Living With Difficult Fibromyalgia Symptoms
For Fibromyalgia Awareness Day 2021 on 12th May (May is also referred to as Fibromyalgia Awareness Month), I thought I’d take a look at some of the most common & most difficult fibromyalgia symptoms to live with.
After my 2015 surgery, when my health took a rapid nosedive, I started developing an array of bizarre symptoms. Fast forward to 2021, and I do thankfully have some answers. Debilitating nerve damage, for instance, that affects my back and hips. A likely foreign body autoimmune response to implanted material in my body. Then there are things I can’t explain, like the chronic migraines that eradicate a large portion from 5 days each week.
Other symptoms, from brain fog and fatigue to all over body pain, have granted me fibromyalgia and ME/CFS diagnoses. I won’t go into the issues I had around accepting these kinds of diagnoses, but I thought I’d give a little look into some of the things I most struggle with when it comes to living with fibro.
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Chronic pain is a key component among the fibromyalgia symptoms most commonly experienced.
Aside from the pain with an identifiable cause from nerve damage, I have inexplicable all-over pain. From stiff and achy, to feeling I want to smash a window with interminable pain, it can affect what you’re able to do physically and impact you psychologically.
I remember one rheumatology appointment where the specialist started poking around different parts of my body, and I’d keep going ‘ouch!’, not a clue what she was doing. I thought it odd that lots of places were painful to only slight pressure but I’d kept thinking maybe I was just getting ‘weedy’, as my dad would say. Turns out she was looking for 18 ‘tender points’ or ‘trigger points’ that are often particularly painful for those with fibromyalgia. I believe I had about 15 of those points ticked.
The pain itself is hard to describe and it can vary, from body part to body part and from day to day. Burning, aching, throbbing, sharp. I find muscles ache, my joints are stiff, even my bones can feel like they hurt.
I take Tramadol on a daily basis regularly throughout the day for my chronic pain, including fibromyalgia pain. It doesn’t get rid of the pain by a long shot, not even anywhere close. But it does help to make things a little more manageable so that I can get the basics done. I was incredibly reluctant to ever use it but I was left with no choice. I can’t function without it and I know I’m not alone in that.
The misuse of the ‘opioid crisis’ and changes to healthcare as a result are seeing such life-saving, last-ditch-option medications removed or reduced for chronic pain patients. But this is very real pain. It can’t be magically quelled by positive thinking or meditated away. Such steps against chronic pain patients makes me sick and angry. But that’s an argument for another day!
I have never been one to be afraid of a little pain, and I’d always considered my pain threshold fairly high. I was a tomboy as a little kid and my dad raised me with the ‘get on with it’ approach. My folks didn’t ‘do’ pain medications or other things they’d see as ‘fuss’. You’d take whatever injury or problem, deal with it, let nature run its course and get on with life. I don’t mean to make my parents sound harsh because they weren’t, but there was not even a whiff of chronic illness life pre-my chronic illnesses.
I remember plenty of minor injuries over the years, from a basketball pole and hoop being dropped onto my head in secondary school, to being pushed down concrete steps in high school and ripping a cut several inches long down my thigh. I never much cared, especially when you know it’s short-lived pain.
I think therein lies one of the issues. It’s rather different when you know a pain of any level is temporary, like cutting your finger, hitting your head on a low ceiling or getting an injection. It’s another matter entirely when it is ongoing, with no end in sight.
Fibromyalgia pain is chronic. It’s a long term deal. I experience pain every single second of every single day. Although the most debilitating pain for me is from nerve damage, fibromyalgia pain is also debilitating, as well as being incessant, overwhelming and infuriating.
If you can’t distract yourself from it, you risk being driven to the edge. Imagine someone poking you with the pointed end of a knife over and over and over again. Not just for 5 minutes, but every second for years, perhaps for the rest of your life. That’s enough to make anyone lose their shit.
Fatigue is often a significant aspect of fibromyalgia, though some people might also have a separate ME/CFS diagnosis in addition.
This isn’t about being tired or needing a bit of sleep. This is bone-deep exhaustion. This is the sort of fatigue that doesn’t waver with getting rest or doing exercise or popping some vitamins.
I know when things get bad because I can lie there, pretty out of it, and wouldn’t be able to move even if the house were on fire. Other times it’s general fatigue that follows you around, weighs down your limbs, slows your speech and your thinking, drags you backwards and downwards. It might be like walking through quicksand or not being able to walk at all. It might slow down your activities or stop them altogether. Sometimes you can push through it, but the payback afterwards could last for hours or days thereafter.
I push through it more often than not, especially during the pandemic when I’ve had so much to do and I have to get things done. When there’s a small window where I’m capable of doing things, it takes everything in me to get as much done as quickly as possible because you don’t know what you’ll be like later on in the day or tomorrow. You take the time you have when you have it, but that’s not the best way of dealing with it. Sometimes there just isn’t a choice.
Pacing is often thought to be the better way of managing fatigue and chronic pain, so while pacing can be immensely frustrating, it does help to keep yourself on a slightly more even keel. It’s just not always possible to do it.
There are also times that no amount of pushing through it will physically work anyway and your body renders you to bedrest or to sitting propped up, staring into space with no ability to do anything but wait it out.
Cognitive dysfunction is a common feature for those with fibromyalgia. This is a particularly frustrating one for me as someone who used to be more academically minded. I used to study endlessly, I’d have to remember a thousand things for my Psych degree exams, I’d be able to write logically and accurately for hours on end. I used to be able to form concise arguments quickly, come out with witty quips in nanoseconds. I used to be able to remember what I went upstairs for only two seconds ago.
Fibro fog can pertain to a few things. There’s the general ‘fog’ where things are rather fuzzy up there. You can’t catch the words you’re after on a regular basis. You can’t remember things you typically should be able to remember. You feel you can’t keep thoughts in place or easily accessible. You’re not quite ‘all there’ and firing on all cylinders, even if you were consistently on fire and on the ball pre-fibromyalgia.
I’ve never really been good at anything other than the more cognitive side of things. To feel those aspects have been taken away to such a degree was, and still is, soul-destroying. What am I left with? ‘Not a lot’, is what I think a lot of the time.
I make a lot of mistakes. I write and it’s littered with errors. A lot of the time I can’t write at all, and forcing it just makes it worse. You have to wait for the moment when your brain is engaged just enough to make it possible, and that doesn’t really fit with daily life when you need to get things done there and then, not whenever it suits your brain. Fibro fog can also involve confusion, again with a general sense of being muddled or not really knowing what’s happening or what day it is.
My concentration is shot, so bye bye to the years I spent sitting studying or writing or holding a lengthy deep-and-meaningful conversation. I’m lucky to get 20 minutes of solid concentration. It just means I flit between things continually or need to regularly break and either come back to what I was doing, or give up until another time. This is partly why things don’t get done anymore, because I get little bits done over different tasks when it’s not possible to focus on one thing solidly and effectively.
My memory is not what it used to be, both for long term and short term stuff. I can’t tell you how many times I forget what I was doing as I was doing it. That can happen to all of us, but with fibromyalgia these occurrences seem to multiply, further muddled by the fog and poor concentration. I’m sure I had another point to make her, but I can’t for the life of me remember what it was!
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Fibromyalgia Awareness Day 2021 : Sharing The Experience
Pain, fog and fatigue can have a myriad of knock-on consequences. They can affect not just your day to day but your relationships, your social life, your work, your self-esteem, your confidence and your mental health. It’s unsurprising that many with such a chronic illness face mental health issues like anxiety and depression, or that many lose their social lives, friendships and jobs.
I think that sharing our experiences can be helpful not just for the sharer, to let out what they’re going through so it doesn’t get pent up in a ball of frustration, but so that others going through similar can realise they’re not as alone as they may feel. It’s also good for general awareness, especially for those who haven’t experienced something like fibromyalgia themselves.
Prior to living with fibromyalgia myself, and I hate to admit my ignorance here, but I never would have quite believed it. I never could have imagined such symptoms and how debilitating it can all be. The experience is unique for everyone but there will be many aspects of living with this invisible condition that people will share. If you’re struggling, then please know that I see you, I hear you and I ‘get it’.
Fibromyalgia is not a choice, you just have to do your best with the hand you’re dealt, focusing on the things you can do rather than the things you can’t, and getting through it however you see fit. We’re all different, we all cope differently, and we’re all have unique circumstances and situations in which to deal with it.
As is the case with any condition, you never really ‘get it’ unless you experience it for yourself, but it’s not something I’d wish on my worst enemy.
Do you live with fibromyalgia? What do you find to be the most difficult fibromyalgia symptoms you deal with?