(Have you discontinued Cimzia? See note below blog.)
One of the biggest problems with getting care for rheumatoid disease is that symptoms do not look exactly the same every day. Of course along with that is the fact that many symptoms aren’t clearly visible anyway, hence the term “invisible illness.” Anyway, it seems like it would be a great thing to actually see a doctor on a day when joint symptoms are very noticeable. And I had one of those lucky days last week.
What’s it called when a hand swells up like it was inflated with a bicycle pump?
Sometimes my hand swells up so that it can’t be used and screams in pain (like here) if it’s even brushed against. It starts as intense stiffness down the center of the hand and up the middle finger. Then the middle finger swells. Eventually the whole hand is puffy and the skin on the palm side is smooth. (When not swollen, my hands have deep lines and fairly loose skin, shown in my right hand here.) So last week, my left hand did its thing and I called the orthopedist office to see whether the hand specialist had an opening in the schedule. They did.
So it was my lucky day. I drove to the doctor that afternoon (and did everything else) with my right hand, the one I usually have to guard. I hoped to finally learn what causes my hand to swell up like that – other than “just one of those weird things that happens with rheumatoid.” And what to call it – other than “painful.”
But the hand doctor didn’t know. He said he could tell the tendons were inflamed, and he identified a nodule on the tendon of the middle finger along the knuckle that seems to be the epicenter of it all. But a reason the hand swells up, or what to call it? No idea. What to do about it? He said to try ice, and increase my prednisone, and we could inject the joint with steroids if I wanted to… all familiar of course.
Does it hurt?
An odd thing happened – the doctor kept asking me whether my red swollen hand hurt. Of course my words said “yes,” but I didn’t flinch in front of him (even though I cried in the car). So he kept asking. That old rheum stoicism keeps us from openly showing distress. (For me it started with the embarrassment of crying through a 29-hour labor.) Why does there seem to be honor in appearing strong enough to remain silent?
Even when my hand finally cooperated to display its pain in front of a doctor, the rest of me couldn’t cooperate.
Yes, it hurt.
WHAT ABOUT YOU? Has your whole hand or foot swollen up at once? Did a doctor tell you what to call it? Do you ever have a hard time telling others how much rheum disease hurts?
People – even famous ones – can have a hard time disclosing what it’s like to live with rheumatoid disease. Maybe that is part of the reason RD is not well understood. Being open about RD is hard – I try to avoid it. “Disclosure is our necessary evil. But RA is more evil, so we’ll…” Continue reading… The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure
We are quiet about pain for good reason – but maybe it backfires. A woman living with rheumatoid disease says one reason that “it’s hard for anyone to understand how much we suffer” is that we “hide the pain the best we can,” and press on to do “everything we can to enjoy life.” Continue reading… When Our Strength Works Against Us
- “Fine Thanks, and You?” and 5 More Stupid Things I Say
- Rheumatoid Arthritis Fatigue Is Not Just Being Tired
- It’s Simple: Who Gets Dactylitis or “Sausage finger”?
- If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease