u/sakthi38311

my new doctor seems to think that I have fibromyalgia. i was diagnosed with seronegative RA 3 years ago. last week I went to a new rheumatologist who seems to think I have fibro. he said it's either RA or fibro (but he emphasized more on fibro). he gave me hcqs and gabapentin. i thought Gabapentin is like a pain killer.

my joint pain has seemingly gotten worse on it. i also got headaches now. I've only taken it for a week. is it safe to stop taking it? what do I do? is this supposed to happen? I've never had a pain killer that has increased my pain but also the only factor that has changed since last week is these meds.

what do y'all think?

my rheumatologist said i either have seronegative RA or fibromyalgia (idk why he thinks fibro cuz I don't have any symptoms idts). he gave me gabapentin for fibro. i assumed it's like a pain killer? i feel like it has made my pain worse. what has ur experience been on it?

i have a health tracking journal for my physical, mental, sexual health. what do u think i can track that is specific for my autism? i have alr put down energy levels, stress, anxiety, mood, sleep. i also have adhd, so i put down stuff related to that. is there something that i can track for autism that will help me?

i made this post 2 days ago: https://www.reddit.com/r/rheumatoid/s/IfM9nfSapq

y'all gave me true support. i went to the same rheumatologist today before deciding on whether to give up or not.

he said my symptoms does not point to RA (???) for 2 reasons:

- it did not develop rapid enough

- negative anti-ccp

i guess he is a seropositive truther cuz he literally told me there's no possibility of RA if blood work is negative.

he said i might have inflammatory RA or fibromyalgia. i don't see how i can even have fibromyalgia considering I have no neuropathic pain/general body pain. i have pain localised in my (small) joints. it's a dead end diagnosis anyway that leads to no treatment or hope

he prescribed me hcqs and yoga :/

for 6 weeks to see if it improves.. he asked me to take mri of my joints on a bad inflammation day.

idk where to go from here. feeling pretty shitty. it's not like I want it to be rheumatoid. im just tired of doing pain management without having any clarity on underlying issues. i just don't feel hopeful of receiving any sort of treatment

anywho in the light of it all, i thought maybe im just making it all up in my head and if I pretend i don't have anything wrong with my body, I can be normal. my room have gotten so messy lately cuz I couldn't clean it due to flare ups. i decided I don't have RA and this is not the way to live. i started cleaning and half way thru got humbled. now im attached to bed

so yeah. whatever

i was randomly thinking about my pre-rheumatoid days. it's only been 4 years. the number of things I took for granted..

things I used to be able to do before RA:

- an active morning routine: waking up at 5 am even without good sleep and go jogging/ play badminton/ swimming/ gym. come back home, drink green tea, read news. all before going to college classes at 8 am

- carrying heavy things: i used to carry 2 heavy luggages in both hands and one in my shoulder and climb stairs. i could lift water cans and fix bubble tops. i used to be so strong. yesterday, i lifted a coffee cup and had a hand cramp

- being dependable: i used to never cancel plans even when i was tired. the meaning of what "tired" used to be so different. i used to consistently show up. now i feel like I can't promise anyone anything cuz idk how my energy levels will be on any given day

- writing for a long time: 3 hour exams, long journaling. i can't hold my pen now for more than a minute

- long walks: walking was my favourite activity. i love walking dates. i used to get in 15-20k steps a day

- standing???: i could stand for long time before. now i need to sit down every 10 mins or so. and when im sitting, i want to lie down

- cycling: once i cycled 56 km (gear cycle obviously) while I wasn't even physically active for months

- feeling independent: opening jars, bottles, fiddling with screwdrivers,

- waking up late and making it in time: i could wake up 15 mins before work/classes and make it in time (without showering obviously lol). now I stay in bed an hour after waking up

- having no pain: i forgot what it's like to have 0 pain. if i had the kind of pain I have now on the daily, i would've gone to the ER. i wish someday I don't have to take any medicine at all

- living bad: I miss having a "unhealthy" lifestyle. sleeping 3 hrs, drinking late night, smoke breaks, eating junk. it's not about doing these things but about the ability to do it without much consequences. now i can't even drink 1 beer before getting inflammation

i know I can technically do some of these even now. but I can't do them sustainably. i feel like im too young to be afflicted with this disease. im so sorry i sound too negative but im just tired of everything

im so frustrated. i have all the symptoms:

- symmetrical joint pain (that progressively increased from fingers, wrists, to elbows, shoulders, jaws, ankles, knees)

- swelling

- morning stiffness that lasts more than an hour

- flare up days when it's hard to move out of my bed

- brain fog

i got diagnosed with RA 3 years ago based on my symptoms and blood test on CRP, ESR, ASO which were positive. RA factor came out negative. i was told I have seronegative RA.

now i went to a rheumatologist and he asked me to test for CRP, Anti-CCP, ANA - all of them came back negative. so idk if he's gonna undiagnose me. im too anxious to go to the next appointment.

i don't even know what to think about any of this. my friends told me that I should have advocated for myself to the doctor instead of downplaying it (the doctor was kinda intimidating and had an untrusting tone from the beginning. he said "u don't have it as bad as my other patients")

im in immense pain to the point where i can't go to my job continuously. but my blood work showed NOTHING???? how is this even possible? the first time I walked into a clinic 3 years ago, i did not even know what RA was. they gave me a diagnosis on a random tuesday. i was in denial for over a year before it disabled me to the point of no-denial. now im told that it's not that serious!??

i feel so agitated and scared and frustrated. dont get me wrong. i would be happy if it's something curable. i just want to understand what it is. i just want some doctor to take me seriously and treat me

like after sexy times, for a long time, i can think back to the moment and actually feel their touch exactly as it is. everytime I think back, I can feel it on my skin - the pressure, warmth, the touch.

i think it might be related to how when u swim for so long u feel like floating even on ground?

what is this called? do u have any idea?

Like you dont know when to take a hint to leave? my current company is a sinking ship. Everybody is jumping. but the uncertainty has frozen me. cuz it might not sink. idk i feel like i always do this. the last person to leave a friendship, relationship, job. idk

As in, sociology of education but more specific to higher education. From beginners to advanced research books, some specific to Indian context is also appreciated. Thanks!

a bit of a rant:

i was going to my childhood orthopedic doctor for 2 years. his treatment worked until it didn't. he gave me vitamins and anti inflammation specific NSAIDs. which is kinda v beginner ik. so i thought I'll switch doctor. went to this expensive doctor cuz some ppl recommended

he was so condescending and dismissive. then he gave me tablets (that costs more than my rent). he was like, because u weren't on meds for a year and u were fine, I'm sure it's not RA. i mean who told u I was fine?? i just am so disappointed in the way I'm being treated for my RA, like i feel like these doctors don't even believe me

and the thing is, i would feel imposter syndrome usually but I did not even know I had RA when I walked into the hospital for random hand pain 3 years ago. and then i got 2 opinions. both doctors said it's seronegative RA.

beyond that, i spent a whole year gaslighting myself that it isn't RA and my pain is not bad. i would keep rings by my bed side to verify if I have inflammation or if I just want attention.

i feel so stupid and so ashamed. and everything hurts all the time. i hate feeling sorry for myself too. everything is so frustrating and nobody gets it either. i was a really smart and active person. i have constant brain fog now and I get depressed for no reason. both summer and winter makes the symptoms worse and i live in the tropical region so we literally only got those 2 seasons.

nobody around me has RA and it feels so lonely. i really want someone to tell me that my pain is real and how to live with this

LIKE. BRO. I KNOW