Before my fibromyalgia diagnosis in 2014, my life was very different than it is today.
I was editor of the largest weekly newspaper in Virginia, managing a growing staff of freelance writers, photographers and graphic designers. My job was demanding, but I loved it, and I had no plans of switching careers anytime soon.
Then came 2009. The newspaper had doubled in size since I’d taken on the role of editor three years earlier, essentially doubling my workload. A long-term relationship ended. My mother was diagnosed with terminal lung cancer and passed away just a few days before Christmas.
I was never the same after that year. It’s as if some mysterious switch in my body flipped. I was always exhausted no matter how much time I took off from work or how much I slept. Over time, I began having unexplained pain throughout my body and other troubling symptoms.
I was so stressed out that one day I found myself crying in my nurse practitioner’s office. Walking out with prescriptions for Xanex and an antidepressant, I knew I needed to make some big changes in my life. I resigned my high-stress job and made the decision to move to another state. I reduced my work hours, thinking it would help me to heal and regroup.
But as the months passed, I realized something was very wrong. I didn’t know what it was, but I knew it wasn’t normal to feel so tired and achy all the time. I began to go from doctor-to-doctor, from lab-to-lab, trying to find out why I felt like the life had been sucked out of me.
Each doctor’s visit just added to my frustration. Several doctors tried to give me prescriptions for antidepressants even though I insisted I wasn’t depressed. Nothing out of the ordinary showed up in my bloodwork. After two years of too many doctors’ visits and too many tubes of blood to count, I was referred to a rheumatologist who finally put a name to the symptoms I’d been having for years: fibromyalgia.
I was ecstatic!
I finally knew what was causing me to feel like I was slogging through deep sand every day. I finally had a name to give to family and friends who had insinuated my symptoms were all in my head or had said that I should just get used to the pain because “that’s what happens when you get older.”
I naively thought that if I just took the right medication, then my health problems would be solved. I had somehow internalized all of those TV commercials that send the unspoken message, “Take our expensive medication, and you’ll be able to work in the garden and take your kids to the county fair, too, just like the actresses in our commercials.”
But that’s not what happened.
During the year following my fibromyalgia diagnosis, I tried several different medications that were supposed to relieve my symptoms. All of them caused bad side effects, and in some cases, actually made me feel worse than I did before taking them.
Two years passed, and my health was still deteriorating even though I’d done all of the right things including overhauling my diet, addressing my stress levels, adding lots of supplements and trying countless other treatments that were supposed to work but usually didn’t.
I knew my doctors were missing something.
After writing an article about Lyme disease for my local newspaper, I suspected I might have chronic Lyme because the symptoms are so similar to fibromyalgia. By that point, I’d already tested negative at least twice for Lyme, but I’d found out the standard testing used by mainstream labs like Labcorp and Quest only catches about 50% of Lyme cases. Armed with that information, I paid out of pocket for iGenex testing, which is much more accurate than standard testing.
I found out I was positive for Lyme and began treatment with the expectation that I’d make a full recovery now that my doctors and I had figured out the missing piece of the puzzle.
But again, I was disappointed.
After 15 months of taking multiple antibiotics, some of my symptoms actually had improved, but I was far from recovered.
Then, other parts of my body began falling apart. It started with lower back pain caused by a herniated disc. In 2017-18, I had surgery to remove the herniation. Three weeks post-surgery, my daily back pain returned when the disc re-bulged. It continues to hurt all day, every day.
But that isn’t the worst of it.
About six weeks after my back surgery, I woke up one day with horrible neck pain, which was unusual for me because I experienced most of my fibromyalgia/Lyme pain from the waist down.
Then the headaches started.
Every single time that I sat or stood up, I would get excruciating headaches and neck pain that left me bedridden for about nine months. It took about three months for doctors (and me basically diagnosing myself) to figure out I had a cerebrospinal fluid leak, which is when there’s a hole in the sac of fluid that cushions the brain and spinal cord. As the fluid leaks out, the brain sags down into the skull, causing horrific headaches and neck pain.
It took another three months and three attempts to finally plug the leak. Again, I thought the worst was over.
But the headaches never stopped.
As I write this, I’ve only had about a half dozen headache-free days since June 30, 2018. Yes, I’ve had a headache every day for YEARS!
My doctors can’t even agree on what’s causing the headaches, so my list of diagnoses has piled up.
A couple of my doctors say I have a chiari malformation, which is when the cerebellum of the brain herniates down into the spinal column. If you think that sounds painful, try living with it!
Depending on the doctor, my other diagnoses include craniocervical instability, migraines, intracranial hypertension (too much pressure on the brain) and cervical spondylosis (neck arthritis). Several also think I may have Ehlers-Danlos syndrome, which would actually explain almost everything that’s physically wrong with me.
Every day is a struggle for me.
The career I loved so much is mostly gone. Between the fibro/Lyme, lower back pain and headaches, I can only work an hour or so a day, and some days I can’t work at all. I am in the process of trying to get approved for disability benefits.
My marriage ended in divorce partially because my husband didn’t believe I was really sick. I no longer enjoy the middle class life I used to live.
I’m grateful that I’m functional enough to do the basics, like showering or cooking a meal, but I can no longer do many of the things I used to enjoy like exercising, home improvement projects or shopping.
I’m still looking for answers for myself … and for you!
I founded Fed Up With Fatigue in 2015 as a website dedicated to fibromyalgia and its sister condition, chronic fatigue syndrome. I focus exclusively on those two conditions here on Fed Up, so you won’t find many references to my other health issues.
I will continue to share the latest fibromyalgia and chronic fatigue research and treatments with my readers on Fed Up With Fatigue for as long as I’m able.
I believe there is still hope for us.
Research is advancing and will hopefully lead to more insights into the mechanisms behind fibromyalgia and ultimately to better treatments. While I wait, there are actions I can take to improve my daily symptoms.
And that’s what Fed Up With Fatigue is all about!
This website is my attempt to weed through the thousands of medical studies and claims out there, and find out what really works when it comes to reducing the symptoms of fibromyalgia and chronic fatigue. As I continue on this journey, I hope that what I learn and share here at FedUpWithFatigue.com can be helpful in your healing, too.
Gentle hugs, Donna.