Sometimes when people find out I have fibromyalgia, they ask me what it is like, it’s not well understood and I certainly didn’t know much about it until I was diagnosed, so I thought I would take you on a (hopefully humorous and not too self-pitying) peek behind the curtain, of my experience of fibro. For the record, I am not a medical professional, this is not medical advice, it is simply me describing how I feel.
I am lucky that most of the time I stay in remission. I am very fortunate because I am able to work only part-time. This allows me not to “over-do-it” but there are still times I do, or stress or sugar (which I avoid but I sometimes lose my willpower) cause a flare-up of my symptoms. And that is when my disorder rears its ugly head. Fibromyalgia has a “you don’t decide what you get to do with your body, I do” attitude. And when it takes over, bam! For the next week to 10 days, I can barely keep up with the basics, climbing stairs causes what I like to think of as “screaming pain” in my legs, simple things like folding laundry make my shoulders and arms ache and my energy level is zero. It’s like the day after a terrible flu when you could drag yourself to the kitchen to make a bowl of soup, but that will be all you manage that day. So, on a good day, I carry on as per my usual lowered-expectations pace and on a particularly bad day, I may be reduced to tears shampooing my hair. But enough woe is me, let’s carry on with a lighter perspective, shall we?
I experience three elements of fibromyalgia. Pain, fatigue and brain fog. Much like my children, I can’t pick a favourite! They are all special. Let’s start with pain. I am always in pain, it moves around but it is always there. Sometimes worse, sometimes better, often in my thighs but sometimes it surprises me with a visit to the shoulders, joints of my hands, back, feet, neck, headache. Did you ever watch the old 70’s Pink Panther movies? Remember his “long-serving manservant” Cato, whom the inspector had instructed to sneak attack him whenever possible? Well, it’s kind of like that, you never know where it will strike, only that it will. And I enjoy it every bit as much as Inspector Clouseau enjoyed those attacks. Sometimes, I don’t know if it is just the pain that comes along with age and I have to ask my husband because I don’t want to sound like a whiner to anyone else. The other day I asked him if it hurts him to get dressed. He said no, not unless he’d hurt something. So, that’s just the fibro I guess. Fun times.
The fatigue, oh the fatigue. If I could replace only one symptom, this would be it. I can deal with the pain and the embarrassment and frustration of brain fog. But like Scarecrow in the Wizard of Oz, this Dorothy misses her energy most of all. I can tell you with much gratitude that the fatigue has improved greatly since I had a sleep study and discovered that I was kicking in my sleep. And while all 3 of my sisters (who have had the misfortune to have shared a bed with me one time or another) and my husband (who has the misfortune to share a bed with me nightly) were not surprised by this information, they were surprised to discover that I was kicking 94 times an hour! No wonder none of my sisters ever wanted to get stuck sharing a bed with me! Thankfully, diagnosis meant meds and that has meant better sleep!! Halleluja! I highly recommend asking your doctor for a sleep study if you suffer from fibromyalgia, studies show there is a link.
What does the fatigue feel like? For me, on a good day, it feels like you are moving through water. Everything is just harder and more tiring and you simply can’t do all the things you want to do. That lack of control is tough for me. Also, “tiring” is probably a bad choice of words, when a normal person says they are tired, they might mean they need a good night’s sleep and they will be back to normal. When a person with fibro says they are tired, what they really mean is they are exhausted, completely burnt out or even “dead-dog tired” an expression I came up with one day, before diagnosis when I was trying to express how tired I was. On a bad day, as I said, it’s like recovering from a really bad flu. Incidentally, they call it a “flare.” Come on now people, we can do better than that! Flare indicates upward motion, bright light, energy. What about calling it a “swirling rotten” or “sucks to be you”
Some people with fibro call themselves “spoonies” (better than fibroids I guess??) The name comes from the idea that we are given a number of spoons (amount of energy) daily. The average person gets 10, spoonies get 3. So while I might be able to join my friends on an awesome weekend, I will enjoy it but I will pay. Say we have so much fun we use up 10 spoons on each Friday and Saturday and head home Sunday (using 7) tired but happy. Regular people used up almost all their spoons, but no worries, they get 10 more tomorrow. Since Fibro sufferers only get 3, we have to borrow future spoons. I need 27 spoons for the weekend so, I will use all my spoons and borrow all the spoons from the following 6 days to make it happen. But wait, I can’t have a day with NO spoons, I need at least one for basic functioning. So I can only borrow 2 spoons from future days, meaning I borrow spoons from the following 9 days. I can do fun stuff, it just that I will be exhausted and sore for the following week and a half. Thank God fibro doesn’t charge interest!
While exhaustion is my least favourite symptom, (wait, I said I don’t have favourites!) brain fog is probably the most embarrassing and the most frustrating. You see, I tutor students, I need to be on top of my game. If I am working with a high school student and my brain decides to vacate the premises, well, that’s just unacceptable really. That’s why I keep notes, sometimes I can’t trust my memory and that is a terrible feeling indeed. Sometimes, I just do the funny kind of things people do when they are tired. Like, pouring the coffee water on the grinds instead of into the reservoir, or putting the milk in the cupboard and the cereal in the fridge. We’ve all done these silly things and can laugh at ourselves. Sometimes I have no nouns, sometimes I have no adjectives. Twice this week I couldn’t come up with the word “relative” as in “it’s all relative”. Frustrating. And it makes me look dum dumb. Sometimes things are more serious, like leaving a pot on the stove, or the iron laying down. (Mum, if you are reading this I have done neither of these things) (yes I have) But, now I recognize when things are bad brain-wise and I set timers or just put off anything dangerous, like the use of power tools until my brain decides to waltz back into my head, lazy from vacation and indignant that I should want it to stay put.
Finally, a couple of unfortunate things. One, people think it’s made up. Unfortunately, there has been a stigma around the disorder. Seriously, it was once grouped with several other disorders and known as “Hysteria.” Then they decided it was real but caused by the nervous system overreacting to pain impulses; which still sounds too much like “it’s all in your head” to me. People think it’s an excuse to be lazy, that you are making up or exaggerating your symptoms. Shameful stuff like that. Before my diagnosis, a friend mentioned his sister had fibro, he then went on to say it was diagnosed, real-deal fibromyalgia. Sad that he felt he had to say that. If you said your sister had diabetes, you wouldn’t need to elaborate that it was medically diagnosed. The second thing and I’m on the fence about how unfortunate this is, but fibro is invisible. What I mean is, you don’t look sick. (Incidentally, if anyone ever tells me “you don’t look sick” they are getting a throat punch) So no one would understand why I sometimes walk like a granny or why I only work 12 hours a week, just by looking at me. I look healthy. Would I rather look sick? Probably not, but you get the idea. I don’t want people incorrectly assuming I am lazy or a whiner.
Well, that is my experience with fibromyalgia, Ohh, except I forgot to tell you one of the diagnostic tests for fibro. They poke you in all the spots that REALLY HURT. There are 18 of them and they see how many REALLY HURT. Isn’t that awesome! With all the technology we have, all the advances in medical science, the test for fibro is “Does this hurt? Does this hurt?” And lucky for you, if you have fibro that is, the answer is “YES IT F*&%ING DOES! STOP POKING ME IN ALL MY SORE SPOTS!!” and amazingly, these spots continue to ache for a day or two. So if your doctor suspects you may have fibro and you get sent to a specialist and you wait 3 hours to see him every time and he runs every test in the world (27 vials of blood on one lab visit -no lie) and they all come back negative and finally after ruling everything else out (Thank God, because there are some nasty options out there) they finally decide to test you for fibro, take my advice and decline.
