Fibromyalgia - Blog Posts
Seeking advice: new wheelchair user
I will be using a wheelchair semi-regularly the next month to see if it will help reduce pain flare-ups / baseline pain and to figure out if it's helpful for me.
Tomorrow is the first day and I am going to uni and therapy. I have only used a wheelchair a couple of times but I'm comfortable with folding it and such as my dad's disabled and it's his wheelchair I'm borrowing. In theory I know how to maneuver around but I'm nervous about it.
Do any wheelchair-users have tips/advice for new wheelchair-users?
Extra info: it's a foldable wheelchair, brand is Quickie. I'm nervous about tipping backwards (no anti-tip), going up and down curbs, taking the metro, painful hands/arms/shoulders.
I forgot about this post. But I did it @wittlepuppydog. I didn't shave my head completely, I just got a short hairstyle instead. It was about 5 months ago now and I absolutely love it. It has made the pain considerably more bearable as hair is no longer brushing against my face constantly, and I no longer have to tie it up to get it out of the way (which also hurts).
Honestly, it's not even just about the pain. I feel more like me. I recognise myself in the mirror. I like my hair, I like my face - something I could never comfortably say before. It feels like my pain gave me a gift. I never thought I would say something like that about my chronic pain. But yeah, it has helped and I have never felt more like myself than I do now.
And people's reactions and their staring honestly haven't faced me. I don't care about it anymore. Also, it's hard to say whether they're staring bc of the hair or bc I'm young and disabled and walking with a cane.
Thought I'd add some pictures for reference;)
I've been considering shaving my head because of the pain. It's still constant and my hair makes it worse. Is it stupid? Will I regret it? Will I feel like I'm "giving in" to the pain? Does that even make sense? I'm tired of feeling like I have no control over the pain. And this feels like a way I can maybe at least not hurt myself more and gain a little control back? I don't know. I'm tired
I recently started using a cane everyday and so my previously invisible disability is suddenly visible. I also started medschool. It's been a while since I was properly social so I have questions...
People don't walk next to me. And if they accidentally do, they leave to walk next to someone else even if that means squeezing in three people on the sidewalk. No one talks to me if it's not to ask me "what's wrong". I have really tried to make an effort and talk to people but I don't know what to do.
Can it have something to do with my disability and my cane? Like they're scared to say the wrong thing? Or maybe it's because they've sensed the autism?;)
I've been considering shaving my head because of the pain. It's still constant and my hair makes it worse. Is it stupid? Will I regret it? Will I feel like I'm "giving in" to the pain? Does that even make sense? I'm tired of feeling like I have no control over the pain. And this feels like a way I can maybe at least not hurt myself more and gain a little control back? I don't know. I'm tired
It's so frustrating that my neurologist is so clearly in over his head. To my face he's denying that there's any uncertainty in the diagnosis he has given me and is blaming anything that doesn't fit on my mental health. But on paper he has gone back and forth between two diagnosises for months now. He is switching between the two every time he writes in my medical chart and when I ask him about it he denies that he's unsure. I can't fucking wait to start af the headache clinic
Can't believe it took me 8 years to realise that the random pain I get in half of my face for a couple of days to a week every other month is a migraine...
I always thought it didn't matter bc it's not every day like my fibro pain
My chronic pain has gotten worse every winter for the past 4ish years. And not just a flare up that goes away again but permanently worse. And I don't know if it's simply a coincidence that it happens every winter but I'm so nervous and scared because it's getting cold again.
I finally got the tattoo I've wanted for years😁 so I always have an extra spoon for bad days🥄
fibromyalgia is definitely fibromyalgiaing right now :(
This is probably asking a lot, especially because it comes out of nowhere, but I figure if this story is gonna get even an ounce of traction, it'll be on timblr.
I'm a disabled, fat, queer, neurodivergent author who writes about disabled, fat, queer, neurodivergent characters and topics.
My current project, Passing for Fine, is about an agender ex-athlete named Jessie who develops fibromyalgia after a traumatic accident. They end up gaining weight, being totally abandoned by their teammates and people they thought of as friends, and moves to a new city to live with their overbearing, perfectionist mom.
While in this new city, Jessie meets a cadre of new friends who all, in one way or another, fall between the cracks, or don't fit the mold you'd expect.
Ryan is an ex-felon turned baker (literally looks like he could kill you but is actually a cinnamon roll) who struggles with the way he's percieved due to his plethora of tattoos (some of whoch are pretty scary). Ash is a wheelchair-bound transman who works at a gym and is the only one of the group who owns their own vehicle. Alexis is a Black woman who helps manage the local community garden and co-op but struggles to feel welcomed in Black spaces due to her lighter skin tone. Eddie is a non-binary phlebotomist who struggles to be taken seriously as a non-binary person due to xir masculine appearance.
Ultimately, it's supposed to be a rom-com, but the story also deals with Jessie's depression, internalized ableism, and self-doubt (all of which they work to overcome/adjust to/live with throughout the story) while they are also helping to save Ryan's café from gentrification and over reaching landlords.
I'm currently in the process of my second draft, but was thinking if enough people seemed interested by this initial post, that I'd start posting chapters here, too.
The cover was made by Carmilla from carmillacreates.com
I feel like half my body needs to be soaked in ice while the other half covered in heating pads…just the issues of chronic pain ⋋_⋌
Not my dad having called me a slur used for physically disabled people anytime I was injured or in pain during my childhood, long before I was diagnosed with my disability. I didn’t know it was a slur at the time.
Not me assuming that after I actually was diagnosed with a physical disability that he would stop calling me that out off respect or at least ask me if I mind. No one really cares about a child understanding words that are meant to be used as an insult because if they don’t teach them they’re an insult they think they can get away with it. That’s not good.
But I was having a bad pain day and my dad once again called me the G word, which not everyone knows.
He didn’t say it in front of anyone other than me and my mom, and he didn’t say it in an insulting way, however he has a tendency to say rude and cruel things with no intention of them being either (or with the intent but not caring)
I don’t actually have issues with the word itself on reference to me. Gimp(y) and Cripple aren’t words that I am afraid to use to describe me but I don’t need my father to assume I’m okay with using it as an adjective.
I wonder how he’d react to me referring to him as it? Another chronic pain haver who happens to use a cane on occasion.
Hmm
Hey y’all!
I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.
I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.
I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…
Let me know if you have any suggestions or questions!
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For all my over-heating spoonies out there:
While doing chores/moving around, if you start to get really warm, put ice packs in your pockets, 10/10
Drink lots of ice water, but not all at once, your body might freak a little and go nauseous
Have a large amount of tank tops in various colors, when you go out and have to look a bit more formal, use a cardigan/very thin jacket so you always have the option to take it off
Spray bottles on mist form <3
Sometimes resting, or laying down, helps to cool off cause you're not using energy
Keep your bare feet on the cool tile/wood/etc. as often as possible
Bowl of ice in front of a fan works weirdly well
Popsicles, but make sure they're not high in sugar/dairy/etc. because those can make it worse
I know it would seem like tiny tight clothes would be best, but make sure your clothes aren't tight, you don't have to wear long flowing capes and gowns but having shorts that are cotton/loose are always much better.
The backs of your arms (the upper half) your feet, and your knees are often colder than the rest of your body, utilize that
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went to the grocery store twice today and cleaned my whole house I havent had this energy since I was a lad 🙏 in sooo much pain though
Blog Intro Time!
(dividers made by anitalenia!)
My name's Cassidy! I use She/They/Fae pronouns and I currently identify as a Transgender, Genderfae, Ambiamorous, Sapphic Demisexual!
I also label myself as therian/otherkin, a spoonie, and an age dreamer(pretty rare it happens)! More info will be posted below about my kintypes and I'll try to keep it updated regularly!
I've been diagnosed with Generalized Anxiety, Fibromyalgia, and I'm very confident about having Autism and BPD! They probably won't be big focuses on this blog but they'll absolutely come up
I'm hoping to connect with others similar to me and I hope to make my blog a safe space :)
More stuff below the cut!
★ = Currently Prominent
Theriotypes:
✿ Shiba Inu(★)
✿ Tanuki
Kintypes:
✿ Mothman(★)
Fictotypes:
✿ Chara Dreemurr - Undertale
✿ Chiaki Nanami - Danganronpa 2: Goodbye Despair
✿ Hornet - Hollow Knight
✿ Ogerpon - Pokemon Scarlet & Violet(★)
Last Updated: 05/15/2025
Special Tags:
NOTE: These only will start being used starting 05/15/2025
✿ 🐾.text - Posts about my theriotypes!
✿ 📖.text - Posts about my kintypes!
✿ 🍫.text - Chara kinshift/related posts!
✿ 👾.text - Chiaki kinshift/related posts!
✿ 🪡.text - Hornet kinshift/related posts!
✿ 🌿.text - Ogerpon kinshift/related posts!
My Content:
In no particular order, things I'll probably post about include but aren't limited to:
✿ My personal life & experiences
✿ Therianthropy/Otherkin experiences
✿ Any special interests or just anything I'm into
It's also entirely possible I might rarely vent about stuff really bothering me, but I'll always add the correct trigger warnings and put the meat of it under a cut!
I don't have a big DNI list on hand, but absolutely no bigotry or hatred will be allowed in this blog! That means no racism, sexism, trans/homophobia, or any notable "antis"(anti therian, anti xenogender, anti neopronouns, etc.) and absolutely NO zoos, necros or pedos are allowed here!! Minors are ok to interact! I'd also like to say that while I don't believe I'm a plural system of any sort(I've had on and off questions tho), I'd like this blog to be safe for all systems, so please don't bring any syscourse here! I'm more than happy to use the block button if needed
Other than that, I hope people who stumble across this have a great day/night and I'll keep this as updated as I can!!
I'm getting real tired of ppl telling me that my fibromyalgia is fake <3
the thing that drives me crazy about fibromyalgia is trying to explain it to people. yes i am in pain all the time. no i didn't do anything to get hurt. no it will almost definitely never go away entirely. no i don't know what caused it.
"so you're just going to be on pills your whole life" if the pills keep working, yeah, probably! i don't like being in pain!
able bodied people will decide you’re not disabled over *checks notes* the shoes you wear
got diagnosed with fibromyalgia today
Sick of rainy days, dripping down my face everything is grey (cause I've been not okay)
Demon Of Pain - Day... ?
I had an odd experience yesterday.
I helped my sister move into her new apartment. 2-3 hours hours in and my body started flaring up (well, I had already needed to submerge my hands in very hot water to get them to hurt less and be less stiff twice. But this time it was my back and the rest of my body.)
So I biked home, parked my (public) bike. I had to walk 2-3 blocks. The entire way there I was hit urges to claw at the pain in my back by my shoulder blades, and couldnt stop doing it. Or to press my hands on the muscles, hard. When trying not to claw at it, I'd stim very obviously with my hand(s). This might sound rude, but I felt like ppl looked at me and saw an addict on a bad trip.
I was breathing weird, through clenched teeth in a permanent open-mouthed grimace. Sounded a bit almost darth vader-y. I'd bare my teeth, but there was nothing to bare my teeth at. I'd snarl at nothing. Start to hiss and then try to stop cause I was still in public. Kept having the words "fuck off" repeat over and over in my head. I dont even know how to describe what I was feeling emotionally. It felt. Barely lucid? But at the same time very aware. Like my brain was getting blinded by the light of my pain.
As I kept walking I kept doing these more. Not cause I wanted to. I just couldn't stop.
I got home and prepared a hot shower—by the time I was in the bathroom I had started repeatedly hissing "fuck off" repeatedly out loud.
Eventually it all stopped in the shower.
I know it was all just cause I was overwhelmed with the pain, but it honestly felt like I was having a fucking fit. It was horrible.
Ended up doodling it a bit in my journal and remembered a really old piece of art similar to what I drew.
Fingers ache too badly to draw today :(((
Demon Of Pain - Night 3
My legs ache so badly i can't sleep. My back isn't much better. Took melatonin earlier and i think i fell asleep for a little bit but now im awake again and no matter how tired I am I just. Cant sleep thru the pain. It hurts. It hurts. It hurts! FUCK fibromyalgia and withdrawal
Demon Of Pain - Day 1
Going thru withdrawal again. Day 1 without seroquel (a sedative). Wish my sanity luck cause my insomnia came back with a vengeance.
Drew this when I got off of effexor almost a year ago.
My fibromyalgia is a bitch to deal with when it comes to withdrawal. Last time I was often bed bound for a month and then after gradually got my strength back while dealing with less withdrawal symptoms, and at the time I felt like I had lost my sanity. That my mind had fractured from the pain.
It's taken months and therapy to get where I am now. I'm stronger for it. I know I can make it through this, and I know what to do when I get overwhelmed now.
Still. Not looking forward to the upcoming breakdowns.
I'll most likely be posting a lot to the void on this account during this time btw, cause thats what I did last time (on a different site that my family follows so fuck that this time around). It helps for some reason.
Welcome to the Demon of Pain series where you'll be following this demon in its natural habitat... pain 😌
Spent over 3 hours making 2 curry dishes (for the first time) and one of them turned out weirdly grainy cause the recipe I used recommended way too much of a quantity of spice and im 😭 my back hurts so much rn from spending so much time on this and it ain't even that gratifying oh my god