Fibromyalgia is a crippling illness that can often be difficult for medical professionals to diagnose even using blood tests, CT scans and MRIs. Elle May Rice, a journalist with the Liverpool Echo, has first-hand knowledge of the illness that can wreak havoc on the body. Here, she writes about her plight and how she has come to live with the pain.
Elle's story:
I was diagnosed with fibromyalgia in 2021 after almost 18 months of confusing illnesses, trips to the GP and a lot of waiting around for hospital test results.
Like many people, I’d never heard the word fibromyalgia before my doctor mentioned it. According to the NHS website fibromyalgia, which can also be called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.
The exact cause of fibromyalgia is unknown, but it's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord and nerves) processes pain messages carried around the body. It's also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents. In many cases, the condition appears to be triggered by things that are physical or emotional like an injury, an infection or stress.
For me, I can pinpoint the illness and stressor that triggered my fibromyalgia, though I didn’t know it at the time. During lockdown in 2020, I developed Bell’s Palsy, an unexplained episode of facial muscle weakness or paralysis that can last around six months. It caused the left side of my face to droop, my sense of taste had almost completely disappeared, and I couldn’t close my left eye.
Luckily for me, the weakness was resolved within about two weeks thanks to getting treatment quickly, but weeks and months afterwards I still didn’t feel back to my normal self. Doctors explained this away as the after-effects of Bell’s Palsy and reassured me I’d be fine soon enough, but in the months afterwards I was tired all the time, struggled to sleep, developed intense headaches, had stomach problems and widespread pain throughout my body that I just couldn’t explain.
Getting a diagnosis
Throughout the next year I’d visited my doctor multiple times, with some of them resulting in trips to the hospital for blood tests, CT scans and MRIs that said there was nothing wrong with me. If there was nothing wrong, how could I be in so much pain? My body ached, I couldn’t go a day without getting a headache, I could barely sleep and when I could I’d wake up in agony with muscle cramps in my arms and legs that were so painful I’d cry.
In the end, it took making notes of all my symptoms and practically begging a doctor to look at the bigger picture, rather than just one or two problems at a time as they’d done in the past, to be heard. The diagnosis of fibromyalgia came fairly quickly after that.
I was floored, to say the least. I finally had an answer but it just gave me more questions; was it ever going to go away? How do you treat it? What even is fibromyalgia?
Treatment for fibromyalgia
Unfortunately, treatment isn’t as simple as taking a course of antibiotics and being back to your normal self within the week. I started out on medication that didn’t stop the pain at all, despite helping me sleep somewhat. But it's all a matter of trying a range of different medications to see what worked.
Most didn’t, but we eventually found a number of medications that worked. Some for nerve and muscle pain, another for headaches and eventually one that helped with low mood, which is something I hadn’t expected.
Other than some mild anxiety as a teenager, I’d never given much thought to my mental health. However, the longer I suffered with fibromyalgia, the more intense my anxiety and mood changes became.
The huge number of changes that came with lockdown, changes in my personal life and job and the constant pain I was in led to crippling anxiety, panic attacks and low mood I had to battle everyday. Over time, I’ve learned a few ways to deal with all the different symptoms that come with fibromyalgia, including taking the time to rest when needed, physiotherapy, stretching, being as active as my body allows, and making sure to keep up with my medication - and make changes to it if it stops helping.
I’ve had to make a number of lifestyle changes too, including avoiding certain products in my diet, adding in others, taking vitamins and more. I’m still learning to accept that sometimes the fibromyalgia will prevent me from joining in with certain activities.
Can you live a normal life with fibromyalgia?
If my fibromyalgia is controlled then it's possible to live a normal life - aside from the lengthy list of medication - and carry on with my usual activities. However, when I experience a fibromyalgia flare up things are often out of my control.
A flare up can last anywhere from a few days to a few weeks and cause an increase in pain and worsening of other symptoms. Many people have a few warning signs they can look out for, but for others it just happens out of the blue. For me, a change in the weather and lack of sleep are big triggers. Even almost two years in, I can’t always predict when a flare up is about to happen, but when they do it can feel like I’m back to square one.
Having to explain to work, family and friends that while I’m not sick with a stomach bug or the flu, lifting my head off the pillow or taking a few steps can be excruciating. People don’t always understand why I can’t do certain things or have the energy they do and it can be difficult to explain it.
There are plenty of people out there that insist or believe that fibromyalgia isn't real, which I can somewhat understand considering just how many tests and scans told me there was nothing wrong with me. Many fibromyalgia symptoms are similar to those of other conditions and there's still no specific test to do for fibromyalgia.
I've even dealt with doctors who clearly didn't consider fibromyalgia to be an 'important' illness. But when it's stopping me from living my normal day-to-day life, I can tell you it is very, very real.
With an illness that's 'unseen' or 'invisible' there's stigma around it, but until you've lived it, you can't know another person's pain. And you certainly can't be the judge of how debilitating that pain is or is not. Luckily for me, my fibromyalgia is currently well under control and with a proper routine should stay that way. That's a good start to the year in my book.
What to do if you think you or a loved one may have fibromyalgia
It's an uphill battle, is what I can tell you. The symptoms of fibromyalgia are similar to many other illnesses so there's a lot of confusion over what you may or may not have. And they can all pop up at different times, making it difficult to look at the big picture.
My advice would be to make a note of anything and everything - that's what worked for me. Looking at each of the symptoms separately can give an entirely different diagnosis and treatment, and actually leave you in pain for longer because you're treating the wrong illness.
Getting a doctor who was willing to look at the big picture was so important to my journey - if one doesn't listen, go to the next one and the next, because it's your life and health that's being affected and it is worth the battle.
It may have taken me 18 months to get a diagnosis and longer still to get on the right path when it came to treatment, but knowing that I can get up and go to work, run around after my little nieces or even just get a good night's sleep makes it all completely worth it. It was worth the hospital visits and the constant phone calls to the GP to know I'm feeling so much better now.
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