browser life

One of the things I talked with my primary care doc about this week was how half the medical profession and most insurance companies don't have a clue when it comes to fibromyalgia secondary to autoimmune disease. I've been thinking about it and realize there may be some regular readers of this blog who only know fibromyalgia from what little has been mentioned about it in the media, and a lot of those stories and articles are misleading. So I'll do my best to describe what this illness is like from the viewpoint of someone who has it, and in particular explain that mysterious phenomenon called a flare.

Fibromyalgia from what I have been able to determine is a disorder of the neurotransmitters in the brain. It's like trying to drive a car with a short in the wires.....you might still be able to drive, but what exactly will happen during the drive is highly unpredictable. A person with mild fibromyalgia and no co-existing illness might have occasional unrefreshing sleep, occasional mild pain after exertion, and otherwise feel fine. Someone with severe fibromyalgia, on the other hand, might be in such agony that they cannot be touched, so fatigued that they are bedridden, and may suffer from a variety of symptoms such as blood pressure irregularities, allodynia, multiple chemical sensitivities, chronic migraines, sleep disorders and vertigo to name a few. And if you think severe fibromyalgia sounds complicated, try having it secondary to other diseases such as rheumatoid arthritis, lupus, MS or other autoimmune dysfunction.

I have fibromyalgia secondary to Sjogren's syndrome. Basically, it's like taking my Sjogren's symptoms and amplifying them to the power of ten. So if Sjogren's is causing pain and stiffness in, say, my knees, the pain is way out of proportion to the cause of the problem, and not only that, the pain will spread to areas not affected by Sjogren's. I suspect the severe autoimmune fatigue I experience is also being amplified by the fibro. I picture the pain signals in my body running around crazily with megaphones like Ty Pennington on "Extreme Makeover: Home Edition".

I have a progressive form of Sjogren's and can exacerbate my condition by doing too much or not taking proper care of myself. An exacerbation can be permanent, or I may improve but not go completely back to the state of health I was in prior to the exacerbation. I probably won't kill myself by overdoing it, but I certainly run the risk of becoming bedridden, so I do have to take this illness seriously whether I want to or not.

Fibromyalgia in itself is not a degenerative disease, but it does feature flares. A flare occurs when I tax my body beyond its comfort level and it responds with an uncontrolled increase in pain, fatigue and other symptoms. While not potentially permanent like a Sjogren's exacerbation, it feels horrible enough to seem endless. It's ironic that while Sjogren's is the more serious of the two, it's the fibromyalgia that is the most painful.

Here's an example of how easily a flare can happen. Yesterday, Dan told me that a friend of ours would be coming by so that he could go play tennis. I realized to my horror that the house had not been dusted since April. Knowing that heavy cleaning with the furniture polish would land me on my tuckus, I opted instead to run the feather duster around the living room to make it a little more presentable. I no sooner cleaned a cobweb off the celing fan when I developed back spasms. I dusted a few more items and then took a break. I sorted some papers and magazines for a couple of hours sitting on the couch. Then I went back to dusting the living room. While doing so, the dust in the air made me cough, which made the muscles in my chest hurt. And then I began to sneeze, which gave me neck spasms. Oh, and my hands hurt from grasping the feather duster and picking things up to dust them. By bedtime two hours later, the pain had spread all the way down both legs and from the hands all the way up the arms to the shoulders. Basically, my entire body was screaming. If I had gone to bed without doing something for the pain, it would have lasted into today and possibly more days before fading away. I had to take my emergency pain medication in order to go to sleep. Honestly, if the average person had hurt like this, they'd be in the emergency room demanding morphine. Today, I am still a bit sore, and my muscles are twitchy, but I have for the most part managed to avoid a lengthy flare thanks to that medication.

Unfortunately, it seems to take less and less lately to cause a flare, and sometimes, I don't even realize I'm overdoing it until the next day when I can't move, and then the flare has set in, and pain medicine won't stop it. And then sometimes I get so frustrated with the limits on my life that I just say to hell with the consequences and pay for it later. I must admit I'm more likely to overdo it having fun than overdo it with tasks I don't enjoy. That's because I hurt every single day of my life, and I tolerate the pain much more easily when it's the result of having a good time.

I get asked from time to time what fibromyalgia pain feels like. I have two analogies for this because most people can relate to one or the other. One is to think of a migraine and imagine that migraine pain from head to toe. This is only helpful for people who have had migraines of course. The other analogy is to imagine a horrible case of the flu, the kind that causes deep bodywide aching, and imagine that flu never going away.

One could say I have a flair for flares.