I recently switched jobs. I could not be happier. Better hours, pay, and duties that are more satisfying. The big change is that I went from a sedentary job to a job that keeps me on my feet moving heavy equipment for 10+ hours a day. Overall, this is a smooth and welcomed adjustment. I feel better physically, and I have been sleeping more soundly.
Fears of psoriatic disease
However, about a week ago I came home late, went to bed, and was awakened about an hour later with a terrible pain in my knee. It felt swollen to the point that I couldn’t bend it. It didn’t look bigger to the eye, but it felt heavy and bloated. I’m not normally a worrier, but this caused me some alarm. How was I going to shine at my new job if I couldn’t bend my knee? I have to get in and out of a large box truck all day, so having legs like a Ken Doll wasn’t going to cut it.
Thankfully, by morning it was bendable. I was still sore but could at least move. Since then my mind keeps going back to the thought “Could this be psoriatic arthritis?” I have watched friends suffer and become disabled from the disease affectionately (or maybe not so) referred to as PsA, so I always have the fear of developing it lurking in the back of my mind.
So why haven’t I asked for a referral to a rheumatologist? To most, that would seem like the logical first step, and I am sure I will eventually, but my past experience is giving me pause. About a year after starting a biologic, I told my dermatologist that I had been experiencing pretty severe back pain. I also had pitting on my nails, so I knew the risk of developing PsA and wanted to be proactive. She gave me a referral, and after waiting for months to get an appointment, I arrived ready to discuss my concerns.
A disappointing doctor’s appointment
The doctor came in and immediately asked me why I was there. Now, this wasn’t in the normal, concerned way, but more in an annoyed, you-shouldn’t-be-here kind of way. Basically, the gist of it was that I was too “young” to be seeing a rheumatologist. I wasn’t limping or at a point, I had to use a walker. I wasn’t showing any “classic” symptoms. Plus, I was on a biologic, which is the treatment for PsA, so what more did I want? I was appeased with an order for an x-ray and dismissed.
I never went and got that x-ray. I felt invalid. I felt that I was making something out of nothing. I have spoken with others that share a similar experience to mine. In fact, according to one study, only 30 percent of patients were diagnosed with psoriatic arthritis within six months of the onset of symptoms, while approximately 70 percent had up to a two-year delay in diagnosis.1 There is a lot of damage that can occur in two years, and often times it is irreversible.
Advocating for my own health
Not being one to wallow too long in the pity pool, I have learned from this experience that it is important to be my own advocate. I had the opportunity to meet a great rheumatologist that chaired the cycle event for National Psoriasis Foundation in my hometown, and I plan to reach out to him. It’s so much better to go for a second (or third, or fourth) opinion than risk letting a misdiagnosis keep me in pain. As much as I don’t like the doctor, I don’t like being in pain even more. I want to be able to run and play with my kids.
If you are a rheumatologist reject like myself, keep seeking out help until you find the answer. Maybe it isn’t PsA, but pain of any sort is your body telling you something is wrong. Also check out our sister site psoriatic-arthritis.com for more information!