I know this comic has already been posted on lemmy. But it’s the only way that I feel captures my feeling, it’s like I live on an unspecified timer, everyday, after that I go back to the can.
There’s the constant pain, the lack of sleep and/or quality of sleep, waking up everyday like you’ve been run over by a train.
Then there’s the extra sensitivity, and the “electricity”, every time I sweat I feel an electric shock in my body. At many points, it feels like an active electric current is being run through my body, like I’m strapped to one of them electric execution chairs.
Then there are the constant brain fog/headaches, no matter what I seem to do, half of my brain is preoccupied with pain in random areas. My brain is like “Hey wassup, I know you’re trying to focus, or sleep, but your left leg is in a g o n y, because no reason really, maybe you moved too much. And so you have exceeded your uhhh free trial of leg for today.”
Depression comes in play too, either because I don’t go out much because of the pain, or because of the lack of sleep. And then depression fuels anxiety, and they fuel each other, and we have kick started our “mental doom engine.”
Then there’s the sleep. I have school coming up, it is absolutely necessary that I stick to a schedule, except that won’t happen. Because the only way for me to fall asleep, is to be at that point when you’re so sleep deprived that you can’t keep your eyes open. I have tried at many points to use this my advantage, but it seems like this point is almost always at 5 or 6 AM.
I have abandoned traditional art, and almost anything that involves the use of arms. I can type on the keyboard pretty comfortably because it requires only my wrists and fingers, but even that starts to hurt after a while.
And lastly, it is almost treated as an invisible disability. “Your limbs don’t seem to be broken/swelling”, “You’re not using crutches”, “You’re not on a wheelchair”, and “Fibro my what?”. I have been using sticks/staves/brooms in many situations to get up and move, and I use whatever object I can grab and get up with.
Since I grunt all the time, move slowly, use long objects all the time, I have always joked that I feel like an old person. As I’m writing this, my old person knee is acting up for no reason whatsoever, it just likes to be silly at times (night).
Tl;Dr: The comic I posted, I guess.
Thank you for reading.
EDIT
The good ending. All of the responses were to my surprise, overwhelmingly positive! I thank everyone who has commented with their own insights, I learned a lot, remembered a lot, and discovered a lot of things that would help me manage my pain. Thank you all, I wish you all the best of luck
I have long learned that pain/illness is not a competition. I wish you the best on your bad days.
pain/illness is not a competition
Wdym? Also thank you for your wishes :>
People without chronic pain often try to bring up a pain as being worse than someone else’s. At best, it seems like a failed attempt at comisseration. It gets exhausting dealing with people (some family members in my case) that seem to want to “win” being in the most pain.
Yeah I get that now. My dad seems to be guilty of that, always going on about how “We’re all in pain” and I should just shut up about. Except you’re a middle aged man and I’m a bumbling bee 😭
I was talking to a friend once about some weird thing happening and how I hadn’t been to the doctor because “compared to what [my husband] is going through, this is nothing”
She then told me “pain isn’t a competition, your pain doesn’t have to be worse than everyone else’s for you to go get help”
I think they’re talking about how people will often try to “empathize” by comparing your pain to theirs.
Fibromyalgia is estimated to affect 2 to 4% of the population. How have i never heard of this!? you’re telling me 1 out of 25 to 1 out of 50 live with this!? How is this not better known?
If I recall correctly from reading here and there, it mostly goes out unnoticeable by people. Like if someone turns 30 and they start having certain symptoms, they’d just think it’s part of growing up. Plus what a user has already said, it kinda manifests differently in different people. Cause is unknown-ish, although it’s largely thought to be something that has to do with (mental?) stress. Anyway I had plenty of stress in puberty, plus at the start it all started with my wrist, I just thought it was because I play games for long periods of time. Then it slowly “spread” to the rest of my body, causing a complete crash while I was working a part time job.
All of this to say that people give subjective descriptions to how they feel, but the hallmark symptom is lack of sleep and extra sensitivity.
Because no one has made a telethon or Lifetime movie about it. There isn’t even a viral internet “challenge” to raise awareness.
Just millions of anonymous people living with chronic pain.
Also it manifests differently in individuals, and doctors don’t really know what causes it, or how to treat it since it can look so different depending on the patient.
Unfortunately, because it’s difficult to treat it’s one of many things that often gets brushed off as maybe the patient is just being difficult/making it up, and even once somebody has a diagnosis, it can still be difficult to manage depending on the case.
Most doctors don’t even understand there is a huge difference between chronic and acute pain, and they have to be approached and treated very differently.
I don’t have fibromyalgia (just happened to be scrolling and this caught my eye), but I am very interested in the development of chronic pain, and I’ve seen how fibromyalgia patients are treated in the clinic.
Especially since I developed long COVID symptoms this past year, and was repeatedly brushed off bc I wanted to figure out what was happening and regain quality of life, I feel a lot of empathy for people who are dismissed by their doctors simply bc the doctor doesn’t know how to treat something that isn’t resolved using a plug and play protocol.
If a patient knows something is wrong, and they keep telling you something is wrong, just fucking believe them. In the U.S., this was already a major problem in medicine, and now the government is pushing doctors to MAHA. So, if it hasn’t been figured out yet, and you’re lucky enough to be one of those “difficult” patients doctors hate, no need to look any further than sunshine and rehabilitation camps for treatment.
Yet another reason why moving everything, including science and medicine, towards biased automation/AI that learns from the existing (and very incomplete) data, is such a great idea. /s
Solidarity, Long COVID buddy. There’s a lot more good info out there than there was early on, even as everything else goes to hell. Are there any arcane questions or details that you’re particularly on the hunt for?
I think I’ve finally figured out I developed something similar to histamine intolerance, and antihistamines seem to help a lot with most of my symptoms. Surprisingly, a low dose of Benadryl has been the most effective for brain fog and fatigue (pre-covid it would always be like an instant knockout). I’ve always avoided it bc it made me so drowsy, and even now that it doesn’t do that (at least at a low dose), I worry about long term negative side effects and tolerance development. Any alternative suggestions?
I’m trying to focus on sticking to foods that are approved for histamine intolerance. I can definitely tell the difference when I eat something that triggers histamine release, but I still feel symptoms without taking Benadryl daily (which really sucks and is really hard to explain). A regular dose still makes me drowsy, but a child’s dose of children’s Benadryl is like magic. It’s so weird.
I also take Allegra daily (and sometimes Zyrtec in addition) which helps with some of the symptoms normally associated with allergies and histamine, but they don’t seem to help at all when fatigue and brain fog (I’m guessing bc they don’t cross the blood brain barrier, but again just my best guess after giving Benadryl a try out of desperation). I always had bad allergies most of my life and have been taking second gen antihistamines daily since I was around 19. Not sure if tolerance to those could have made them less effective by comparison?
My sympathies, that sounds like the pits. Hopefully the generalities I’ve got are useful for further researching. This isn’t medical advice or guidance; I am a non-doctor random internet sicko, please consult a doctor for your health decisions.
Anyway, I’d note that all the meds in your post are H1 blocker antihistamines. Extremely broadly speaking, adding an antihistamine that blocks your H2 channel can help antihistamines work properly in some people, especially when something else like LC is making you inflamed all the time. The pairing of H1 and H2 blockers was trialed and published for treatment of some aspects of acute COVID, and I know people were experimenting for Long COVID.
Quercetin, diamine oxidase (DAO), or both are commonly used by histamine intolerant folks in situations like yours. Again, talk to your doctor and gather all the data needed for them to make a treatment plan, there’s a fair bit of complexity. Read up on the interaction between quercetin and ibuprofen if that’s a big part of your life, and know that the bromelain in some supplements can cause drug interactions and mess with some histamine sensitive folks.
Nattokinase helps break down microclots which drive many flavors of LC damage. It shows up in the literature a whole lot.
On the experimental side, low dose nicotine patches have been shown to crowd out residual COVID spike protein and other agonists. The research is ongoing. https://pubmed.ncbi.nlm.nih.gov/36650574/
The best writing I’ve encountered on the general subject of histamine intolerance was this three part series about MCAS. That’s an end of the histamine spectrum I hope you’re not in, but the knowledge will be applicable and valuable.
https://www.disabledginger.com/p/when-youre-allergic-to-everything
https://www.disabledginger.com/p/mcas-and-histamine-diet-isnt-the
https://www.disabledginger.com/p/learning-to-let-go-how-to-accept
The author is active on Mastodon and one hell of a disability educator. I’m also on the same server, it’s a great place to ask questions and encounter research.
I really hope this helps. Take good care of yourself.
Thank you!
If you don’t experience chronic pain, it’s very hard to imagine chronic pain.
I’ve experienced far worse temporary pain and been able to manage it, but pain that just keeps going is completely different.
I used to be happy whenever I got a bruise or a cut because finally someone could see that I was in pain.
If you don’t experience chronic pain, it’s very hard to imagine chronic pain.
Still that doesn’t mean one should try to. I’m guilty of this too, as I didn’t start thinking of anyone with chronic pain (or any chronic illness) until I had one. But that shouldn’t necessarily mean that one has to be cursed with illness to understand it. I guess that’s what all of these awareness campaigns are about… Huh.
I’ve experienced far worse temporary pain and been able to manage it, but pain that just keeps going is completely different.
Yes. For temporary pain, take a pain killer or go to a doctor, easy. But for long term pain, you just have to live with it, it is now a part of you, and it really morphs your entire personality, as you start to drift more and more to things that don’t cause you much pain. I used to fucking love playing soccer, now, it’s a death sentence.
I used to be happy whenever I got a bruise or a cut because finally someone could see that I was in pain.
I have lived, and continue to do so, in a household where this actually applies. Anyway wish you the best of luck in everything!
I am very fortunate that (after many years of trying) I have found medications that treat my condition effectively. As long as I’m careful and follow my strategies, the pain just seems like a distant memory.
I hope that you will find ways to cope, people who care, and new sources of joy that will remain accessible to you.
Thank you.
“Your limbs don’t seem to be broken/swelling”, “You’re not using crutches”, “You’re not on a wheelchair”, and “Fibro my what?”
No one gets to make you prove your pain. Their pain meters only work on themselves pain doesn’t have to manifest visibly. Fuck those doodieheads.
doodieheads
I’m stealing this :>, also thank you!
Yeah, I also had a papercut recently.
Or also
What, that’s still going on?
I feel this so much. Having several invisible disabilities. May you find a bit of happiness in the thought that daily life is brutal and you’re not alone.
How come I never have any paper cuts despite playing with paper all the time? I’m starting to think paper around the world is extra sharpened or something lol.
Also thank you :)
Indeed it seems to be only some paper which when looked at wrong gives you cuts. 😁
Fuck, this sucks. This probably took a lot of pain to write as well.
Hang in there!
This probably took a lot of pain to write as well.
Finally someone gets it :)
Hang in there!
I will try!
🫂
🫂
Not to be selfish and make this post about me, but as someone with pectus escavatum, this feels like every conversation I’ve had with a doctor when I bring up my lack of self-esteem
Not to be selfish and make this post about me
Ahh don’t worry about it. This is a safe space for us to vent, and talk openly.
pectus escavatum
That feels really painful. Hugz 🫂
I know this isn’t what your looking for, but I had a friend group in college where half the women and a couple of guys thought that was the hottest thing ever. You never know which of your most hated qualities are someone else’s kink.
¯\_(ツ)_/¯
I was expecting the rug pull to be height or some other incel shit, pleasantly surprised.
Bet it’s been edited for incel shit as well tho
I can assure you this was never about height or incel shit. We’re segregated anyway (middle east), I gave up a long time ago :)
People will bring it up a lot, but like you’ve said they already do, but you should get a cane for standing up, it helps a lot.
Yeah the word “cane” is what I was looking for! Except I still haven’t made my peace with it.
I’ve been on something slightly resembling your journey. A cane of a correct height was a huge upgrade from the improvised mobility aids I’d been working with.
Much more beneficial than I initially expected. More movements. Bracing against the ground while crouched using it like a rifle buttstock, standing up slowly by gripping the curve, hooking on to furniture or my legs to sit up, dragging heavy things with the hook, resting my chin on it when holding my head up takes effort.
Believe me, you’re gonna want those moves. And you get more Leg reserves if you divert some Leg over to Stick. 🦾
Bracing against the ground while crouched using it like a rifle buttstock, dragging heavy things with the hook
Holy shit this sounds cool as fuck.
you’re gonna want those moves
You really sold me on this. I want in. NOW
Also wdym by correct height? What criteria should I use to choose one?
I left out the best part, doing the ground bracing at weird angles makes it EASIER FOR ME TO PET A CAT!
Anyway, an adjustable cane is best. To my understanding, its support should be at about the level of your wrist when you stand up straight if that’s something you can do. I’ve heard of cool wheelchair accessories that also connect to the spring-loaded peg and hole height adjuster on standardized canes.
I’m very far from an expert, and can’t give medical advice, but it sounds like you might want to ask a healthcare provider if you’d want a cane that can affix an arm brace. Knowing whether you’d want that style, or the movements of bracing on a traditional cane, would be specific to your body.
There are options for different supports and tips to fit you best, but the classic is classic for a reason. The canes that fold out into a seat are rad as hell, though, and walkers and rollators have plenty to recommend them if they’re the right tool for somebody.
If I was telling someone where to go to try out some options in the US, I would direct them to a durable medical equipment store or a pharmacy specialized in that. Another option might be a local senior center, which often have loaner equipment they might let you try. Hopefully there are useful options like these where you’re located.
I am so delighted this helps, and hopeful for more helpful info others might have. Excited for ya!
This reply has been a huge help. I thank you yet again :)
The canes that fold out into a seat are rad as hell
Now we’re talking! Years ago I was depressed, so by googling “help me please” I found this website http://helpmeplease.com/ and it was the best thing I ever encountered!
Here is the image on the front page!
Sorry I got off track, point is there has been a sentence that had stuck out with me from that website, “Rest Anywhere” with a photo of a person laying down on a boulder! Ever since then I have been doing exactly that, and hearing that there is a cane that folds into a chair, is extremely helpful :D
Oh, one more moveset that might be huge for fibromyalgia: on a standard cane, the padded handle, rubber bottom tip, hard top tip, and cold rollable metal are all useful for massaging and pounding out various aches and pains. Holding it behind me in my elbows and using it to twist and pop my back is so damn therapeutic.
How much do you weigh?
What does that have to do with anything?
Fibromyalgia is a recent catch-all word for general aches and pains and fatigue that is only common (but not exclusively) in fat people, when no other causes can be found. The general cure for it is diet and exercise. The things fat people avoid. In other words, it’s usually a symptom of a poor lifestyle. With exceptions, of course.
You’re trying to lecture a chronically ill person on their condition and want to make it sound like it’s their own fault.
Cordially: Piss off!
If their chronic illness is because they’re fat and eat poorly, is it not their fault? All those doctors that always suggest for you to exercise and eat right aren’t saying it to just blow smoke up your ass. Go to the mayo clinics own website and look up treatment for fibromyalgia. It’s literally eat healthy, stretch, exercise, and get appropriate amounts of sleep. It’s generally a self caused illness, like most cases of type 2 diabetes.
Sorry if you want me to be nice about it or pretend it’s just bad luck for the person or be like “oh no, they can’t find any medicine that works to help”, but maybe they just need to hear the hard truth of it. If they want to get better, the8r isn’t a magic pill they should be looking for or something out of their control to blame. Diet and exercise. You didn’t and now you hurt. You want to stop hurting and physically and mentally feel better, you’ll have to actually put in the effort.
You are always welcome to suggest strategies that may help someone. Diet and exercise are important to keeping a health lifestyle, but do not guarantee health. A perfectly fit person will still experience pain when hit by a bus, and no amount of dieting or exercise can prevent that.
In contrast, telling a person that their entire medical condition is caused by them being fat and lazy while providing no assistance is inconsiderate and unhelpful.
I know people with fibromyalgia who were fit and healthy until their pain stole most of their life. Fibromyalgia is not just caused by excess weight. It is the catch-all term for a very large number of undiagnosable conditions, many of which are completely unrelated to lifestyle.
You have not helped anyone by writing this comment, and the world is no better off as a result of it.
Fibromyalgia is term for a wide range of conditions that couldn’t be diagnosed because doctors don’t understand any of them well enough. Weight has nothing to do with it.
You’re blaming someone’s pain on their weight without even seeing them, in a space where they are just trying to talk about it.
This is victim blaming. They did not cause their pain. It is a medical condition.
Weight has very much to do with it, as most patients diagnosed world wide are overweight or obese, and all studies done that I’ve seen show a link between increasing weight and severity of symptoms. Also, as I’ve already stated in this thread, the Mayo Clinic recommends treatment consisting of diet, exercise, weight loss, and stretching.
You can call it victim blaming if you want. I don’t know anything about OP other than they wouldn’t answer the weight question. For OP it might be completely not their fault, but it could be their own doing.
If I jump off a house and break my leg I’m not going to blame gravity. If I drink a 12 pack of mountain dew a day and develop type 2 diabetes I’m not going to blame the soda. Sometimes you’re a victim of yourself. Odds are that how OP feels is because of OP, because odds are they’re overweight and don’t regularly exercise.
I hope you never need to learn how wrong you are the hard way.
