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

An illustration of a cat wearing funny clothes and hat, while carrying a stringed instrument with 3 strings

  • yumpsuit@lemmy.worldEnglish
    3·
    6 days ago

    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.