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 dont get the treatment you needor even get listened tofinally having a diagnosis is very freeing.
I was also very angry because it shouldnt have taken that long. The take-home lesson? You have to be your own advocate. You cant 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 arent afraid to write prescriptions for pain patients who really need it.
Where I live, in Tulsa, they dont 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 arent 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 dont want other people to have to go through what I did.
Getting out of bed is easier now
Another aspect of rheumatoid arthritis is having a very low energy drive. Sometimes I just didnt have the energy to play with my kids. I couldnt work outside of the home and there were some chores I just couldnt do. All of this can be very tough on your marriage or relationship; the pain and physical limitations are often hard for a partner to understand.
You miss out on a lot when you are in so much pain. I wasnt able to do as much with my kids when they were younger. I couldnt attend sporting events during bad flare-ups. Not being able to pick up the kids really bothered me. I could sit down and they could crawl in my lap, but being a mom and not being able to pick up my kids was tough.
Today Im on a treatment that helps, so its easier to simply get out of bed each morning and face my day. Before I had proper treatment, it could take anywhere from 60 minutes to 90 minutes to get over the morning stiffness and pain. Now, it takes me less than half of that time to get up and get going.
Now, I can get up out of bed, shower, get dressed, and get the kids to school. Before I couldnt always do that; some days I had to stay in bed because of the pain. I can wake up now and enjoy the fact that Im going to be able to get out of bed and do what I need to do that day. Now, I have a pretty good life.