some thoughts on fibromyalgia

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.

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8 Joyful Comments Shared to “some thoughts on fibromyalgia”

  1. MamaArcher on April 8th, 2010 3:48 pm

    I am sorry you have this thorn in your side. I am very thankful that you have found a good doctor and in the civilian sector. After my fiasco with the military system today, I am SOO THANKFUL you have already found a good doc! May the Lord continue to give you strength to endure.

  2. Trish on April 8th, 2010 4:19 pm

    Thank you, Kristine. I’m sorry you had such a rotten, ridiculous experience with the military clinic there today. I am thankful you finally got a call back from a NICE nurse though. Praying for your daughter ~ my youngest son has asthma and allergies pretty badly, and we’ve done the antibiotics+steroids+breathing treatments frequently since he was 6 weeks old. I can completely empathize. If you move to LRAFB before your hubby’s retirement, I can recommend a couple of doctors. I’d love to have you guys nearby! :)

  3. carlyn on April 8th, 2010 9:47 pm

    I read your post with tears filling my eyes … because I have walked in your footsteps. I know what it is like to hear “fibromyalgia is not a disease, it’s a copout” … not from doctors, but from family. I know the pain you write about on a personal level … much more personal than I would even like to admit at some points. Thank you for being honest and open with your story!

  4. LaRae (Walter) Longbottom on April 13th, 2010 10:49 am

    Trish- Do you remember me? Lisa (Copeman) Guy is still a very good friend of mine and we both live in Laurel. She emailed me your blog address, because I too have been diagnosed with FMG. My symptoms started on October 15, 2007 in conjunction with a bad virus. The flu symptoms went away after about 8 days, but the pain never did. Fortunately, my primary was able to diagnose it right away, but I have been down many, many roads without being able to find any real answers or long-term solutions. Would love to visit more about our struggles(the physical and emotional)! I have been married for almost 18 years to a very supportive and loving man. My husband and I have 4 children ages 16,13,11, and 9. I have been a SAHM since our first child was born. Just when all my kids were in school full-time and I was planning on seeking out a part-time job, the Lord revealed His new plan for my life. I love the saying “When we plan, God laughs”!

  5. Trish on April 13th, 2010 11:21 am

    I do, I do! I’m sending you an email….

  6. Patrick on June 1st, 2010 11:57 am

    “You don’t look sick.”

    Isn’t that pretty much what they told you some 13-14 years ago, when you went in with pain in your stomach? Whatever became of that? Oh yeah…you had appendicitis for a week-and-a-half and almost died (along with the doctor who Dad almost killed, lol).

    Doctors saying “you don’t look sick, so you must be fine” is like a mechanic saying “your car’s paint is nice and shiny, so the brakes must be working just fine!” I’m glad that you were persistent when those docs said you were fine — I don’t know if I could have taken much more of “Psycho-Mom.” ;-P

    Love ya, Mom.

  7. Trish on June 1st, 2010 2:59 pm

    LOL Ah yes, the infamous appendicitis incident. Thankfully no doctors were injured while I endured that fiasco.

    I’m sorry you had to put up with Psycho-Mom ~ aren’t you glad the pain doc knew what was going on? Who knows ~ I could’ve been Psycho-Mom for a lot longer than I was. :)

  8. Kay on June 12th, 2010 10:56 pm

    I know, first hand, what you are describing and am currently experiencing a flare-up…not as bad as it was a few weeks ago but goodness it’s enough to make you want to stay in the bed ALL day with a gentle weigh on you to soothe all of the discourse going on in my body. Our oldest was diagnosed with autism when he was two…when ppl look at the both of us they also tend to think that we look fine so nothing must be wrong…until he speaks and I can barely move a limb…I would pray neither experience on anyone…continued prayers ggod health & blessings of prosperity your way!

    Reaping In Abundance,
    Kay

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