It’s been 12 months since my GP told me she would be adding a Fibromyalgia diagnosis to my notes to explain my pain and exhaustion. Twelve months of an official diagnosis. I wrote about it instantly as I wanted a timestamp so I didn’t forget and I wanted to document my feelings and my journey.

I planned to cover how my life would change and how I would adapt my life to help me cope with my diagnosis. I got three posts in and that seemed to be the end of that. But I feel now the time is right to start covering in more detail how I live following the initial diagnosis and how I feel.

So has having a Fibromyalgia diagnosis changed my life?

Yes, and No. Surprisingly things are still pretty much the same as they were before. Except now, I can pinpoint why I feel the way I feel and what I can do to limit my body’s reaction to different situations and physical exertions.

So what have I changed when it comes to my Fibromyalgia diagnosis?

Pretty much, most of my life has remained as it was. I am taking the time to give myself a breather and recognise the warning signs of a flareup. Funnily enough, my flareup is very similar to getting the flu. But the next day, the symptoms will have disappeared, and I will be left with extreme exhaustion and/or pain. Knowing the warning signs gives me a chance to prepare for what is coming and make the necessary changes to my routine. Be it allowing myself longer in bed of a morning, reducing what I do the next day or simply spending the evening lying in bed.

Sometimes, pushing through a flareup can do me wonders. Actively avoiding that afternoon nap when it will be your third that week can either set me up for a fall or help me break the cycle. It’s a 50/50 chance, but with frequent yet short flareups, sometimes I need to not give it what it wants which is my life! My longest flareup came in January and lasted for the whole month. Since then, I had frequent small ones mostly triggered by the intensity of my working schedule, thanks to COVID-19. July saw a mini flare lasting a couple of days ending a four week run of no significant fluctuations in pain.

I am taking Mirtazapine. I don’t take any pain medication due to my body reaction to strong pain killers. The Mirtazapine helps me not to let the pain and exhaustion affect me too much mentally, and one of the side effects is that it regulates my sleeping patterns also. Meaning I do get more a regular night’s sleep and don’t stay awake too much of a night.

Recently, my GP has increased the dosage; only time will tell if I remain on this medication or not.

Mostly the one thing that has changed since my Fibromyalgia diagnosis is my attitude. I still have those days where I wish it weren’t happening to me. Or that I get annoyed about not being able to do what other people do. However, accepting my limitations no matter how small helps me to move on with my day. As does stopping with berating myself for not being able to get through a day without a nap despite having had 11 hours sleep the night before.

What Have I Learnt About Fibromyalgia?

That is isn’t content with taking away my physical ability but my mental capacity too. Not being able to think clearly, forgetting words, and pretty much everything. It is unforgiving and relentless, and just when you feel you have a handle on it, it will throw you a curveball. Getting my Fibromyalgia diagnosis wasn’t a magic cure, nor was it the beginning of me being able to contain, control, or improve my mental and physical health. It was a name for my many, many ailments and in some ways al life sentence with no parole.

The more I learn about it, the more I read and take from others experience with it, the more my confidence in my future health dwindles. But for now, I am grateful life can go on as usual. That I can still go to work, write my blog, and live my life despite my condition. My main concern is that my willingness to put new medical issues down to ‘the fibro’ and dismiss them will mean I could miss something significant. The same goes for the GP’s I see too. Their willingness to overlook and dismiss my concerns and tell me ‘that is the best we can hope for’ worries me that things could be ignored down the line.

Someone once asked me if Fibromyalgia was all in my head. Was it something I imagined. In the absence of medical diagnosis and confirmation of pain or root cause – I have arthritic and sciatic type pains. But, I do not have sciatica or arthritis, to me, the pain is real, but to others, it screams hypochondriac. Of this, I am well aware.

If you take anything away from this post. I hope it is that you are less dismissive of the next person you meet with Fibromyalgia. That you legitimise what they are going through and don’t wave it off as them being dramatic. Because I promise you, not one person on the face of this earth wakes up each day and enjoys the pain and anguish that this condition can cause.

How has a Fibromyalgia Diagnosis changed your life? Or has nothing changed for at all?