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Lack Of Swelling

A myRAteam Member asked a question 💭
Toronto, ON

My blood tests, my MRI's, and my actual joints show either no swelling or minimal swelling, but I have pain.
I am asking for suggestions on how to deal with Rheumatologists who are convinced that a patient can't have RA pain, without swelling.
Thanking everyone in advance for your assistance.

November 23, 2019
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Answer Summary

Members strongly validated the experience of having RA pain without visible swelling, with many sharing that they face the same frustrating... Read more

Members strongly validated the experience of having RA pain without visible swelling, with many sharing that they face the same frustrating challenge of bloodwork, MRIs, and physical exams showing minimal inflammation while enduring significant pain. Several members emphasized the critical importance of finding a supportive rheumatologist who treats each patient as an individual rather than dismissing symptoms that don't fit textbook presentations, with some sharing they went through multiple doctors before finding one who truly listened and adjusted medications accordingly. A recurring theme was the value of advocating fiercely for yourself, requesting advanced imaging like ultrasounds that can reveal hidden inflammation, considering overlapping conditions like osteoarthritis or fibromyalgia, and never backing down until you receive proper treatment and pain relief.

A myRAteam Member

Although there are not many, I think you need another rheumatologist.

November 24, 2019
A myRAteam Member

I frankly would start by finding a new rheumatologist. You may have to go through several, I did. The first one I had was good but he retired, then I had a NP who was great but she moved, the third one wasn't worth my trip to the office, and the one I have now is pretty good. But the good ones realized that you have to treat every patient as an individual and just a set of clinical statistics because everybody is different. For years I had a lot of pain but no swelling, especially in my hands and shoulders. A good rheumatologist will take the time to REALLY listen to you, do necessary testing (even if they don't think that you need it), try different medications (every medication doesn't work for everybody), and most of all they need to have compassion. RA is a tough disease and its hard on you, not just physically but mentally!

November 29, 2019
A myRAteam Member

I have RA in my wrists and in the knuckles on my hands. Everything else is OA. I had a flare up last spring, I could not open bottles, cut meat, I even had trouble making a fist. I started on Orencia Infusions and the swelling in my wrists and hands went down. I got so excited to see that I had bones in my hands! No more pain, I have strength in my hands again. Not quite ready for arm wrestling yet ….

November 24, 2019
A myRAteam Member

I frequently have mild swelling but also have pain and stiffness. Usually when on a medication that is working pretty well. Be your own advocate and stand firm until you find a dr. That will listen and treat appropriately

November 23, 2019
A myRAteam Member

I have gone through EXACTLY what you are going through!
It is so discouraging! Do not back down. INSIST on pain relief. Request MRIS, maybe, as proof of damage going on. If you have the option, get a 2nd opinion.

December 16, 2019

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