By Donna Gregory Burch
A few days ago, ProHealth's fibromyalgia editor Cindy Leyland asked me to contribute to her article, "If I could give anything to people living with fibromyalgia, it would be…" When I read her email, I immediately responded back, "You know I could write an entire article on that, right?"
There are so many things I wish for my fellow fibro warriors: lots of money so they can afford the medical care they need (including non-pharmacological treatments like massage and acupuncture); a warm, sunny locale for better healing; a chef to cook super-healthy and delicious food; a maid to keep the house clean; an assistant to run all those errands we never have the energy to get done.
All of these are really just pipe dreams. Most of us will never be able to afford them.
But some of my wishes are attainable. If I could give anything to my fellow fibro warriors, it would be…
….a good doctor who is patient and open-minded.
It can be difficult to find a good doctor because fibromyalgia patients don't fit the standard 15-minute office visit scenario of step 1. diagnose the problem and step 2. prescribe a drug to fix said problem. Although there are certain drugs approved for the treatment of fibro, they don't work very well for most of us.
When the standard pharmaceuticals fail, my wish is for all of my fellow fibro warriors to have doctors who won't give up and who are open to experimenting with less conventional treatments like low-dose naltrexone, cannabis, memantine, antivirals and others.
….the ability to channel your inner detective.
Once diagnosed, too many of my fellow fibro warriors stop looking for answers. Their focus shifts to managing symptoms because their doctors have told them there is no cure for fibro. I don't believe that!
I've always thought that if we can get to the source of our symptoms, then recovery is possible. My wish is for everyone with fibromyalgia to stop accepting that label and resigning themselves to a life of pain and exhaustion. Keep looking for the underlying cause(s) of your symptoms! There are many things that can cause fibromyalgia symptoms, such as undiagnosed infections like chronic Lyme, mold exposure, structural issues within the body, heavy metal toxicity, food sensitivities, mitochondrial dysfunction, thyroid disorders, breast implant illness, antibiotic damage, etc.
Based on the results of one Canadian study, the chances are good that you don't even have fibromyalgia at all! Misdiagnosis is extremely common in our community.
I believe fibromyalgia symptoms are the result of a deeper problem within the body. If you can uncover the source of the problem(s) and treat that, then maybe recovery is possible.
….the strength to stand up for yourself and be your own advocate.
Although fibromyalgia has been recognized for decades, many still think of it as a wastebasket diagnosis. Because of that, you're likely to encounter people who think fibromyalgia is a fake illness.
If your physician, family or friends have accused you of being a hypochondriac or exaggerating your symptoms, it's time to re-evaluate those relationships. My wish is for all of my fellow fibro warriors to find the strength and self-respect to walk away from the people in their lives who don't believe in them, or if that's not possible, at least limit contact with them.
Being sick is stressful enough without feeling the betrayal of those closest to you.
….the ability to celebrate small victories.
When chronic illness strikes, we have to redefine what we think of as success. Because we now have limitations, we can no longer gauge our self-worth based on how well we perform at work or the stuff we own.
Instead, we need to learn to celebrate the small victories. We got out of the bed before 9 a.m.! We made a dinner that didn't come from a can! We walked to the mailbox and back! We watched our grandchild for an hour while their mom did errands!
In our former lives, these tasks may have seemed routine, but they can feel like major achievements when every ounce of energy has been sucked out of your very being. My wish is for all of my fellow fibro warriors to learn to be patient with their broken bodies and give themselves a pat on the back for making it through each day. We are called fibro warriors for a reason!
….an endless supply of hope.
If I let it sink in that the rest of my life may be spent in chronic pain, I very well may jump off that tall bridge near my house. What keeps me going every day is hope. Hope that I will eventually put together the right combination of treatments and get my life back. Hope that one day I'll be able to compete in 5Ks again. Or travel to see my out-of-state family members. Or just go to the grocery store without spending the rest of the day on the sofa.
My wish is for my fellow fibro warriors to never lose hope. Sometimes scientific discoveries happen out of the blue. We could wake up next week with news that researchers have figured out the cause of fibromyalgia and that a cure is not that far away. It could happen. Let's hope.
Now it's your turn: If you could give anything to people with fibromyalgia, what would it be? Share in the comments!
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.