Alright hi everyone. Ill just jump right into it. I need some reassurance here that Im on the right track because frankly public health has not been a help whatsoever.
Background info: 30 years old, female. 19.1 BMI, five foot five, 50kg, physically active(I work in a kitchen doing manual labour, travel for a second job), I go for a walk every single day, sometimes two as I have a dog. I do yoga, stretches, meditation, I take NSAIDs, have generally good nutrition.
Family: Lupus on mother’s side, RA on father’s.
Flashback 4 years: I work in a kitchen and one day my foot just claws up with a sharp, aching pain. I wasnt overly concerned although it was probably a 7 on the pain scale, I just powered through…but a month in it was still achey and clawed up, so I went to the doctor. A walk in doctor as at the time I didnt have a GP(I was on a waiting list. Canada and all that). Doctor palpated my foot and said “something doesnt feel right. You might have sprained or fractured it…” Xrays show no fracture or sprain…I get sent home with tylenol 3s. Thing is…it didnt unclaw, and didnt stop hurting…for roughly four months. I couldnt put proper weight on it and had to buy a cane.
It finally unclawed but I noticed then my OTHER foot reacted similarly. Repeat. A couple years pass with this happening on and off, with aching joints now in my toes(and one toe going numb). I finally get a GP and he says “its your b12” and sends me for a blood test which comes back fine. Then he sends me to check my vitamin D, my B6, my cholesterol, b12 again, iron, b12. Over the next year and a half he sent me for the same blood tests on a basis of every two months with NO deficiencies showing up. What DOES show up is high white blood cell levels indicating Im sick. One of these times I did end up having the flu. So he just assumes I have the flu all the time. Eventually, I noticed this pain has moved into my hands, and I get trigger finger in my right thumb, and left pinky. They stay like that for extended periods, the pain that started years ago continuing symmetrically.
Then in 2015 I get TERRIBLE aching in my sacroiliac joints after an illness. I assumed the illness would pass and Id be fine. The illnss passed but the terrible joint pain never went away. I keep going to the doctor and he keeps sending me for b12 again. Now Im getting shooting sharp contractures in my ligaments in my legs that lock my legs up similarly to my fingers. A second doctor thought I had MS. No dice there. I dont match the fibro points and dont have muscle pain. No dice there.
Some time later, I notice Im getting low grade fevers, mouth sores that precede these flares(usually when the weather becomes cold/damp or hot/wet/humid. Rain…) . At this point my joints are swelling up hot and red, and so hot I get heat rashes. Im so worn out and worn down I need a rollator, and sometimes a wheelchair for things like grocery shopping. Doctor just tells me its b12, sends me for more b12 tests…they come back fine(im even a bit high in all of these).
So I seek a second opinion from a new GP who palpates my joints and says its “probably RA” and when I ask for a referral to a rheumatologist he refuses. Tells me to take a high dose of ibuprofen…up to 3800mg just to get out of bed and walk to the door. He tells me to take photos and come back if it gets worse. Which I do. And he says, go to the hospital.
So I go to the hospital. There, the ER doc asks me questions about my eyes(theyre hot and itchy), mouth sores, achey joints morning stiffness…sends me for Xrays which come back fine…and puts me on a high dose of prednisone…60 mg a day for two weeks.
Finally for the first time in 3 and a hallf years I can walk again.
My doctor says…its b12. I cant get anyone to refer me to a rheumatologist..so I reach out to the AS Society and they tell me my case is “extremely concerning” and to contact this list of doctors… which I do. and I am only given a list of social workers at a drug clinic(what).
So at this point, I now have what I think is the start of visible deformities and no treatment, and the NSAIDs are tearing up my already sensitive gut.
I need to know Im not crazy and what I should do from here. I have yet another GP appt tomorrow and I am bringing in the photos which I will link below.
Tell me what you think.
The doctors here are telling me Im seronegative, and “too young” and I had one tell me this was a “male disease”(since it looked like ankylosing spondylitis). They say the medication is too serious. Come back if it gets worse(I come back and get sent home again without new labs(I stopped going to that GP)). Now that I’m seeing a permanent change in my body and joints, I am worrying that they arent catching it in time and I am becoming more and more disabled.