The words rheumatoid arthritis (RA) should put the same fear of God into people as the word cancer does, but they don’t. People wonder why someone who only has arthritis would subject themselves to possible side effects like “fatal infections,” “lymphoma,” “cancers,” “seizures,” “new or worsening heart failure,” and “multiple sclerosis” that come with the drugs that treat this disease. I used to think the same thing—now I know better. People hear “rheumatoid arthritis” and they think it’s like having the ache and stiffness you get when you’ve worked out too long doing something your body isn’t used to. This couldn’t be further from the truth.
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February 2012My History of RA
I was diagnosed in April 2010, at 44 years old, with seropositive RA; the disease rapidly turned my life upside down. Although moderate at first, within the next two months it became severe and out of control.
And lets not forget it is a systemic autoimmune disease, and can affect any organ in the body. Most especially the lungs and heart. I have RA lung.
I had surgery to remove a synovial cyst 5 years ago. I got an infection afterwards, and the ENT doc told me it was from 2 different bacteria. That got better, everything healed. Then a couple of weeks later, I felt a slight wrench in my knee while we put up Halloween decorations. I thought nothing of it until my knee swelled to twice its size, was hot to the touch, and was so painful that I couldn’t move it at all. The doctor thought it was regular arthritis and wanted xrays. I screamed in pain as the techs and I tried to straighten my knee. Even during childbirth I had never before screamed like that. That was my very first experience with RA pain. The swelling went away in a few days, as did the pain. Until a week or so later when I tried to lift my arms to wash my hair in the shower and they just would not do what I told them to. I could not pull up my pants. Then the pain started. Not as bad as in my knee, but enough that I could not lay in bed comfortably. It was around this time that I decided that the greatest invention of modern times is the recliner. I spent many nights in my recliner, not exactly sleeping, just marking time until the pain went away. I had several more small flares, not knowing exactly why I was having so much pain. It was a trip to Florida that finally made me go back to the doctor to tell her that this was not regular arthritis pain. I spent 3 days in hotels with makeshift ice packs on my hands, my shoulders, my wrists, my knee…the 3 hour fight back home was miserable. I could not get comfortable, I could not move, I could do nothing except cry as quietly as possible.
The pain is hard to describe, but you came very close with the saw analogy. I told my husband, who has been my rock through all of this, that it feels like there is an insane clown car full of killer clowns carrying flame throwers racing around in my body, going from joint to joint and cackling gleefully as they light each one up. I have found the right medication with infusions and have not had a major flare for a long time. But as my infusion date gets closer, I become very tired and know it is time to rest more.