Medical mystery, docs cant seem to figure out, left on my own.

23F 5’0/153cm, 132lbs/60kg
Migraine
No smoking, no drinking
Only ibuprofein/paracetamol for migraine if needed.

Had suspected iga vasculitis jan2025, confirmed from purpura biopsy. After that prolonged elevated inflammation markers. From feb2025 to nov2025 i had cumulative intermittent claudication, prolonged slight temperature after exertion (37.5°c-38.2°c) and immense nerve pain in my joints.
Between dec2025-jan2026 i was mostly symptom free, but around feb2026 my symptoms slowly returned.

I can currently tolerate slightly slow paced strolling and walking, otherwise the pain in my shins and calves and bottom of my feet get too bad i need to stop (it feels like i had ran a marathon and its ’slicing’ sort of pain). If i have doc appt and need to travel there (about 1-2hours being on my feet) i’ll crash and need sleep and get joint pain.

Used to work as a nurse so i was used to being up on my feet long hours and ive never had issues like this.
Now doctors tell theyve propably reached ”dead end” and ”sometimes we run out of options”. I feel devastated, i want my life back and to be heard.

I am helpless how to deal with this. Ive lost my job, future plans, financial security, and this has started to take a big toll on my mental state.

Mostly my symptoms now is immense fatigue, brainfog, i can only do one chore a day, if i do more i’ll crash and need to take 4-5hour nap. The joint pain has also now returned and is more noticable during night time, i struggle to sleep cause of it, ive also started to notice excessive hair shedding, i can brush out big clumps of hair daily and my hair is thinner now.
Mostly the joint pain is located in my ankles, knees, hips, sometimes even my wrists, the pain feels like electric shocks or stabbing. My legs also get pins and needles way easier than before.

So here some statistics from the labs that have been abnormal
Past 1,5 years labs have fluctuated following:
CRP 35-52
ESR 54-65
Platelets: 498-604
NEUT: 7.2-9.60
LEUK: 11.5-15.2
LYMF: 2.8-4.16

Urine has been checked multiple times and even 24hour collection done 2 times, nothing out of ordinary there, checked also for hep, all neg. Also checked for parasites etc, all negative.

PET-CT: clear
MRI: clear
MRA: clear
Lower body vascular ultrasound: clear
ENMG: coming next week

JAK2 negative, ANA and ANCA negative.
Ferritin, iron, hb, all within the normal range.
Kidney level’s fine, liver fine,

(Tldr: elevated inflammation markers with joint pain and disabling fatigue, some cumulative claudication/intermittent walking)

I need some hope that someone could help me or at least listen, i feel so dismissed and unheard and honestly, scared.