and drugs but it's just enough to give me a taste of life when I use it and by God I want more life! Anyway, I don't want to make my doctor all mad or whatever going behind his back, but these are things he doesn't offer. I understand that no doctor is going to offer everything, that's fine. But I also don't have the time or patience to wait around for every time I have an appointment with him after something fails. I have a yearly out of pocket max that I'm just about to hit so the more I can cram into this year the better. Because if I'm going to need the ketamine I want it before the year is out because it's so expensive and I don't want to hit another deductible. Is what I'm doing weird or out of line?

The other thing that crossed my mind was switching from the doctor I am seeing to the clinic that did my block. They seemed all gung ho about being super aggressive with treatment while my current doc seems to think that we have all the time in the world to get things under control. Sure, we do have all the time in the world because I'll be in pain either until it's under control or I'm dead but sooner rather than later would be SUPER thanks. The downside there is that they had a sign in the office about how for refills they expect you to come in every. freaking. month. That's a $25 copay a month for a refill for pain pills. Are they freaking kidding me? Who has that kind of money? On the other hand, I could use someone who's all for being more aggressive and I don't blame them for the failed block... crap happens. It's been 5 years, I didn't expect miracles. I'll certainly be going back if I want a pump or SCS or help making a decision on which is going to be best for me beyond the help I can get here.

I totally forgot, but the other thing I brought up at my most recent appointment (with the doc who did the block) was the possibility of IVIG. They said they don't do it, but that other doctors or institutions may. It's just one more thing in a long list that I'm all for trying before having strange devices implanted in me. By all accounts it's something that there has been good success with for CRPS patients, although I'm not sure it's actually approved for us. But, it is something I want to explore for sure. Just one more thing I'm doing for myself (or trying to), that doctors aren't.

No matter what goes first ,I wish you the best. All invasive treatments take so much energy mentally and psychically out of you for sure. I'm also In tramadol , that will be one of my pain meds and the stronger one ,also scs, was a decision I took personally to avoid if my body allows me to stay away from others drugs,I don't judge people who are in stronger drugs and also understand we all don't tolerate pain same way so far my combo work for now but doesn't means I don't suffer from pain often, was disappointed to know there are other treatments beside scs but I wasn't aware and my dr decided for me,that's why I always said,EDUCATION IS THE KEY, I dint know but know I'm stuck with this scs and getting flares still in my whole body because according with three dr my rsd was traveling by the time my scs was implanted first time and I did not know.
Is really confusing having dr getting disagree about medical treatments ,after all you pay the price.
My ortho and pm never agreed and still now,that I suppose to have new dr ,he consider all treatments I had were unnecessary because after all ,I don't have rsd,he came with that diagnose just by looking at me,I'm serous and makes me so mad everytime I remember his face telling me six dr were wrong!really?
Anyway,is not what I meant to say to you,I want to tell you ,there are other options and only try something drastically when you can't longer look for a more conventional treatment ,a drastic decision really makes such of impact in our lives and dealing with it,takes so much of you,many times you will think if the remedy is worse than the disease.
Keep the hope and know for sure ,any questions we are here to help,gentle and soft hugs as well,Jesika .