I am one of the 3-6% of people living with fibromyalgia. Fibromyalgia is incredibly difficult to diagnose. The average time from presenting to a doctor to being diagnosed with fibromyalgia is 2 to 3 years, sometimes more. Most people with fibromyalgia present to more than three doctors before getting a diagnosis. I am grateful a specialist diagnosed me after having continuous symptoms for two years and seeing one GP, a psychiatrist and a rheumatologist. I had symptoms on and off for five years prior but it wasn’t enough to form a diagnosis.
For context, I am 26 at the time of writing this and was diagnosed at 24. I have been living with consistent symptoms since I was 22.
Fibromyalgia has many comorbidities; these are conditions that often occur concurrently. I was diagnosed with voice box dysfunction in 2010, anxiety in 2012, depression in 2016, fibromyalgia in 2018, PCOS (polycystic ovary syndrome) in 2019 and IBD (inflammatory bowel disease) in 2019.
Just before my diagnosis with fibromyalgia, I was struggling to maintain full-time work. I had used my sick leave and was taking a day as soon as I had accumulated enough leave. I was working from home wherever possible as I found that more manageable.
My pain was an 8/10 most days where I couldn’t think straight. If I was having a good pain day and my pain dropped to a 3/10, I could sleep, and I would for 13 hours and wake up feeling like I hadn’t slept. Other nights, I couldn’t sleep because of the pain and would get maybe 2 hours sleep. I was hardly eating because of nausea, and I lost a significant amount of weight. I had diarrhoea 5-6 times a day and would be physically sick most days. I had brain fog. I didn’t socialise because I didn’t have energy, was in too much pain, and always needed the bathroom.
My anxiety was becoming unmanageable, and it was contributing to depression. I went to my GP and was prescribed antidepressants and started seeing a psychologist. 6 months later, when my moods weren’t getting better, I went through my symptoms with my (now ex) GP. He told me it was part of the depression and to talk to my psychiatrist. My psychiatrist went through my symptoms and suspected fibromyalgia or lupus. I then went back to my GP and got a referral to a rheumatologist who diagnosed me with fibromyalgia.
The rheumatologist diagnosed me in my first appointment, prescribed tramadol for pain relief and suggested two antidepressants for me to talk about with my psychiatrist. After diagnosis, I took a few weeks to process everything and research what fibromyalgia is and how I wanted to manage it.
I found a clinical nutritionist early on who was a God-send. Alyce put me on the Autoimmune Protocol straight away, and that reduced a lot of my inflammation and pain. I now know that I react to gluten, dairy, sesame, egg, nuts, sulphites, strawberry, passionfruit and tomatoes (we’re still testing other foods). It wasn’t easy to remove so many foods from my diet, especially when I was feeling fatigued and in pain, but I feel so much better for it. Yes, food matters and makes a big difference!
I saw a psychologist every 6-8 weeks for three years. There is a lot of debate around the role of psychology in managing chronic pain; however, it helped me to grieve the life I thought I would have and allowing me to adjust to life with fibromyalgia.
I see an acupuncturist every month for pain management, energy levels and managing my PCOS (which can cause fibromyalgia to flare up). I started by going to the student clinic at my local Endeavour College, which was super affordable, and they were knowledgeable and helpful.
Life now with fibromyalgia
I now work full-time and study part-time. In January 2019, I commenced my third university degree, a Bachelor of Health Science (Nutritional and Dietetic Medicine) at Endeavour College! I haven’t had a sick day for fibromyalgia in at least six months. I play netball once a week. I run. I go to pilates a few times a week. I socialise with friends; we go out for breakfast or lunch, we go to museums and exhibitions or events like quiz nights. A group of friends started a book club at the start of the year, and we meet monthly for 2-3 hours to discuss life and the latest book we’ve read. I go stand up paddle-boarding and swimming at the beach when I can. I go on dates. My mental health is the best it’s been in years.
Medication wise, I am currently using a combination of CBD oil, THC and prescribed supplements. I don’t use tramadol or antidepressants at the moment. With nutritional support and acupuncture, my psychiatrist supported me in coming off my antidepressants. I have a new GP who is supportive of the way I manage my fibromyalgia, and I have CBD oil prescribed from a specialist. I use a broad spectrum CBD oil daily (without THC) and use THC for pain relief when I have a flare-up.
I still have a bit of pain most days, I still have my flare-ups where I need to rest, but it’s about management. I’m by no means cured, but it’s manageable most of the time.
I know being diagnosed with fibromyalgia can be a scary thing. I hope this brings hope and a different perspective of what life can be like with chronic pain.