#CHRONIC pain patients

[thedisablednaturalist]

I think when people think of mental illness and what helps, especially with things like anxiety and depression, the treatment involves pushing yourself. Pushing yourself to get out of bed, to exercise, to take a shower, to go out in public, to order your own food from the cashier, etc.

And because the mental health movement has grown so much, people think that's the default of ALL illnesses. That the only way someone will get better is if they push themselves. That practice makes perfect. That you'll become more comfortable or strong over time the more you do something.

But what people need to realize is, with physical disabilities and chronic illnesses, pushing yourself in most cases is DETRIMENTAL. Pushing yourself past your limits can lead to flare ups or further injury. That's why it's important to know your limits, how certain activities may affect your condition, and learn how to either adapt or get help to complete the activity in question.

Also, most of us are already pushing ourselves. Most of us don't have access to the help or equipment we need. Most of us live in places where we frequently encounter inaccessible obstacles. Most of us NEED to rest.

So please don't try to be our physical therapists or doctors. There are people specifically trained to help us navigate our own conditions and limitations. There are people trained to help us strengthen our body's resilience without causing flare-ups or injury. Do not tell us "it'll be good for you" or "you need the exercise" when we say something is too heavy or too far or when we say we need our mobility aid(s). Your friend with depression may need to be encouraged to get out of bed, but your friend with chronic illness definitely doesn't.

Respect our rest.

[bubba-draws]

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[lifewithchronicpain]

Fuck the DEA!

From American Agony by Dr Helen Borel

People always be like "of course people with painful diagnoses will get opioid pain medication!" But the reality is those in charge care more about reducing deaths by reducing pills, pain patients be dammed.

If restriction stopped addiction we'd still be under prohibition. Science based addiction recovery efforts allow for drug use until the person is ready to quit. But that would require too much effort and empathy.

[sprinkleofquirk]

I’m so tired of being honest about my pain level and having no one believe me because I don’t show pain the way they expect

[talkethtothehandeth]

To the people who think that doctors will start treating you better if your symptoms get worse and you get sicker:

They won’t, hope that helps ❤️

[prince-liest]

My first patient today made me so happy. She's this relatively young woman that I've seen a few times now who came in with this story of really debilitating, recurrent episodes of nausea and vomiting multiple times a week that were getting in the way of work and life and leaving her collapsed in the shower for hours a day. She had irritable bowel syndrome listed in her diagnoses, and was tearful for most of her first visit because she was so tired, stressed, and had basically been told repeatedly that she just had to lose weight. I was like, cool, weight can definitely be a goal for your long-term health but right now I'm more concerned about your immediate quality of life.

She's also had migraines with aura since she was a kid, worse the past few years.

Now, don't get me wrong: I did a thorough work-up to make sure that the nausea and vomiting weren't from some other underlying pathology. Thyroid, ultrasound, the words. Results were all pretty much perfect.

Anyway, started her on sumatriptan as an abortive medication for the migraines, it helped partially but not fully, so I nixed the sumatriptan and started her on daily venlafaxine as a preventative and stacked Nurtec on top as an abortive medication and she came back looking happy for the first time I've ever seen her. Like, every single other visit she's ended up crying in the office, not even out of active upset but just because she was so stressed and tearful at baseline. Also, guess what? No more debilitating nausea and vomiting.

I've started several people on antidepressants and one of the things I've been realizing fairly swiftly is that more than half the time I'm starting people on them, they do have depressive or anxious symptoms...but the main thing I'm gunning for is actually either migraines or chronic pain. And I get two birds with one stone: improved pain, and improved mood because, well, antidepressant, but also because not being in pain makes people happier.

Antidepressants woooooo

[headpainmigraine]

How to talk to doctors when you're chronically ill

Always be deferential

Pretend you don't know any three-syllable words

Use small words

Don't use technical language about the disorder you're living with (this can make you sound like you've been spending too much time on WebMD, which means you a filthy liar and a fake)

Don't use casual language; doctors don't understand any words that aren't shown in a textbook

Don't be too descriptive when talking about your pain (this makes you sound too emotional, which makes you sound like you're exaggerating, which means you're a filthy liar and a fake)

Don't mention your other diagnosis/es - one appointment, one problem

If you've heard of a treatment that has worked for your condition that you haven't tried yet, no you haven't.

Remember to remind the doctor of your medical history in full, so that they don't prescribe you something you're allergic to, and if they do it's your fault

Don't talk about medication, you drug seeking addict

Make sure to mention what medication you've already tried to save the doctor's time trying to prescribe it again

It is up to you as a layman to know what drugs interact with what drugs you might already be taking; never check with the doctor, it is annoying to them

NEVER finish a sentence.

Could this symptom be related? No. No, it can't. Don't bring it up.

Don't leave out anything that could be vital to your diagnosis or treatment!

Pretend you don't know anything about your disability: doing otherwise provokes a threat response in doctors, which can present as correcting you incorrectly, or just shutting down and dismissing you entirely

If you are seeing a specialist for an un-related issue, make sure to let the doctor know; they'd like to join in and LARP as a specialist too!

Do not mention what it could be, because that is what it is not.

Always be deferential. (I mean, licking the floor is going overboard, but a little kneeling never hurt anyone)

And remember:

If it works, it's because the doctor did something right.

If it doesn't work, it's because you did something wrong.

(Also, you're fat, lose weight)

[seasonallydefective]

Search engines really need a toggle for “just the facts please” vs “some maniacs discussing this on Reddit”

Because sometimes I’m experiencing things science has yet to explore and I need the maniacs to validate me

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom The default assumption by all doctors should be to believe what patients say about their lived experience. I believe you. emojis: black heart, blue heart, masked 11:25 AM · Aug 13, 2023

[imgae-insertshockedgasps-16]

shout out to that time i had an extra bone and no one believed me

"it's just a bone bruise" "nothing came up on the x-ray" "it'll heal eventually"

guess what broskis it never went away and still causes me pain.

i went to a different place two years later cause it was still causing me problems and they looked at the original x-ray and immediately went "oh i think i see the problem but let's get another x-ray to be sure"

took the second x-ray, looked at it for maybe five seconds, "yep this right here is the problem. you have an extra bone in your foot here, and you moved it"

yeah and you know why it hurt so bad? bc it used to be attached to the bone next to it and i snapped it off.

turns out i have the same bone in my other foot too it just doesn't hurt bc i haven't done anything to it.

and that's why shoes used to always hurt my feet and never fit right.

and now i have expensive ass custom inserts that i have to replace every three years, and one specific kind of shoes from one specific brand that i have to replace every 15 months or so, cause i moved the bone, and then was on crutches for a solid year and then walked on it for a year.

that specifically doesn't hurt very often, as long as i take care of it, ie replacing my shoes and inserts and doing my pt exercises.

but it still hurts sometimes and i get wicked general foot pain.

it's gonna cause me massive problems for the rest of my life.

bc no one fucking believed me.

moral of the story: believe people when they tell you shit abt their body. believe disabled people. believe children. even if it seems ridiculous, or improbable. even if it turns out eventually that they're wrong, or that it's something else.

i was just a kid, idk maybe 10 or so, somewhere around there, and so no one believed me cause "that's ridiculous" and "the doctors said it was fine"

believe people.

[cookinguptales]

*stares at the camera in ehlers-danlos syndrome*

[thedisablednaturalist]

idk whats wrong with me.

I'm trying to exercise, eat healthier, get enough sleep. Just like the doctors say.

But I'm still, STILL, so..so tired. So unbelievably exhausted. I'm starting to think I might have ME or something. Fibro is supposed to be able to be managed with diet and exercise, according to my doctors *rolls eyes*.

I want to work hard like I used to. I want to have bright ideas and feel passion. I do, sometimes, but it's so hard to break through the fog and pain and exhaustion, and it doesn't last. I feel like I'm constantly trying to hide how stupid I am, I'm afraid my coworkers will find out how hard I'm really struggling. All the stuff they praise me for seem like they were all achievements from Before the illness, I don't feel like that person anymore.

But what am I supposed to do? I have to work, I have to make enough to stay out of my parents house. I can't go back there. So I'll keep fighting, hiding, crying, and doing my best to improve my health, even if that's only out of desperation.

[gentleward]

Sick of people saying they “have a migraine” to describe a headache. I know it’s only a figure of speech, but it really shouldn’t be. Migraine is an often debilitating set of symptoms beyond just headache. Headache is a symptom migraine. It’s like saying “I have arthritis” because your wrist hurts for a day. I feel like most people don’t even know those with chronic migraine can have a migraine and not even have a headache as a symptom. Migraine is a chronic condition with stages and symptoms often including aura, blindness, muscle weakness, nausea, frequent urination or lack of bladder control, even things like fever and syncope. It is often caused by electrical and chemical issues in the brain or other things like head trauma. It is truly debilitating. I wish it wasn’t just a synonym for “bad headache” in the general population.

[ethanthealien]

The observation that fibromyalgia patients had diffuse tenderness led to functional, chemical, and structural brain neuroimaging studies. These studies showed a biological basis for fibromyalgia pain and related pain amplification syndromes. Fibromyalgia patients experience pain for what patients without fibromyalgia perceive as touch. Functional magnetic resonance imaging studies of the brain response to these stimuli show brain activation patterns in pain processing areas in fibromyalgia patients when given a mild pressure or heat stimulus. -[Fibromyalgia: A Clinical Review]

[thoughtless-psychonaut]

"I'm chronically ill. I'm okay, but I'm always sick."

"Oh, I hope you get better soon."

I won't get better. I know this makes you feel better today, but It's been 7 years of this. It's been 4 since I was diagnosed and started treatment. It's been less than 2 years since I started to adapt. I'm not better. I never will be. I know that's uncomfortable for you to hear. It's uncomfortable for me to live. I don't resent you. I'm glad you don't understand. I just wish I didn't feel like such a fool for not getting better when other people can.

[necr0lysis]

fellow people who have something different about them: i am urging you to ask your doctors for written documentation of your diagnoses!

it doesn't matter if it's a general doctor a therapist a neurologist a specialist it doesn't matter!!!

just PLEASE have written proof that you are struggling or different or need medical attention or you experience things "wrong"

not only will it aid in fighting off imposter syndrome but take it from me, you do NOT want to be asked by a new doctor "what are your current diagnoses" and all you can say is "um you know i think i might have this and i was being tested for it but the doctor never actually told me he was diagnosing me w it so idk"

i have memory issues. i also do not understand people when they are vague. my psychiatrist diagnosed me with adhd by WHISPERING under his breath "adhd combined type" which of course isn't gonna validate me AT ALL WHEN I TOLD HIM I NEED TO READ IT ON PAPER FOR IT TO REGISTER IN MY BRAIN

here's the thing. having one thing wrong with you, makes you more likely to have other things wrong with you. you're physically disabled? chances are you deal with brain fog or memory issues or confusion. you deserve a written diagnosis! you're neurodivergent? chances are you have memory issues or ruminating thoughts or lower cognition. you deserve a written diagnosis!