"It's not fun being the interesting case" -Chronic pain before I even hit 20, still no idea what it is.
"It's not fun being the interesting case" is a quote from my last doctor visit, said by the general doctor that I had to go to due to my usual chosen doctor not being in for the month of may.
I hope that my low karma won't get this post down but we will see-!
I have started experiencing chronic pain since I was about 17, at least, that's when I noticed that I was in a lot of pain. I would skip classes or leave school early due to the issue- doctors gave me some excercises for elders but after weeks it didn't improve much so I stopped. I didn't think much about my issues- sometimes the pain was worse, sometimes the pain wasn't there at all, so I just kept going.
Until about a year ago.
Around may/june 2025 my chronic back pain got so bad that I had to quit my job- I immedietly went to the doctor and thanks to a connection got taken into physical therapy/rehabilitation. Excercises, massages, stretching, it even got extended to double the time (20 days) yet I didn't see any improvement. There were days where I could stand or sit for a few hours and days that I had to spend in bed. Coming back to the doctor, especially with the concern that the pain was spreading to my legs, I was sent to a Neurologist who sent me to have an RTG- Kyphosis and Lordosis but according to the doctors it shouldn't be causing the type of pain I was describing, let alone it's intensity.
Next, had an MRI done on the spine and brain- Spinal disc herniation and a cyst in my brain. Was told to worry about the cyst in a year and re-do the MRI to check if it had any changes, but talking to a Neurosurgeon resulted in him insisting that the herniation is too small to actually be causing pain, let alone have any serious treatment, and that there is no root cause inside the spine. And, of course, being told to loose weight.
I weigh around 70KG, maybe 75 at the time, and I am 1,63M. I know I am not of the best weight, after being a very active child around age 13/14 I started struggling with sports, but I am certain that my weight cannot be the sole issue to my pain- which by that point started slowly appearing in my arms, and inevitibly, the treatment between public healthcare and private one being too expensive.
I have hashimotos, psoriasis, ADHD and I am in the middle of transitioning- on their own the costs for my medicine aren't that high, but they quickly stack up, especially when you add in mood stabilizers and sleeping medication, and of course, the various pain killers I was put on. This all resulted in having to go back to work- and considering the fact that due to my health I wasn't able to pass school, I could only get hired at a fast food restaurant. The pay is what it is, but I have decent coworkers and managers so I don't complain about it- my only problem is that I want to work more but can't due to my health, which is annoying. The pain didn't go away just because I went to work of course...
I returned to my general doctor, who shouted at me, how I am living in a utopia and she can't magically figure out what's wrong. I went to her, having written down and pointing out how it's getting worse, in which ways it's disturbing my everyday life, how I am starting to struggle to get out of a bath, and she directed me to a few more specialists. That was of course my last visit with her- I switched to a different, much more understanding general doctor.
I was directed to a pain managment clinic- due to how expensive they are I have to rely on public healthcare and my date is at the end of october this year. Next up was an orthopedic doctor- he looked at all my results and made it clear that 1. My weight is not in any way shape or form connected to my pain, 2. My spine wasn't causing the issue either due to the fact that it didn't have any nerves it was pressing on or tangled with and that the herniation was in fact not causing the problem either. He proposed to me a month off of work- which I declined. Not because I wasn't in pain, but because I didn't want to spend months doing nothing while knowing that my condition won't suddenly get better.
I was sent to a neurologist once more- just in case, to get a second opinion, and reccomended a rheumatologist. The neurologist took all my information, checked it, asked me questions, and said simply one thing. 'Fibromyalgia'. A name I heard before- by a friend of mine who struggles with it, who insisted that they believe I have it too. I didn't dare peep to a doctor about it, worried that they might think I am trying to get high on medication or get free days off work- but I had a doctor say it themselves. Still. This wasn't the end- this wasn't a diagnosis. I had to go to the rheumatologist first. By now, the pain was all over my body. At night, during the day, at work, at home, standing, walking, lying down, it didn't matter. Thighs, arms, fingers, around my knee, my shoulders... My muscles were weak- I was and still am struggling at work when I have to lift things with one arm- or have to do a certain motion multiple times, yet carrying heavier boxes doesn't hurt at all. The shivers, little sparks, it all became my everyday. A 6 or 7 pain was just my 'normal'.
At the visit, it seems like all my joints are fine. No inflamation, no extensive growth, no nothing. All the joints she checked were fine, both hands, both feet, only small osteophytes but they wouldn't have been causing a whole body pain daily. She sent me to have blood tests- all of which have turned out fine so far but I do have to check ANA which is gonna be the next thing I do. She sent me back to the neurologist with a request to perform an EMG, so that's what I did next. For the first time- I was given a healthcare paper that had a little stamp that said it has to be done as soon as possible- meaning that instead of having to wait months, I'll only have to wait till 10th of June this year. Yeah, it's still not as soon as I'd like it to be, but It's better than waiting a year.
I have been perscribed aceclophenac, I was prescribed pregabalin, I was prescribed duloxetine... and now, I was even given Tramadol. The pain? It's still here. Sometimes more, sometimes less, and sometimes it's hard to tell if the medication is helping. I try to not give up, considering the fact that I took each medication for two weeks, it didn't help so I slowly got off of it and started taking the other, but now, taking Tramadol, knowing that it's addictive and it still doesn't help a lot? Mind you, it's only been a few days, and I try my best to not mess with medication, mix it or increase the dose without a doctor's notice, but I am just- scared? How come a medication this strong doesn't help? Is my hope lost?
For the past half a year, I've been walking with a cane. Thigh pain high enough for me to need the aid- at work I help myself by holding onto the furniture, leaning over it whenever I can and trying to not focus on it too much, and sometimes it's fine, but most times it's bad, and still, I'd work with 'bad', but the problem is that it's getting worse. Writing too many notes at my weekend school is painful. Sometimes going to a place that is a 20 minute walk away is just too much of a hassle. The cane is starting to be painful to carry, it feels like it's too heavy but I know that not using it will be worse. My arms, my hands, my shoulders... at this point, I don't remember the last time I had back pain, to my surprise, it's as if the spine never had any issues to begin with.
I try my best to stay positive, and not give up, especially considering how much has been done already, but it's certainly exhausting. I am concerned because I work part time and that is proving to be too much for me, but I won't be able to cover my medical expenses if I quit. I don't want to just sit at home and do nothing either- I have lost most of my social life, I'd complain that nobody invites me out yet when they do, the pain is too high for me to get up and leave the house to have fun with my friends (They are still very supportive and understand it so it's fine). I am not legally considered disabled, I am certain that I need a diagnosis of some sorts here in Poland though I might be wrong, I'd still need a doctors note and I struggle to stand up for myself in these cases- I am worried they will think I am lying, that I am lazy, I am trying to get the free benefits etc...
This june 19th I am going to be 20, and I feel extremely disattached to the number. I am left behind while my peers are moving forward, and I am trying my best to chase after them. My last visit to the general doctor, who I am quoting said "It's not fun being the interesting case" did open my eyes just to how bad it's gotten. He tried to catch up on what he could, based on my history, all the exams, the medication I have taken, all the other doctor's requests, but it wasn't easy. We were both frustrated but he made it clear he was frustrated at how complicated the situation was and not me. Same buddy. Same. He was lost as to where to send me next, what proposal to give or advice to hand out. I left understanding that this isn't going to get any easier, and maybe it's desperation, but I figured that since me and most of the doctors I went to are out of ideas, maybe someone out there can share their own experience with a similiar situation or point us further. And if not, then maybe someone will read it and see that they aren't alone in the pain- and that it's always worth it to keep going. I might be in pain all the time, I might be loosing a lot of my social life, but I try my best to keep doing the things I love and talking to the people that I care about. I know I am not alone in this pain, and hope that one day I can figure out what's wrong fuels me to keep going, even when it's horrible. I don't want to 'give up', even though there are days where the depression gets bad, I still want to keep going. And I hope that whoever finds themselves reading this finds a reason to keep going, and if need be, keep searching too.
Love to all of you who had or still have chronic pain, and thank you for bringing me posts to read that help relate to the experience and see that we aren't alone with this. If any of you have any ideas where to look further, what to bring up to my doctors or any advice, please do share, I appreciate it a lot. Thank you all for still being here.