#i would cancel but i've already canceled on her twice in the past 3 weeks bc of me being ill

[theroseapothecary]

my immune system is apparently f u c k e d because i am sick once again that's literally every week for the past 4 weeks where i've had something i feel so shitty

[butterfly-casket]

Lowkey can't believe I forgot to make this post but at the beginning of this week I walked out of my appointment 5 mins into speaking to my primary. (I had a pulse of 81 and BP of 112/70 going into it.) I left, immediately requested my entire medical history, canceled my insurance (specific to the hospital/clinic I went to), canceled my appointments and sent a message to my physical therapist that I appreciate her but will not be putting my health in the hands of *place* ever again. Then they asked me to fill out a short survey and I went OFF about the bs they've put me through for the past 3 years.

Under the cut is a description of my medical history from the past 3 years because I'm just trying to make some fucking sense of it all and how they still think fibromyalgia fits. I think they fucked up SO BAD for so long that they had no choice but to double down.

> At beginning of 2021, I get shooting pain down my leg & my hip keeps trying to give out

> gets so bad I go to the ER

> gets laughed out of the ER because I briefly mention that I've experienced chronic joint pain since age 10 (to give them the perspective that my pain scale is off)

> goes back to my pediatrician (I'm 18 at the time, haven't found a new primary)

> gets referral to rheumatology and bone & joint

> rheumatologist diagnosis me with joint hypermobility, says he can't do anything about it.

> meanwhile, my nerve pain is getting worse and worse.

> bone & joint doctor, I see him twice, repeatedly assures me that sometimes "people just have pain for no reason"

> pain gets so bad that the only thing I can do is sleep, being practically comatose, and only eating sandwich ingredients and dry cereal out of the box for 3 weeks.

> schedule an appointment with the first doctor I can see. My mom drives me, helps me shuffle into the clinic, and cries with me when the doctor walks in & asks what's wrong. We both become sobbing messes on accident bc I'm in so much pain.

> he tells me the only thing he thinks it can be is fibromyalgia. Prescribes me an antidepressant. The NEXT DAY. My pain is GONE seemingly out of nowhere

> I am unable to take the antidepressant consistently due to lack of primary doctor, doesn't seem to make a difference so I stop.

> 6 months later I am struggling to pee, 3 months after that I get my first uti and it was very bad (blood in my urine). I go to the ER but they quickly prove to be recurrent. I am treated by minute clinics around where I moved to.

> 8 months after the initial flare up, I start having mini flare ups while working an INCREDIBLY labor intensive job with long hours. I had already been working there for 3 months without issues

> have to back my car out of parking spaces VERY slowly because any time I turn my neck back that far to look, I start to black out and become unable to form thoughts. I was taught to neglect myself growing up, so I just thought it wasn't a big deal & that it would go away.

> 3 months after my mini flares up happened, I start to have a month long flare up that gets progressively worse before just disappearing one day.

> I think I'm better, get a new job, immediately have to take a month off of work due to extreme joint pain, muscle pain, and constant uti symptoms. (12 months later we find out I was suffering from thyroiditis.) Try to fix my sleep schedule, diet, exercise habits, and finally start to feel a little better. Go back to work but it's part-time.

> work there for 4 months in extreme pain every day, eventually have to leave because I can't take it anymore.

> apply for disability, get new insurance, & get taken care of by my partner. Also move in w roommates who I didn't realize were incredibly unsanitary. I try my best to clean up after them for 5 months before ultimately I give myself a stress fracture on both my L5 pars and send my body into yet another full body flare up that sends me to the ER. Am still experiencing hyperthyroidism without knowing it.

> ER prescribes me gabapentin and send me back to rheumatology.

> finally get a new primary who seems to really care.

> Rheumatology gives me a 9 beighton score & sends me to physical therapy which helps my joint pain a ton until I have another extreme nerve flare up 3 months later while doing my PT. Literally the worst pain I had ever experienced, could barely move. Primary ups my dose 6x and it helps at the very first but ultimately still doesn't keep up with the pain (like, at all. 1800mg a day.)

> sees a urologist who diagnoses me with Pelvic Floor Dysfunction and almost doesn't test my urine which showed crystals & a lot of bacteria (he acted like I was crazy for feeling something solid through my urethra.) He went ahead and did a CT to check for kidney stones and found an 8cm ovarian cyst (that they found 2 yrs prior & didnt tell me or my mother about even tho it 6.7cm at the time) and an L5 pars defect.

> gets reoccurring chest pain & palpations for months, one day it gets really bad and a nurse line tells me to go to the ER. ER diagnoses me with Anxiety.

> finally sees a spine doctor who diagnosis me with bilateral sciatica, spondylosis of my L5, and says there's a good chance my spine is popping in & out of alignment. Sends me to pain management.

> pain management switches me to pregabalin. It helps a little bit for a little bit. Eventually have to stop taking it due to extreme mental fog & personality changes.

> try dry needling therapy for 3 months for my lumbar back. It always relieves me for a short period but ultimately was making matters worse in the long run.

> having tons of flares ups all the time up until we had to move & 30 minutes into moving small boxes my back pops out of alignment, my legs give out and I'm in, once again, the worst pain I have ever experienced in my life for the rest of the day until the next morning I take an Epsom salt bath, feel a pop, and finally have some relief. I was sore from that flare up for a week after.

> find a new primary after moving, ask about possibly having hEDS and he sends me back to rheumatology (who found nothing) saying they have to rule out everything else first.

> go back to pain management, try a couple different things that either made matters worse or did nothing at all and decided to take a break from the disappointment.

> everyone keeps telling me I have fibromyalgia & anxiety despite the fact that it doesn't actually make sense with the pattern of my pain, doesn't match up with my symptoms &doesnt explain half my symptoms.

> symptom page is now 3 google docs pages long & after receiving my medical records I find a million inconsistencies, claims of me agreeing to things that were never discussed with me, and half of my reported symptoms are not even mentioned.

> have a dozen more symptoms that I'm scared to mention out of fear that I am going to continue to be dismissed, ignored— or worse, give them reason to think I'm seeking attention.

> completely lose hope for receiving the help I need.

> start having blurred vision and dysphagia, looks them up, reads about MS and realizes it fits nearly all of my symptoms. Make an appointment with my primary.

> goes to my primary, immediately is talked down to for "coming in the Friday before Christmas break" and "the only reason you got this appointment is because I had a cancelation."

> I burst into sobs and whip out my symptoms list just fucking begging for help, telling him I've been dismissed by almost every medical professional I've been to, most of my symptoms haven't even been recorded, & that I'm desperate. He agrees to finally help me, refers me to neurology (first time since this all started) and orders MRIs to check for MS.

> by this time I have had thyroiditis, a ton of infections, have horrible balance, tons of tingling and numbness in all my limbs, use a cane, been unable to work for a year and a half, worked with tons of physical therapists who don't know how to help my nerve pain, & have another ovarian cyst despite receiving treatment for PCOS.

> goes to the ER with my heart racing, vomiting, extreme fatigue and weakness. The doctor tries to gaslight me as they continuously tell me "You are a young healthy person. This is very psychological, you need a psychiatrist and psychologist." Until I am in literal tears because that treatment felt very uncalled for, especially because my labs hadn't even come back yet. I finally agree to see a therapist bc I recognize I am going through a very difficult thing in life and could use the extra support. I also felt very much like they were going to put me in a psych ward if I didn't agree. My lab tests come back showing I have low potassium & CO2. They treat me then send me home with 2 diagnoses: nausea WITHOUT vomiting, depression.

> neurology asks me a ton of medically irrelevant questions about school life, home life, relationship with my parents and then diagnoses me with anxiety without performing any tests.

> gets my second EMG that comes back clear

> finally gets my MRIs that shows cervical bone spurs on 3 different vertebrae.

> think I have FINALLY found the answer to almost all of my symptoms.

> goes back to my primary who says it's "just a little arthritis. Most people who have what you have don't have symptoms." & won't listen to me when I point out that I have every symptom indicative of complications with bone spurs in the neck (& I'm hypermobile)

> refuses to discuss why I have the bone spurs at age 22

> refuses to discuss the possibility of hEDS

> gets mad at me for not being treated for my fibromyalgia (even tho nothing works.) Keeps interrupting me to say it's just fibromyalgia.

> I say, "ok, we're done here" & get up to leave

> "you're leaving?!"

> "you just said nothing is wrong with me, I have the same thing everyone has been saying I've had for years, that I have the same thing I've been trying countless useless treatments for, what else can you even do for me?"

> "but I could get you a referral to a spine specialist!!"

> "you just said nothing is wrong with my neck. And I've already been to a spine specialist."

> "they could give you injections!"

> "I've already tried injections and they. Didn't. Work."

> "you don't even want a follow up appointment???!"

> "???? NO!!!"