I may have Fibromyalgia, but Fibromyalgia does not own me…

I began my gluten-free journey due to a diagnosis of Fibromyalgia. After many doctor visits, medical treatments, prescriptions, behavior, and physical therapy, with little to no relief; I have cleaned up my diet to live a full, healthy life. I have been living gluten-free healthy for nine years. I wanted to share what I have learned through the years with anyone who is struggling to keep a positive mental attitude about living a healthy lifestyle, especially with Fibromyalgia. We all know the negatives of pain or having to make lifestyle changes when we don’t expect it.  I personally know the pain, the brain fog, the “I’ve totally hit the wall” exhaustion of it all.

For some who may be reading this and wondering what is Fibromyalgia and how you get diagnosed, well this is my story….

Fibromyalgia diagnosis is different than celiac disease. When I say I am gluten-free, people often ask “Do you get an upset stomach when you have gluten?” Fibro is different, as the pain is defused throughout the body and sometimes will appear in other ways - such as brain fog or exhaustion among other symptoms. Each person who has been diagnosed with Fibro is like grains of sand on a beach - no two are the same—which can make diagnosis even harder.

Fibromyalgia causes are not relatively known.  There are views that it may be caused by an illness, a body or personal trauma, and/or nerve endings gone haywire—that’s the short story. There is no simple way to be diagnosed—no blood test, like Lyme disease, no MRI, CT, or X-Ray to see it. I had Fibro for about 3 years before being diagnosed, and maybe even longer, since the symptoms can be random. I noticed I was exhausted and I had severe knee pain. The exhaustion I was told was due to stress (I had just started working a full-time job after closing my business after 13 years during the recession). My son was heading off to college and I worked in healthcare …yup, that would be stressful. The knee pain was attributed to possibly a meniscus tear and I was sent to an orthopedic physician. One physician said I had a small tear and wanted to do surgery. A second opinion found that I did not have a tear, but needed PT. (This was during a full year of back and forth to different physicians.) I went to PT and it was more painful than the original reason I started. Fast forward 6 weeks later and back to the ortho doctor to see why the pain was not getting better and getting worse in other areas. To start —the physician placed pressure on different pulse points on both sides of my body…It was like needles hitting a nerve every place he pushed on. He then stated, “I think you have Fibromyalgia, but it isn’t my specialty. Unfortunately, it is a disorder we “rule out” and cannot be diagnosed with a simple test.”  Off to have multiple labs done, previous MRI showed no damage to my knee and could not explain the other areas of pain. Then the exhaustion, “The Wall” and the brain fog.  A thyroid panel was done, but nothing came up. RA panel came up as on the higher side of normal, with no Lupus or autoimmune disease.

The pain had started slowly jumping from one part of my body to another with no rhyme or reason—knee, foot, elbow. Some days I felt great and went full throttle, then the next day I wouldn’t be able to walk without pain or struggle to think clearly. All I thought about was how was I going to survive day to day, keep my job and be able to enjoy my life. I refused to give in to this “Thing” that took over my body and had a weird name, but no one had an answer on how to treat it.

I found a rheumatologist who gave me trigger injections (in the pain sites) and put me on medication that worked for 3 months and I gained 10 lbs. I came off the meds and was put on a different medication, which only led me to more weight gain and no relief. I was weaned off the medication and sent to a pain clinic that put me on another medication and more weight gain..no relief after 6 months and weaned off that med. I was offered a lidocaine drip for 2 hrs at a time (and needed to bring a driver) and there was no guarantee that I wouldn’t (a) be nauseous and vomiting for the day and (b) how long it would last..anywhere from 1 week to 6 mos. was the prognosis…I needed more answers and look at other options. Note: a lot of people have had very good results with medication, everyone is different on their journey.

I was also seeing a chiropractor at the time and he recommended a holistic doctor who was attached to a major medical center in Boston and thought I should give her a try. So off I went and had another series of blood work done. Dietary changes including gluten-free and dairy-free, protein shakes, and minerals —including magnesium spray for the pain.

Within a month, I was starting to feel better. To be honest, eating gluten-free was very hard for me. I’m Italian and pasta and bread are in my blood. But, I was willing to give it a try. I ate healthy foods, gluten-free, and went mostly dairy free. For the most part, this all worked for me. I included exercise as my body would tolerate (read, a little goes a long way).

The downside was all the supplements were pricey. I felt I had a good foundation, and stopped all the supplements and decided to stay on my gluten-free journey, follow a healthy diet and start to exercise more according to how my body felt. The pain was much better controlled, the exhaustion was something I needed to focus on and plan my days better to not be overdue and drain my energy level to zero. This took time and a lot of patience as I am a doer and not a bystander in life. It got easier as I listened to my body and realized that this was my new “normal” but I was making a commitment and counting on my inner warrior to help see it through.

Present day…I know what I have, I don’t make it about Fibro, it’s part of my life, but I won’t let it take over my life. It has been a long journey for me. I have learned how to listen to my body (most days) I don’t let the negativity get me down (the majority of days). I work full time, I went back to school part time nights, I graduated as an older student with honors (I’m not saying how old..) and I have a pretty full family and social life. I have days that are more overwhelming than others, but they are much fewer and farther between. I have learned how to manage the pain, I may never be completely pain-free, but I work around it as much as possible and go easy on myself when I can’t manage a full day and need to rest. I only have one life and I want to be able to enjoy it to the fullest potential I possibly can. I do realize everyone’s journey with Fibro is different. I believe in looking for the positive around me, being in nature as much as possible, enjoying the simple things in life, and keeping my outlook as bright as I can. I am living on my terms and Fibro can take a back seat, cause I am driving this bus to where I want to go.

There are a lot of websites, and instagram posts all bemoaning the negatives of living with Fibromyalgia. I tell my story so you will learn how to focus on the positives of living life with a diagnosis - with your healthcare provider, you can be better prepared to talk about your history, and find answers that will help work towards a full and productive life! A lot has changed since my “diagnosis” and Fibromyalgia is better understood by healthcare providers than it was a decade ago.

I hope my story makes your journey a little shorter in diagnosis and less stressful. Like many of you, I am working each day towards a healthier lifestyle. I feel I have a safety net with the foundation I have built over the past years, what has worked for me and what hasn’t. I now know there are times I need medication when I hit a rough patch and I let my body tell me when and what is needed to stay within my normal. Behavior therapy has helped me work through this process.

Whether you are eating clean, are celiac, or have other allergies or intolerance - we are in this together with support and compassion for eating gluten free…and using some humor to get us through.

Living Gluten Free Healthy is as much about mental health as it is about physical health. Feeding your mind with positive thoughts. Gratitude journaling, reading, affirmations, sitting in stillness with no judgment is now a part of my lifestyle and I enjoy sharing with others.

Those who have “Fibro” cannot sit and compare each other’s symptoms or diagnoses. Celiac, Fibromyalgia, allergies or any autoimmune disease are different and most can be helped with a healthy diet along with some positive flexing on the days when you may feel your worst.*

Stay positive and healthy,

Annie 💜

*Please note: Before making any changes to your diet, or medications or starting any exercise routine, please discuss with your physician what will work for you. This is a story about my personal journey.

I am not a physician and cannot recommend healthcare treatment.