I was just reading some of the older posts about people who were having trouble getting diagnoses and I felt moved to make this post. It's long, but it's my story. Maybe someone else will benefit from it.
My arthritic symptoms started suddenly in my elbows after I had done some intensive work with my arms (coincidentally?). My mom took me to the doctor, who insisted it was tendonitis. The prescription? Rest, and ice. It didn't help, the pain worsened. I returned to the doctor and they said, "keep trying." Gradually the range of motion in my elbows decreased. It got to the point where I couldn't extend my arms beyond a 90 degree angle. It was excruciating to wash my hair, my mom brushed my hair for me. A dear friend in high school helped me put my book and my heavy sports bag into my locker. My joints were swollen and painful to the touch; it was hard to sleep at night because of the pain. The pain, stiffness, and swelling spread to my knees, wrists, and ankles. One day at soccer practiced we were instructed to juggle a ball on our knee. The ball hit my leg like a brick--BAM, BAM, BAM--I burst into tears, told a friend to tell my coach I couldn't play anymore, and hop-skipped out of practice. At home I told my mom I needed to go back to the doctor. A single-mother raising two school-aged kids and working full-time, she couldn't come to the appointment with me. She would alter apologize for "throwing me to the wolves." At the doctor's office I was poked, prodded, told I was fine. I begged the doctor, "can't you do some kind of scan to find the problem?" She insisted it wouldn't help. That's when I lost it. I burst into tears. I yelled at her, "please, it hurts so bad and no one is doing anything about it!" Finally, after a few more tears, she ordered an x-ray. Of course, that came back negative. However, I was lucky enough that she referred me to a rheumatologist. After blood tests, I was told I tested negative for Rheumatoid factor and positive for Lupus factor. The tests were wrong, my doctor concluded. I showed all the classic symptoms of arthritis without the symptoms of lupus. That's when I was finally diagnosed. After a few months, I had some improvement with a variety of medication, and dramatic improvement in my elbows with steroid injections. As many of you know, though, steroid injections are not a long-term solution, as they enlarge the heart muscle and lead to even worse problems (imagine that). Finally, just one year after I received my diagnosis, my doctor introduced me to Enbrel, and it has changed my life. On Enbrel, I am almost normal! Who knew how exciting that could be! I've been there and back, and it's great to be back.
The moral of the story is, don't ever, ever give up. Do your own research, try alternative medicine, find a new doctor, believe in yourself! Medicine is not a perfect science, and arthritis is not a perfect disease. If you're in pain, there's a problem--how can a doctor tell you there isn't? I hope that all of you struggling will be encouraged by my story and that you will get the help you need. Best wishes.
Well said. I'm glad you're feeling better!Hi Pegasus, just thought I'd say that your story was interesting to read, especially as there are some similarities to my diagnosis at 14. Their initial opinion was that my pain was due to sports injuries and growing pains, it was so frustrating but we kept pushing for more appointments until someone actually did tests and diagnosed me straight away. I'm 23 now too, I just started Enbrel 7 weeks ago and I'm hoping it will work wonders for me.
You're right about not giving up. These people have pain and even if the doctors find it difficult to decide on a solid diagnosis, the symptoms are still there and need treating.
Best wishes, Moonie
Great story Pegasus. A SUCCESS STORY. I am sooooooooo glad that Enbrel worked for you. I think your story can help so many that are having trouble getting a diagnosisI wanted to put in my two cents. I totally agree with Pegasus....it is very important to do your own research and figure out lots of things for yourself. I had symptoms of RA since I was 18 and I too was told that it was simply that I was sleeping funny or that I was typing strange on my computer. I brushed it off because the doctor had seemed to brush it off, but the pains were so totally foreign that I went back again a few years later....I basically also had to tell the doctor that this wasn't normal and could she please do a blood test or something on me...when it came back positive for rheumatoid factor it was almost like they were surprised.
I have also had to do all of my own research about links between things, such as food allergies, which I have found has a big correlation, and has helped me. There are so many foods that I can't eat now, but I feel much better. The doctors never informed me of any of this. I also have a great naturopath, something which I think all Ra patients should explore!
Brit