National Fibromyalgia Awareness Day is May 12th!

What is Fibromyalgia?

Fibromyalgia Syndrome is a cognitive disorder that affects the central nervous system. This is a disease, and there is no cure. This disease is characterized by widespread musculoskeletal pain, chronic fatigue, depression, fibro fog, and fibro flares.

Fibromyalgia is a central nervous system disorder. The brain is continuously firing pain signals throughout the body. The entire nervous system fully reacts, becoming oversensitive to everything around us! Responding to this unpleasant stimulus, known as “noxious stimuli” is what a person with fibromyalgia feels. Lights are too bright, smells are overpowering, noises are too irritating, heat is too hot, cold is too cold, and touch is too painful.  Happy Birthday, Fibromyalgia…?

Chronic fatigue felt by a person with fibromyalgia is never-ending, even after a full night’s sleep. (Stay awake for three days, doctors report this is what the fatigue of fibromyalgia feels like every day.) Energy is fleeting. This is not just being tired and taking a nap to refresh yourself. It doesn’t matter how much sleep a person with fibromyalgia gets, exhaustion is felt throughout the day. Many individuals have sleep disorders that prevent them from obtaining a deep sleep, this adds to the fatigue already experienced by the individual with fibromyalgia. Should I Leave the Spoon Theory Behind?

Depression is common in people with fibromyalgia. It was found that a person with Fibromyalgia has lowered dopamine level production. Dopamine and the Fibro Brain.  Your sense of well-being is limited. Living with pain and fatigue, day-to-day, will also cause depression.

Fibro fog is a cognitive disorder. This is not like just forgetting someone’s name or where you put your keys, this is a dysfunction that occurs in the brain. The Fog of Fibromyalgia.

A Fibro flare is a temporary increase in pain and/or symptoms of fibromyalgia. This occurs when we over-do things, expending our energy, and at other times for no reason. This will pass, but you will experience flares throughout the entire time you have this disease. Fibromyalgia Flare! Again.

There is a full list of fibromyalgia symptoms listed on this site’s menu, I have only covered the basic ones. Fibromyalgia Symptoms.

~Kimimg_0753

5 Frustrations with Fibromyalgia (by Caz at Invisibly Me)

This is Caz, she writes Invisibly Me… these are the top five frustrations most of us deal with. Many thanks, Caz for being my guest today! 


May is Fibromyalgia Awareness Month (with May 12th being awareness day). Today I thought I’d cover some of the frustrations with fibro. Okay, so the frustrations are potentially limitless, but I thought I’d pick just 5 to explore. Let’s not be greedy now! Perhaps you experience these too, or maybe they will help give an insight into life with this condition.

1. IT’S UNPREDICTABLE.

Plans are made to be broken with fibromyalgia. It’s a different experience for everyone, but you may have some tolerable days, maybe even some good days. You may have unpredictable flares that last anywhere between an hour to several weeks. You may have more unbearable days than you can count. I can’t tell you how I’ll feel in a few hours, let alone tomorrow or whether I’ll be able to follow through on plans for the next week. This can have a knock-on effect on mental health, relationships, friendships, social life (what social life?) and family. Just like with stoma problems and migraines, symptoms of fibromyalgia can be hugely unpredictable; it’s highly impractical, not to mention monumentally frustrating.

2. THERE’S NO CURE. 

Okay, so maybe we’ve already given up hope for a magic bullet of a cure, but it’s disheartening to think this situation is ongoing. It’s frustrating not finding things that can help symptoms, or prevent flares. There’s no cure, and there’s very little help for managing things from day to day. It’s hard to accept that when you just want to feel better and reclaim some semblance of the life you used to have, only to find there’s no way to ‘fix’ the problems, only manage the symptoms. I get frustrated feeling like I’m missing something, frustrated when doctors and specialists say it’s ‘all part and parcel of fibromyalgia’ and therefore nothing can be done. We have to advocate for ourselves and keep pushing if we think there’s more to the story, whether that’s another medication we want to try or other diagnoses/deficiencies alongside fibromyalgia that hasn’t been adequately investigated.

3. THE RELENTLESS CHRONIC PAIN & EXHAUSTION.

Exhaustion is overwhelming. It’s bone deep. Those with fibromyalgia and/or ME/CFS will likely know this all too well, that it’s just not being ‘tired’ or worn out. It’s shattered beyond belief. Brain fog and problems with concentration are part of this and are hugely frustrating; I find the inability to think clearly, make decisions, write, focus in general to be some of the most annoying issues, perhaps because I’ve always been more brain-oriented with writing/reading, rather than sports-oriented or hands-on with my interests. In addition to that, chronic pain can be a longtime companion, forever irritating in its relentlessness, bringing you to tears at times, making you question your ability to keep going.

4. ‘BUT YOU DON’T LOOK SICK’.

It’s an invisible illness. For the most part, we probably look fine. On the outside, we’ll put on a smile and try to keep going, showing the world what we want them to see. On the inside, we may be crumbling. It’s hard to be believed sometimes, by those around us or medical professionals. We can also worry too much about what we think others think. I find it incredibly difficult to use a public disabled toilet for this reason; I look fine and others must think I’m just jumping the queue of the normal toilets, rather than that I need this one because I have a stoma. I’ll be the first to give up my seat to someone else on the bus, and that’s expected as I look ‘fine’, and I won’t ask anyone else for a seat when it’s busy even if I’m in agony and about ready to fall over. It can be a very isolating experience.

5. I FEEL GUILTY. 

I feel guilty for so many parts of this experience. For not doing enough, for not achieving anything with my life. I feel guilty for losing my job due to stoma surgeries and that fibromyalgia changed the playing field once again to keep me out of work. I feel guilty not knowing where to go from here with money/jobs/career. I feel guilty for days when I just get by. I feel guilty for feeling frustrated or miserable about it when I know others have things much worse. I feel guilty for times when I smile.

A purple butterfly, the symbol for fibromyalgia.
The butterfly – The symbol representing fibromyalgia.

Caz at Invisiblyme.com

Fibromyalgia Awareness (kinda)

May is Fibromyalgia Awareness month! So to put a little spin on information and awareness, we will learn today what it feels like to have fibromyalgia using everyday scenarios!

Here are two possible explanations. Which one fits you best? Which one would you use to explain to someone how it feels to have fibromyalgia?

The flu example;

It is getting the flu, and never getting over it! You are on, let’s say… day three. The throwing up has pretty much stopped, and your fever broke. Your body feels like you’ve been hit by a truck and you are sore from just being in bed for so long. You are weak. Every movement takes effort. You are incredibly stiff, even your hair hurts! Just taking a shower is exhausting. Getting dressed feels like some gigantic mystery to solve! (What goes on first? Socks?) The bathroom is still not your friend! You would be relieved if you never have to use the toilet again in your lifetime.

The athlete example;

You had your first practice for the year. (Think of whatever team sport you played or play.) It is the next day… you are sore in muscles you never knew you had! Just taking a shower, hurts. The water feels like it is beating on your body! You think you can walk, but your legs may give out at a moments notice. Just pulling on your jeans feels like your arms may come out of their sockets. Going to the bathroom is literally a painful and exhausting major feat. Carrying a book bag if you are going to class, or a briefcase to work, feels like some modern day torture device. You know you can read and write but retaining information, when you are in this much pain, seems unlikely.

Next Wednesday we will reveal another fibromyalgia mystery! This month only. Please join me for the next installment of Fibromyalgia Awareness (kinda).

What would you like to know about fibromyalgia? I just may answer your question next Wednesday (kinda)!

Live your best life!

~Kim