When I was 13 years old, I woke up one morning with my hands locked into fists and I had to pry them open. The pain soon eased. But it happened again each morning for several weeks, and then it stopped.
Turns out, I had what is called palindromic rheumatism, or attacks of rheumatoid arthritis that can come and go without leaving permanent damage. However, like many patients, I was not diagnosed with this condition because the blood tests were negative.
I didn't know what I had until about 4 years ago when I was diagnosed with severe rheumatoid arthritis, which has affected every joint. Not all people with palindromic rheumatism develop full-blown rheumatoid arthritis, but I did.
Rheumatoid arthritis is often triggered by an event like childbirth. I had a baby at 40, the peak age to get rheumatoid arthritis. When my baby was a few months old, my feet swelled up and I couldn't even put weight on them.
I was scared and went to a podiatrist, who wrapped the foot up to force my toes back to where they are supposed to be. A week later the same thing happened to my other foot. The podiatrist told me that years of working on my feet and not wearing proper shoes were taking their toll.
Then my shoulders and knees also flared up, and within about six months, it had spread to every joint. I went to see my general practitioner, and he looked straight into my husbands eyes and said there was no such thing as what I was describing.
He didn't think there was anything wrong with me. I was enrolled in an HMO, so after a few weeks of fighting to get a referral, I saw my first rheumatologist. I didn't have any swelling when I saw the doctor, and he was unconcerned. I changed insurance companies so I could see another doctor. The first day I saw her, she prescribed treatments and explained how they work to fight the disease. She was very gentle, but unfortunately I was quite disabled.
In general, the public, general practitioners, and some doctors can be ignorant about rheumatoid arthritis. You can have rheumatoid arthritis for years without doctors knowing whats wrong with you—or worse, telling you that your symptoms are all in your head. It's a big problem. Early diagnosis is the only hope for remission with RA. And if general practitioners don't recognize it when they see it, your chances of remission can be reduced.
So I did the same thing that, I think, most people with RA do—I just went on with my life for as long as possible. Women in particular are ambitious and busy and care for others and have busy lives; we do as much as we can to suppress the pain and keep going.
I was first put on Humira, and my doctor doubled the dosage because it was helping. Still, it wasn't stopping the progression of the disease. I was also on the maximum dosage of methotrexate. After a couple of years of not seeing any improvement, I went on Enbrel. Last fall I began treatment with Orencia. Ive been on it for almost six months, but it hasn't helped very much.
I haven't had a day or even an hour or 10 minutes when I haven't been in severe pain. The first few months after I was diagnosed, I met with a counselor because the diagnosis triggered such fear and grief. It is difficult to learn that you will be fully disabled with an incurable disease. It is like being given a sentence, not one that is life-ending but life-changing.
Counseling helped me process the grief. But the most helpful thing is to have at least some people you can talk to and who will listen to you. That usually means other people with RA—they understand and believe the constant nature of the pain.
That is one of the things that has been so positive about my website Rheumatoid Arthritis Warrior. I got the idea to start it about a year and a half ago. I was frustrated that I was not getting better. While researching information about the disease I realized how hard it is to find accurate information written in a way patients can understand.
The material I found wasn't consistent; I began to dream about having my own website and imagine how I would design it. I wanted to provide information and encouragement that is straightforward and doesn't lead patients astray. Now my website is full-time work for me, and there are over 2,700 members on my Facebook page. It is continuing to grow.
People I know will say to me, ‘Why do you spend so much time talking with others? But being able to offer encouragement to others also helps me and keeps me going. Having that connection with someone else helps, and I love to know that I may be able to offer that connection to other people.
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