Fibromyalgia: Is It All in Your Head?

by Jennifer Iannolo | Print This Page

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For the first 9 years after being diagnosed with fibromyalgia, I did my best to ignore and resist it, and was determined to overcome this monster that had claimed an undeserved place in my life. I’ve begun to look at it differently, however, as that initial approach clearly didn’t work.

The past year has been a roller coaster ride, and I have moved in between powerfully accepting what is so and gnashing at it like a rabid animal, angry at the sickness and all it has taken from my life. Sometimes it feels good to just be ANGRY. I didn’t sign up for this, it wasn’t in the plan, and I am going to Hate. Everything. All the time.

Funny thing, though: When I’m angry and frustrated, the pain gets worse. When the junk in my head starts running the show, or I’m confronted by something I need to deal with, the aches begin almost instantly. People can literally be a pain in my neck. And the more I pay attention to this, the clearer the correlation becomes, to the point where I’m wondering just how much of fibromyalgia is brain, and how much is body. Which triggers which?

When my former doctor told me to relax more, that I had stressed myself out, and wasn’t really sick, I wanted to punch him in the throat. Now, however, I can see that he was on to something. He didn’t have the “not really sick” part correct, but he was right about the stress.

It’s difficult to go from being a person who is extremely on top of things with a mile-a-minute mind to a foggy, lethargic-minded scatterbrain. The closest thing I can compare it to is Flowers for Algernon. Some days I worry that the fog will never leave, and I’ll be trapped in an endless cycle of notes, alarms and reminders just to get through the day; it takes high-maintenance to a whole new level.

I thought eliminating gluten was the magic bullet — those first few months were a wonder to behold. But fibromyalgia is insidious, and I stopped paying close attention to my stress levels, which have been higher than normal lately.

The last few months have been the stuff of nightmares, with pain-wracked insomnia, brain fog so bad that I forget things in an instant, even with an alarm, thinning hair, swollen limbs, and crying in every imaginable public and private place. When I think of 40+ more years of this, the tears really start spewing. There are days of hopelessness, when I wonder if I will ever achieve my goals — if I can really continue to think big when sometimes it’s my goal just to get through the day. I didn’t want to blog about it because I wanted to find some answers for myself first, rather than simply posting about the aches and pains without some kind of solution to propose.

So here is where I find myself: I’ve renewed my commitment to mastering my illness not from a place of battle, but one of strategy. Work around the illness. Create teamwork. Build a solid foundation so that even if I’m flat on my back, the show goes on. This is all the mental part. When I was riding a wave of wellness a year ago, it was easy to pay lip service to that. But now, when I’m in the thick of it, is when it really counts.

If my head can have such a significant impact on my body, then why not create an empowering context with which to frame my life — and maintain that context? On the tougher days, it is sometimes a matter of letting go and giving up the frustration minute-by-minute, but as with any muscle I exercise, I’m getting a little bit stronger and better at it every day.

What could that mean for you, if you used your mind to your advantage, looking at your illness in a new way that gives you the power to master and outsmart it?

{ 10 comments… read them below or add one }

ktag May 18, 2011 at 11:40 am

Jennifer,
Thank you so much for writing this. Our situations sound very similar and when I read your post I just had to reach out.

For the past 10 months, I’ve been sick…eight of them chronically. I no longer work. My pain is often through the roof and I vacillate between acceptance and total outrage. I have been told everything from “I need to stay off the internet” to “I’m getting old” to “nothing is wrong” to most recently “I have Fibromyalgia.”

One of the physicians I am working with suspects I have Lyme disease. I you don’t know about Lyme, it can cause many of the symptoms you are referring to and, unless you work with a Lyme Literate Medical Doctor, it can be overlooked (FYI: most people who get it don’t remember being bit by a tick or get the iconic “bulls-eye” rash).

Anyway, after nine years of this, I am sure you have explored every avenue, but if not–this might be worth a look (or at least be worth a look with a different doctor). FYI: My insomnia which was unrelenting is under control now.

As to your question, about creating an empowering context. The possibility I am inventing for myself is the possibility of being peaceful and inspired (I suspect you will know that means).

If you’d like to chat, I would love to connect with you. I think we we have a lot in common.

Stay well,

Kathy Tagudin
http://www.AlterEverything.com

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Jennifer Iannolo May 27, 2011 at 7:48 pm

Kathy, thanks so much for getting in touch. This got lost in the spam filter (why doesn’t it catch the actual spam?), so I’m just seeing it. I’ve had so many tests that I can’t remember if Lyme was one of them. It’s all a blur. :) I’d love to chat, and will be in touch.

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Shaleen May 18, 2011 at 1:56 pm

I couldn’t agree more. Our body has a huge response to
stress. I get ‘yelled’ at when I don’t take care of myself. The
message is loud and clear. These days I am managing fairly well
with 8 hours of sleep, chiropractic care, and saying ‘NO’ to
people!

Reply

Heather Jacobsen September 22, 2011 at 10:29 pm

I totally, totally feel your pain, and I can’t imagine having it for so long. You say you’ve had a bunch of tests done, so presumably, your thyroid was checked, too, right? Because I was mis-diagnosed with fibromyalgia and i remember the sleepless nights, the pain, the hair loss, the weight loss… but then I found another doctor, who found out that i had a hyperactive thyroid. The symptoms are all the same. He put me on a course to fix the thyroid, and now, although i have bouts of having my thyroid hormone not in balance (and all hell breaks loose) for the most part, things are under control and I can lead a fairly normal life. Not trying to give false hope or anything, but I just thought I would mention it, since it happened to me. And the fact that I have a problem with gluten, too, is all kind of weirdly coincidental.

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Jennifer Iannolo September 22, 2011 at 10:41 pm

Hi Heather! We’ve been monitoring the thyroid, but I haven’t tested it in the last year, so that will be in the next round. Thankfully I’m feeling great these days due to all the changes I’ve implemented (posts coming on that), but still need to work on the hair thang. Annoying. :) Thanks for sharing what’s happening with you — so much of this is interconnected.

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Heather Jacobsen September 24, 2011 at 3:47 pm

My thyroid was first too low, then too high, but I know have been on what feels like the proper dosage (or close to it) for the past month, and guess what! My hair is thicker and stronger. No more scary clumps in the shower drain. :)

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Heather Jacobsen September 24, 2011 at 3:48 pm

P.S. can’t wait to hear the posts on how you’re feeling great!

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Cort April 13, 2012 at 10:25 am

I have CFS and I love the idea of ‘mastering your illness’, creating teamwork and reducing stress triggers that activate or exacerbate my symptoms – resisting, pushing down, attempting to ignored symptoms causes them to persist more…yet we don’t want to give into them either….a tricky road……..thanks for the blog and the site…I just found it 

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L K Guzzi April 14, 2012 at 2:45 pm

Hi Jennifer,

I stumbled upon your blog while looking for gluten free tours in Italy. What a perfect place to land! I think you are right, inner strength and the track we play in our mind is so much more powerful than I ever realized.  Since I began my own healing journey I have improved my mind as well as my body (and what I eat, of course!)  A book that has absolutely changed my life is Louise L Hay, You Can Heal Your Life. I recommend it to anyone looking for a new view of the world! 

Sincerely,

Lauren

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Kristin Stellema July 13, 2012 at 9:12 pm

You definitely have the right idea  – consistency.  That’s one of the worst things the fibro beast has bestowed is lack of consistency due to variations on physical and mental states.  I love your blog about fibro being a day on a roller coaster.  It is a great way to explain to others who just don’t get it.  Thank you for sharing!

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