Awareness Days, Chronic Pain, Fibromyalgia, Women's Health

Fibromyalgia: A Patient’s Point of View

Treating patients with chronic pain is one of my passions.

It’s challenging, it’s complicated, it requires creative thinking, teamwork, rapport-building, patience and consistency. It can be frustrating and sometimes feel like no more improvements can be made. It can also be the most rewarding type of pain for me to face and help conquer in a clinical setting, particularly when your patient has spent years trying to find relief until they’ve met me.

The reason I feel so strongly about helping patients with chronic pain is because I am a patient with chronic pain. For the first time I am going to explain my journey from start to finish and if any of this resonates with you, feel free to contact me. For support or to find out how I may be able to help you.

The journey starts off a little sorrowful but I promise there’s a happy ending.

Age 6: The first memory of having complaints about pain in my legs. It conincided with the very start of my lacrosse career and the pain often was post-sport. My grandad had passed away not long before this.

Age 16: Having complained of pains in my legs for years, with the only relief being from laying with my legs elevated, my mood hit a real low point and the fatigue I felt had been worsening as I got older. Given my age It was put down to growing pains and “being a teenager”, I was given antidepressants for the first time to help me cope. I was on and off them for 4 years.

Age 19: I went to university and as the stress of my degree mounted the worse my symptoms got. I started to sleep for 12 hours at a time, the pain I used to feel in my legs had crept into other parts of my body: shoulders, neck, back and even my arms were occasionally affected. I often felt like i had a “foggy brain” which made studying difficult. Losing my words is something I had also done but it seemed to have got worse.

Age 21: I went back to the doctors again and told them how the pain was affecting my life considerably. My body felt like it had been doused in petrol and set on fire the majority of the time, other times it felt like 1000s of tiny hammer and chisels knocking on my bones. It was pretty much constant and the pain was now affecting my hands and feet. It was unbearable. There were days I couldn’t move without crutches, there were other days I couldn’t even manage to use the crutches. I had no idea what was wrong and I couldn’t explain the use of crutches so when the pain was that bad I hid from the world. I was now suffering with IBS-like symptoms, joint stiffness, sensitivity to touch and extreme sleep disturbance.

Age 22: After spending the best part of a year feeling like a pin cushion, blood tests a minimum of once a month, often more frequent with every single one coming back clear and living on diclofenac (strong prescription anti-inflammatory), the doctor referred me to a musculoskeletal specialist. The MSK specialist referred me for more blood tests, which came back clear and told me taking ibuprofen would stop the pain I was in. I cried and demanded a second opinion. On the way home I called my mum and told her I was leaving university because I was going to fail my 3rd year. I knew I’d never go back if I failed.

Age 23: I finally got to see a rheumatologist at a London hospital, it had taken months for my appointment to come through. He ordered more blood tests, a chest x-ray and a bone scan which was particularly unpleasant – all with a couple of months wait time for appointments, all results came back clear. The rheumatologist sees me for one final appointment, diagnosed me with fibromyalgia, gave me a prescription for amitriptyline and pregabalin, and a leaflet on what the condition was. Was a maximum of 10 minutes in his office before I was sent on my way.

Age 24: I return to uni, without crutches but still in a fair amount of pain, no IBS relief and what felt like an inability to retain any information in my foggy brain. At least the prescription drugs knocked my out cold at night so I could sleep, but my dose had to be doubled to have that effect.

Age 27: I graduated in the middle of the pandemic. I couldn’t have done this without doing the hours of research into my diagnosis over the past few years to learn what fibromyalgia is, the theories behind it’s cause, the mechanisms behind my pain and the trial-and-error approach I’ve taken to discovering my triggers and what I can do to combat flare ups. It wasn’t easy and I’m not sure I would have known where to look without my degree.

Present Day

I turn 28 in just over a week, I still live with low level pain but it is well managed by the consistent lifestyle changes I have made. Those changes have even allowed me to no longer need the amitriptyline and my dose of pregabalin is half what it used to be. I used to be angry about my body’s lack of cooperation, I was ashamed of my condition and I wish I had had the support and guidance from my medical professionals that I now provide for my own patients.

Example of my Lifestyle Changes

At first it was frustrating that my life seemed micro-managed and dictated by fibromyalgia, but now those changes are my normal.

  • I rarely drink or wear heels because alcohol and high heels cause a flare up of pain
  • I keep a strict sleep schedule, wake up at the same time, go to sleep at the same time every day
  • I exercise regularly, but I know when not to push myself
  • I eat a very healthy diet because junk food causes gut problems, fatigue and brain fog
  • I have a massage or osteopathy appointment once a month to release the tension in my body
  • I make use of talking therapies to vent my frustrations in a healthy way to a neutral person
  • Most importantly I listen to my body. If I’m too tired to fulfill my plans then I will cancel and rest; if I haven’t moved enough then my patient notes can wait and I get myself to the gym

I live a happy, fulfilling life. I run my own successful business that fills me with joy. I rarely have to miss out on anything because of my fibromyalgia so it doesn’t hold me back, but it took a lot of patience and perseverence to get to this point. This is the reason why I am so passionate about helping my patients living with chronic pain – because I wish I’d had someone on my medical team do the same for me when I was undergoing investigation, passed from pillar to post.

If I can shorten somebody elses diagnosis journey, support them and advocate for them when necessary so they don’t need to use their limited energy fighting to be heard then I’m doing exactly what I am supposed to.

Happy Fibromyalgia Awareness Day!

Photo by Camila Quintero Franco on Unsplash

1 thought on “Fibromyalgia: A Patient’s Point of View”

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