Saturday, June 1, 2013

The 729.1 on fibromyalgia and my link to Morgan Freeman

Morgan Freeman. Just saying the man's name elicits his amazing voice. I could listen to him talk for probably days without getting tired.


Well, no, I'd be terribly tired and would've fallen asleep on him but there is a huge likelihood he would fall asleep too and it's not because he's old.

Morgan Freeman, one of the most celebrated and iconic celebrities of our time, lives with fibromyalgia:

Every so often he grabs his left shoulder and winces. It hurts when he walks, when he sits still, when he rises from his couch, and when he missteps in a damp meadow. More than hurts. It seems a kind of agony, though he never mentions it. There are times when he cannot help but show this, the fallout from a car accident four years ago, in which the car he was driving flipped and rolled, leaving Freeman and a friend to be pulled from the car using the Jaws of Life. Despite surgery to repair nerve damage, he was stuck with a useless left hand. It is stiffly gripped by a compression glove most of the time to ensure that blood doesn't pool there. It is a clamp, his pain, an icy shot up a relatively useless limb. He doesn't like to show it, but there are times when he cannot help but lose himself to a world-ending grimace. It's such a large gesture, so outside the general demeanor of the man, that it feels as if he's acting. 
"It's the fibromyalgia," he says when asked. "Up and down the arm. That's where it gets so bad. Excruciating." 
This means Morgan Freeman can't pilot jets the way he used to, a hobby he took up at sixty-five. He can no longer sail as well. There was a time when he would sail by himself to the Caribbean and hide out for two, three weeks at a time. "It was complete isolation," he says. "It was the best way for me to find quiet, how I found time to read." No more. He can't trust himself on one arm. He can't drive, not a stick anyway, not the way he used to — which is to say fast, wide open, dedicated to what the car can do. And he can't ride horses as much, though once he rode every day. 
He never mentions any of it as a loss, though how could it be anything else? He never hints around about the unfairness of it. "There is a point to changes like these. I have to move on to other things, to other conceptions of myself. I play golf. I still work. And I can be pretty happy just walking the land." 
Wait. How can he play golf with a clipped wing like that? How can you swing a club when you can't lift one of your arms? 
"I play one-handed," he tells me. "I swing with my right arm." 
How does that work out for you? 
"See for yourself," he says. "I'm playing at 3:00 today."

729.1 is the diagnostic code in medicine for myalgia and mytositis. That means that Morgan Freeman and I share this terrible number on our medical charts, on medications, and on any referrals we may have to other specialists.

Many people with chronic illnesses like me end up with fibro. However, it can also start after a traumatic event or accident as it did for Morgan. His case is interesting not only because of his fame, but because fibro is an illness that affect women much more than men.

For those lucky enough to not be involved with fibro, I'll help ya out here. It gives fatigue, memory, mood and sleep issues just like most autoimmune disorders (the jury is still out on whether or not fibro is autoimmune). Fibro is believed to be caused by a malfunction in how the brain reads pain, which allows nerves to become hypersensitive causing the extra pain. In reality though, the jury is still out on that too.

Fibro isn't really one of those drugs that has a specific test, even though it kind of does. Confused yet? Let me help out here. There was recently some sort of blood test developed but it really isn't that helpful if you're already ill due to the fact that it measures cytokenes. The long standing test is a trigger point test, where parts of the body are pushed on to see if the pressure creates extra pain or if those areas are, you guessed it, tender.

One of the good things about fibro is that there are medications, such as Lyrica and gabapentin, that work to help control the excessive nerve pain. The bad news is these make you drowsy-ish so already having fatigue issues makes it a fun adventure! For me personally, Lyrica has a more waking effect but that's not how it is for everyone. Another good thing? Having fibro doesn't make it more likely you get x disease and doesn't really have complications (that we know of) other than the usual things that happen when you're in terrible pain and can't live your life the same way anymore like literally becoming dumber.

While fibro is generally recognized as a disease, there are some (asshole) doctors who don't believe it exists and will maintain that your pain is all in your head. If you get one of these docs, RUN FOR THE HILLS!!! Their ignorance of this condition will affect you and add mental stress to a body already unable to physically handle emotions well. It can actually hurt you physically if you continue to let people treat you like that, so either stand up for yourself or GTFO.

I love that for Morgan it is just a fact for him. In the interview cited above, clearly he has a loss of abilities and has had to change how he does things because of this. But he isn't bitter about it - he handles it with the same grace and composure as he handles everything.

I grew up watching Morgan in reruns of The Electric Company and in movies. I've always like him - his attitude and his demeanor. I do have to say, as I read the article about his pain I cried. About the same time that the article came out last year, I figured out I had fibro but it wasn't diagnosed until the following September. I'm used to actors wanting to keep their health private, meaning that some of the best spokespeople about diseases like RA and Lupus turn into people who don't speak out on the issues we all face. While Morgan isn't jumping around and trying to do Lyrica commercials, he certainly doesn't deny what he faces with this disease. And that makes him a damn good role model in my eyes.

1 comment:

  1. I know this post is a little older, but I just had to leave a comment on here thanking you for sharing this surprising bit of news. My dad was a huge fan of the movies Shawshank Redemption and Glory, so I've been a lifelong fan of his. Also just didn't seem surprising that he was able to handle his fibro diagnosis as well as he did. As corny as it may sound - the man really is something special.

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