FIBROMYALGIA PATIENT STORIES
LIVING WITH FIBROMYALGIA, FRUSTRATION
AND COPING SKILLS
BY: Suzy Groenewegen; London, Ontario; POSTED: July 2021
The Facets of Fibromyalgia
In 2006, I began to feel unwell. This new journey I was about to embark on started with gastrointestinal pain, heartburn, and nausea, among other irritable bowel symptoms. Up until this time, I didn’t have issues tolerating food; it felt as though this problem fell out of the sky. I had no idea what was happening or why all of these symptoms would appear so suddenly. I started keeping a diary of what I was eating to identify foods that I believed to be triggering my stomach upset. I tried different diets (paleo, vegetarian, and vegan) and I was not having positive results. I grew frustrated and my diet became of very limited variety. I had been to a couple of doctors to talk about my gastric issues, but no provider was willing to refer me to a specialist. I went in search of a doctor who would make me feel acknowledged. I knew my current eating regimen was not healthy or sustainable. After finding a new practitioner who believed that my gastric issues were legitimate, I was referred to a gastroenterologist. I was finally diagnosed with IBS in 2015. It was a major relief after 9 years of having severe abdominal pain, to be given a diagnosis, and to know there was a diet to help manage my symptoms. This is when a dietician taught me about the low FODMAP diet and it continues to help me considerably.
During the time I was trying to self-manage my IBS prior to the diagnosis, I also experienced frequent back pain. Routine visits to the chiropractor helped resolve the issue, but only temporarily. I worked hard physically supporting special needs clients with physical impairments, so it was of no surprise I dealt with discomfort. My pain level was manageable and I remained very active as an avid runner and cyclist. My diet wasn’t diverse at the time, but I knew at least I was making healthy choices. I assumed once I determined the cause of my gastric symptoms and made the necessary changes, this would reflect on my back pain. I also recognized I needed to be more conscious of my body positioning at work. By making those modifications I assumed my health would return to normal.
From 2015 to 2018, I did really well following the low FODMAP diet and only had a few mild flares in that time frame. Through diet and exercise, I was able to manage my condition without medication. In terms of my back pain, I tried to become more aware of my posture, especially when I was working. I noticed my back was still sore, but trips to the chiropractor continued to provide some relief, so I did not investigate further.
In October 2016 I developed a sinus infection. After taking a course of antibiotics, I managed to feel somewhat better; however, I continued to have cold/sinus symptoms until April 2017. I assumed my regular exposure to young children during the cold season was likely the cause of my sinus trouble. However, I had an exposure to mold shortly after the new year of 2016 and I now wonder if that is a more likely connection.
2018 marks the year in which my body really began to dwindle. I developed tinnitus along with a blistery rash that spread across my chin. I was also diagnosed with an ear infection and took a course of antibiotics. The infection went away, but the ringing in my ears continued for 3 solid months until finally I got some relief. Since then, it still comes on intermittently for no apparent reason, but thankfully I no longer hear the constant sound of the ocean or a ringing phone inside my eardrum. I also had several other infections unrelated to my ear in 2018. I had some type of infection, on average, once a month.
The rash continued spreading further across my face despite prescribed steroid treatments. I remember feeling so defeated and frustrated. That spring I also had to have a uterine surgery and there were some complications. I recovered from the surgery and I carried on as best as I could with my busy life as a full-time Educational Assistant and part-time student.
That summer, I developed right hip pain that woke me regularly in the night. I increased the amount of vitamin d I was taking to see if this would help the pain in my hip as I suspected arthritis was a possibility. My hip pain remained stable, so I decided to be patient and allow more time for the vitamin d to take effect. Looking back, I wish I had sought medical attention sooner as the pain in my hip began to radiate down my leg. It felt like a painful electric shock travelling from my hip down to my knee. This type of electric pain also became problematic in my neck, back, and shoulders. Some days my muscles were so sore and tender they felt badly bruised, as though I had experienced a serious fall. I developed muscle tremors in random areas throughout my body, including my face. I began having migraines that would generally come on with the warning of a tingling sensation that would creep up my head from the base of my skull. I knew something was very wrong, so I went back to the doctor.
I was given a requisition form to have x-rays completed. I went to get the x-rays as soon as possible and luckily the results came in quickly. The doctor informed me I had osteoarthritis in my neck, back, and hips, and to start physiotherapy. He assured me most people see an improvement in a short time period. I was also provided with a new prescription medication to treat the pain. I was feeling optimistic and hopeful believing if I did my homework like a responsible patient everything would resolve. Unfortunately, it was not so simplistic. On a positive note, my rash did disappear eventually, but not from the prescribed cream. It seemed everything that touched my face, I was allergic to. I eventually found some facial hygiene products that my skin could tolerate.
It’s difficult to determine if it was the physiotherapy or prescription medication that minimally helped relieve some of my pain, maybe it was both. However, the constant numbness and tingling that was moving down my legs was not relieved by any amount of exercises, acupuncture, dry needling, or TENS unit. I was fortunate though, to come across a knowledgeable physiotherapist who indicated she believed there was a problem with my central nervous system and suggested I investigate further. After months of weekly physiotherapy treatments, doctor’s appointments, trying different medications (which I did not respond to or had negative side effects from), and chiropractor visits I was not any further ahead. My doctor placed a referral to rheumatology on my behalf. All of the routine tests to rule out other illnesses came back negative. Considering my other comorbidities, my symptoms, and the course of events leading up to illness, fibromyalgia was becoming a possible suspect.
In 2019, I was diagnosed with fibromyalgia. The rheumatology clinic would not accept me as a patient because they had a long wait list and were only accepting patients with RA. I was able to see a neurologist though, who confirmed my fibromyalgia diagnosis. I was also seen by pain specialists who were also helpful.
It was in this same year I became too ill to work. I had pushed through as long as I could; in hindsight longer than I should have. My body was trying to give me a very important message that I did not take seriously enough. I suffered a severe flare, leaving me unable to walk up the stairs or stand in the shower. I developed orthostatic intolerance and eustachian tube dysfunction as well. Both of these conditions took some time to properly diagnose and treat, so it left me incredibly ill for months.
All of these warning alarms gave me the incentive to start becoming more informed about fibromyalgia. I read, researched, joined online support groups, tried alternative therapies and different medications. I decided once I had spent some more time on this journey, I would share my experience with the hopes of helping others with fibromyalgia. This is part of the reason I decided to create this post. Today, I try to self-manage as best I can using the strategies I have shared. I still deal with many symptoms, pain and fatigue being the most problematic, but I am becoming more accepting. I try not to allow my physical health to affect me emotionally, although this remains a constant work in progress. I keep myself stimulated through volunteer work as this fulfills a sense of purpose and belonging. Exercise and a healthy diet helps with pain management, and coping with all aspects of my health.
I do the best I can, but fibromyalgia can be unpredictable and relentless. There are times when I feel as if my one step forward is followed by two steps back. What I can’t let myself do, is over analyze and obsess over what I could have done differently to prevent a flare up; it’s usually a factor out of my control. What I can do though, is accept this illness for what it is,and give myself credit for doing the best I can.
“Surrender to what is. Let go of what was. Have faith in what will be.” - Sonia Ricotti
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