It’s hard to know how far back to go, because looking back, I can see early signs of fibromyalgia back in my thirties. Even then, I would go through bouts of fatigue. Just as I started to wonder if something could be wrong, I would bounce back to normal and forget about it.
I’ll begin my story three years prior to diagnosis. It was fall of 2020 when I started experiencing extreme fatigue.
Finally, I broke down and went to the doctor. I asked for a thyroid test and to be screened for autoimmune disease. (I have uveitis and my eye doctor told me I was high risk for developing autoimmune disease). Everything came back normal except I tested positive for HLA-B27, which basically just means that there is a small cluster of diseases that I might be more likely to develop. She really offered me no encouragement whatsoever as to how to improve my fatigue, so I left with no answers or direction on what to do. I randomly decided to add an iron supplement, and this seemed to diminish the fatigue for the time being. I assumed I must be mildly anemic and the doctor missed it.
Over the next few months, I slowly developed some gastrointestinal distress. By the following summer I was starting to cramp up after lunch just about every day. Dr. Google suggested it may be due to gluten or dairy. I wasn’t ready to give up my beloved bread and cheese, so I tried other tactics like forgoing my favorite Costco Madras Lentils. At first it seemed like that helped, but ultimately I continued to have daily cramping and pain.
Discovering Alopecia
In July 2021 I was doing my hair and discovered a small bald patch. After having a total meltdown, I did a Google search and determined this was the result of an autoimmune condition called alopecia areata. I made an appointment with a dermatologist, but as a new patient I had to wait three months. Terrified of going bald, I researched what I might be able to do on my own.
Multiple sources pointed towards the Autoimmune Protocol (AIP), a version of the paleo diet with additional eliminations. It seemed so extreme to me that I decided to just start with eliminating gluten and dairy, along with sugar, unhealthy oils, and processed food. I almost immediately felt relief from my daily cramping, and to my delight the scale began to drop. But after six weeks, my bald spot had grown even bigger. So I decided to take the plunge and do the full on AIP diet.
Within a day on the diet, I felt a boost in my energy levels. Sometimes fatigue comes on so gradually that you don’t even realize that how you feel every day isn’t normal. By the time I saw the dermatologist, I already had baby hairs sprouting in my bald patch.
According to my research, hair loss is associated with fibromyalgia, but alopecia areata specifically is not. However, while it may not have been an early sign of fibromyalgia per se, it was a red flag that something was not right with my body.
First Early Fibromyalgia Sign
November 2021 is when things changed. I travel for my job, and it is difficult to stick to a strict diet like AIP while traveling. I told myself that I’d been good and that if I needed to cheat I wasn’t going to beat myself up for it. Let’s just say that I found out the hard way that I really and truly have a gluten sensitivity.
About a week after that trip, I developed intense pain in my lower rib cage. Sometimes it was in the middle and sometimes it was on one side. I immediately assumed it was due to reintroducing foods on the diet, so I went back to the strict version. (It should be noted that I also received both doses of the COVID vaccine just prior to the trip, but I wasn’t seriously considering that to be a contributing factor yet). After a month of pain with no improvement, I finally broke down and went to the doctor.
I was so focused on the coincidence of the gluten exposure with the emergence of the pain, that I didn’t realize this was a musculoskeletal and/or nerve related issue, and basically my first early sign of fibromyalgia pain.
The Start of Many Doctor Visits and Tests
The doctor’s first thought is that the pain was from my gall bladder. But blood tests and an ultrasound were normal. This was to be my refrain for the next year and a half! Stumped, she referred me to a gastroenterologist. There I did an endoscopy/colonoscopy (normal) and a HIDA scan (normal).
Meanwhile, I was getting other early signs of fibromyalgia, but I hadn’t made the connection yet that it was all related. After all, I still thought my rib pain was a gastrointestinal issue. I went on a business trip and woke up the next morning with super sore legs, as though I had just started a new workout routine. But I hadn’t. Also in a family trip to Disneyland, I had extreme foot pain. I didn’t realize it wasn’t normal at first – I mean, who wouldn’t have foot pain with all that walking? But my husband, eight years older than me, was fine. So something was definitely up.
More Muscle Pain
May 2022 was a huge turning point. My employer hosted a retreat which included a short hike up a steep mountain in my area. I was thrilled at how much energy I had due to my lifestyle changes and practically floated up that mountain. But the next day I was so sore I could barely walk. I didn’t think it was super weird until I got to work and not a single other person was sore.
For days I was in so much pain, plus fatigued. My rib cage pain was all over the place. When I went to a follow up visit with the gastroenterologist, she thought it sounded musculoskeletal. She did do one more test (fecal elastase -fun!!) which did actually show that I have endocrine pancreatic insufficiency. I was so excited to have found something wrong. I started on pancreatic enzyme therapy, but it did not make my pain go away.
New Appointments and Lots of Waiting
I decided to see a new doctor, since the one who referred me to the gastroenterologist didn’t seem very knowledgeable. This time I asked for the full thyroid panel (not just TSH) and a test for anemia, since that had been missed before. He also tested for things like RA and ANA antibodies. Everything was – you guessed it – normal. But I got a referral to a rheumatologist anyway. Being HLA-B27 positive, he thought it could still be something like ankylosing spondylitis.
I now know why it takes so long to diagnose fibromyalgia. For one thing, the symptoms crept up gradually. I can hardly blame the first doctor for initially thinking that my isolated rib pain was my gall bladder. But also, every time you get a referral to a new specialist, there’s a three month wait to get in. Then a wait to schedule whatever tests they want to do. Then more waiting for the follow up to find out that they didn’t find anything wrong.
As I waited for my appointment, I took up pilates. Regardless of what illness you may have, daily movement is usually prescribed. So I started doing a pilates video every morning. This helped SO MUCH. Since anti-inflammatories didn’t touch the pain, it was a godsend to have some relief, however short lived.
By the time I saw the rheumatologist, a full year had gone by since the rib pain first started. It was now November 2022. He did all the same blood tests and a chest x-ray. It was all normal.
Symptoms Worsen
The months of November and December were awful. My pain and fatigue really amped up. It was then that I determined in my mind that I really must have fibromyalgia. I asked the rheumatologist about it, but was told that they don’t treat it since it is not a degenerative disease. I went back to my regular doctor. My main purpose in that visit was to ask for a neurology referral. I knew that fibromyalgia requires elimination of all other possible causes, and I thought it was possible my symptoms could be due to MS. My doctor didn’t think that likely but he gave me the referral anyway. He also started me on escitalopram (Lexapro), an SSRI. This actually helped my energy levels a lot! However, I was still in a lot of pain.
Not much needs to be said about the neurologist. He examined me and said he thought it was probably fibromyalgia, but ordered some more blood tests and an MRI to be safe. All was normal.
The end of the story is finally in sight! Back to my GP, he started me on pregabalin (Lyrica). I was a little nervous as I had read a lot of negative stuff about it online, but thankfully I seem to be one of the few that tolerates it. When I went back for my follow up and told him my pain had improved, he said that supported a fibromyalgia diagnosis. This was April 2023.
Living with Fibromyalgia
My pain is a whole lot better, and I am so thankful to have some relief, and that I am still able to work. But of course I’m not cured. I still have pain. I still have fatigue. I still have to be careful and pace myself. I still have to turn to my other self care like epsoms salt baths, foam roller, and pilates.
Developing an incurable condition this early in my life (I’m 48) was not what I expected. It’s discouraging to know that I will be struggling with daily pain and fatigue for the rest of my life. But God has seen me through and He’s not letting me down. He taught me a lot through the whole process about relying on Him for strength and identifying with the suffering of Christ. I plan to get more in depth with these spiritual lessons in future posts. For now I’ll just say that I am truly grateful that I have grown closer to the Lord through all of this. This illness is not a curse; it’s a blessing. Yes, that’s right. Keep reading, and keep praying, and I hope you’ll see it that way too.