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
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!