I know this forum isn’t very active, but I’m hoping someone else can help me find the words to describe what I’m feeling.
45, Caucasian female. Seronegative RA diagnosis several years ago. Lost health insurance last year, so after 5+ years of “meh” feeling on oral meds, I found myself without anything. Most recent med was plaquenil. Because I never really noticed any sort of response, that along with the negative labwork has generally left me questioning my diagnosis over the years.
I had gastric bypass 9 years ago so that does limit what I can safely take for oral meds.
Like many RA sufferers, my baseline is some pain or discomfort almost constantly. About two weeks ago, I developed severe, significant pain to not only the usual spots (knees, wrists, hand bones), I also started having severe muscle pain which moved around, mostly throughout my arms (upper and lower). I have known osteoarthritis and degeneration of both knees and wrists/hands because of years’ old cartilage damage and plain old wearing out of the joints, so my right hand was especially problematic. The weakness was so severe carrying a saucepan of boiled eggs from the stove to the sink nearly resulted in a burn. My shoulders and elbows also felt very weak.
I saw the PA at my rheumatologist’s office (my preferred provider, go physician assistants!) whose goal is to get me through my 1st significant RA flare long enough for me to get on health insurance so we can be more aggressive with treatment. I got 120mg of Depo Medrol in my muscle at the office visit (a steroid shot) I did restart the plaquenil, and since I didn’t have a fantastic response to the shot I’ve (eventually) been started on a prednisone taper every 5 days starting at 25mg per day.
I can say that without a doubt, I would rather have the excruciating pain than deal with this shoulder discomfort. I’ve never heard of anyone experiencing this before, I don’t have the words to describe it. Besides difficulty sleeping because of the prednisone and also my skin crawling A TON when I’m not busy enough to forget it’s there, the absolute worst thing is the shoulders. I’ve never had shoulder pain or discomfort before, so this is new to me.
The best way I can describe this is that it feels like my arms are coming off at the shoulders, and the only thing holding them in place is my skin. It feels like my torso doesn’t want my arms attached anymore, yet my upper arms are desperately trying to hold on at the shoulders. I’ve never “noticed” my shoulders before, yet this feeling is SO intense it’s waking me up at night, it’s keeping me from focusing at times, and at times it’s so significant it’s disrupting every single aspect of my life. I feel like a bone bag. I feel like if I shake my arms hard enough, my bones will simply fall into my forearms like a Jenga pile that’s been knocked over. It’s like a constant flow of irritation so disturbing I feel like I’m the only person who’s ever felt this.
Raising my arms, reaching, doing anything which makes my shoulders work at all will either bring this feeling on or make it worse.
I feel horrible for hoping that someone else has experienced this feeling because I need the words to describe this or else I think I may lose what’s left of my sanity. I never thought I’d pray for simple pain before, yet here I am.