#bc i have so many random symptoms rn and have been in so much pain lately

[fragilecqpricorn]

who up going through trials and/or tribulations rn ⁉️

[thattheatretrash]

hi so once again i am turning to tumblr bc idk what else to do

need some chronic pain related advice so if you can relate or know someone who does please read below

little background about me: i've had chronic pain for almost two years now, and still no solid diagnosis. different things have been thrown out there, but a lot of the tests i've had done have come back negative, not significant, or inconclusive. the only thing that was ever yes yes definitely positive was a mri of my thighs that showed inflammation. however, a couple months later when i had a muscle biopsy of my thighs done, they ruled it not significant, and it didn't point to a further diagnosis. my rheumatologist decided to put me on prednisone anyway, and it HELPED SO MUCH. at least temporarily, i'm tapering it now since it's not good to be on long term. but it helped with my energy levels and my pain/numbness/weakness/tingling/burning/tingling pain in my lower body. i definitely couldn't have finished college without it.

recently, i was put on lots of different meds, and i've been have a bad flareup and new weird symptoms since the beginning of the summer. i also started using weed to help manage pain and fatigue and it helped a lot. however, because i've had so many new (and some very severe) symptoms and couldn't tell anymore what was a side effect and was a symptom, i decided to stop/taper every medication/drug that i could about a week ago (with my PCP's help). i'm still adjusting.

however, the thing i'm probably most concerned about rn is my new neurological symptoms that have been progressing. while i've had things like sensory issues or brain fog in the past, it's taken such an intense turn to the point that i'm pretty sure i've started having seizures? i hesitate to say that in case i'm wrong but i've been having them a lot. since stopping my meds, it seems to be helping slightly. my brain doesn't feel as overloaded. but i'm still kind of having them. i did go to the ER for one after i had an episode in the urgent care waiting room, and they did a CT which looked fine. they diagnosed it as a "headache" and told me to call my rheumatologist to get off my mycophelate mofetil since they thought it was contributing (and i think it definitely was, especially to my digestive system issues, brain fog, and weird random i'm so sad but idk why mood swing things).

i guess my question is, for people who have had seizures start developing later in life, how did you know it was a seizure? i mean i've looked up stuff online so i'm pretty sure but of course i can't really be sure. and how do you manage seizures day-to-day?

also, for people with chronic pain in general, how do you get people to believe you? i just feel like everyone is starting to think my pain is psychosomatic, which i think of course, some of it is. everyone experiences psychosomatic pain sometimes, and i do have a history of mental illness. but i actually feel pretty good right now!! and i'm doing everything i can to limit my stress, pay attention to my body, give myself positive affirmations, rest, do some gentle movement throughout the day, sleeping a lot (8+ hours usually) on a regular schedule, trying to eat a decent diet, meditate, stretch, i mean, i am really trying everything i can.

but i just don't know what do sometimes. so any advice, especially from other people with chronic pain, is super appreciated. and thank you for reading all of this if you did. i hope you are having a wonderful day!! here's to the lovely journey of becoming closer and more loving with our bodies.

[iampikachuhearmeroar]

i can vouch for the don’t miss your doctors appointments bit after blah blah stomach tumour removal had me stuck in icu for a month and ended up being an 8hr surgery and 3 month stay in hospital blah blah. and on top of that! don’t brush off/underestimate your symptoms to your doc. the reason it took me so long to realise something was wrong because i was all like “maybe it’s just anxiety attacks and my anxiety!!!” it wasn’t until the hospital and the gastroenterologist called me back last year in about july/august after nsw’s first lockdown that i was like “yeah maybe i should finally get these random bouts of vomiting checked out properly again instead of putting it off like i did in 2019 bc i thought uni was more important than my health”.

and uh yeah. it turned out the tumour was bleeding (size 5x5) and that it wasn’t just in my duodenum, but by the time i got to my surgery in mid november 2020, it had started to go into my kidneys as well. i had to be intubated on & off due to (a.) the initial post surgery and (b.) complications such as fluid on my lungs. i had two chest drains inserted at diff times and the first one was the WORST FUCKING PAIN I’VE EVER BEEN IN, IN MY LIFE SO FAR… like even worse that my high school and early 20s periods period pain that made me almost pass out each month. with the first chest drain, i barely fucking slept for the 3 days i had it in for bc it was that painful. and hell. i had to learn to walk again and to be independent again; bc for the bulk of my time in the icu i was a fall hazard bc i was on so many meds and spent so much time in bed; which was always my fave place to be, until the icu happened lol.

hell, at one point i nearly shat myself to death and needed a ventilator…. all because i thought i’d try the hospital coffee one day and it sent me into what i called “poop sweats” that had me shitting literally at least once an hour for like two days straight. it was a fucking nightmare and i was scared of the bed pan for quite a while after it. so. no coffee right after stomach surgery is the lesson here lol.

hell, my christmas present to myself in 2020 was my first independent shower on the normal post surgery ward. no nurses to help, just myself, on my own. it was freeing. fuck, i almost fucking died after my bowel decided to fucking aneurysm right before new years; which landed me back in the icu for a day and a half; while they monitored my 4 blood transfusion bags bc i’d lost so much blood through the aneurysm…. and that was literally right before new years.

so push for diagnosis. don’t miss doctors appointments!!!! give a fuck about your health. don’t brush it under the rug. and for the love of fuck; please NEVER think that uni or work is more important than your health!!! bc nothing will teach you the appreciate life and its little things than almost fucking dying and losing your independence, for no matter how short a period. nothing makes you appreciate solace and privacy more than being stuck in an environment 24/7 where people can just barge in and be all like “hey i know you’re getting changed rn but i need to look at your wound. how is it??? or “so. how are your bowel movements??? have you pooped today??? please tell us when you do!”

i turn 26 this coming wednesday. the day after is the 1yr anniversary of being diagnosed with that tumour. it’s been a long ass year healing from this. although trying to get to therapy to process it is basically impossible considering that psychologists are closing their books bc of the pandemic; which is fair enough. but still. if i could get a therapist at some point to piece this stuff together mentally, it would be great. bc life is catching up with me at almost 30….. despite me joking that i should just wait til i’m 30 in a few years to really bother dealing with shit lmao.