It took me decades to get a diagnosis for my chronic pain. Unfortunately, I’m not alone in that statement – many people, especially women, go unheard and dismissed at doctor’s offices across the United States.
Now, I finally landed on a diagnosis: fibromyalgia. I check so many of the boxes for fibromyalgia that I’m surprised I didn’t land here sooner, but I’m grateful to finally have a treatment plan that will actually help me in the long run rather than slap a Band-Aid on my issues. I’m sharing my experience here in case anyone else is struggling and not sure where to turn for answers.
My History of Pain
In Childhood
My first instance of pain started as a kid. I didn’t walk correctly – I walked toe-heel rather than heel-toe – so I developed ankle issues. Additionally, I learned in karate lessons as a kid that it I could not complete a pushup. My elbows simply did not bend in the way that allowed for me to complete a proper pushup without being in excruciating pain.
My pediatrician chalked this up to a combination of chronic tendonitis and I was told to stop wearing cheap shoes, and said I couldn’t do pushups because I was double-jointed. Not wearing cheap shoes didn’t help. Even now as I approach 30, my ankles still randomly give out.
In Adulthood
When I was 19, I was rear-ended in a car accident. This resulted in severe nerve pain, primarily in my wrists and sciatic nerve. This sciatic nerve pain and my experience with it over the years largely inspired my romantic comedy Stuck on the Slopes, particularly Juniper’s character.
When I went to the doctor after the accident, they sat me on their table, asked me to bend over at the waist, and then sit back up. Because I was able to do that, they sent me home. No scans, no X-rays, nothing.
I could barely walk when I got home after the accident. That pain never went away, even well into adulthood. I always assumed I just had sciatic nerve damage post-car accident, since doctors never seemed to concerned about it despite the fact that I was in constant pain.
My Symptoms
While there are many symptoms of fibromyalgia, and a lot of symptom overlap with other conditions like Rheumatoid arthritis and endometriosis, my fibromyalgia symptoms were as follows:
- Chronic nerve and muscle pain in various parts of my body, particularly my back, neck, wrists, and ankles
- Joint pain, particularly in my knuckles and jaw
- Muscle stiffness
- Occasional numbness and tingling
- Low pain tolerance/sensitivity to pain
- The feeling of being “tired but wired” throughout the day
- Trouble sleeping at night
- Occasional brain fog/difficulty concentrating
- Painful periods
- Gut issues/sensitive stomach
Anxiety and depression can also be symptoms of fibromyalgia. I’ve been previously diagnosed with complex post-traumatic stress disorder (CPTSD). Since CPTSD can also cause anxiety and depression, it’s hard to say how much of that for me is connected to my fibromyalgia vs. my CPTSD.
How I Got Diagnosed With Fibromyalgia
When I was living in Florida, in 2021, I rapidly gained weight. Like, a lot of weight. I went to my doctor there and asked if I had a thyroid issue, such as hypothyroidism, and also asked if they could check out my lower back since I was never properly treated by medical professionals post-car accident.
They ran some scans and X-rays and did not find that I had a slipped or herniated disk, which is what usually causes sciatic nerve pain. I was also referred to an endocrinologist, who determined my bloodwork to be normal except for some high cortisol (the stress hormone, which is not surprising for it to be elevated when you have PTSD or CPTSD).
Since my thyroid panels came back normal, my doctors refused to further help or treat me unless I started taking Wegovy, a semaglutide injection similar to Ozempic. I am not pre-diabetic or diabetic, nor am I at risk of it, and I wasn’t when they suggested this. So, I was back to square one.
Since this failed, I got my medical marijuana card in Florida to self-treat. I never got high, but took just enough to help both my CPTSD and chronic pain symptoms. It took the edge off, and I’m still a huge fan of folks using marijuana for medical purposes. I think, especially when faced with doctors who are unwilling to help like my doctors in Florida, it can be a great way to self-medicate that won’t put you at risk of being addicted to harder painkillers. In Stuck On The Slopes, Juniper also uses marijuana to self-medicate his chronic pain.
When I moved to Washington, I wrote a long list of all of my concerns and symptoms that I presented to my new primary care physician, as well as my history with past doctors in Florida. This proved to be super helpful and helped my new doctor narrow down what I might be dealing with.
Thankfully, I’ve found Washington state’s healthcare to be far more thorough and caring than Florida’s. Rather than my doctor just trying to shove expensive weight loss medication on me, she ran a full bloodwork panel to help narrow down a few different things, including testing for autoimmune disorders and other similar issues. Since my past care was poor, she also re-ran some of the tests they did. When all of those came back negative, we began testing me for fibromyalgia.
Testing & Treating My Fibromyalgia
We saved fibromyalgia testing for last because, as she put it, it’s exclusionary. Basically, we tested it by putting me on a small dose of medication to act as a trial, and then see how I feel in 4-6 weeks. We started with 20 mg of duloxetine, aka Cymbalta.
I stopped using marijuana medically since there were some not-so-pleasant interactions with it and Cymbalta listed, and I wanted to make sure my new medication worked as it should.
Cymbalta didn’t make me wait a few weeks to see results – I felt relief immediately. It worked like a dream, which meant we have a diagnosis. Everyone’s experience with medication is different, but thankfully there are tons of options for fibromyalgia.
I share my experience because so many people, especially women and people assigned female at birth, struggle with chronic pain and medical gaslighting. Those who are AFAB are significantly more likely to develop fibromyalgia. For years, I was told that my period pain was normal, that my aches and pains were normal, that I just needed to lose weight (spoiler alert: being skinny didn’t change anything). To go from doctors shrugging their shoulders to one clocking my issue the second I walked in the door blew my mind. Hopefully, sharing what I went through can help resonate with those who may be struggling with something similar.
