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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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Hi, everyone! Let me first apologize if I have asked a question similar to this before and possibly gotten an answer - I am having such insanly sever brain fog and memory issues that I'm often not sure what way is up now days.
My question is what type of doctors are you all seeing other than a PM Dr? I'm really thinking I need a bit of an overhaul in my doctors, as I'm not really feeling like I'm being listened to or cared about! I would really like to build a team of Drs, but other than a new PCP and PMD, I'm unsure if I should being seeing anyone else. My PMD is a wonderful man, and the SNB he is doing are helping some - but he NEVER listens to me! My first block stopped working after 3 days and gave me about 70% relief - I told him this and he somehow hears that as it lasted a week and gave me 75-80% relief. I didnt really see this as a huge deal at the time, but I think it may have sent up a bit of a warning. My second block worked at the same amount of relief 70%, and it lasted 9 days. My pain Dr heard this as it gave me more relief than the first one (85% per him) and it lasted 14 days. (I should note that at the time he noted that it lasted 14 days, it hadnt even been 14 days since he did the block!!!) I can honestly sit in his office and say "No, it only worked the same amount, not more and it only lasted this long - but he just kinda ignores me?! And I dont really know if this is such a big deal, but it is really bothering me! He has also told me that since each one has worked better (NOT!) that he thinks he'll just have to do one more and I'll be all better!??! IDK... kinda strange! I also wanted to bring my PCP in on my treatment and to also talk to him about some odd issues Im having since being diagnosed with RSD (anyone else have a huge increase of asthma symptoms?) Anyway, I go in for my appointment, he gives me new meds for the asthma, tells me I cant take my zoloft anymore because Im on the amitriptylin, and tells me "Sorry to hear about your foot, good luck with that" WHAT!?!? I left crying and so so confused! This man has been my Dr for 15 years and thats all he has to say! No advice, no opinion, nothing but wishing me luck! My podiatrist has been very nice, and open, and willing to listen - but he doesnt bring a lot to the table. He just seems to want to bring me in every other week to ask me how I'm doing and no matter what I say he pretty much says "I'll see you in two weeks" I can also admit to having a bit of anger toward him, so that might now help his case! I know that RSD can happen from even a minor injury - or nothing at all, but my RSD started after having a foot surgery that I later found out was unnecessary. Had I been diagnosed correctly, I would have never needed surgery and I would not be dealing with this unimaginable pain now - so yeah, just a little anger towards him! Anyway, I know I now need to deal with the stress of finding a new PMD, PCP, and podiatrist - but are there any other doctors any of you would recommend I bring into the fold? I think Im also going to start seeing a therapist too. I have been all over the chart with my emotions. When Im up, Im up - but when Im down Im down loooow and sometimes I'm just weepy for now reason at all! And I have irrational anger toward everyone, for no logical reason! Even total strangers that have done nothing wrong really, I get mad at! I feel like I've lost my ability to laugh. And most scary of all is this gripping panic that seems to own me! My mind is so scared of RSD now that if I so much as bump a finger I'm gripped by overwhelming panic thinking the RSD will now spread there! And this applies to my loved ones as well now - my daughter trips and hits her knee.. I hyperventilate Im so scared! Its insane! Does anyone else experience this? Is it even a tiny bit normal? Okay - I should atleast go lay in my bed now seeing as its almost midnight, although I wont sleep until total exhaustion takes me around 3ish. (Which is something that no Dr seems to want to help me with! I was told that the Amitrip should help me sleep and that I dont need anything else!) ugh! Thanks for listening, and thanks in advance for any advice! <3 Trisha |
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