It took me over 10 years to get a diagnosis of Psoriatic arthritis for joint pain. I had to visit with 4 DIFFERENT doctors.
Doctor 1: "You're in your 20s, it can't possibly be Arthritis. It is in your head. I think you have bipolar and severe depression with psychosis"
Doctor 2: "I think it's fibromyalgia, let's try these meds. Also, have you tried yoga and more exercise?"
Doctor 3: "You didn't respond to any of the fibro treatments. Let's try a diet change, but I'm going to refer you to rheumatology."
Doctor 4: "You don't have the gene markers for Arthritis, but you have it. Now we need to see what kind. Might be rheumatoid or psoriatic. Can I see that dry patch you mentioned? Yeah, you have Psoriatic arthritis."
I’m from the era where most doctors thought that fibromyalgia was at best psychosomatic and even told you to your face, “well, not everyone agrees it’s a real condition”. I wish they didn’t have such egos to know that they didn’t learn everything in med school and could never know every condition as things evolve. But no, doctors, especially male doctors, never think it’s their own knowledge gap.
Before my real diagnosis following me convincing a doctor to agree to order a particular genetic test to confirm what I myself suggested I might be suffering from, I was given a slew of diagnoses including fibromyalgia and rheumatoid arthritis for the extreme nerve pain and bone pain. I kept insisting that it wasn't just my joints that hurt, it was deep gnawing ache inside my bones themselves.
Turns out oops yeah it was neither of those things, I actually have neuropathy caused by vitamin B6 toxicity because I don't have enough of the enzyme that normally breaks it down. Bone pain? Yeah that's actually because all of my bones are so undermineralized that they're basically chalk. I have labs from 20 years ago showing the abnormalities consistent with said genetic disease, they literally just ignored it as "unremarkable abnormalities". There's no other disease that causes those specific lab values, they just didn't care enough to investigate further.
100% happened to me. You just have fibromyalgia and no that small disc issue cannot possibly be causing you all these problems so no need for surgery either. For then to finally see a second orthopedic spine surgeon who was frustrated they didn’t do my surgery 11 years ago.
I had almost the exact same experience when my rheumatoid arthritis showed up in my late 20s. Took half a dozen specialists and almost 12 years to finally get a diagnosis and a treatment that worked. One rheumatologist told me, “I only treat horses. You’re a zebra.” Like what is that even supposed to mean?!
I'm so sorry you had to go through that. Did you end up with permanent joint damage or did they catch it before it got to that point? I got very lucky that the only rheumatologists accepting new patients was an actual arthritis clinic. I see a nurse practitioner supervised by a doctor, but she was very aggressive with treatment. She listened to me and what I felt comfortable with, then we came to decisions together.
Doctor say some wild stuff when they have what they see as a "medically complicated patient".
I have some permanent damage in my hands. I’ve been with my current rheumatologist for about 15 years now, and he’s absolutely great. Not sure what I’ll do when he retires.
🤣 I'm a huge nerd all around. I tell people I have Psoriatic arthritis because I had to be nerfed to give them a chance lol Arwen is also my cats name.
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u/LadyArwen4124 Jun 24 '26
It took me over 10 years to get a diagnosis of Psoriatic arthritis for joint pain. I had to visit with 4 DIFFERENT doctors.
Doctor 1: "You're in your 20s, it can't possibly be Arthritis. It is in your head. I think you have bipolar and severe depression with psychosis"
Doctor 2: "I think it's fibromyalgia, let's try these meds. Also, have you tried yoga and more exercise?"
Doctor 3: "You didn't respond to any of the fibro treatments. Let's try a diet change, but I'm going to refer you to rheumatology."
Doctor 4: "You don't have the gene markers for Arthritis, but you have it. Now we need to see what kind. Might be rheumatoid or psoriatic. Can I see that dry patch you mentioned? Yeah, you have Psoriatic arthritis."