Monday, November 23, 2009


Cold Spring, NY
Diagnosed with Fibromyalgia at age 36
How has your condition impacted you?  I discovered I had fibromyalgia when I went to see a rheumatologist for a persistent pain in my hip.  My GP thought it might be rheumatoid arthritis, and she wanted a second opinion from a specialist. 

Turns out the hip pain was a soon-gone case of bursitis, but while on the examining table, the rheumatologist touched pressure points in certain places.  The pain was so intense, I burst into tears and begged him to stop.  Apparently there are close to 20 different pressure points to test for fibromyalgia; we stopped after 7 or 8, because it was so obviously positive.  Since the diagnosis, I've had to cut way back on exercising -- repetitive motion and high-impact activities only aggravate it.  I've tried swimming, but because the FM also makes me extremely low energy, combined with chronic depression, sometimes I quite literally can't get out of bed. Yoga is a good compromise; it gets my muscles moving, and is calming as well.

What would you like other people to know about Fibromyalgia?  Chronic, invisible illnesses need patience and understanding, from ourselves as well as our families and friends.  It's the same with depression.  It's not something you can snap out of; there's no Magic Pill that will make FM, RA, or any other autoimmune disease vanish in 10 days.  There are treatments, yes, but they have side effects, and they don't always work.  And often with fatigue, people think you're just avoiding things, checking out -- but the wave of tiredness that sweeps over the body is just that, a wave.  It can bring a body to its knees. Add to that, the pain. Tap me on my arm, and it might hurt for a good five minutes.  I am not a wuss.  It's not me being weak.  It just is.

What would you want to tell someone who is recently diagnosed with Fibromyalgia? There are some people who, once they are diagnosed with a chronic condition, embrace it as a defining feature, and it becomes who they are.  I would advise against this.  You're still alive.  That said, definitely treat it as best you can, and get the help you need, be it changing your diet, trying a new medicine, or seeking psychological counseling to help cope with the fears and stresses of being sick all the time.  I waited years before admitting I needed to face it, though I still don't talk about it much, and I try not to become preoccupied with it.  But I am more aware of it, and more respectful of how serious it is.  Just listen to your body.  If you need to lie down, lie down, and don't feel guilty about it.  If someone is giving you a hard time, flood them with links and information; this is very real.  And frankly, it is what it is.  And it can, and will, be OK.

Thank you so much Jennifer!

NOTE: While Fibromyalgia is not technically considered an autoimmune disease, I will include it in my project as it is definitely an "invisible illness" with a lot of symptoms that are very similar to many autoimmune diseases, including chronic pain and fatigue.   -Jodi


susan sabo photography said...

even though J is a close friend, i never knew this much about her condition. great advice on the 3rd question. i've found that to be so true no matter what someone is diagnosed with; when i was diagnosed with GAD, i went to some discussion boards and found just those kind of people. it literally defined them; it's all they could concentrate on or talk about. i quickly left and just accepted that although it was a part of who i am, it most definitely was all that who i am.

Sarah said...

She's a smart coookie.

And pretty much kicks ass. :-)

Great job capturing her strenght, Jodi!

Leslie F. Miller said...

Well, Jen is a great person; this is true. But Fibro is a YMMV condition. For many people, an anti-inflammatory diet low in carbohydrates helps, and so does exercise. Is it going to vanish for anyone in ten days? Of course not. But I bet you can reduce your symptoms—and make yourself feel better—if you give it a good one or two months of daily exercise and continuous clean eating.

I say this as a friend and as a person who has, several times, received a diagnosis of fibromyalgia as well as a diagnosis of depression. And when I do what's best for me, I feel better in a matter of weeks.

It gets easier by the day, too.

Good luck, and lots and lots of love.

susan sabo photography said...

oops, typo. most definitely NOT all that who i am.

jennifer konig said...

jodi, thank you for this! and thank you for this project -- it's amazing, and incredibly important. xoxo

Lolabellaquin said...

Jodi, Thanks for including someone with fibromyalgia. It so often does coexist with autoimmune diseases and can have varied implications for many people. The photo is great. Jennifer you look awesome!

Michelle said...

I love your advice, Jennifer!

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