I refused to take my last rheumatologist’s diagnosis lying down. A little over a year ago I woke up in pain. It felt like the flu only with one symptom; my joints ached. I walked around for two weeks having to hold onto things for support and spent a lot of time in bed. It seemed the only thing I could do that lessened the pain. My whole body felt as if I had been severally beaten and as if I was bruised from head to toe.
A few months before I had tested positive for systematic scleroderma, polymyositis and mixed connective tissue disease. I was told, however, not to worry. Like many people who test positive I didn’t actually have the diseases. As long as they never activated I was safe from possibly life threatening illnesses; only in the most extreme cases can it kill you.
After two weeks of watching me convince myself it was old injuries acting up my friend beggared me into going to the doctor. Going to my family physician I explained what was going on and why I wasn’t worried. An old sports injury, a twisted pelvis, tendonitis, and a host of other previous complaints explained it all I told her.
She gave me a pitying look and told me she was convinced I had RA. She wanted me to go back to the rhuematologist I had seen when I was first tested positive for the other ANA’s.
So I did.
He wasn’t impressed. After returning once every three months for about six months he finally gave me his diagnosis; fibromyalgia.
I was seriously pissed.
I tested positive for three ANA’s and showed symptoms of RA but I had a make believe disease? Oh, I’m sure sufferers of it will tell me it’s real but I highly doubt it. There is currently no proof it exists. It’s all theory. I don’t trust theory when it comes to my health. It also doesn’t help that I know people who were diagnosed with it a decade ago who found out that there was an underlying problem for their pain. One of whom now requires surgery.
So after being told to exercise and that the changes to my skin color were a result of ‘growing old’ I tossed the doctor aside. I went back to my family doctor and told her what happened. She gave me a plan of attack. She wanted to treat it as if it was RA. So lots of exercise especially when it hurts the worse. When we went on our cruise she insisted I swim everyday. She also subscribed me some mild pain meds to take as needed.
Here we are a little over a year after I first went to the doctor. I’m in pain almost everyday. My level of pain is often a seven. Periods of inactivity are dreadful. I know to bring a cane with me if I’m going to be on a plane or in a car for many hours. Every morning I wake up stiff and feeling bruised but after an hour or two it goes away. No more lazing in bed for me!
When we moved I got a referral to a new rhuematologist an hour and a half away.
I did not want the diagnosis of fibromyalgia on my medical record. There are some doctors out there who won’t bother looking beyond that. It was something I felt I couldn’t risk. I explained my concerns and he reran the tests.
I have RA.
I was surprised I half expected him to tell me fibromyalgia again. I wouldn’t have been happy but if my second opinion also diagnosed me with it there wasn’t much I could do. Part of my surprise was that I had been told previously that I didn’t test positive for it. It turns out that about 25% of RA patients don’t. I certainly hadn’t known that.
Luckily because we caught it early (within the first two years of symptoms). I can work on exercising in a way that will reduce the joint damage that it can cause in sever cases. At least that’s the hope but all the research I’ve done says the same thing for RA; lots of low impact exercise.
As I was leaving his office I said to him with a laugh, “At least you didn’t tell me fibromyalgia”.
He off handily remarked “No, I believe you’re in pain.”