#no really my surgeon told me in december 2018 at nearly 28 that the inside of my shoulder looked like i was 80

[onlyherefortheshowmances]

I know I don’t have a lot of followers on here, especially not ones that care about my personal life, but here is a life update anyway, feel free to skip over.

Let this also serve as a lovely tale of the USA healthcare system. /s

And especially doctors who are more afraid for being caught ‘overprescribing’ controlled substances by the FDA or DEA than they are of not treating the patients’ pain appropriately.

Background: I have formal diagnoses of Rheumatoid Arthritis (RA), Osteoarthritis (bilateral, but all right side are slightly worse - knees, hips, lumbar and cervical spin, shoulders, and elbows), and Fibromyalgia. All the fun pain causing things. It took from my very first symptom (right knee pain) at 14 until I was 29 (in July 2020) for a doctor to even consider checking my rheumatoid factor (which for the record is supposed to be under 14. Mine was 176 and 2 months later it was 194). Previous doctors had agreed that I had early onset osteoarthritis in my knees about 5 or so years earlier, but that’s in. The fibromyalgia diagnosis came in April of 2022. I had a repair surgery on my right shoulder in December 2018 (I was about to turn 28), and at the 1 week follow up appointment my doctor straight up told me he had to check he had the right patient after he looked inside my shoulder because it looked like I was about 80.

Now the current saga: Since February 15th I have been having the worst pain flare of my life. Including multiple instances of very sudden onset drowsiness/fatigue in the middle of the day for no clear reason (no one has figured that part out yet or even seemed to be interested in that part honest?).

On Feb 15, I had my last appointment with my former Rheumatologist who I loved, but left the practice so I had to switch now. She took me off two meds I’d been on previously between a visit in December and that visit. At that point I was feeling pretty baseline. I scheduled a visit in May with the other Rheumatologist at the clinic I go to. Driving home from that appointment while on one of the busiest and most accident prone highways in my area, is when I got my first sudden drowsiness/fatigue spell. Like I had to fight to keep my eyes open the last five minutes of my drive home and to get inside (obviously I did so safely).

When I was safely home, I call my primary care physician (at the time)’s office to see if I could be seen as this symptom was worrisome. The soonest appointment they had (as of a Wednesday evening) was the following Monday morning. I made the appointment with the clear intention of going to Urgent Care in the meantime and using it as a follow up.

Went to the Urgent care I usually avoid because the wait at the one I like was 3+ hours. Wouldn’t do anything other than a finger prick glucose test and swab me for COVID. It was not COVID or the flu or RSV.

Finally to see my PCP on Monday, February 20th in the morning which is also the first day I woke up in extreme pain. I told the doctor this. And by the end of that visit I fully decided I was switching PCPs, because she yet again blamed my weight checked some standard blood tests, swabbed for COVID again (which was negative again) and said probably viral you’ll get over it (even though I’m on immune suppressants so if it were viral that could be an issue). I also saw my (psych) therapist and physical therapist that day and had PT again the next day, so if we’re keeping track that’s already 6 health care visits so far and we’re only a week in.

Had PT again on February 23 (Thursday). Still in increased pain mode, but I could tolerate it at that point. PT on the 27th (Monday). CT Scan of my abdomen on Wednesday March 1st which had been ordered nearly a month prior when I was having left side abdominal pain that an ultrasound couldn’t figure out. The CT didn’t figure that out either, but that part subsided on its own. PT again on March 2.

On Saturday March 4, I decided to go into the city to the market as one does. I proceeded to sprain my right ankle pretty severely and bruise both knee caps. went to urgent care about the ankle on the 4th and then the knees on the 5th when I realized they hurt pretty bad, too. On March 6, I have PT, a therapy session, and an appointment with my endocrinologist where she put me on a new med to help with my PCOS. More PT on both March 7 and March 9, and an appointment with the (now previous) family doctor also on March 7 to go over the results of the CT which she had already called me with anyway. That was the last time I saw her.

March 13 and 15 I had PT. I also had a therapy session on the 15th. This was the point when the pain was skyrocketing. And if we’re keeping track that’s 21 medical appointments in one month February 15 to March 15.

On March 16, my mom drove me to an ER about 45 minutes from where I live that is a huge medical school and has every specialty under the sun and is also the medical group I use for Rheumatology and Endocrinology already. I went in in extreme pain they gave me IV tordol which did nothing. (It never does anything.) Then the PA who I saw who was absolutely lovely had to go and ask the attending what she could do. I was told they couldn’t admit me because they didn’t know WHY I was in pain and I’m just like...but isn’t that why you SHOULD admit me, so we can figure out why? Anyway, they ended up giving me 35mg of Ketamine via IV which was a trip and a half and the relief only lasted about 6 hours. Glad my mom was there to drive me home. She also gave me 50mg prednisone and tramadol to take at home. the tramadol didn’t really do anything and as always the prednisone did nothing either.

I proceeded to lay low for the entire following week other than an appointment with my therapist on Friday the 24th. I had at this point in the pain flare gotten to a place where I was in bed more than I was out of it and in so much pain it was often all I could think about.

I resumed PT on the 28th which is also the day I saw my new/current rheumatologist for the first time. She put me back on the meds the previous one had taken me off of thinking that could’ve caused the flare (I really doubt that’s true, but whatever). I also had PT on the 30th and then on the 31st I had therapy and an appointment with chronic pain management at the same hospital I’d been in the ER of on the 16th. I had to drive myself because my mom was working that day. They looked me straight in the eye and said the kind of pain you have all over, and that you’ve had for this long, there’s not a lot we can do for you. We can’t do injections cause you hurt all over. We can suggest some medications to your PCP for the fibromyalgia or we could consider medical marijuana. Almost all of my psych drugs that we finally got figured out are contraindicated with THC, so that option was out. So all that came of that appointment for PAIN MANAGEMENT was a note sent to my new PCP that she should prescribe either Lyrica or Savella for my fibromyalgia. I proceeded to go back to their ER and get an even less helpful PA who all I got was Toradol and asked if I wanted I psych consult when I said I’m in so much pain that death sometimes seems like a better option. THIS IS NOT A PSYCH ISSUE. THIS IS A PAIN ISSUE.

Last Saturday, April 1, I went to a different ER the one that my previous doctors were all part of, that’s much closer. The doctor there was the first one that actually helped or did ANYTHING honestly. He pretty much immediately got an IV put in, gave me oral tylenol, IV Toradol and then IV dilaudid which knocked me out for a nice nap until the MRI of my thoracic and lumbar spine which took over an hour and was very uncomfortable. The MRI didn’t show anything other than lumbar spine osteoarthritis which I already knew about. He gave me temporary scripts for oxycodone (opioid pain med) and flexeril (constrolled substance muscle relaxer).

I saw my new PCP on Monday evening after having PT earlier that day. I also got my hair chopped off in between because I though maybe the weight of my hair was part of my neck pain issue. The new family doctor did not listen to ANYTHING I said other than I need refills of my allergy med, please. She did not care to discuss literally anything else even when I told her pain management SENT HER A LETTER TELLING HER TO PRESCRIBE LYRICA OR SAVELLA. she did nothing. She did not care at all.

On Wednesday, I ran out of pain meds and the pain ramped right back up, so I called to make an appointment with this PCP again. Had my mom drive me over the next afternoon. She REFUSED to prescribe the medicine that actually helps me but did prescribe the lyrica and make me sign all this ridiculous paperwork because it’s technically a controlled substance (at the lowest level). I started that last night and today I went to PT in the morning thinking maybe they’ll help, when I left I thought they might’ve, but by the time I got home I felt worse than when I got there, so I made a nearly hour long drive to yet another hospital in search of ANSWERS. Not even meds at this point ANSWERS. I was seen very quickly by a resident doctor who orders oral tylenol an injection of toradol and a lidocaine patch on my back where I was having the most pain. I talked to both him and the charge doctor about everything that’s been going on and he then prescribed the same meds as the ER last weekend did in hopes that the Lyrica will kick in and start working by then.

So now, for those keeping track at home. I have had 34 medical appointments since 2/15 and still have no actual answer for why I am in this much pain or why I get random drowsy/fatigue spells in the middle of the day. Still have no hospital willing to admit me and try to figure it out. Currently sitting around with a heating pad basically glued to my back. I did stop at target and purchase OTC lidocaine patches to try and a yoga ball because some of the most helpful stuff for me at PT involves said yoga ball and it was like $15.