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shoulder discomfort: are my arms attached?

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.

  1. Hi Shannon. Sorry you are going through this. There is a lot in your post, so let me try to help maybe a little.

    When I had my RA at first, I had weakness and couldn't carry a boiler of water from the sink to the stove, crank my car, steer my car, unlock my door, you name it. I had tremendous pain in my arms and shoulders. The pain was also in my muscles. They decided it was also fibromyalgia.

    My mom also has RA. She had similar issues, but with only one shoulder. It turned out she had a torn rotator cuff.

    When I was at my worst, my whole body felt like it couldn't hold itself up and I wanted to just collapse. It was the fatigue.

    I hope you are able to work through this with your PA and get some relief. It sounds miserable.

    1. Hi Shannon! I am so sorry you are hurting. I am glad you are getting some treatment. Would your PA be able to do further testing to see if you have significant joint degeneration in your shoulders or if something else is going on? Shoulder pain is actually a pretty common issue within the Rheumatoid Arthritis community. You can read more about it here -- Again, I am so sorry you are hurting. I hope you are able to get insurance soon so you can get the testing and treatment you need! Thank you for reaching out. I hope you get some definitive answers AND some relief! Best, Erin, Team member.

      1. Thank you for the replies. Dealing with the frustration is possibly the hardest part.

        I didn't think of there being any sort of orthopedic issue overlapping here as I've not had any recent trauma, but it's a good thing to remember that just because I have RA doesn't mean it's responsible for everything.

        I think that my tendency to not want to "worry" friends and family has lead me to unload here although I suspect I'm not the only one.

        Thank you again, I'm grateful for the input!

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