[Inspiretoday]

Good day All,

I wanted to write about my frustrations on my last doctor appointment that I had yesterday. This was the one I was waiting on for the last 3 months.

At first I was impressed by the nurse understanding CRPS which made me feel better. I was at a teaching facility so the Resident was the first to see me and then the attending. I had written a timeline prior because this was a new place and they were only going on referral. After looking through everything the doctors agreed I needed Ketamine Infusions. At this Pain Clinic it is done @ their hospital for 4-5 days, which works better for me because I live about an hour and a half away. Then they told the next part: I would probably need more Sympathetic nerve blocks. I was shocked and made it very clear that after 3 blocks they stopped even working at all and they were all very painful and 1 didn't go so well & they hit another nerve in my spine. I had 5 all together and didn't get much relief. My last pain doctor agreed I would not benefit for anymore at this time. I was told that the insurance may need more because I hadn't had the blocks at this new facility. Does this make sense to anyone? I had them in Boston and Virginia by very qualified doctors.

The next one that threw me for a loop was they wanted to put me on another anticonvulsant, Trileptal. I have already tried Neurontin & Lyrica with HORRIBLE side effects & they made me sicker and in more pain that I actually am. I again made this point clear in a factual tone & the Dr says I need to try it because insurance wants to see I have exhausted all resources. They also tell me that it may make me feel sick and to work up slowly but the side effects should face in a few weeks.

Now I'm sorry but I am not a guinea pig. They are asking me to re-do things that made me worse and I just don't feel this is ethical. Lyrica made me so sick when I was getting off of it that I literally thought I was dying. Neurontin made me shaky & made me a zombie not able to focus at all on anything.

I asked about LDN and told them I had been reading some research and this tends to be one of the best medications used for CRPS. They told me that they don't use that in their program for CRPS so therefore they wouldn't.

I left the appointment and cried in my car. I wasn't treated as an equal. I felt that it was assumed that I was stupid and just 'googling' things. I was even told after I told them I had watched a lecture on the newest treatments, that I shouldn't believe everything I see on TV. Not that it matters, but I have a masters degree, I am reading medical journals and I am getting some great feedback from you guys..and after all…. we are the experts. We are the ones that know our bodies the best. CRPS has taken away almost everything I love, so now on the weekends I study everything I can get my hands on and this was all dismissed in one statement.

Am I alone in these demeaning appointments? At one point, they even commented that I wasn't meeting the criteria for CRPS because my feet weren't red and swollen today. 90% of the time they are. But for some reason on that day they were just cold, even in fleece socks. From what I understand everyone's CRPS looks different.

I have to stick with this team bc I want the ketamine but I am not sure how to handle further appointments. They are pushing the paperwork for Pre-authorization for Ketamine through insurance but did any of you have to jump through these hoops? I am feeling frustrated and so mentally and physically exhausted. I really need some decent care.