Some Days I Couldn’t Get Out of Bed Due to Pain

I have been in pain for almost 20 years. Over the past couple of decades I have been diagnosed with interstitial cystitis (a disease that causes bladder pain) and a possible case of lupus (an autoimmune disease that creates inflammation).

Then, in 2007, after having pain in my back and other joints for almost eight years, I was finally diagnosed with rheumatoid arthritis.

I bounced from doctor to doctor with everyone telling me I was too young to have the symptoms I was having. The doctors were resistant to testing me. I even went to one with severe swelling in my hands and feet and he still told me it was all in my head, even though I had visible signs of a problem.

I was angry the diagnosis took so long
I finally found a rheumatologist who was willing to do some tests and conduct a thorough history, as well as talk about my symptoms and what was going on in my life. I felt a great sense of relief to finally have a diagnosis. When you hurt for years and don’t get the treatment you need—or even get listened to—finally having a diagnosis is very freeing.

I was also very angry because it shouldn’t have taken that long. The take-home lesson? You have to be your own advocate. You can’t give up. Nobody else is going to do it for you. And all it takes is finding the one doctor who will listen.

After I started treatment, I did have some problems with several medications, but I have finally found a combination that works for me. My biggest struggle, though, has been getting proper pain management. My rheumatologist prescribed medication for the rheumatoid arthritis, but not for the pain it causes.

Unless you go to a pain specialist, it can be a real problem getting pain management. I would advise anyone in a painful situation to get a good pain doctor because they aren’t afraid to write prescriptions for pain patients who really need it.

Where I live, in Tulsa, they don’t have a lot of pain or rheumatoid arthritis support groups. That is one reason I am going to try and start one. It helps to know you aren’t alone, and many of the things people have to face, others have to deal with, too.

The American Pain Foundation has been really important for me. They have so much knowledge and a very helpful website. Getting involved with them and the action network has given me a purpose; I don’t want other people to have to go through what I did.