Experiences from a Life with Fibromyalgia

I live with Fibromyalgia – It is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals.

Fibromyalgia was with me for the last few years but it took many years and doctors to even get a proper diagnosis. Many countries do recognize it as an invisible disability.

How does an invisible disability manifest itself? In multiple ways in my day-to-day life. For instance, I sometimes do not recognize faces or names even if we have met recently, or I might mistake you for someone else — this is because my condition affects my short-term memory and my facial recognition also sometimes isn’t accurate. Forgetting names is a common embarrassment and I think one of the first symptoms along with mild pain that began for me about a decade and a half ago. These things make Fibromyalgia a social disability.

A symptom that is known as fibro fog/brain fog is a cognitive dysfunction reported by many people with fibromyalgia. Its symptoms include difficulty with concentration, memory deficits, and confusion. The reason for the changes in brain function with fibromyalgia is not clearly understood. Hence, I might often forget to tell or remember something of huge importance and need to put written or phone reminders of almost everything. Sometimes in my writing work I go completely blank in the middle of a sentence as if my entire vocabulary has been wiped out.

Partners and friends have often complained that sometimes I insist I haven’t watched a movie, or been to a place with them because I did but I might have completely forgotten every bit of it. So, while they feel I am deliberately annoying them or not giving importance to my memories with them, my fact is that it all got erased from my memory.

Since my condition is musculo-skeletal with no “treatment” per se but only pain management, doctor’s insist on massages and exercises. But it is a vicious circle of sorts – my muscles remain stiff when I can’t stretch them, when I do exercise, they become sore. I can’t run, or walk swiftly, also can’t do rigorous exercises and physical labor. Sometimes holding a spoon or a pen is a problem, don’t ask how many times I haven’t been able to properly sign cheques.

Also, multi-tasking is not my thing any more, I have lost the ability to process multiple information at the same time, noise even mild like music on TV or neighborhood loudspeakers make me irritable and restless because after Fibromyalgia set in I lost a minor percentage of hearing too in one ear.

Deadlines are difficult to meet because either I have forgotten or have no energy to even write another sentence due to my chronic fatigue and/or pain, pain is now a constant in my life, because of the condition and also because of injuries I incur while cutting, chopping, picking objects etc.
Sometimes I have severe myofascial pain so my jaw would feel as if it is frozen or locked and I won’t smile at you or laugh at your jokes, which might make you wonder what I snob I am, bit look at my eyes maybe you will know!

Digestion sometimes gets affected too. I have limited all activities in my life because nobody understands that I am constantly fighting invisible pain.

This is a spoonie life! I am a spoonie!