Back to square 1 again, year 5
my mind seriously feels like it’s at a breaking point.
for many personal reasons, it has been desperately important to me to have medical proof from a definitive test that my pain was real. it took 4 yrs but when i got my biopsy back positive for sfn i was so, so relieved
then the dr hits me with the well, this is really just a symptom of something else - but since you don’t have diabetes, you’ll probably never find out what caused/is causing it, the only thing you can hope for is that it doesn’t progress further, here’s some useless cymbalta
i couldnt accept that. i NEED to know why this is happening. i CANT LET IT GET WORSE. my life is already mulched up into fucking bits of what it once was. i’m barely a shred of the person i was. i have to know what’s going on. i have to be able to tell people something so they understand
waited 9months to see the best neurologist for sfn i could find in my area, highly recommended, he is very kind and i can feel him putting genuine thought and effort into going over my symptoms and thinking of ideas. did a bunch of brainstorming in front of me on a clipboard. it may sound like nothing but you know how it is, i got so desperately excited because this dr was actually paying attention and giving a shit, i was like omg he’s gonna figure this out for sure. looks up at me finally and says m’am none of this really makes sense, the symptoms and severity of the damage don’t really match up with the timeline and you not having any other major medical episodes or family history of xyz
auhahaha okay. well. that’s concerning. and confusing.
he thinks quite confidently maybe i have some random genetic muscle thing and have been having a slow progression all my life with a sudden ramp up. i feel hope. he prescribes 2 meds. i feel hopier than hope. (disclaimer i think you guys understand, not hopeful to be sick but just that i would have an answer type of hope)
get home, the high leaves soon and i realize i’ve really accomplished nothing again. one med was lyrica which is just more potentially life ruining shit like cumbalta. one is journvax which i was interested to try, but it would have made my birth control stop working, and the pharmacist didn’t catch it so that’s awesome. then the blood tests come back all negative for the things he thought of. it’s the same as every single panel i’ve done the past 5 years; completely normal except high CRP and high eosinophils which both mean nothing apparently, i got basically ridiculed the last time a dr sent me to try rheumatology with the high crp and mcv/mch
so yeah the past 3 days i’ve just been in a super dark place. i’m so angry. i’m at the end of my rope. how many more years will it be of this painfully fucking slow chess game. one appointment. 6-9 months between. tiny flecks of interest here and there from drs. nothing ever sticks. this dr was nice at least, so i’ll keep going and praying he doesn’t just shuttle me off to another speciality at the next appt…maybe there are more things he can test for
mostly i feel alone and like i’m still making this all up. it’s my fault my behavior has changed. it’s my fault i can’t keep up with new friendships. it’s my fault i’m so boring now. it’s my fault i feel like i can’t physically handle a 2nd job anymore. it’s my fault i’m too tired to go back to school. it’s my fault my spouse will no doubt be ready to leave me in another year or two. it’s my brain making this up when i’m just laid there having pain breathing in and out after doing some laundry. in my hardest moments i feel my mind slipping and feel that i’ve genuinely landed myself in purgatory. that’s how utterly stuck i feel.