How The Girl With Five Lads Functions With Fibromyalgia

Today Ness from The Girl With Five Lads shares how she treats Fibromyalgia.

Please remember that Ness and I are not medical professionals and cannot give medical advice. We are just sharing our experiences and opinions.

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When were you diagnosed with Fibromyalgia?

I was diagnosed in 2013 after I had a really bad bout of Flu, this was not unusual for me as being an asthmatic. But this time it never cleared after Prednisolone, it lingered. I can still remember the day I realised something was so different. I was walking home from the shops with tears in my eyes, I felt so weak and could not carry the shopping bags. The tears trickled down my face when I got home as I knew myself something was wrong.

I went to the doctors and explained that I did not feel right. It is hard to tell someone what is wrong when you do not know yourself. I was weak and hurting all over. My face hurt, my fingers hurt and I could not do the things I once could. All I wanted to do was sleep and lay down.

The doctor was lovely, she agreed something was wrong so ordered a full blood screen to see what was happening inside of my body. I was getting very worried. I still felt awful as I had endured the flu for three months now.

My GP decided to take action and life became a series of tests and elimination. Eventually, Fibromyalgia and Myalgic Encephalomyelitis (M.E.) /Chronic Fatigue Syndrome was diagnosed by the hospital.

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How did you treat it in the beginning?

The doctor looked at what medication would be best to treat Fibromyalgia.
I was given a name, a label for this illness. Unless you walk in a person’s shoes you will never understand how important a diagnosis is. Uncertainty is destroying so with a name you know who you are fighting. I started to read everything I could about fibromyalgia.

During this time I was also referred to the physiotherapist and for CBT counselling. This period was difficult as my doctor was trying to refer me to every department possible that she thought would help but it was just added stress in waiting rooms and appointments left me drained.

At this stage, it never really hit home that I was not going to be cured. I presumed I would be ill for a while and it would all then go back to normal.

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I battled on and hid my illness for the first year or so from people outside of my close family by taking the maximum dose of Tramadol for pain. No one really knew that I was unwell. It is an invisible illness so I still looked the same. People would see me in public and then I would slip away to endure my flares. It became a horrible cycle of flare after flare as I tried to masquerade as normal.

I struggled so much trying to keep up and not let friends know how much I was suffering. Tramadol held me together but the fall afterwards was massive. I was so unwell, exhausted and in pain. This cycle of living from flare to flare as I fitted life in between drained me so I took time out to heal.

If your treatment has changed, why and what did you switch to?

I then started to balance my symptoms so well. I embraced the good days and accepted the bad ones. I introduced meditation, scheduled sleep rests during the day. Rather than pushing through pain to result in a flare, I learned to listen to my body.

I allowed myself to grieve the person I was before fibromyalgia and I learnt to accept fibromyalgia as an integral part of my life, this included accepting what aids would help me with dressing, bathing, mobility etc.

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And lastly, how does your treatment help you function?

My life is very different now compared to when I was first diagnosed, I am genuinely happy and that is the main thing. It was so draining taking so much medication then dealing with the flares and side effects. Acceptance is the key and living from day to day enjoying the small moments. Combining natural methods for relaxation really does help pain relief. Also keeping my circle very small and positive has a massive effect on management as stress has a huge impact on symptoms.

Finding my own tribe within the chronic illness community helped me feel less alienated and alone.