Donna Gregory Burch, founder of FedUpwithFatigue.com, recently responded to interview questions from Melissa Swanson.
Melissa: What was your life before fibro?
It was very different than it is today. I was your typical type A perfectionist. My life was mostly about work. I was editor of a rapidly-growing weekly newspaper, and with that came a lot of deadlines and stress. I loved my job, but the pace of it began to wear on me after a few years.
I admit I was bad about work/life balance, but I did have some hobbies. I liked working on home-improvement projects. I liked going to yard sales, antique stores or thrift stores and looking for deals. I love beautiful things, so I enjoyed museums and parks. I had an interest in New Age and paranormal topics (meditation, Reiki, ufology, ghosts, etc.). I love animals and have volunteered with animal-rescue groups over the years.
Melissa: When did you show your first signs and what were your first symptoms?
I had my first symptoms in 2010 following the death of my mom from lung cancer. My first noticeable symptom was severe fatigue, which wasn’t surprising given how hard I worked. I was so tired, but at the same time, it felt like my body was always in overdrive. I couldn’t relax, and I was having a hard time sleeping.
About this same time, I began having urinary urgency, which I chalked up to being hereditary because my aunts had dealt with that issue. I also had severe pain in my hands, which was diagnosed as carpal tunnel syndrome. I later found out that was a misdiagnosis.
Over the next couple of years, the pain in my hands migrated, and I began having pain throughout my body. After going to a series of doctors and being misdiagnosed several times, I was eventually diagnosed with fibromyalgia in early 2014.
Melissa: Besides fibro, what other coexisting conditions have been diagnosed?
Last summer, I found out I have chronic Lyme disease and several other tick-borne co-infections. My doctors now believe Lyme and the co-infections are the underlying causes for my fibromyalgia symptoms. I’m currently being treated for tick-borne infections, and I’m hoping my symptoms will eventually dissipate.
I also have overactive bladder, neuropathy in my feet and thyroid dysfunction – all of which are probably related to Lyme.
Melissa: How did your fibro diagnosis initially change your life?
At first, I thought I had adrenal fatigue or possibly hypothyroidism like my mom. I thought I just needed to rest and regroup. I gave up my stressful job and moved to another state. I started to take better care of myself. I slowly changed my diet. I started exercising. I meditated every day. I made all of the common lifestyle changes that you read about online, but no matter what I did, I still felt awful.
I began going to various doctors, trying to figure out what was wrong with me. Most of them thought I was depressed and tried to write me prescriptions for antidepressants, but I had suffered from depression earlier in my life, and I knew what I was feeling was NOT depression. It was a very frustrating time because my doctors and my family didn’t believe that I was sick.
Melissa: What changes have you had to make in your life?
Everything has changed. I no longer have my beloved career. I’m no longer able to work full time because I don’t have the stamina. I’m not able to take care of my home the way I used to. I’m not able to participate in many of the extracurricular activities that I used to enjoy.
Melissa: What is your life like now?
My life is very limited at this point because of the severity of my symptoms. Pretty much every decision I make now is affected by my illness in some way. Decisions are always tradeoffs. If I do XYZ, then I won’t have the energy to do ABC. Like many with chronic illness, my life revolves around treatment.
Melissa: What are your biggest battles now and how do you confront them?
Pain and fatigue are my biggest daily battles. I have always been a can-do sort of person, so it’s been a mental struggle for me to admit that I have limitations now. I still want to do all of the things that I used to do, and I tend to push myself, and then pay for it. I really struggle with pacing myself.
Melissa: What is the best/worst thing that has happened due to illness?
The best thing? I think I am a much kinder person than I was when I was healthy. I have a lot more compassion for other people, and my mindset is more service-oriented now. I am much less self-absorbed.
The worst thing? Losing my independence. I’m more dependent on others now, and I don’t like that one bit. Financially, chronic illness has been a huge drain.
Melissa: How is your relationship with your family & friends?
Prior to my Lyme diagnosis, my family didn’t really believe I was sick. When I was diagnosed with fibromyalgia, I felt vindicated because I finally had a label. I didn’t realize that so many people see fibromyalgia as a “fake” illness, and unfortunately some of the people closest to me fell into that category.
They finally accepted my illness when I had a blood test showing that I was positive for Lyme disease. It’s better now, but it’s very hurtful and stressful when your family thinks you’re a hypochondriac and lazy.
Melissa: What made you want to start a blog?
Part of it was because I didn’t have the support of my family. I needed to connect with others who were going through the same thing.
I had also become overwhelmed with the information that I found online about fibromyalgia. There are millions of products and services marketed to fibro sufferers, and it was so hard to figure out what might work and what was a rip-off.
At the time of my fibromyalgia diagnosis, I’d worked almost 20 years as a journalist. I definitely knew how to research and write about health topics, so I decided to use my skills as a journalist to help myself and others, and that’s when I founded FedUpwithFatigue.com.
Melissa: What do you wish people knew about your illness?
First, I want people to know that fibromyalgia and chronic Lyme are real! We are not fabricating our symptoms. We are not lazy. We are not trying to get sympathy.
Second, I want people to know that fibromyalgia is complicated. Despite those annoying Lyrica commercials on TV, there is no pill that fixes fibro. The fibro drugs on the market only help about one-third of people.
Third, I want people to know the medical system is failing those who are chronically ill – especially the chronic pain community. Our medical system is fantastic for broken bones and the common cold. It is a dismal failure when it comes to treating chronic conditions, like fibromyalgia and Lyme. These conditions require more than a seven-minute doctor’s visit and a prescription. They require physicians to take a holistic, systemic approach to treatment, and conventional medicine doesn’t allow for that.
Melissa: What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even seeking a diagnosis)?
I know some people are going to take what I’m about to say the wrong way, but I hope they will read my entire response before jumping to conclusions.
What I would say to someone newly diagnosed is this: Don’t accept that diagnosis. I no longer view fibromyalgia as a condition in and of itself. I see it as a collection of symptoms signaling that there’s a deeper problem.
Now, in no way am I saying fibromyalgia doesn’t exist. What we’re feeling is very real, and it’s painful, and it’s miserable, and it’s debilitating.
But what I am saying is to push yourself and your physicians to delve deeper. Don’t just accept the label of fibromyalgia. There’s a Canadian study that found up to two-thirds of people with fibromyalgia may be misdiagnosed. That’s millions of people who are probably living with conditions that could potentially be treated if they were properly diagnosed.
Our bodies are marvelous machines. They are designed to heal themselves. So, when our bodies go haywire, we need to question what’s the underlying cause for that? Don’t just accept that this is your lot in life, and there’s nothing you can do about it. Keep digging for answers!
My take has always been that if we can figure out the underlying cause for our symptoms, and treat that, then maybe we can recover. In the coming weeks, I’ll be exploring the issue of underlying causes for fibromyalgia on my blog in greater detail.
(I wrote a blog post a few months ago with other tips for those who are newly diagnosed, but it’s really relevant for anyone with fibromyalgia.)
Melissa: You are an inspiration to so many. What advice do you give to others?
Don’t rely exclusively on your physicians for answers. Do you own research! Become your own guinea pig – within reason, of course!
The truth is most physicians don’t know much of anything about fibromyalgia outside of what the Pfizer and Eli Lilly drug reps tell them. I know that sounds jaded, but the reality is fibromyalgia research is still in its infancy. We don’t know what causes it, and we don’t know how to treat it, and neither do our doctors!
Many doctors are too busy to keep up to date on the research, so don’t rely on them to know about the latest and greatest treatments. Empower yourself! Learn how to use PubMed! Sign up for fibromyalgia-related websites, like ProHealth.com and FedUpwithFatigue.com! Join a fibromyalgia support group! I promise you that your fellow fibro warriors probably know much more about your condition than your rheumatologist or neurologist ever will.
I know there are some good fibromyalgia doctors out there, but at the end of your appointment, when you walk out of that exam room, he or she is on to the next patient and probably won’t think about you again until your next appointment. YOU have to live with this condition every single day, so take an active role in your treatment plan!
And consider branching out from conventional medicine. The only progress I’ve ever made was when I worked with physicians who practiced in the areas of functional medicine and/or naturopathy. These practitioners take a more systemic approach to treatment, as I mentioned before, and they’re much more likely to work with you on identifying your underlying causes for illness versus just treating symptoms with pharmaceuticals.
Melissa: What inspires you?
My fellow fibro warriors! My mom (who also had fibromyalgia and probably Lyme disease) used to say there’s always somebody who has it worse than me. Although I’m in pain every day, I know there are others in our community who are struggling with symptoms that are much more severe than mine. Hearing their stories and struggles keeps me motivated to stay of service to the fibro and Lyme communities.
Tell me about Fed Up with Fatigue.
FedUpwithFatigue.com covers the latest news, research and helpful tips to live better with fibromyalgia, Lyme and chronic fatigue. Because of my journalism background, my content tends to focus mostly on treatments and practical information for living with chronic illness.
How did you get involved with CIB (Chronic Illness Bloggers)? What do you do as a part of CIB?
I was a big fan of CIB founder Julie Ryan’s blog, Counting My Spoons, before I started Fed Up with Fatigue. We connected as bloggers, and I was super excited when she decided to start CIB. I’ve had the opportunity to try out so many great products as a result of being a CIB member and then share them with my readers.
As a CIB member, I write about blogging on the network’s blog and help with CIB’s weekly member link share.
Where can we find you on social media?
I’m most active on Facebook and Pinterest. I’m getting ready to start posting fibro and Lyme-related videos on YouTube. You can also find me on Twitter and Instagram. I have an extremely active Facebook group called What Works for Fibromyalgia.
Melissa Swanson is a chronic pain patient, advocate, and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 16,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice." She's a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and a member of the Leaders Against Pain Action Network.
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