Monday 27 August, 2018 is a date I won’t forget. It’s a date I can’t forget. It’s the date I was given the gift of a diagnosis.
For almost two and a half years I had been presenting to my GP with aches and pains, complaining of not recovering from exercise the way I knew was normal for me, upset stomach and lack of appetite. I was experiencing anxiety and depression because of the pain and other symptoms I was experiencing and therefore, my GP put all my symptoms down to anxiety and depression. I’d been seeing a psychiatrist for almost a year to manage my antidepressants I’d been prescribed because I wasn’t eating or sleeping due to the pain. In mid July (days before a trip of a lifetime to the UK which had been cut short because I was too unwell to complete my initial itinerary) I had been given a referral to a rheumatologist as my psychiatrist suspected either fibromyalgia or lupus. From mid July to mid August, my symptoms got progressively worse. I was struggling to maintain full time work, I was no longer able to study, I was sleeping 13+ hours a night and waking feeling more tired, I was in constant pain that ranged from annoying to vomiting and I couldn’t follow a conversation – the brain fog was real. I was eating one meal a day because I didn’t have the energy to eat anything else. I had chronic diarrhoea (I’m talking 5+ times a day). People were asking if I’d put on weight or lost weight because my face was puffy but I’d lost weight elsewhere. Mentally, I was struggling. All my bloods tests had come back normal. I had an appointment with a rheumatologist in October as that was the earliest I could get in.
This image is me on the 23 August, 2018. I can tell from my face that my inflammation was up and I am incredibly unwell.
I was at work in the morning of Monday 27 August, 2018 when I got a call from the rheumatology clinic to say they’d had a cancelation at 2pm and I could have the appointment if I could make it. I took the appointment and I was told that day I have fibromyalgia, there’s no cure and here’s a Tramadol prescription.
I was fortunate I had all my symptoms written down in a notebook I had with me that day. My rheumatologist went through my symptoms, my medical history and did the trigger point test to come to a diagnosis of fibromyalgia. I was given a repeat prescription for Tramadol to help manage the pain, given the name of two antidepressants to discuss with my psychiatrist and a handout on fibromyalgia from Arthritis SA. My rheumatologist sent a letter to my GP informing them of my diagnosis and instructing them to keep prescribing Tramadol if it provides relief.
A diagnosis explained what was going on in my body and 2 years on, this is what I wish I was told when I was diagnosed:
There may not be a cure for fibromyalgia but it is manageable // fibromyalgia doesn’t have to be progressive if it’s well managed. If it’s left unmanaged through, it will progress.
What can cause a fibromyalgia flare up // emotional stress, physical injury, illness, over exercising, under exercising, dehydration, food intolerances, hormone changes, changes in weather, hot or cold weather or too much exposure to sunlight can cause a fibromyalgia flare up. A flare up can last for hours, days weeks or months and what causes flare ups will differ between individuals. Managing exposure to triggers by removing them is possible or limiting exposure if it’s not possible to remove them helps reduce the symptoms of fibromyalgia.
What you put in and on your body impacts fibromyalgia // any additional stress on the body can cause an increase in symptoms for someone living with fibromyalgia and this includes eating foods that cause inflammation / intolerances or foods that are difficult to digest. Using skin care and make up products that have chemicals and toxins in them can also cause flare ups.
To see a holistic nutritionist // seeing a nutritionist changed my life, and I don’t say that lightly. Learning what my body needs from a food and supplement perspective has been imperative to improving my quality of life. Working together we have also been able to improve my gut health which has meant I am now able to digest the nutrients from my food better. My energy, pain levels, mood and sleep quality have all improved. Plus I now have more useful hours in a day to do things I enjoy. A holistic nutritionist was able to listen to me and look at treating my symptoms regardless of the label that had been put on them.
Stress management is critical to fibromyalgia management // as mentioned above, any additional stress on the body can cause a fibromyalgia flare up. Stress management with fibromyalgia is difficult as the ‘typical’ recommendations such as exercise isn’t possible due to the pain and fatigue and recommendations like meditation can be difficult to concentrate on due to the brain fog. Having time away from social media, limiting screen time, spending time in nature (even if it’s just sitting in the sun), colouring in, journalling and floatation therapy can be helpful to reduce stress and reduce fibromyalgia symptoms.
Research has shown [insert treatment option here] helps with the relief of fibromyalgia symptoms // along with various medications (including antidepressants and pain relief), acupuncture, acupressure, floatation therapy, an individualised approach to exercise, yoga, hydrotherapy, meditation, tai chi, kinesiology, massage therapy and infrared saunas have been proven in various studies to help in the management of fibromyalgia symptoms.
Being diagnosed with a chronic illness is a grieving process // living with a chronic illness is a massive life adjustment. Lifestyle changes may be required to reduce stress and manage the symptoms of fibromyalgia. Getting a diagnosis is a line in the sand moment which often takes years but then it’s real what’s happening. It reaffirms every time you’ve gone to the doctor and been told everything is fine. There is a grieving process of the life you were living and the life you thought you were going to live. It’s important to take the time to process all these emotions. It’s still possible to have a fulfilling life with many achievements, but it will look a little different.
What you really need to know:
- Fibromyalgia might not have a cure but it is manageable through utilising medications, lifestyle changes, diet and natural therapies.
- Nutrition has a significant impact on the quality of life of someone living with fibromyalgia.
- It’s important to grieve the life you thought you were going to have without fibromyalgia as it will look different now.