Originally Posted by IamJenn

Okay so since being "diagnosed" most of us are being seen by a Pain Management Doc who is obviously seeing you to manage your pain. And some of us (not me) see a bunch of other docs on the regular to help us with this terrible disease. I do have a PCP but I haven't actually seen her yet, I went in to establish care under her but she was on maternity leave and the covering doc (a female) wasn't versed in CRPS and was pretty rude to me and all my issues so I didn't return for a follow up because I wanted to wait for my real PCP to come back from leave blah blah long story short I haven't gotten around to rescheduling another appointment because it's so tiring to have to explain once again what your medical history is to yet another person. I mean c'mon I've had to do that since 2006 and it's just the same thing over and over again. Anywhoot...I went in to see my PM Doc on Friday, a week earlier than my scheduled 28 day appointment (why? Because I have a major B for a boss & she said she wouldn't approve my MEDICAL appointment for three 14th because there was already 2 people out....yeah whatevs I'll save that whole deal for another thread) Anyway, I go in there and mind you he's been great to me since all this happened. I've pretty much seen him since being diagnosed, signed that contract and stuff done the Stellate Ganglion Blocks religiously in the beginning UNTIL it stopped working and I was becoming fearful of doing the damn thing. I have NEVER in my life been afraid of needles, I work in a dang lab for goodness sake but I seriously acquired a major fear of doing the blocks, not to mention I got pregnant with my daughter etc. So it's been almost 3 years since I've done one and I really don't want to anymore. But I go in and give him a rundown of all the things happening to me like how I can feel it spreading to my right foot, my vision problems, my teeth & gum issues, my cognitive issues and on and on. He basically looks at me and he has this student doctor with him and he's just looking at me like I'm just rambling and wasting his time. I asked him to explain if my issues had correlation to the CRPS and for the majority of the issues he says NO outright he tells me my stomach ( which is burning like the CRPS burning) is probably just an ulcer. Says my blurry vision in my left eye is not connected to CRPS and I probably just need a new prescription from my eye doc or my eye is tired and dry, then tells me my dental issues may or may not be related he doesn't know then the kicker is.... " Well Jenn I'm not sure if it's spreading to your right foot, I don't wanna sound like I told so, but if we did the blocks a year ago it probably wouldn't have spread" So my advice is to do another block and we'll see if that eliminates it". My response was okay wait, I WAS doing the blocks and it spread from my upper left extremities down to the lower left extremities, what are you trying to say? That doing the blocks will help it not spread? Uh yeah okay...I've already realized that the blocks don't help me. And it spread regardless of the blocks. The he says well next step is to implant that thingy I forgot what it's called into my spine. I was like ok I already have issues with just doing the blocks and now you want to cut open my spine and put something in there? I haven't done enough research to say yes or no yet. I ask him shouldn't I be also seeing a Neurologist and he says NO. I'm like why not? He says because all my treatment is coming directly from him. Just FYI, he filled out my FMLA Paperwork and said I have no restrictions in doing my work! I was like WHAT? Yeah I do! He won't even agree to say that I am somewhat disabled. I don't know anymore I feel like his only recourse to my treatments is doing the blocks or cutting my damn spine open to implant something. Here's where I'd like to know what y'all would do.....is it time for me to find another PM Doc? Should I see my PCP so I can get it documented in my medical file that I am disabled and have certain restrictions. I NEED HELP PLEASE!!!!! Tell me what y'all would do if you were me or if you went thru the same thing. TIA!

❤️,
Jenn