My Rheumatoid Arthritis Test Was Negative, But I Still Had RA
Teresa Shaffer, 46, of Morgantown, W. Va., had a history of chronic pain going back to an osteoarthritis diagnosis in her 20s. Doctors initially thought that her pain, which got worse with age, was due to osteoarthritis, and laboratory tests were negative for rheumatoid arthritis. Finally, however, one of her doctors understood that the pain and deformity in her hands were classic symptoms of rheumatoid arthritis. While she still struggles with pain and there are days when she can’t use her hands, she tries to stay as upbeat and active as possible. She volunteers for the American Pain Foundation, knits, and paints ceramics.
When I was about 24, I was diagnosed with osteoarthritis in my back. Unfortunately, it just got worse and I seemed to have one condition after another added to the list. When you had one chronic pain disease, it seemed like your body just keeps piling on others.
Then a few years ago, I started having serious problems with my hands. They hurt so much I couldnt even pick up a can of soda. I would try to grasp the can and hang onto it, but I would drop it.
I went to my doctor who tested me for rheumatoid arthritis. The test came back negative. He knew the testing wasnt 100% certain when it came to diagnosing rheumatoid arthritis, but we decided to assume it was part of the degenerative joint disease, osteoarthritis.
Eventually, however, my fingers started going in different directions when I laid my hands down flat. He did another test, which still came back negative, even though I had all of the classic symptoms of rheumatoid arthritis. He sent me to a rheumatologist, and although the tests were negative, she said she was certain that, in addition to osteoarthritis, I had rheumatoid arthritis.
I was mad, but I had to move forwardGetting a diagnosis was different for me than it probably is for other people. At that point in my life, after living with pain for so long, another diagnosis was just like adding another name to the list, just one more disease. It wouldnt have done any good for me to get upset or depressed.
I did get mad, though. I thought, ‘Wait a minute, I already have A, B, C, and D. Do we really have to add E too? Still, I just had to bite down and move forward.
I handle my rheumatoid arthritis through pain management. I initially tried rheumatoid arthritis medication, but I had problems. I had little or no success with them, plus they just didnt seem to agree with me. So, I try to manage the pain and live with it daily, which I was already doing anyway.
I have flare-ups; there are days when I cant use my hands very well at all. But I also go into remission and can go for days and weeks without severe problems. I dont dwell on the pain whether Im hurting or not.
I am a big proponent of using distractions to help manage the pain. You have to have a distraction; you really need to have something to do or someplace to go that takes you out of the realm of pain for a while.
I have many. I like to paint ceramics, knit, put puzzles together, and do all kinds of crafts. When Im keeping busy with things I enjoy, I can push the pain back and say, ‘This is my time. Youre not allowed here. This is just for me.
Even if its only 15 to 20 minutes that I can stand to be active, thats 20 minutes that I can focus on something other than the pain. I think it is very unhealthy to constantly be struggling with thoughts of pain. I feel it and I cant make it go away. Still, I can make myself concentrate on something else for a while.
I also volunteer with the American Pain Foundation, so there are a lot of days when I want to be working on the computer and cant because I cant get my fingers to cooperate.
Its hard, but healthy, to stay positive
I tend to feel most angry when pain stops me from doing something Im passionate about. Thats when the ‘Why me? creeps in. I try not to go there. Living with pain is not fun; it affects every aspect of your life. But I always try to focus on how it really could be so much worse. There are people being given terminal diagnoses every day. I have pain, but Im alive and am hopefully going to stay that way for a long time.
I also try to focus on the positive aspects of my life. My pain started getting really bad when I was about 26 and my youngest child was a year old. I raised all three of my kids while dealing with a life of pain. My kids watched me coping with pain as they grew up, and I now have three of most caring, compassionate children you will ever meet.
I also feel that as long as I keep fighting against the rheumatoid arthritis, it doesnt own me. As long as I push back, it doesnt take over my life and I stay in charge. It can be hard to be positive, but it is so much healthier for me.
If I start dwelling on the pain and let myself go into the pity mode, which is all too easy, I am going to fall into the darkness, which is what I call depression. And it is really hard to get out of the dark when you get into it. Once you fall in, its difficult to climb out of that dark hole and you lose the strength to fight there.
I can get depressed, but I dont like to. Depression isnt necessarily a bad thing, but for me it tells me Im losing the battle. And it is an ongoing battle to stay somewhere in the middle and be OK with life as it is.
I never asked for a life of constant pain. Nevertheless, I also am a firm believer that good things have and will come from my life of pain.
As told to: Tammy Worth