Fibro Warrior – Stephanie

Today I’m interviewing Fibro Warrior Stephanie Myers of Northeast Ohio. She was diagnosed with Fibromyalgia in December of 2009, at the age of 30. She is a former urban legal minion, who is now disabled and passes the days as a reluctant suburban housewife. She is a twice-married mother of three children – an aspiring diva, a Jedi, and an adopted stepson, from her first marriage, with special needs.

What lead up to your diagnosis (symptoms, dr visits, etc)?
My symptoms began following a febrile illness in 2005. I was admitted to the hospital for a week with a 104 fever, pain, and rigors. They never found any cause. In the months and years leading up to my diagnosis, I was seeing my doctor on almost a monthly basis for a variety of curious symptoms that led nowhere and the only thing showing up in my blood work was an elevated CRP and sed rate. The rheumatologist who diagnosed my fibromyalgia in 2009 said that these inflammation numbers were not indicative of any specific disease but definitely too high for my age. My doctors suggest that the Fibromyalgia is related to that nonspecific viral infection.

What was your life like at the time you were diagnosed?
At the time of diagnosis, I was struggling to keep up a full-time work load as a legal assistant. I had been re-married for a little over a year and my children were 13, 8 and 6.

How did your family initially handle your illness?
I had been suffering with symptoms of widespread pain and debilitating fatigue for years before my diagnosis. I always did what mothers do, put everyone ahead of myself. So my diagnosis really meant changing that and distributing responsibilities more evenly with my family.

What do you feel is the most challenging aspect of Fibro?
That people write it off as a made up disease. I usually chose to blame symptoms on other diagnoses I have since developed which usually gets an understanding nod, where placing blame on Fibro has some warranted eye rolls.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have since been diagnosed with scleroderma, gastroparesis, bipolar/II with depression, post traumatic stress disorder, insomnia and autonomic dysfunction.

What (if anything) have you found/ done that has improved your symptoms?
Managing stress is crucial for managing my fibro symptoms. There is a lot of self-care involved. Whether it’s just putting in my earbuds and shutting off the rest of the world or working out to the point of exhaustion. It took me a really long time to figure out the exercise part.

What did you figure out about exercise?
I used to find myself in so much pain that I thought the notion of exercise was ridiculous. How on Earth was I supposed to work out when just existing hurts? lol. My rheumy explained that exercise would help my body release natural endorphin that ​would alleviate that pain. Getting going was the hardest part. I had to start in a warm water therapy pool just to work my way to land. But once I got going, I figured out that if I went to the gym after dinner and did a two hour workout with strength training, cardio, stretching and a swim afterwards that I was so physically exhausted that I would actually sleep and with the endorphines doing their thing I actually slept without tossing and turning. With better sleep, I felt a ton better. That was me figuring out the exercise portion.

How open are you with friends & family about your illness & symptoms?
In my first marriage, I struggled greatly with sharing anything about what I was going through. It was a very abusive relationship and my husband was an alcoholic. This meant that anything that pulled attention away from him resulted in attention seeking behavior that I didn’t have the energy to deal with. This meant keeping my own stuff on the back burner. As my stress and symptoms escalated I knew there would be no surviving the marriage as it was and after failed attempts at marriage counseling, it ended. I made a commitment to myself then to never hide who I was or what was really going on in my life and so now, I am very open and honest with my family and friends in my triumphs and trials.

Do you blog about your illness? If so, what inspired you to do so?
Yes. It happened naturally because I have been blogging about my life for the last 10 years. I struggled with it at first, but as time progressed, I’ve learned that while my illness doesn’t define me, it is as much a part of my story as anything else. I want people to know they’re not alone. That you can have a life worth living despite your limitations.

What is the best advice you’ve received about Fibromyalgia?
Learning about and putting SPOON THEORY into practice

What was the worst advice that you followed?
Avoiding high fructose corn syrup. It’s in just about EVERYTHING and while I find that avoiding a lot of processed foods helps my symptom management, the high fructose corn syrup thing made absolutely no difference in my symptoms.

What is your favorite way to cope with your life as a spoonie?
A bath, a good book or blogging with my feet up.

What is it that inspires you to keep going, despite your illness?
My friends and family. They’re my inspiration for everything.

What is one thing you’ve learned about yourself since your diagnosis?
I am a whole hell of a lot stronger than I ever imagined I was.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
You have a choice of which feelings you ride. Even when you’re in pain and tired, you can choose not to ride those feelings. Ride the good ones, otherwise it can become all-consuming.

Is there anything else you’d like the readers to know?
If you’re going through hell, keep going. There are doctors and people who “get it” and with a support system you can survive just about anything.

Now that you’ve gotten to know a bit about Stephanie, be sure to follow her blog and connect with her on Twitter.