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.

Fibromyalgia Suuuucccckksss

Another week gone by and no posting. AH!

In truth, I haven’t been blogging as much due to my hand pain… which I’ve just found out is fibromyalgia after months of complaining of hand pain and pain in the hips, inner knees, neck, etc, etc, etc. I think part of the problem is I tend to see my rheumy and then her NP and then her again and so forth. I also think that my rheumy, while awesome, has some selective hearing in that she hears the complaints she thinks are vital to address and ignores the others. Kathy, her NP, is a little better at looking at the things I feel are important. I also feel like we tend to get along better and, as the wife of someone with chronic pains, she seems to understand me more.

YAY!

So I met with her on Monday to evaluate what was going on with me after a note I sent to my rheumy regarding my latest health issues and huge amount of pain. One of the things I’ve learned about Kathy is that she also appreciates my experience with my illness and so if I bring in evidence – a picture, notes, etc – she is more apt to look at them. I spent Sunday night writing up a two page list of what was going on with me, highlighting the most important things to me first. She took the time to read, highlight, and ask me to expand on my carefully worded bullet points. She then took it and made it a part of my medical file all without me asking her.

I seriously love this woman.

We went through a very thorough exam, where she meticulously checked my hands first before moving onto a whole body exam. I had some swelling in my left wrist and another lower body joint I don’t remember. However, she also checked the trigger/tender spots for fibro and the majority of them were tender – and some hurt so badly that I yelped. And I have a pretty good tolerance for pain.

She ordered a ton of labs to make sure that it wasn’t anything else and also had me get a kenalog shot right in the butt. My tests all came back clear, with the exception of my sed rate which is always high and my CRP which, until now, has never had a value attached to it for me.

I also got some gabapentin to start taking. I was nervous about this med at the beginning because I had done some research for a friend and her daughter on it. But now I definitely have different thoughts. I’m only taking it at bedtime for now and while I feel that it’s helping I a) can’t super tell if it’s helping because then I go to bed and am not using my hands and such, and b) still am waking up very groggy to the point where I’m tripping over myself and basically am asleep while trying to put myself together to drive the boyfriend to work and whatnot.

But tomorrow I will conduct an experiment. Instead of taking only 100 milligrams of gabby (my new drug street name, you like?), I’m going to also take a dose during the daytime to see how drowsy it makes me. If it is really helping my body not hurt as much, there is no place that needs to happen more than at work – where I spend the bulk of my day like friggin’ typing. Oy.

I miss my pain the way it was when I was younger. It was mainly in my lower extremities, so I learned to do more with my hands. Instead of going out to play with a swollen knee, I fell in love with trivia computer games and such things. Now even that is hard for me and it is really tough to handle. I can’t really run away from my illness the way I used to be able to. I actually have to admit that I have a disease – well, now 2 diseases – that very often cause disability. I don’t like that thought at all as a 24-year-old.

Ugh.

#Rheum Blues

Oy.

The last month being back on Enbrel is tricky for me. I have torn feelings for sure. I mean, my swelling has gone down and this is clearly awesome. I enjoy being able to move joints. But I’m still in a huge amount of pain.

I have an appointment on Monday afternoon with my rheumy’s nurse practitioner to evaluate if this pain is a flare up of my Still’s or if it is instead myofascial pain or fibromyalgia or something else.

First off, I’ve had Still’s for 19 years (well, in a month) and I have never had a flare up without intense swelling. I just haven’t. And right now, I’m not experiencing that at all… with the exception of my bum left knee which, let’s face it, swells no matter what I do.

But now I’m torn. Is this just fibro? Is is MS and I just don’t want to know so I ignore the signs? Is it something worse? Am I turning into an elephant?

UGH.

I try to act like I’m okay and just push through like I’ve always done, but Sunday was the last straw… because I missed Missy’s blessing.

I knew when I woke up that the day was going to be trouble but not wanting to disappoint family or incur the fire of a thousand suns, I got dressed up anyway. I also really wanted to be there. I love this kid.

While we were at the church and waiting for family, my body started getting worse and worse. My fatigue kept dragging me between the living world and purgatory and I was in so much pain. It was all over. My hands were the worst but my hips, my neck, my ankles – everything ached. I just couldn’t do it. It took a lot of coaxing and reassurance from the boyfriend before I felt okay to say that I needed to go home. Even then, on the ride home I was so mad at myself. I kept going between sleeping and crying the hardest I have done in a long, long time. And the day was just so shitty. Wah.

My illness and I have grown up together. We give nods to each other when the other is in control, letting us know that we are around still and not to get too comfy. I have always pushed myself to keep going – run that last mile, climb that last step, dance that last dance. Stopping grad school was hard enough, but it was a sacrifice I was willing to make to stay sane and healthier. I thought that it would really help.

But I just keep getting sicker. And now it’s starting to negatively impact the role that I will have in my niece’s life. I want so much to be there for her – to help provide some things she might not get otherwise like auntie dates to go see new movies or stopping for ice cream on the way home without telling mommy (tee hee). I want to push her to excel, to show her that no matter what she can do anything and nothing can hold her back. I want to be a role model for her.

But how can I do that if I’m not there because I’m held back by this illness? How can we stop for ice cream if I can’t drive anymore cause it hurts too much?

I’m so tired of fighting myself all the time. My body just needs to figure its shit out already for cricket’s sake. But it won’t and I know that. It’s just hard to let other people see how bad things are getting for me. I don’t want to be the center of attention and I shouldn’t be. That’s not my life and I don’t want it to be. I want to just be treated like a normal person.

I can’t just be in constant pain anymore. I can’t take it. I need a break.

On a related note: half of one of my nine remaining oxy-whatevers plus an extra dose of etodolac on a full stomach makes me not throw up and also helped me to forget about pain for a while tonight. It was still there sure, but I didn’t notice as much and I so needed that break.

Also, had a kick-ass appt with my OT today on my hands. My hands are covered in bright blue kinesio tape! And she might even use me as a case study presentation thingy. Sweeeet.