Being diagnosed with anything can make you suddenly question what your future holds. A fibromyalgia diagnosis comes with a slew of stereo-types depicting helpless and exhausted misery. Making matters worse, your diagnosis usually comes at a time when your symptoms are at their very worst — perhaps the worst they’ll ever be.
When I was finally diagnosed with fibromyalgia, my hands were in so much pain that I could barely type on my computer for more than a couple minutes before my fingers curled and cramped-up from severe spasms.
My wrists were so weak from pain, I couldn’t lift a saucepan off the stove.
When I couldn’t even turn the knob on the front door to my own home is when I demanded a new doctor — and she is the one who looked at my entire being as one big picture, put me on muscle relaxants, and gave me my life back.
It’s crucial to push aside the stereotypes of this mysterious condition. It’s crucial to ignore the most depressing blog posts you can find on daily life with this condition. You must create your own future with this disease, because so many things are still possible despite all the negativity, ste-reotypes, and worst-case scenarios.
1. Managing and maintaining a healthy weight.
It’s commonly stated on fibromyalgia websites that a weight-gain of about 30 pounds is expected. But a diagnosis of fibromyalgia alone does not mean you gain weight. The diagnosis can lead to certain behaviors and mentalities that can cause weight gain.
Like, believing you can’t do certain things.
If you suddenly believe that all forms of exercise are off-limits to you just because you have fibromyalgia, you simply haven’t tried hard enough to find what works for you.
If you are in so much pain every single day that you can’t get up and walk, I would highly recommend taking a much closer look at your nutrition, your overall lifestyle (stress-inducing work or activity, late nights, alcohol, cigarettes, and nutrition), and making it your number-one goal to determine what habits or activities trigger the biggest flare-ups for you.
If you’ve given up on your pre-diagnosis exercise choices because they cause too much pain, it’s time to consider some new options. (Believe me, I’ve been there, too: I used to be a powerlifter!)
Walking is one of the easiest, most gentle ways to burn calories and body fat. A steady, lower heart rate actually burns more body fat than glucose, unlike sustained aerobics like jogging. Find a pair of shoes your feet love, and walk. Slow and steady wins the race.
Again, look at what you’re eating. A diagnosis of fibromyalgia will likely mean you are burning fewer calories if you used to be extremely active, but your calorie and nutrition intake should adjust according to your new activity level. If you’ve gotten away with eating processed junk food for years because you used to exercise so much, now’s the time for a little self-reflection and honesty.
Strive for a mostly “clean” diet of real food and stay active to help avoid excessive weight-gain (or any weight-gain at all). Let fibromyalgia be your motivation to care more about how you treat your body.
2. Sustaining a fulfilling career.
So many fibromyalgia stories and websites depict fibromyalgia patients as doomed to lying in bed all day. If this is the case for you when you’re diagnosed, it’s truly time to look closely at your overall lifestyle.
First: Is your current job or career something that’s conducive to your fibromyalgia needs?
Prior to my diagnosis, in addition to being a writer, I was a personal trainer, a power-yoga instructor, and a bartender (a very lousy bartender, to be precise). All of these things were contributing significantly to my tremendous pain and severe exhaustion.
Leaving those sources of income behind and committing fully to my career as a writer meant I was choosing a lifestyle that matched my physical needs as a person with fibromyalgia.
Lady Gaga, on the other hand, is probably going to suffer and struggle immensely (and far more than she has to) until she leaves stardom behind. Personally, I think it’s obvious that her body is shouting: “I do not appreciate this intense and stressful performance lifestyle!”
Do I miss teaching yoga? You bet. But giving up yoga means that I feel really good…great, in fact, almost every day of the year. Yoga, for me, is a major trigger for pain and exhaustion. Embracing this fact means I have plenty of energy and strength to pursue other skills and passions.
3. Pregnancy and motherhood.
When I was diagnosed, I was just a few months away from my wedding day. My husband and I had spoken seriously and with certainty that we wanted to have children — but that was many months before my diagnosis.
The moment my new doctor said: “You have fibromyalgia,” you can bet that one of the first questions in my head was: “Can I still have children? Pregnancy? Motherhood?”
Before I even asked this aloud, she said: “You can absolutely have children. Don’t let this stop you.”
And she went on to explain that how I cared for myself, how I man-aged my energy and respected my limits would be the determining factor in how this condition impacts every other part of my life — like being a mom.
During my first pregnancy, I absolutely worried about what would happen after my daughter was born.
How often would I have an exhaustion flare-up and need a friend to help me care for her? Would I be able to play and roll around on the floor if my pain flared-up?
I’m so grateful to report that I’ve only had one real flare-up since the birth of my first child (who is now 3 years old, and she has a baby sister who is 7 months old). The flare-up was intense pain in my wrists and forearms and the trigger took me two months to figure out the cause of.
The trigger of my postpartum flare-up was the hormonal birth control my obstetrician-gynecologist convinced me to start after my first daughter was born. I was wrapping my hands in ice and ace-bandages for as much of the day as possible, in pain just to pick her up and feed her. And I was maxing out on my muscle relaxant dose, which felt almost completely ineffective.
Within one week of having the implantable birth control removed, my pain levels returned to normal. My personal “normal” is no “long-lasting pain” unless I do stupid things I know my bones and muscles can’t tolerate (like gardening, or push-ups, or yoga, etc.).
The point is that I didn’t just give up and accept that picking up my newborn daughter was going to be a painful experience and always would be. I investigated until I was able to get back to my maintenance level.
I can carry my child in a hiking backpack through the woods on a daily basis, and on the same day, spend 40 minutes walking on my treadmill, too. I can roll on the floor. Build forts. Play at the playground (but I definitely have to pass on the monkey-bars.)
I can even do some jumping at the trampoline park. I can be the kind of mom I want to be — mostly — and I can take part in all the silly activities and daily needs of being a mom.
Don’t let any one website or stereotype or pamphlet determine your fate with this disease. Create your own future. Make self-care a priority. Learn about the limits of your own body. Find what you need in order to live your life.
Ginger Vieira has lived with Type 1 diabetes and Celiac disease since 1999, and fibromyalgia since 2014. She is the author of Pregnancy with Type 1 Diabetes & Dealing with Diabetes Burnout & Emotional Eating with Diabetes & Your Diabetes Science Experiment. Ginger creates content regularly for Diabetes Strong, Healthline, HealthCentral, DiabetesDaily, EverydayHealth and her YouTube channel. Her background includes a B.S. in professional writing, certifications in cognitive coaching, Ashtanga yoga, and personal training,with several records in drug-free powerlifting. She lives in Vermont with her husband, their two daughters, and their dog, Pedro.