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The RA doctor that I see seems to think I am a hypochondriac about pain. I had two over 10 pound babies naturally and no screaming. I walked on a knee that was bone on bone for over 10 years. My orthopedic surgeon said he’s never had a patient with such a high pain level. Even though I’m on biologic and DRMDs, I still have swelling and pain. What’s getting bad are the rashes I’m getting. Since my labs are just under the high end of “normal”, the doc thinks I should be fine. He thinks the swelling is from carpal tunnel, but I tested negative for carpal tunnel. So if the disease is under control, why are my hands numb, swollen and red? Why does it feel like my feet are broken? Could pain be causing my blood pressure to go high? Seriously, what needs to happen to get this disease under control?
No one can understand the pain of RD unless they are living with it. I get so sick and tired of hearing my doctor say “um, but your hands look good, no swelling”. Swelling or no swelling, I still hurt. And as far as my pain, I can handle pain, I have no choice because I have it every day of my life. I ended up in the ER due to stomach pain, pain that I let go for several weeks wondering if it was RA or something else. I was suffering from severe Diverticulitis that perforated and ended up having an ileostomy surgery. I was in the hospital eleven days. I had to go back in the hospital for another week to do the reversal surgery. I think us RA’ers tolerate more pain than any healthy person could ever imagine. And that’s just our physical pain, let’s not forget all the horrible side effects from all our medications. Every day is a challenge for each and every one of us. It’s so unfortunate that our disease is invisible because I don’t think we will ever get the understanding or respect that we all deserve.
Excellent article 🙂 I really love the wall paint analogy; it is a great illustration of the issues we have with the treatments developed so far. The problem really is that we don’t understand the disease and keep making stabs at it. Like we are trying to paint the wall blue with a blind fold on and then wondering why we missed so many spots. The pain not treated is not “remaining” like the extrarticular symptoms of the disease are not comorbidities, rather they are just pieces of the disease.
I think after working as an rn for 40 yrs I learned very little about my ra pts and their families. Now that I am in an acute flare up all those little ones through the years meant nothing. My family and I are in need of lots of info.