Tuesday, February 5, 2013

There are some questions about this stupid disease that I'd like to answer

I was reading an article that was linked on Facebook by one of the many fibro pages I follow. They were all cool with some of the info, but then realized the website and article were sponsored by a large brand name medication aimed at fibro sufferers. That sort of takes away from a few things. But, the first part of the article asked a few questions and I want to answer them for you. Because I like you and I think you like me and because you're reading this, so you're expecting me to write something worthwhile or at least, you know, related to fibrofuckingmyalgia.


How did your fibromyalgia begin? Suddenly or slowly?  Mine started slow. I thought I was just getting older. My teen years were spent marathon cycling around Anchorage, Alaska and whatever was within a 15 mile radius of the aforementioned city. When I left Alaska for the Always Brown Kansas (brown in the winter because it rarely snowed and brown in the summer because it was so freakin' hot), I stopped cycling. There were no bike paths in the area and I didn't feel safe riding on the side of the road. I'd also injured my knee (the first big injury) shortly before leaving Alaska, so I was still recovering.

So, as things started to break down, I thought: "I'm just getting older. Arthritis runs in my family. Oh, I suddenly feel the urge to knit and put bird feeders in my yard. YOU KIDS GET OFF MY LAWN!"

The aches and pains that came on were slow and not intense. I've had foot problems since I was pregnant with my second child (that child will be 21 years old in three days). While pregnant with him, my feet were uncomfortably hot. I rarely wore shoes. I also preferred to stand in the kitchen on the tile. I was a walking, talking, breathing, whining cliché. I was barefoot, pregnant, and in the kitchen. When I did actually wear shoes, I wore the cheap canvas things from K-Mart. (you see, kids, back in the olden days, K-Mart was like Walmart, but not quite as good. Not as bad as Big Lots, but close). So, I developed heel spurs and various -itis related issues (bursitis, tendinitis, arthritis).

In around 2003, 2004, those mild aches and pains started to become noticeable. I was pretty good friends with a divorced dad at the middle school and he would invite our family to do things with his- like a canoe trip, museums, that sort of thing. Day trips that were loads of fun for all of us. When we'd get home from these outings, I was always tired. I was always sore. But, I walked four miles a day and did 30 minutes of yoga every day. I shouldn't have felt sore from walking around the Milwaukee Art Museum.

I used to write a column for a now-long-gone website and one of my articles was a review about the terrible IMAX movie we saw at the Milwaukee Public Museum. While it was one of the funniest things I remember writing, I'm just going to share the end of it. After I said what I had to say about the movie (which was so boring that I dozed off), I said that I had to wrap things up because I was sitting at my desk with my foot in a bucket of ice because it was so sore. That was when the pain started to become noticeable and it started to interfere in my life.

I eventually had to cut my walking down from four miles to three. Then to two. I cut out the yoga. I was too sore, too tired, too worn out. When my walk dwindled down to barely a half mile, I just stopped altogether. After gaining some weight, my doctor ran some tests to make sure I didn't have anything else and then decided my thyroid numbers were "borderline enough" to adjust the dose of my thyroid pill. That helped a bit. I was ready to get out and walk again, having regained some energy. Then, March 3, 2006 (about a year after the museum visit and six or eight months of not walking), I stepped out onto my back deck and slipped on the ice, tearing my knee up (again).

That was the beginning of the three year saga that led to a total knee replacement and that knee replacement triggered a yearlong fibro flareup that was undeniably real. I had my TKR in March of 2009 and in late June 2010, I was officially diagnosed with fibro.

How long did it take to get an accurate diagnosis of fibromyalgia?  If you're still reading, then you know that serious issues started in 2004, very serious and undeniable issues in 2009. I'd say I had about four years of diagnosis problems. Looking back, I can see signs of fibro before 2004, but obviously I didn't know it was fibro back then.

What fibro treatments are working for you? I take Vicodin for pain (three 5/325 tablets at night, sometimes I take one or two in the daytime, but I don't like to and only do it if I HAVE to). And I take 30 mgs of Cyclobenzaprine a day. One 10 mg tablet in the morning and two 10mg tablets at night.

But, this past year's weather has been pure hell. The ever-changing weather (and I mean seriously changing: we had mid-50s one day and the next, we were in the single digits) has been kicking my ass six ways a day. For the most part, that mix of drugs has been working.

So, if you've read this far, I'm sorry this wasn't funnier- or at least, more entertaining. I'd dance for your amusement, but I have to go finish something I've been working on in the kitchen. It isn't a secret, but I'm not sharing photos till it is completely done and if I keep dancing for you, I'll never get it done. And you'll go blind because I'm such a terrible dancer, you'd gouge out your own eyes with a broken corkscrew to make it stop.

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