Today is World Arthritis Day, and I am taking part in a blog carnival type of thing: World Arthritis Day 2010: Global Awareness Event hosted by the International Autoimmune Arthritis Movement (IAAM).
Every lupus patient has a different story to tell. It’s a disease that varies so much from person to person that sometimes it almost seems like a completely different disease. Is it affecting the kidneys or not? Is it causing fevers or not? Do you have rashes? Which meds are you on? Are they causing grogginess or nausea? I guess it shouldn’t be a big surprise, then, that onset stories vary immeasurably as well.
When I first got sick, I was 16 years old and had been exceedingly healthy my entire life. I didn’t have any history of any illnesses except recurrent sinus infections and the occasional cold. I was reasonably fit and within what was considered a healthy weight and BMI range.
It started with nerve pain in one half of my mouth – right along my teeth. Then that nerve pain spread to my arms and legs and suddenly the doctors were search for brain tumors and multiple sclerosis. I was bounced around from doctor to doctor: infectious disease specialists, neurologists, on and on. One psychiatrist told me it was all in my head and that there was nothing wrong with me. He gave me an antidepressant and sent me on my way chastising me about my stress levels. They figured it out eventually – but it took 6 months. One round of prednisone later, I was in “remission.”
This meant that when it flared 5 years later it was like going through the onset investigation all over again. 3 months after I caught a terrible viral bug that I never really recovered from, they finally figured out that it was my lupus acting up. Of course, they sent me though a battery of blood tests and full body scans again first.
There are a few triggers that we know can cause lupus flares like high stress levels and UV light, but what triggers initial onset is still being researched. There have been a number of reports suggesting that obesity may make it more likely to trigger an autoimmune disease like lupus, but not all experts seem to be convinced of that. I can’t say that I am either. It will be interesting to see what more research reveals. The idea of have a genetic predisposition that gets triggered (again with the elusive triggers!) also seems to be a common idea.
Onset is a scary experience – you don’t know why you’re sick, what’s happening to you, what caused it, or even if whether it’s curable. Most of the time, the people around you (doctors included!) are confused and unsure about what to tell you. Finally getting a diagnosis ends up being quite a relief but then you’re stuck trying to figure out how to carry on with the rest of your life. More research into triggers is most definitely needed.
PS: Wondering about the numbers in the title? It’s explained here: World Arthritis Day 2010: Global Awareness Event