“Fibromyalgia: a chronic (long-lasting) disorder that causes pain and tenderness throughout the body, as well as fatigue and trouble sleeping. Scientists do not fully understand what causes it, but people with the disorder have a heightened sensitivity to pain.”
Apparently, I need to preface this by saying that not everyone experiences the same thing with fibromyalgia. What I have written here is what I experience. Everyone will have a different experience, with different levels and types of pain. All of this that I have written is in addition to my regular base levels of pain. I live with pain 24/7. It does not go away, ever. Typically I can ignore it for the most part, because I’m so used to it. My day to day pain is usually about a 4 or 5 on a scale of 1-10. (This is going to be a much longer one, heads up.)
Arguably my worst chronic condition, fibromyalgia is hell. The constant pain, the flares of intense agony, the brain fog, and the sheer exhaustion that I live with is hell. But the worst part about it is probably the ableism that I face.
“Change your diet.”
“You need to exercise more.”
“All that sitting around is bad for you.”
“Just push through the pain.”
“You’re too young to be so broken down.”
You don’t fucking say.
I wish it were that easy. I wish I wasn’t more broken down than a 90-year-old grandma. I wish I could get out there and do the things I’m supposed to be doing at this age.
I wish I could be pain free for a single day.
But the reality is, that’s not my reality. That’s not in the cards for me. My body is broken. My body is failing. No amount of diet and exercise, or wishful thinking and willpower, is going to change that. There is no cure for fibromyalgia. They don’t even know the cause.
The reality is, my fibromyalgia is getting worse. Year after year, my pain is getting worse. My brain fog is getting worse. My ability to clean my own fucking house is getting worse.
My ability to function as a normal person and contributing member of society is getting worse.
I have to be careful how much I do in any given day. If I push myself too hard, I’m out of commission for up to several days after. Take yesterday, for example. Yesterday was a good day. I had a little bit of extra energy by the time I got home from work. I needed to cook up some food to take for today’s shift, so I threw on a pot of rice. But wait. All my plastic containers were dirty, how am I supposed to take my lunch? Time to do dishes! I scrubbed up about a sink’s worth of dishes, emptied the handful of dishes in the dishwasher, and reloaded it. It was about half a load’s worth of dishes and took less than 10 minutes to scrub everything. By the time I was done, my back was aching. I had paperwork to scan and submit, so I sat down to get that done, when my cat came over and began screaming his little head off at me. Shit. I meant to do his litterbox before I went to work, guess it’s time to do that. Get the paperwork scanning and head to the bedroom to do the litter.
I’m pretty much physically incapable of squatting because my knees are so bad. I can’t stand up from a squat, and I usually end up dislocating something. Have you ever popped your kneecap? Can confirm it is one of the absolute worst sensations there is. So when I do the litter, I have to bend at the waist, with my face right over the box, getting all the dust and shit in my face. Disgusting, I know. I despise cleaning litterboxes, but I would rather do that than not have my cat. He keeps me going on my worst days. Doctors note or not, he absolutely is my emotional support animal. Anyway.
By the time I got the box all scooped out, my back had completely seized. I struggled to stand upright again. I managed to limp my way out to the kitchen to toss the bag of shit in the garbage, to be taken out later. No, limp isn’t really the right word. It’s more of a shuffle. My back seized so intensely that I could barely get my legs to move, my hips were welded in place. Just another Thursday. I shuffled back to the bedroom, and poured the fresh litter in to fill the box back up. My cat, Haru, helped of course, by climbing into the box to pee as I was attempting to fill it. He’s always helpful like that. He’s trying his best, ok?
Get cleaned up, finish up the paperwork. By this time, the rice is done cooking. I pull the pot out of the cooker and let it sit for a few minutes, before shoving it in the fridge as is. And wouldn’t you know it, I forgot to unpack my lunch bag. It was a real challenge, let me tell you. My back had finally started to relax enough that I was able to walk mostly normally again, but now I needed to bend down to pull stuff out of my lunch bag and put it in the fridge. Mostly drinks, really. I love having a variety of drinks to choose from, so I had a Peace Tea, an Iced Tea, Sunny D, a 1L carton of milk, a Gatorade, and two 1L bottles of water. I’d drank half of what I’d taken with me.
Now, that might not seem like much to you, but remember when I said I can’t push myself too hard, and do too much stuff? Yeah, I pushed myself. Just unloading those drinks from my lunch bag into the fridge was enough to make today suck. By the time I crawled into bed, my back was having a full-blown seizure.
I have such a high pain tolerance that all 5 of my tattoos tickled. But when my back seizes like that, it’s enough to make me tear up. 20 minutes of physical activity, simple tasks that most people do on a daily basis, and I was already on the verge of crying from how much pain I was in.
This right here is why I hate it when people say that kind of shit to me. It’s like, do you think I live like this because I want to? Do you think I’m not doing absolutely everything in my power to avoid this? Do you think my house is a mess just because I’m lazy, and I enjoy living in the mess? That I don’t want to clean? (I mean, I don’t think anyone actually wants to clean, but when your house is messy, it feels good to clean, right?)
As I sit here typing this, my back is seizing again. Not intense like it was before, but I can feel it. Pulsing and tensing, moving up and down my back, into my shoulders and my hips. It’s right around this time that my sciatica tends to flare up, and the knot between my spine and scapula swells, making my left arm go numb. I’ve tried so many different treatments for this knot. It was diagnosed as a radiculopathy, and required physiotherapy a couple years ago because my left arm was either numb, or in utter agony. I also get Trigger Point Injections (TPI), which is a little cocktail of freezing and saline that they shoot into the muscle. It is unbelievably painful, but it helps a little. Ideally, I’m supposed to get them every 4 weeks, but with my job, I work out of town half the year, and am unable to get them as often as I need them. And when I say they’re painful, I mean they’re an 11 on a scale of 1-10. I’ve only hit 10 a couple of times, thankfully, and I was so sick I had to take a 3 month medical leave from work, and woke up from a dead sleep sobbing because the pain was so intense. Some of the TPIs are worse than that, namely the knot.
In the summer, I do what I can on my own. I managed to find a local chiropractor who’s been helping immensely already, and I make sure to take extra good care of myself. Ideally, I need between 9 and 10 hours of sleep every day. I struggle to stay hydrated because I hate the taste of water (hence the multitude of beverages), and I do as best I can to make sure I’m eating somewhat healthy. I often take bags of grapes with me to work every day, and I’ve come up with some super simple and quick salads that I can whip together in under 5 minutes, that I actually enjoy. I have my stretches that I do when I can/when I remember/when I have the energy, or spoons.
If you’re unfamiliar with the spoon theory, I would highly recommend looking it up. It explains it much better than I can. You can find the original story here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
When I go home during the winters, I have an entire team of people who help me. I’ve been able to stop seeing about half of them now, since I’ve gotten as much information and strategies from them as I can, but I still have a number of medical professionals that I see. During the winter, my schedule is absolutely ridiculous with the number of appointments I have, just to get my body into a somewhat decent shape again before I leave for the summer. It’s only a band aid fix, though.
I was referred by my family doctor to the pain clinic, who set me up with a therapist, dietitian, exercise therapist and nurse practitioner, with a case manager to help me balance it all. Additionally, I found an absolutely amazing massage therapist, and as much as it hurts at the time, I find it really does help, at least for a little while. I’m also in and out of chiropractic and physiotherapy appointments, and I’ve tried acupuncture, which unfortunately just made things much worse.
When I say I’m doing everything possible to lessen my condition, I mean it. The chiropractor I recently started seeing also got me set up with some orthotic inserts for my shoes, to try and help with my knee, hip and back pain. I haven’t really noticed much of a difference, but my feet don’t cramp every day when I try to sleep anymore, so that’s a huge win.
I also consume a ridiculous amount of weed. My body is failing so bad that I have some pretty severe asthma, and am completely unable to smoke, but thank the gods for edibles. If I’m not working, or going to appointments, or meetings, I’m usually high. If I don’t have to go anywhere, I’m high. Is it a great way to live? Hell no. But it’s how I cope. CBD alone doesn’t do anything. I don’t notice any effects. So I take a high dose of CBD with a low dose of THC. I’m talking like a 5 to 1 ratio. My regular gummies are 25mg CBD and 5mg of THC. I’ve been having a hard time finding those ones lately, so I’m using a 10mg CBD and 2.5mg THC kind. They’re not as effective, but I’m managing to get by for the most part.
Now, you might be thinking “wow, that’s a lot”, but I’ve barely even scratched the surface of what my fibromyalgia looks like. For the most part, everything I’ve mentioned so far is on a good day. Let’s get into the bad days, shall we?
In my last post, I mentioned one type of “fibro flare”, as I call them. But there are several. Honestly, whenever I list them off, I end up forgetting one, then it shows up within a couple of days like “did you forget about me? Let me remind you who I am!” I’ll try to not forget any this time, so let’s see.
1. Full Body Flares: Pretty much exactly what it sounds like, my entire body is in so much pain. This type is primarily muscle, though the tensing of all my muscles tends to also cause my joints to hurt, sometimes even dislocate. Often results in migraines as well, as my neck gets so incredibly stiff. It’s like all the pressure I feel in my body climbs higher and higher in an attempt to release, and my skull feels like it’s going to explode from the pressure trying to get out. It's about as pleasant as it sounds.
2. 2. Nerve Flares: Also pretty much exactly what it sounds like. My entire nervous system is on fire. If you’ve ever had nerve pain, pinched nerves or sciatica, you know how painful it is. Now imagine pretty much every nerve in your entire body hurting at once. It is utterly excruciating. I think I’ve said all I really need to on this one.
3. Joint Flares: You know, they’re pretty much all exactly like they sound like. For joint flares, it’s primarily my knees and elbows, plus my hands and wrists, occasionally shoulders. Though my shoulders are more so from that radiculopathy I mentioned previously. These are by far the most common type of flare I get. If I move the wrong way, sit the wrong way, or the weather changes, I flare. My hands are especially bad— I have to crack them every few minutes, or they get stiff and the pressure builds really bad. It is absolutely not healthy, but at this point those are my options. My knees, as previously mentioned, are really bad as well. When I was younger, I managed to tear all the muscles in my left knee, which never healed properly thanks to my absolutely useless family doctor at the time. I was about 13 or 14, so I didn’t get much say in the matter. Despite the fact that I had had scans and tests done immediately after I injured myself and was instructed to be on crutches for an extended period of time, my doctor wouldn’t listen. I was away at summer camp at the time and was able to use camp crutches for about a week, but when I returned home, I was supposed to get another set, and avoid putting pressure on my leg for several weeks. It was pretty bad. Family doctor glanced at my knee and declared I was fine, and to basically walk it off. Considering it hurt like a mother, I limped and hopped on one leg as much as I could. A couple of months after the initial injury, I was back to biathlon training, and ended up doing some damage to my right knee as I was overcompensating for my left knee. That doctor ended up retiring not too long after, or I would have tried to sue his ass or something, I don’t know. I’m still incredibly bitter about it as I am still suffering from his incompetence, over a dozen years later, and I know I will for the rest of my life. I think I’m justified in that.
4. Skin Flares: The kind I mentioned in my last post, where anything lightly touching my skin feels like it’s ripping it apart. It’s a condition called Allodynia, and it’s also very unpleasant. A single strand of hair brushing across my arm feels like a cheese grater shredding my skin, and all I can do is hold very, very still and try not to cry. I get much milder skin pain pretty regularly, which is why I can’t wear restrictive clothing anymore (god I do miss my skinny jeans though). This includes bras, as it makes my chest feel like it’s badly bruised. There’s also burning sensations from time to time, like my skin is literally on fire. That’s most common in my feet, or on my upper arms for some reason. I can’t wear shoes for extended lengths of time because of this, and I can wear socks for even less time. I know I have circulation issues as well that factor into this, but when my feet get warm, they start burning very, very quickly. It’s not quite instantaneous, but it’s pretty close. The weirdest one is the scalp pain. I often say that my hair hurts, which isn’t quite accurate. My scalp gets so sensitive sometimes that my hair moving tends to hurt. It helps when I keep my hair short, because it’s less likely to move and cause me pain. Scalp pain/sensitivity is actually a good indicator of when I’m going to start flaring. It doesn’t happen all the time, but often it acts as a sort of warning. “Take preventative measures or suffer tomorrow,” sort of thing. Usually that just means to sleep, though.
5. Bone Flares: This one isn’t super common, thankfully. It’s essentially growing pain, but dialed up a few notches. I believe this one actually ties back to my biathlon days, as I’m fairly certain I ended up with shin splints. Shin splints are common in runners, especially if you run on hard surfaces such as concrete, or uneven ground, both of which I did plenty. Unless I’m having a really bad Full Body Flare, where it feels like my bones are going to be snapped by the pressure of my muscles, my lower legs, or shins, is the only place I actually get Bone Flares. The pain usually radiates up and causes knee pain as well.
I classify the type of flare based on the type of pain I’m experiencing. Sometimes I get multiple types of pain, or multiple flares, but typically it’s only one kind at a time. There’s some other types of “flares”, but I say that in quotes because they aren’t as debilitating at the ones listed above. These include intense headaches/migraines, severe full-body Restless Legs (it’s like my entire body is electrified and moving constantly is the only thing that helps), and bad abdominal cramps.
I have no way of knowing when these flares are going to hit, or what kind, until it hits. I have no idea what triggers them. Thanks to the amazing humans at the pain clinic, the frequency of flares has decreased, even if the overall pain and flare intensity haven’t changed. I’ll take the win.
There are other symptoms caused by fibromyalgia besides pain, exhaustion and brain fog. Speaking of brain fog: no, the weed doesn’t seem to make a difference with that. I take tolerance breaks, so that I don’t build my tolerance up too high, because that shit gets expensive. My brain fog does not improve during these tolerance breaks. I have also attempted to quit a couple of times, and have gone several months before caving, and the brain fog does not improve. It’s a symptom of both the fibromyalgia, and the BPD, and I believe the ADHD factors in a bit here as well.
Other symptoms of fibromyalgia:
Trouble sleeping: I have had insomnia for as long as I can remember. In addition to taking gummies at bedtime, I also take sleeping pills. Unless I’m awake for 30+ hours, I do not sleep through the night/day (I typically work night shift). When I am awake for 30+ hours, I sleep so soundly that I don’t even move in my sleep, and I wake up so incredibly sore. It’s really a lose-lose situation.
Muscle and joint stiffness: This is why my stretches are so important, and I suffer when I don’t stay on top of it. Unfortunately, my ADHD makes it difficult to form habits, so I struggle to remember to do them as often as I should.
Tenderness to touch: I kind of covered this one under the skin flare section, but it can also feel like my body is bruised when there’s no visible sign of bruising. If something presses on my skin for an extended period (as in a minute or longer), the residual pain sinks in so deep that it feels like I’ve broken a bone, or I’ve been shot, for lack of a better way to explain it. The pain emanating from the point of pressure sinks through the muscle and into my bones. Often goes away after several minutes once pressure has been removed. The longer the pressure is there, the longer it takes to go away.
Numbness or tingling in the arms and legs: It was so bad in my left leg for a while there, I actually had to travel to the closest Big City to the rehab hospital in order to have a nerve test of some kind done, after several scans of my back and legs failed to show any cause. We never did find the cause, so I just kind of assume it has to do with my circulation issues.
Problems with concentrating, thinking clearly, and memory (sometimes called “fibro fog”): I lump all of this under “brain fog”, but in addition to poor concentration (which is NOT helped by the ADHD), I have the memory of an acorn, and as it gets worse, I’m struggling with my ability to think, period. Most days, it’s like I’m flailing around in murky water, trying desperately to grab onto a coherent thought. I have to reread what I write over and over because I make so many mistakes. I know I often slur my speech, or speak very slowly, because I can’t quite grasp the words. It’s honestly a miracle if I’m able to make it through a full train of thought while speaking before I lose it. It’s a bit easier in writing, because I can read back what I’ve already written and it often reminds me enough that I can finish the thought, even though it’s not exactly how I initially thought it.
Heightened sensitivity to light, noise, odors, and temperature: This one is huge. I have a severe light sensitivity, more so than I should even with blue eyes. I often joke that I am a creature of darkness, because light hurts so bad. I also have sensitive hearing paired with tinnitus. I had to buy these little inserts called Flares (ironic, no?) that basically help to reshape my ear canal and allow me to process sounds differently. Multiple sources of noise (say if someone has music playing and a video or show, or two overlapping videos, etc) make me so unbelievably irritable almost instantly, and high pitched noises are like drills into my eardrums. That high pitched whine that electronics and appliances make? I think most people are unable to even hear it, but to me it’s like nails on a chalkboard. It’s loud, and it drills into my ears and my brain until it feels like my eyes and ears are bleeding. Odors are also bad, and have a near instant effect, making me nauseous. They don’t have to be particularly strong or bad, but something like an ashtray makes me want to throw up. Then we get to temperatures. This one sucks the most. I am incredibly sensitive to heat. In temperatures as low as 18 degrees Celsius, I am likely to develop a heat rash. I love the cold temperatures, but they don’t love me. In particular, my knees are the problem. I have to keep my legs warm, but I always crave being cold. At work, sitting in a vehicle for 12 hours, I have to take a lap blanket with me. I keep the heat blowing on the floor, with the windows down. Even in winter, -40 be damned. I can’t properly regulate my body temperature, so I have to manipulate my environment to do it for me. I honestly can’t remember ever being able to properly regulate my body temperature. I sleep with a mountain of blankets and a heat pad under my knees, with the fan blowing on me. I also keep my house at like, 18 in the winter, and about 13 during the summer.
Digestive issues, such as bloating or constipation: I don’t think I really need to go into detail on this one, but IBS is very common in people with fibromyalgia. Bloating is the main reason I had to stop wearing jeans in the first place.
There’s one more symptom that I rarely see mentioned, but it’s one of the worst.
I am severely self-conscious about my personal hygiene. I can’t control how much I sweat. It’s absolutely disgusting. If my skin weren’t so dry, I would shower multiple times a day. As it is, I use Old Spice deodorant to try and mask the BO, and baby wipes intermittently throughout the day, with reapplications of deodorant. This partly goes back to the part I mentioned earlier about not being able to wear shoes for extended periods of time. My feet, hands and armpits sweat the worst, as well as my scalp. Part of why I keep my hair short too— it’s so thick that it traps a lot of heat. With my feet, I have to keep them cooler, or they sweat and the tops get so itchy I will scratch them raw. Back in 2019, I was helping my parents out at their motel, wearing flats, and my feet were so badly scratched up, my dad told me I couldn’t wear my flats around customers because I “looked like a junkie with track marks”. I literally scratch the tops of my feet until they bleed. Like everything else, I’ve had to adapt. I have a pair of “driving slippers”, hard soled and open at the top that I can wear whenever I’m in the vehicle for an extended period, such as work or road trips. With my hands, I have to be a little bit more careful. When I hold something for a length of time, my hands sweat, a lot. Prime examples are holding my phone, or my Dualshock controller when I’m gaming. But it’s not just the sweat I have to worry about— it’s my circulation. I don’t know what the deal is, my current family doctor is pretty much useless when it comes to this stuff, but when my hands sweat more than usual, typically after a long game session, they get stiff as a board. I can barely move my fingers, and I definitely can’t form a fist, no matter how hard I try. Trying to force it, or moving my fingers too much makes it feel like my skin is going to rip apart. They aren’t cold, and I move them a lot during these game sessions because I’m wiping sweat off my palms every three minutes, but I just can’t move them. Who knows, it’s just something else I have to live with.
There’s one more thing I wanted to talk about, but I’m not actually sure if it’s fibromyalgia, or something else. Dislocating joints.
I can’t sit on the floor, because my ankles dislocate when I try to stand back up. I have to be extremely careful if I do sit on the floor, and I’ve had to learn a specific way to stand up without popping something, that has about a 35% success rate. Remember the popped kneecaps I mentioned? Sometimes they pop when I lean down to pick something up off the floor or squat, but it typically happens when I try to stand up after sitting on the floor. Unfortunately that 35% still hurts my knees. My left wrist will dislocate on occasion, making it near impossible to move my hand until I can force it back in properly. My left thumb is the same. Those are the two joints I have to crack continuously, otherwise I end up with a lot of pressure in the joint, and if left too long it will actually force the dislocation.
I can’t walk long distances anymore, especially if I’ve been keeping up on my stretches, because my hips will pop out and back in while I’m walking. It’s really embarrassing, because I’ll be walking along and my leg will suddenly jerk, and it looks like I can’t even walk normally. Both hips do it.
Additionally, I can’t chew gum or eat anything chewy, because my jaw dislocates regularly. When I was about 16 I believe, I had to have my wisdom teeth removed (which is honestly a very triggering story because of how awful the entire ordeal was, including several months popping T3s like candy and a month long liquid diet because my face was so swollen). Since then, I have issues with my jaw popping in and out— which can often be quite painful— teeth grinding, and my jaw locking up to the point of needing muscle relaxers.
I’ve kind of explained away why all my joints do this, but I have my suspicions as to the real reason this happens. Of course my doctor won’t even let me bring it up, but after a lengthy conversation with some individuals on Reddit (yes, yes I know), I suspect I may have hEDS, or hypermobile Ehlers-Danlos Syndrome. The conversation was specifically about living with fibromyalgia, and some of the stuff I’ve listed in this post. Three individuals who said they have hEDS urged me to speak to my doctor because they said what I experience is exactly what they do. I know you can’t trust random people on the internet, but I have done a bit of reading on the subject, and it would honestly explain a lot. hEDS is often misdiagnosed as fibromyalgia, and gets increasingly worse over time, until it becomes completely debilitating, often leaving the individual in a wheelchair or similar “crippled” state. Considering how my fibromyalgia is absolutely getting worse over the years, and the fact that I have a lot of the same symptoms, it makes me think, you know?
I would need to try and find a different doctor (which is essentially impossible here thanks to the health care crisis, I’m lucky to even have a doctor) who would actually listen to what I have to say before I could even begin trying to figure this out. My doctor won’t even try to figure out why I’ve had a sinus infection since August (yes, almost a full year now, treated with antibiotics twice) so it is what it is.
Originally, I hadn’t planned to make this one super long. I actually planned on making this one fairly short. But once I started writing, I decided to go all in, not hold back. Maybe I overshared, oh well. But this blog has two main purposes.
The first is to be therapeutic for me. I’m seeing a counsellor weekly, but lately it’s not enough. I hoped that by writing everything out, it would help me to deal with my shit. And it does seem to be helping in that regard. I was advised to post weekly, in case I don’t have something to post because I’m burning through stuff too fast. Maybe I’ll get to that point, but so far, I’m on number 3 in 2 days. I’ve typed out these first 3 posts in 2 days, and I have to keep stopping only because I’m out of time. I find this incredibly therapeutic. (Update: I’ve had to slow down but I have an additional 3 written now too, and I plan on cranking out more this week.)
The second purpose of this blog is to help others. My hope is that someone will read my posts, and can relate. They can know that they’re not alone. But I also hope that I can help to educate others who may know someone like me. The fact is, a lot of people suffer from invisible illnesses like fibromyalgia, or mental health conditions. But because these conditions aren’t visible, they are often overlooked, or downplayed. Those quotes I put at the beginning of this? Those are all things I’ve heard, personally. I’ve been accused of being lazy, a slob because my house is a mess. I’ve been told that my pain can’t be that bad. In reality, my pain is so bad, so debilitating, that I qualify for disability. I was almost through the application process when I landed this job. It involves a lot of sitting, and absolutely no physical demands, which is the only reason I’m able to work. But not everyone is as lucky as I am. And disability doesn’t pay enough to actually live off of. At this point I’m working for as long as I can to save up as much as I can before I’m forced onto disability. Maybe I’m being cynical, but I imagine I’ve got at most 5 years left where I can realistically work, with the rate I seem to be deteriorating.
There could be someone in your life that suffers from an invisible illness like mine, struggling every single day just to make it through. I can promise you, life is as hard as they say it is. BELIEVE THEM. If they’re anything like me, they’re already frustrated with themselves. They’re already frustrated that they can’t perform at work the way they’re expected to, or they can’t keep their house clean. They don’t have the energy to hang out all the time, because they’re sick, hurting, and fucking exhausted. BELIEVE THEM.
If there is anything that you got from reading this, I hope that it’s that we aren’t faking our symptoms. We aren’t faking how difficult life is. We aren’t making up excuses because we don’t want to do something. If you know someone who suffers from an invisible illness, you very likely only see the surface of what they’re going through. We can be really good as masking, or hiding what we are going through.
Be kind. Be supportive. Ask them how you can help. They are suffering, and honestly, sometimes a helping hand or an ear is the best thing for people like me. Sometimes, we need it.