Update & More Important Question: What can I do? | Arthritis Information

Hi, everyone. Wanted to provide a quick update and a more important question if things continue trending for me the way they have been: What can I do for people living with RA and related issues, and what can I do for the cause? It's become that important for me having lived through it for only the (hopefully forever) short period that I did.

I'm the one who was slammed with some kind of crippling, hot, swollen, symmetric migrating polyarthritis at the first of the year for almost 2 months after never having had anything like this. To sum up, seronegative, ESR of 91 at onset, positive speckled pattern antibody test, but all other bloodwork normal. The pain was very severe for about 3 weeks but lasted almost exactly 2 months. Doc gave me a 1 month Rx of doxycycline in case it was septic or from undiagnosed Lyme, and 400 mg Celebrex/day. I also am taking coconut oil, turmeric, Vitamin D3, krill oil, resveratrol, quercetin, liver extract, and garlic.

We still don't know what I had, though the docs think it was either bacterial, viral or post-viral.

Today, I got good news that my Lupus Panel was negative, including a test for antineutrophil cytoplasmic antibodies (which I was worried about, because I have sinusitis problems and was worried about Wegener's Granulomatosis).

With the exception of a little weakness and occasional fleeting mild soreness in my shoulders, that actually has worsened a little this week during this bout of sinusitis (along with a flaring of an old broken DIP finger joint injury that has flared periodically since college when I did it) it's GONE, though I'm still on 400 mg Celebrex/day and must wean from that soon.

But I'm not going to consider myself totally out of the woods until I know exactly what it is I had (though the doc says I may never know), and even then, if this was a reaction to a virus, it could be a sign that I'm PRONE to a permanent arthritis later in life.

Still, I want to thank the hosts of this board because I learned a lot at a time when I needed answers badly, and because it helped me to feel that I wasn't alone.

I still plan to visit from time to time, though I hope I won't "have to." 'Know what I mean?

But I'll go back to my first question:

What can I do? I never knew until now that, for instance, we have a local office for a heart assn, cancer assn, Komen, but no Arthritis Foundation office! I'm not just the "write-a-check" kind of activist. This issue is not getting the attention it needs and deserves! Do I burn my bra, or--LOL--burn my heating pad, or what?

Stormee,

First let me say how glad I am for you. You went through hell and managed to come through it just fine.

Your doctor is right in that you may never know what caused your condition. I happen to believe that our genetic makeup predisposes us to certain diseases. But that in and of itself is not enough. I believe that something needs to trip the switch to launch the process. Ironically, it was a bacterial infection that did it for me.......and my brother......at the same time. That's plenty enough evidence to make me believe in virus or bacteria setting off cytokines and opening the floodgates to our diseases.

But what to do? Be vocal about your experience. Create awareness. Keep on top of research. Support research.

And more than anything else, make every day a great one.