aka The One Where I Ramble On and On…….
In February 2006, I woke up one morning and was barely able to get out of bed. I was experiencing some major back pain. For the next 3 months I saw my Primary Care Manager (PCM) at least twice a week and went to a plethora of specialists just trying to figure out why I was in so much pain. I took some crazy-strong medications ~ mainly morphine in pill form ~ and turned into a person who my family didn’t know, and quite frankly didn’t like. Trust me, I wasn’t having the time of my life, either.
My PCM was a great guy, and he really wanted to figure out what the deal was with my back. After referring me to all kinds of specialists, who did all kinds of horrible tests and minor procedures, he decided to send me to a pain management doctor. My PCM pretty much told me he was at a loss as to what else he could do, and if the pain management doc wasn’t able to help me, he really didn’t know what else could be done.
Thankfully the pain management doc had the answers and was exactly who I needed to see. It just so happened (and I say that tongue-in-cheek because I KNOW Who orchestrated the events) that my health insurance company sent me to a pain management doctor who is one of the leading experts in the country on fibromyalgia. He took me off those crazy-strong pain killers and gave me a much milder form of medication for pain management. Within a week my back was feeling better. Not great, not completely pain free, but definitely better.
For the past 4 years I have seen my pain management doc every four to six weeks. It can be frustrating at times to sit in his waiting room for up to two hours, but this particular doc is worth the long wait. He knows what he’s talking about. He’s on the cutting edge of fibro research, and knows all of the best ways to help his fibro patients live fuller, less pain-filled lives.
Don’t believe the commercials you see on TV for that drug that is marketing itself as a fibromyalgia drug. Fibro’s not just muscle aches.
Since my diagnosis of fibromyalgia in April 2006, I have only encountered one doctor who told me he didn’t believe fibromyalgia is a real illness. This particular doctor said fibro can’t be real because there are too many discrepancies and variations from one patient to another. That’s true ~ fibro can vary widely from person to person. But that doesn’t make the illness any less real. Especially for the people who suffer with it.
It amazes me still how different one fibro sufferer can be from another. There’s no magic pill (again, ignore those TV commercials you’ve seen), there’s no one right way to handle this illness, and what works on Monday may not work on Tuesday for the very same person.
I know several others who have fibromyalgia. One lady lives virtually pain free because she cut gluten out of her diet. Another has more good days than bad because she exercises, eats only organic foods, and gets 200% of the daily recommended amounts of fresh fruits and vegetables. Another is able to somewhat curtail her pain by not eating foods with certain ingredients ~ corn, high-fructose corn syrup ~ and by taking holistic supplements.
I also know several others who have tried every suggestion under the sun ~ even going to the extreme of injecting themselves with hormones or other (legal) substances ~ and have seen no improvement at all. It can be very frustrating trying to find just the right combination of diet, exercise, and lifestyle that will reduce (or even take away) the pain of fibromyalgia.
I wrote earlier today that my brain just doesn’t seem to work as well or as quickly as it used to. There is an element of fibro fog involved, but sometimes I’m just plain ol’ scatterbrained. I lose words ~ usually nouns ~ and resort to using “stuff”, “junk”, “gobbeldygoop” and other non-descriptive words to fill in where a perfectly good noun should be.
I was a gymnast and a cheerleader for many years. So you’d think I’d be one of those people who enjoys exercising, right? Wrong. Way wrong. Exercising for me is like being put into a torture chamber. Even mild, steady stretching can wreak havoc throughout my body.
Being on the computer for extended amounts of time is also difficult. I get up and walk around quite often when I’m working on projects that require me to sit in front of my computer. Otherwise my back seizes up and I end up taking a couple of pain pills in conjunction with a couple of muscle relaxants just to be able to deal with the pain of moving. **
I know of a woman with fibro who seems to be an extremely energetic person. She has only had her diagnosis of fibro for about a year, so really she’s still learning how to deal with it in a way that works for her. The thing that continually amazes me is this woman’s online presence. She blogs frequently, and the sheer volume of her status updates on Facebook and Twitter astound me. She has even learned some internet lingo and ease in order to keep her tweets under the 140 word maximum. What has taken me 7 years to learn and figure out she has done in less than a year! And she’s not significantly younger than I am, so I can’t blame it on her being part of the computer generation, either (bummer).
Does this woman actually “suffer” from fibromyalgia? I can’t imagine why anyone would say they do if they don’t. Is her fibro any less severe or difficult than mine? Maybe, maybe not. Am I just a bigger whiner and complainer than she is? I seriously doubt it. And this is what most doctors find so disconcerting about chronic pain illnesses like fibromyalgia ~ the list of symptoms is long and wide, and their manifestations can vary greatly from person to person. Am I a bit jealous that this other lady seemingly has more energy than she knows what to do with? Perhaps. Just a tad. Not all that much. Really.
So, now that you’ve waded through this long, rambling post of my thoughts on fibromyalgia, here’s my point: don’t judge a book by its cover, and don’t judge a person’s “illness status” by their perceived energy level or how they look. I’ve been told before, many times, that I must be feeling okay because I don’t look sick. That’s right, I don’t look sick most of the time. That doesn’t mean I necessarily feel good. It simply means that I have learned how to cope, how to deal with the pain, and how to fake it through a situation or circumstance when I need to. The majority of chronic pain illness sufferers I know personally (in real life) are the same way.
** Pain pills and muscle relaxants do not effect me the same way they do an average person. I don’t get any kind of a high from them, they don’t mess up my head, and they don’t put me to sleep. The medications I take are used only on an as needed basis ~ and believe me when I tell you that if I have taken a pain pill or muscle relaxant it’s because I needed to relieve some pain or relax some muscle or muscle group. My pain management doc is very good at what he does; he’s the only doctor I see other than my PCM (not the same PCM I had in 2006, by the way, because (1) the AF moved him to another base and (2) Roger retired from the AF last June, and we now have civilian doctors). When I take a Vicodin or a Nucynta, they have the same effect on me as a regular Tylenol does on an average person. One time I asked my pain management doc if he ever worried about prescription pain medication misuse or addiction in his patients. He told me that people who have chronic pain illnesses, like fibromyalgia, rarely misuse pain medication. Most chronic pain illness sufferers just want enough relief from the pain to function in daily life on a relatively pain-reduced level.