I saw the above picture being shared over and over on many chronic illness/pain and fibromyalgia communities. I often share my belief that it is okay to have days where your chronic condition wins. Trying to find relief and battling our own bodies day in and day out can be exhausting in itself. I am definitely struggling with this lately myself. How do we keep pushing forward when there is no cure for fibromyalgia? Some days I wonder how I do it myself – reality…we are not given a choice. However, it can become very discouraging and daunting at times.

I was recently scrolling through a fibromyalgia advocate’s Facebook page and came across a few facts about fibromyalgia. I am unsure where these stats came from, but from a 2021 post she shared… “Of the currently available medication treatment for fibromyalgia, only 40% of those with this medical condition find mild to moderate relief of their symptoms.” To put this into further perspective that means out of 22,200,000 people world-wide with fibromyalgia only 8,800,000 find any relief! That leaves 13,320,000 million with fibromyalgia with NO relief at all for their symptoms. I am sure the stats read a bit different now as we are nearing the end of 2023 and these stats were from 2021 – however the point is so many people world-wide are left without relief. No break from fibromyalgia.

I am one of those 13,320,000 people with fibromyalgia who has found little to no relief from many of the symptoms. I have tried many different strategies to try to diminish symptoms and improve my overall quality of life. I think health care providers often forget that pain and fatigue are not the only symptoms we suffer head on from fibromyalgia. Did you know fibromyalgia has over 300 possible symptoms? Yes! You read that right. Most likely a person won’t ever have 300 of the symptoms at one time ( or even develop all 300) – but many symptoms begin to pile up on top of one another and we are left scrambling to remedy these symptoms (without much guidance). The pain and fatigue is enough to deal with on their own. I’ve once noted over 50 fibromyalgia symptoms in one day. It is near impossible to try to even diminish 50 symptoms at a time! These are the days I allow my chronic condition to win. These are the days I shut the world out and sleep my day away because trying to remain put together and functionable are just not realistic goals. If you haven’t already read my blog post about how having a chronic illness/condition can become a full time job, you can read it here!

I often say that fibromyalgia will not win nor define who I am, but lately I feel like it has won. Some days I feel like I am wasting what little energy I do have on trialing and erroring different strategies to maintain fibromyalgia – in most cases the strategies back fire and I find myself bed ridden for days on end. Some days I stop and wonder if I should just enjoy the good days instead of worrying about making sure I add in exercise or another management strategy because that is what the medical system expects. Maybe instead – I should be out having lunch or having a coffee with a friend. Many of us who live with fibromyalgia feel like we are just existing and not really living anymore.

For those of you reading this who do not have fibromyalgia – experts state that in order to understand the severity of chronic fatigue alone that fibromyalgia can create – you must stay awake for three consecutive days. 72 hours without sleep and continue on with your daily routines. Signs of sleep deprivation set in after 24 hours of no sleep and become evident to people around you. Here is a fact: after staying awake for 24 hours similar cognitive effects of a blood alcohol level of .10% begin to take place. That is actually higher than the legal blood alcohol level to drive! Sure puts things into perspective. Here is a breakdown of what happens to ones body after 72 hours of no sleep.

Usually I write to inspire and encourage everyone who reads my blog posts. However today’s blog I decided to write realistically and from the heart. After all a blog is meant to be realistic and personal. I am sure many of you reading this can relate 100% to being so discouraged at times. Negative thinking takes over and it is difficult to pull ourselves out of this cycle. I always say – it is okay to have bad days – just don’t unpack and live there! Gentle hugs to all who need it. Don’t forget – no matter how bad of a day you have or situation there is always something yo be grateful for ( no matter how small it is).