Living with a Fibromyalgia Diagnosis
Updated: Sep 1, 2020
Learning to Handle Life with a Chronic Diagnosis
For the last 13 years I have experienced carsickness aka vertigo, preventing me from riding in the backseat of a vehicle or even turn my head to the side while in motion. I was no stranger to allergy issues either, suffering seasonally with sinus infections most of my life. As a child I had many issues with foods, GI upsets and migraines, but as an adult the issues had seemed to disappear. Then three years ago I began experiencing symptoms that seemed rather normal at first, but ended up beginning a two year testing period before finally getting the diagnosis of fibromyalgia.
Leading up to Diagnosis
I was on my way to a women's retreat weekend with my church and the ladies graciously let me sit in the passenger seat. Everything was awesome, fun and lighthearted. The usual chatter among excited women getting away for a brief moment to learn and grow in their faith together. We stopped at a fish house for lunch. Stories continued and laughter surrounded our table.
The food was amazing at this hole-in-the-wall restaurant that was housed in an old home with several additions on it. The floor of the entrance was not even level, which amazed me that this packed place had such a following. There was an old, almost musty smell of history throughout the place which also adorned the walls, but the food was super fresh.
Half way through dinner, I began to feel ill. After several trips to the restroom trying to stabilize my spinning, I just couldn't finish my meal, but I remained silent about it. As we departed the restaurant to continue our voyage, I noticed the other Mrs. Cole, a women around my grandmother's age, struggling to get into the back of the van and offered her my passenger seat.
Within 20 mins I experienced some of the worst motion sickness I have ever experienced. I couldn't even keep my eyes open and wanted badly to jump out of the vehicle and walk the rest of the way, no matter how long that would have been. I remember smelling a wonderful sweet smell, that was completely unfamiliar to me and soon learned that it was the orange blossoms and that they were in full bloom, as I was very new to Florida at the time. These blossoms helped to further inflame my sinus', which I only learned later.
I was so sick upon arriving at the retreat that I let the other ladies check in and then hurried to my room. This was when I finally let my roommate know that I wasn't feeling well. I called my husband I let him know we had arrived safely, but that I was very sick from the trip. He offered to come and pick me up, but I declined.
I missed the evenings talk and cannot recall much of the entire experience. I felt slightly better, but just couldn't shake this feeling. I drove us home from the trip as there was no way I would've been able to handle anything else. Once I was home I thought I would feel better, just needed some rest, I told myself. This was far from the truth.
Recognizing The Signs of Fibromyalgia
My symptoms had a broad spectrum. Unbelievable headaches, relentless spinning, extreme neck pain, body pain, congestion and GI issues. I was initially diagnosed with a sinus infection and sent home with meds. I spent the next week on steroids and 10 days on an antibiotic. The symptoms subsided, that is until I ran out of steroids and then they all came crashing back. Blood tests and and ear, nose and throat specialist only determined one thing, inflammation. I had no visible infection. My blood work showed signs having an auto-immune issue and I had major inflammation in my head to the point that my sinus' were nearly closed. Three more weeks of steroids were ordered and the symptoms subsided, for the time being. About a month and a half after the initial illness I started to feel somewhat normal once again, due to the steroids.
I mean really, what is normal? I couldn't quite shake the extreme fatigue that I was experiencing. I could no longer eat gluten and wheat products as they inflamed my face first and then after a day or two, my bowels. The pain was very intense, often needing ice on my face and having to "rest my eyes" just to get through the day. Light sensitivity became much more noticeable and I no longer could stand going out into the warm Florida temperatures with out feeling as if I was overheating and triggering feeling ill. The pain in my intestine's rivaled any other pain by far. Sharp, stabbing pain worse than birthing my two children and once this subsided, which could be days, the aching pain would begin. During these periods my abdomen would swell to the point of appearing 6 month pregnant and my clothes no longer fit. Vertigo came and went as well as intense bouts of widespread pain.
Over the next few months, I tried to figure out how to deal with what I was experiencing. My diet had changed entirely. I only consumed single source ingredients for for close to 7 months. No packaged foods, no ingredients that I didn't add myself, no eating out and separate meals for me and the rest of my family. All the while maintaining a full time job, working from home (thankfully) and a household. Despite having the most supportive husband and children, I felt completely down. I kept gaining weight and didn't even have the energy to exercise to work it off. I frequently used ibuprofen to lessen the pain and took many hot baths with Epsom salts as well as using a heating blanket.
I felt helpless and pathetic. Just a few short months before I had felt relatively normal. I would have a day or so where I would have some symptoms, but I was very active physically and socially. Now I was stuck with symptom on top of symptom and could no longer function as I had before, as more and more days became bad instead of good.
Instead of getting better, things seemed to escalate, and at some point I swallowed my pride and went back to the doctor. I hesitated for so long in fear that I would be labelled crazy or that there was going to be some horrible diagnosis. Thankfully I didn't have a doctor that just like to treat things with pills, but rather wanted to figure out the root of what I was experiencing.
The Breadth of A Fibro Diagnosis
I was referred to both a gastroenterologist and a rheumatologist. Many sets of blood various other tests were also ordered. I visited the gastro doctor weekly for quite sometime, kept logs of my issues and became a guinea pig for very expensive prescription medicines, all of which seemed to either do nothing or cause the extreme opposite effect. Finally the doctor ordered a endoscope, which only confirmed the fact that I had inflammation throughout my upper GI. My lower GI, which is where the majority of my problems stemmed from, were passed off as a non issue. The entire experience felt like a complete joke, and after thousands of dollars and countless months, I was no better off that where I began.
Then it was finally time for the rheumatologist, as is took quite some time to get an appointment. More blood work, more tests, more examinations. All the while I was becoming more and more agitated and exhausted. All of the laboratory testing was inconclusive and although I had certain auto-immune markers in my blood, I did not have a specific auto-immune disease. I had fibromyalgia.
I was floored, as she began to describe it and explain how they establish a fibro diagnosis. It seemed like such an elusive answer to me. The widespread pain that I was experiencing was a chronic condition that resembles arthritis and affects everything from sleep, the ability to exercise, joint stiffness, IBS, sensitivity to heat and cold, memory and concentration issues, mood and fatigue. I learned it can also cause nausea and dizziness (in my case vertigo), vision problems, weight gain, anxiety, depression and many more things. All things I had been experiencing here and there for years, little by little, but had been ignoring or discounting until the all came crashing in together. I also learned that there was no cure, but rather the best approach was to encompass an entire lifestyle change.
Adapting My Lifestyle with Fibro
I immediately began to research as everything I could find out about what I felt was a quasi-diagnosis. The more I learned through to doctors and sufferers alike, I realized that this wasn't something that suddenly came crashing in on me. There were warning signs along the along. Through logging all aspects of daily life and learning to recognize triggers, gradually fibromyalgia became a bit more manageable.
Lifestyle evaluation is a necessary process, regardless of a chronic illness diagnosis. The need to determine what is healthy verses what needs to be cut out to remain healthy is a very individual journey. Life looks different for all of us and what works for some doesn't work for others. There is life beyond a fibro diagnosis, it just doesn't look exactly like what life looked like before, and for good reason as our symptoms are indicators of our well being.
Personally I have found that stress and inadequate rest are some of my major triggers. Certain foods also compound my pain levels, especially when eaten often. Learning to balance fatigue and remain active can be daunting at times. On good days overdoing myself physically is to my detriment the following days. Determining which vitamins, minerals and supplements worked best for me was an essential step to maintaining low levels of pain and higher energy levels and had allowed me to virtually eliminate taking NSAIDS. Personally I am allergic to most pain medications, completely eliminating them as a treatment option. The over the counter pain medications that I can tolerate only temporarily ease pain, but actually cause more inflammation and pain over longer periods of use.
Life is about creating balance. Too much or too little of anything tips the scale too far in either direction. Learning to balance ourselves can be tricky and time consuming. Sometimes arriving at the point of frustration over and over again can make it feel easier to give up and accept the situation for what it is. But acceptance isn't balance, it's the opposite. Learning more about ourselves and how to better care for bodies and our minds isn't easy, but it is so worthwhile in the end.
If you have had a diagnosis of any sort, it can be scary and feel unrelenting. If you haven't, life can still feel scary and unrelenting at times. No matter what you are not alone! Comment below or send me a message if you would like to know more about things I have found that helped me live a more balanced life or have any other questions.
As always, Keep Smiling
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