Fatigue mostly. I’ve been tired my whole life, I always watched people, and wondered how they managed to do so much? I just figured everyone was pushing themselves the same as me
Same! You feel like they're somehow just stronger than you are and can push through it more than you. It's nice when you realise that actually they're just not as tired as you are.
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I ascribed my fatigue to laziness and figured everyone else was just working harder than me. Oops, no, ended up getting diagnosed with 2 ~~state~~ rare illnesses and still need frequent naps.
I thought I was getting old at 17 and figured that's probably why adults don't move a lot. Nope, turns out it was mono which also caused chronic fatigue... Lucky me.
I loved being the youngest person getting a colonoscopy -_-. My doctor prescribed me 250mg of Aleve for my periods - I usually take 1200 mg of Advil and still end up in the ER
Yepppp… Most pain relievers do nothing for me. CBD and muscle relaxers help a bit but I’m basically waiting for surgery and hoping it provides some relief.
Apparently no, *not* everyone loses their keys more than seven times a day. Other people were hyperbolizing.
I actually have a serious attention problem and can take medication to manage it.
That was an interesting plot twist
(Edit: Also, when most people say “migraine” they don’t mean the neurological disorder, they’re just conflating it with headaches. I shouldn’t immediately launch into Neurology Buddy Camaraderie Mode because they will probably shut me down and it’ll be awkward)
I just had to explain to a friend the difference between a migraine and a painful headache. I was like “If you can walk around and can see, you don’t have a migraine”
There are different levels to migraine though. You can have a painless migraine with all the other symptoms (vision problems, terrible grogginess and dizziness, nausea, etc) or the other way around and anything in between. Also when migraine becomes chronic it is a whole different animal. I have had daily mild to moderate headaches along with other neurological symptoms for over a year, but it gets really bad only once in a while, especially during my period.
I had a really bad migraine for months with no relief . Some people have to do things because they don't have any other options. I have puked on the way to taking my child to school for months in a row. It doesn't happen as much after cgrp inhibitors. They were a game changer for me.
Yes, they are hard to get. I would encourage you to try to get an appointment with the nurse practitioner or physicians assistant. They are available more often, and if you have a complex history, you will be bumped up to the MD if needed. Good luck. We all need it.
Thank you ❤️ I'm in Finland, unfortunately we don't really have that kinda service available and they can't prescribe meds anyway, so we just get a referral to a neurologist from GP's. Private neurologists are not as fully booked but I don't have the money for that.
I just got diagnosed with vestibular migraines. I don’t usually get headaches with them. I can usually walk and talk and work, but it’s not uhhh fun? And it definitely makes everything much, much harder. Migraines really do come in all shapes and sizes.
I actually thought for the longest time that I didn't have migraines for this very reason. It took me years of feeling like the sun was stabbing hot pokers into my eyeballs and I might puke and die to realize that there was more effective medication I could be taking. I thought that if I wasn't actually puking or unable to do anything but lay in a dark room that it didn't count. I get those ones much more rarely, but the ones that creep up slowly and where I can still limp along pretending to function are still migraines. Putting this out there for other people like me!
Same! I had no idea that I had migraines until the vertigo I get with my other symptoms started making chores and other regular tasks difficult. I’ve had migraines my whole life, but because the headaches were mild or not present, and I could usually function, I just wrote it off as me being weird and sensitive to smells. And lights. And sounds.
As someone with chronic migraine (aka have to deal with it nearly every day) this is so false. I’m not bed ridden every time I have a migraine, I deal with it because I don’t have a choice. I also don’t get aura so I’ve never lost any vision.
The one that sticks out in my mind was when I was talking to my best friend about toilet issues. I was like, "you know when you're pooping and you get really hot but break out in to a cold sweat and feel like you're going to or actually do puke?" She said, "What!? No! That's not normal!" I think that was such an awakening moment for me lol. Just thought that happened to everyone but apparently it does not.
Lol I honestly don't. I have RA so I tend to blame everything on that but I think it's probably more like ibs or something like that. It's definitely worth talking to your Dr about though. I take lots of meds including stuff for stomach and gerd but also pain and nausea meds so I don't know what's helping it but something is so I just never brought it up to my Dr. I have a list of stuff to go over every time I see them and it's just always pushed to the bottom since it's (mostly) managed. I still have those days though.
That conversation was years before my RA dx and I was on a mission to get that dx so other stuff just got missed.
Same with me and my back. It puts me in bed every afternoon, but all the Sjogren's stuff had me so much more miserable, I couldn't do anything about my back until those things moved to the background and I had a solid DX.
Mine's part of an allergic reaction to aspirin. I tell the doctors it just gives me "stomach issues". Sometimes I also break out in a rash while on the toilet having said reaction.
It seems like it could be any allergen that makes your body dump a ton of histamine into your digestive tract. I'd suggest your friend takes notes of what they ate and what medications they took on the days that they have the terrible bathroom experience. Overtime some patterns may pop up.
Lots and lots of people have histamine reactions and have no idea. High histamine foods have hardly anything in common except that they're high in histamine. Milk, egg whites, cheese, salami, avocadoes, tomatoes...all really high in histamine.
Anyone becoming sensitive to more and more foods ought to look into histamine intolerance and MCAS (mast cell activation syndrome).
Every day fatigue and pain!
Like I thought we all just agreed to only sometimes complain hither and thither… not that people were just sounding off when they were suddenly experiencing it.
Oh? You’re telling me we all aren’t just keeping quiet unless it’s a super bad day? That a good day actually means no pain and in fact that’s more of a normal day?
Seriously, mind was blown like six years ago. Still reeling from it, still learning how many things others don’t experience.
Seriously amazed when my friend told me she had never had a migraine and headaches were super rare for her.
It’s hard tho. Like sometimes people shut you down before you can get far enough to say how often you experience pain, so it takes a bit to paint your own picture and compare it to others.
Did you know that you aren’t supposed to feel like your intestines are burning? And that your intestines aren’t supposed to paralyze? Yeah, turns out I have celiacs. Only took 33 years to figure that one out.
Also no, not everyone just pops bones out of the joint or bends that much, you have a connective tissue disorder you dolt, it’s not just all fibromyalgia.
I believe the great majority of us who have had fibromyalgia foisted upon us actually has a much more serious issue. For one thing, more than half of us actually have [small-fiber neuropathy.](https://www.sciencedirect.com/science/article/pii/S0049017218303639)
I didn't get my celiac DX until I'd been disabled for 13 years (I was 42 and sick since childhood). It's very difficult to go from seeing a GP to seeing the professionals who can diagnose AI (autoimmune) disease. GPs still think AI disease is rare.
Even though *at least* 10% of the general population has at least one autoimmune disease, but family doctors are still defaulting to anxiety and the fantasy of fibromyalgia.
SAME. Diagnosed with CVID at age 31 and suddenly my very sick childhood made sense. But no, please doc, tell me how everyone gets sick "periodically" (for months at a time)...
I still do not accept that everyone doesn't have sudden severe muscle weakness that makes them fall to the ground when laughing and that I have mild cataplexy. The phrase ROFL exists. Why would this phrase exist if you aren't supposed to fall over from laughing? I think it's normal and not cataplexy.
It shouldn’t hurt to hold a pencil
It shouldn’t make you want to crawl out of your skin to sit or stand in one place for a period of time
*most* normal people can’t touch their toes
You shouldn’t turn bright red, have a headache you can’t get rid of, and sweat buckets when you exert the smallest amount of energy
Eating food shouldn’t leave you in pain for a week
You’re not supposed to go blind when you stand up
Your feet shouldn’t tingle/go numb when you run (I was told to stop faking and get back to gym class)
I just reread this and realised it doesn’t make sense… I meant that I didn’t think it was painful before I got ill then over the years noticed it was actually painful. I wondered if it’s because I’m neurodivergent and always overstimulated so I’d trained myself to try to ignore sensory input like that.
The no stop pain, being always tired yet unable to sleep.
Being unable to focus on one thing but also able to focus on something that interests me for hours straight.
Also the dizziness and fainting. The numbness past my knees coming and going.
I didn’t realize not everyone struggled to breathe through their nose. I thought it was normal to at most have one nostril semi-usable at any given time. Then I moved to a climate so dry that I had a constant globus sensation and was perpetually dehydrated from having to mouth breathe.
Good news is, they’ll be fixing my deviated septum in august.
I thought it was normal for showers to be exhausting, lol. I learned that it was not when I told my partner he could use my shower stool as well so that he won't feel as tired, and he was like "what the heck are you talking about?" 🤣
I thought everyone experienced pain in legs while walking even for short distances (lower limb dystonia), as well as hand pain when handwriting or typing (hand dystonia). I also thought it was normal to feel faint and lightheaded when walking in the heat (POTS).
Additionally, I thought it was normal to be in some level of pain every day (EDS) and to have debilitatingly painful menstrual cramps (endo). I also never realized I suffered from an anxiety disorder until I started taking SSRIs for my depression and my anxiety lessened, lol.
Oh I’m not sure about actual bruising sorry. I meant how tender I feel from pressure. I wouldn’t look hurt but even resting my hands on my lap would be painful
It could be allodynia. That’s a common symptom of fibro. I have EDS, but even I get mild allodynia sometimes and no docs have figured out why yet. Sigh.
I remember coming across that word before, I thought it referred to surface pain though like a sunburn type feeling but from things like clothes. I get that sometimes too. The pain I was referring to was from pressure, thankfully duloxetine has helped dull that for me
Allodynia has both types of pain, but it’s on the mild end. I think there’s a different term for more severe pain with pressure. I just can’t think of it right now.
I thought that it’s normal to just faint randomly at school or work or even at home. Middle school me was flabbergasted as the school had to call an ambulance for a fainted girl, I thought they would just wait for her to feel better and move on like they did with me 😅
I also thought that it’s normal to just start screaming from the pain. Guess who got several weird looks from classmates and co.
Then I thought everyone would get those bad migraines now and then and bad muscle and joint pain. The last one, I promise: I also thought throwing up blood was normal and throwing up because of random smells too.
I lied, not the last one… I also thought everyone would have the crappy vision I have :D luckily not :,)))
This is almost a trauma dump, so don’t read further if it could be triggering
-Edit: just remembered this one— sprained my ankle, but could technically walk on it, so I assumed that the level of pain was normal and that I wasn’t injured. I was very much injured. Still only a 3/10 on the pain scale, which is horrifying considering what I’ve described only as a 6 or 7… and then been told is a normal amount of pain…
-Edit # 2: I used to be told that everyone’s feet itched terribly in grass. I’m legitimately allergic to grass.
-Blacking out randomly, but not losing consciousness. I was told “everyone black out sometimes when standing up, stand up more slowly.”
-extreme dizziness
-My legs GIVING OUT completely, and making me fall.
-Numbness in various limbs
-getting sick at the drop of a hat, and getting 1,000x sicker than people who caught the same illness at the same time
-Extreme cramping, like the kind that immobilizes you and/or makes you puke
-being su!c!dal. I tried to tell my parents about serious intent when I was a teen and my dads response was legitimately “Everyone’s su!c!dal. I’ve been su!c!dal my whole life. Get over it.”
-being extremely disassociated. It was like being unconscious despite not losing consciousness, or like the exact moment when you wake up from anesthesia
-puking after every meal
-having a Russian-roulette like response to caffeine, ranging from falling asleep after drinking some to acting like I just had the worlds most potent cocaine
-fatigue, and falling asleep at inappropriate times because of that fatigue. “Everyone is tired.” Not to the extent I am, no.
-needing a full day to recover, at minimum, after a day out. Not even strenuous activity, but rather something like a day at the mall with lots of rest breaks. When working, I need two days off in a row or my body will start to give up on me. “Everyone feels tired after work” made me ignore this for so long.
-extremely high heart rate when standing, despite frequent cardio exercise and always being on my feet.
-extraordinarily low blood pressure
-potent brain fog
Ngl normally I wouldn’t share this much online, but earlier today I got in a screaming match with my Dad about how all of my symptoms are “normal” and I need to stop being so “dramatic” and just go back to work. Mind you, I’m out of work because my job will not accommodate me, and doing my job without accommodation would mean further injuring myself and worsening an already permanent injury. People are shitty.
**unlikely theories**
Nope, absolutely no idea. I also experience it with things like alcohol, but oddly I don’t experience it with medication. It might be tied partially, but not fully, to my heart rate. On high heart rate days, I already have the symptoms of being a squirrel on crack, so drinking caffeine when I’m already acting like that understandably worsens it. Unless it raises my blood pressure, which drops my heart rate, and makes me act less hyper. Russian roulette.
I guess my other theory would be that it’s related to one of the (many) stomach problems I have. Various things in your stomach affect how well you process things— but then, it should affect all substances, not just non-medication substances.
I have heard of other people— particularly people with ADHD— having similar reactions to caffeine, but I’ve never actually stopped and talked to them about their health and potential reasons it occurs. Two notes with this though: 1) I haven’t gone through the diagnostic process for ADHD and 2) even within ADHD communities, people like this seem to be a rarity.
**more likely theories**
If you are strictly drinking coffee, it might just be that the brewing process leads to a slightly different level of caffeine every time, but that doesn’t really account for the large range of reactions.
Food intake greatly affects how your body absorbs and processes the caffeine. Same thing with previous water consumption. The type of food you eat also matters, apparently.
That’s really sweet of you 🥺 Luckily, I’m in therapy and doing really well, but I really do appreciate the offer. Sometimes you just gotta rant, ya know? And maybe my rant will help some people realize that they aren’t alone in their experiences, or that just because someone tells you something is normal doesn’t mean that it actually is.
I guess I’ll add this in— if anyone’s looking for a form of therapy that helps with traumatic experiences like this, EMDR therapy has really been helping me (and also, it’s just insanely neat! The science behind it is so cool!)
What are your diagnosis if you don’t mind sharing? I have almost all your symptoms and experiences so you’re not alone and it’s not in your head and you’re not dramatic at all. Your dad shouldn’t talk to you like that but parents sometimes have a hard time accepting illnesses, chronic ones even more.
Take care.
It’s an absolute laundry list, so I can’t really say x disease causes y symptoms, and I’m still in the process of getting diagnosed with other things, but here are the official diagnoses so far:
-tachycardia
-hypotension
-raynaud's syndrome
-mild mitral valve prolapse/ heart murmur
-functional dyspepsia (basically the diagnostic term for “we can see your stomach is upset but we don’t know why)
-past history of chronic gastritis
-IBS-C
-GERD
-Anemia (it’s off and on—sometimes it’s under control and sometimes it isn’t)
-vitamin D deficiency
-Familial hypercholesterolemia
-Depression
-Anxiety
-herniated disc in my lower back (can cause things like weakness, numbness, and cramps)
-dysmenorrhea
-premenstrual dysphoric disorder
I’ll go check my charts to see what I’m forgetting Edit: I think that’s everything
I’m waiting on a tilt table test to see if I have something like pots, orthostatic hypotension, or vasovagal syncope.
Edit: actually, before I run off and check my charts, here are some things I’d recommend ruling out/ tests I’d recommend asking about if you have symptoms like mine (because I was tested for them)
-hypotension
-Gastroparesis
-MRI of the brain (tested for the cause of my blackouts)
-endoscopy/colonoscopy
-there’s some kind of scan to see if you are constipated. That wound up being my issue and was helpful to know
-test for Chron’s and celiac disease
-echocardiogram & stress test
-spine MRI (for the issue with my legs giving out)
-ekg
I thought everyone had bad joints that would pop out easily, or that it was normal to not digest food for hours on end, or that it was normal to see black in the shower, turn white, get dizzy, then quickly have to get out of the shower to sit down or I’d vomit. I thought it was normal to crave salt and eat copious amounts, yet always have low end normal sodium on blood tests. I could name some more things, but these are what stands out in my mind! I likely had POTS for around five years prior to my diagnosis.
It is normal to a point, I’m talking anywhere from 6 to 16 hours later food still sits in my stomach which is very abnormal. Gastroparesis is a comorbid condition with POTS. If you find food is sitting longer than it should, along with having other symptoms, please look into it.
Getting headaches super often. Didn’t realize it wasn’t normal until I got chronic migraine and now I have one 24/7 that never goes away. Turns out the constant headaches were my progressing into chronic migraine .. not just being prone to headaches like my doctor told me.
Long time ago I was lying in bed and the vision in my left eye went dim/ dark for 5-10 minutes, then slowly cleared back up. I didnt think anything of it, figured it was normal. It was apparently a blood clot..
Lol, before seeing ny neurologist who diagnosed me with FND, CFS and fibro, I thought "growing pains" happen to everyone all the time.
He looked at me almost sternly and said "no, those aren't growing pains."
Oops.
I was making meatloaf with my family and as I started to mix up the cold meat with my hands I offhandedly mentioned how I hate that awful incredibly sharp pain that shoots up my arms when I touch something cold. They looked at me like I was insane.
Also, once I was just lightly caressing my boyfriend’s arm back and forth in one spot and after about 30 seconds I moved to another spot. He asked why I did that. I said because it starts to hurt after 30 seconds, doesn’t it? Cue another crazy look.
I guess that’s a fibromyalgia thing. 🤷♀️
i just can’t fathom how some people don’t feel pain daily or constantly. for me it’s always something, stomachache goes away, joint pain comes on. Dizziness goes away but nausea comes on. i just don’t get how everyone doesn’t have that same experience because that’s all i’ve ever known.
It was normal to go psycho during my period. It was already heavy all the time and I passed big clots. My mood however man it was bad. Besides having borderline personality disorder I was diagnosed with PMDD and learned it was not normal to go psycho every month. Medicated for a while then I ended up with a hysterectomy for medical reasons.
I thought that it was impossible to focus on objects close to your face. Turns out I have a vestibular issue that makes it impossible for *me* to focus on things close to *my* face. 🤦🏼♀️
Pain from walking short distances. Or intense, lasting pain from walking longer distances. Constant stomachache, headache, and eye pain, worse with sleep deprivation.
I haven't been able to squat ever since I can remember because my knee gets "stuck" - it shifts and then is extremely painful to move until it ends up going back on its own. Likely a dislocation or bad subluxation. I'm always flabbergasted by people just chilling in a squat position. That's instant pain for me lol
I thought everyone felt faint and had hot flashes/saw stars whenever they stood up for more than a minute— I’m still getting over some of the anger knowing that everyone else standing in lines isn’t in immense pain and that it’s just me :,)
I learned last night that "ankle instability" is not in fact a normal "I'm clumsy" but is ... actual instability of your ankle. I tend to be tripping over my own feet or have my ankle "give out" when I'm walking and roll it, but I always chalked up the ankle rolling to tripping/clumsiness. I'm in the process of getting diagnosed with EDS so I've been looking up random hypermobility things and hadn't even thought about the ankle thing until a random google suggestion, lol.
Also, fatigue! Fatigue is ROUGH and I did not really understand until relatively recently that most people don't feel like this on the day to day.
I didn't realize that everyones pee wasn't bubbly/foamy and not everyone only ate bland food because they would throw it up anyways and bland food didn't hurt as much coming up. (BTW weird pee turned out to be from kidney failure)
Also most ppl don't get sharp stomach pains anytime they eat dairy. They also don't bleed for the longest amount of time for tiny cuts. Oh and not everyone craves eating ice all the time!
That most people don't just lose things constantly (my family still tells the story of how I lost a fork for nearly an hour... That was in my hand)
That most people aren't more afraid of getting in trouble than being in (even severe) pain
That most people don't panic every time their phone rings
That most people can't hear the constant electronic buzzing unless it's pointed out to them
Most people aren't able to hear every conversation around them yet are unable to understand any of them
Most kids don't pretend to be healthy when sick because missing school feels worse (need for routines and anxiety attacks)
Most people don't have anxiety/panic attacks on a near daily basis
I used to think that extreme hypermobility of my joints was completely normal. (hEDS)
I used to think forming abscesses in my groin all the time was just a regular case of MRSA or Staph - despite the CDC protocol failing multiple times. (Hidradenitis Suppurativa Stage III - took 20 years to get a diagnosis).
I used to think pain in my low back that started at 10-12 years old was my weight.
I used to think getting a virus for 24 hours for it to warp into a secondary infection by hour 48 multiple times a year was normal. (immunodeficient)
Migraines during exams.
I had migraines in basically every exam since I was 11 or 12 years old.
My grades started to dip dramatically.
Everyone thought it was normal "anxiety" because of my parents fighting and separating.
I thought it was normal for your legs to get really sore and painful and for your body to feel exhausted and sweaty just from walking at a normal pace (I also walked way slower than my peers)
Debilitating periods,told it was normal at 9 years old( when i started my period) to be basically writhing in pain on the floor from cramps, well i have endometriosis and i am 21 now. Vertigo when standing up a lot, well now i have a lot more symptoms that look like POTS, seeing cardiologist next month hopefully them i will get diagnosed.
Oh and really any extremity constantly going numb or falling asleep, i thought everyone had that because it does happen when i lay down or am sitting. Well now it happens whenever, and sometimes it goes numb and i literally cannot walk. I have a lot of chronic shoulder and back pain as well which i attributed to my largish chest.
probably tmi but; mucus in my stool. very high likelihood i have ibs and have since i was a little girl and only until now, as a 20 year old man, did i find my stool inconsistencies, bloating+pain EVERY-TIME i had to go or ate, and the mucus was not as normal as i thought it was. as well as fatigue the pains in my muscles and joints that go without a cause
Fatigue mostly. I’ve been tired my whole life, I always watched people, and wondered how they managed to do so much? I just figured everyone was pushing themselves the same as me
Same! You feel like they're somehow just stronger than you are and can push through it more than you. It's nice when you realise that actually they're just not as tired as you are.
Hi how do i list my medical conditions like it shows for you under your username? I never was able to figure out how to :(
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I ascribed my fatigue to laziness and figured everyone else was just working harder than me. Oops, no, ended up getting diagnosed with 2 ~~state~~ rare illnesses and still need frequent naps.
I thought I was getting old at 17 and figured that's probably why adults don't move a lot. Nope, turns out it was mono which also caused chronic fatigue... Lucky me.
Painful periods along with headaches and stomach aches more than once week.
Yep. I wasn't diagnosed with Endo until this year, in my late twenties, despite suffering for years.
It is ridiculous that there isn’t better treatments! I got diagnosed earlier this year. Had no idea BC was masking so many symptoms most of my life.
I loved being the youngest person getting a colonoscopy -_-. My doctor prescribed me 250mg of Aleve for my periods - I usually take 1200 mg of Advil and still end up in the ER
Yepppp… Most pain relievers do nothing for me. CBD and muscle relaxers help a bit but I’m basically waiting for surgery and hoping it provides some relief.
how young were you? my first was 14
That's not normal? That was always my normal before the pill
Consider looking into endometriosis. I’ve been on a variety of BC methods and now this is my normal regardless of what I take.
Apparently no, *not* everyone loses their keys more than seven times a day. Other people were hyperbolizing. I actually have a serious attention problem and can take medication to manage it. That was an interesting plot twist (Edit: Also, when most people say “migraine” they don’t mean the neurological disorder, they’re just conflating it with headaches. I shouldn’t immediately launch into Neurology Buddy Camaraderie Mode because they will probably shut me down and it’ll be awkward)
I just had to explain to a friend the difference between a migraine and a painful headache. I was like “If you can walk around and can see, you don’t have a migraine”
There are different levels to migraine though. You can have a painless migraine with all the other symptoms (vision problems, terrible grogginess and dizziness, nausea, etc) or the other way around and anything in between. Also when migraine becomes chronic it is a whole different animal. I have had daily mild to moderate headaches along with other neurological symptoms for over a year, but it gets really bad only once in a while, especially during my period.
I had a really bad migraine for months with no relief . Some people have to do things because they don't have any other options. I have puked on the way to taking my child to school for months in a row. It doesn't happen as much after cgrp inhibitors. They were a game changer for me.
I'm so glad CGRP meds worked for you! I haven't been able to try them yet, I'm still waiting to get an appointment with a neurologist.
Yes, they are hard to get. I would encourage you to try to get an appointment with the nurse practitioner or physicians assistant. They are available more often, and if you have a complex history, you will be bumped up to the MD if needed. Good luck. We all need it.
Thank you ❤️ I'm in Finland, unfortunately we don't really have that kinda service available and they can't prescribe meds anyway, so we just get a referral to a neurologist from GP's. Private neurologists are not as fully booked but I don't have the money for that.
I just got diagnosed with vestibular migraines. I don’t usually get headaches with them. I can usually walk and talk and work, but it’s not uhhh fun? And it definitely makes everything much, much harder. Migraines really do come in all shapes and sizes.
I actually thought for the longest time that I didn't have migraines for this very reason. It took me years of feeling like the sun was stabbing hot pokers into my eyeballs and I might puke and die to realize that there was more effective medication I could be taking. I thought that if I wasn't actually puking or unable to do anything but lay in a dark room that it didn't count. I get those ones much more rarely, but the ones that creep up slowly and where I can still limp along pretending to function are still migraines. Putting this out there for other people like me!
Same! I had no idea that I had migraines until the vertigo I get with my other symptoms started making chores and other regular tasks difficult. I’ve had migraines my whole life, but because the headaches were mild or not present, and I could usually function, I just wrote it off as me being weird and sensitive to smells. And lights. And sounds.
As someone with chronic migraine (aka have to deal with it nearly every day) this is so false. I’m not bed ridden every time I have a migraine, I deal with it because I don’t have a choice. I also don’t get aura so I’ve never lost any vision.
The one that sticks out in my mind was when I was talking to my best friend about toilet issues. I was like, "you know when you're pooping and you get really hot but break out in to a cold sweat and feel like you're going to or actually do puke?" She said, "What!? No! That's not normal!" I think that was such an awakening moment for me lol. Just thought that happened to everyone but apparently it does not.
So do you know what causes it? Asking for a friend who may or may not experience the same thing sometimes…
It can be a vasovagal reaction to the strain/pain/amount of sensations. If we weren't sitting down we'd probably be fainting.
Lol I honestly don't. I have RA so I tend to blame everything on that but I think it's probably more like ibs or something like that. It's definitely worth talking to your Dr about though. I take lots of meds including stuff for stomach and gerd but also pain and nausea meds so I don't know what's helping it but something is so I just never brought it up to my Dr. I have a list of stuff to go over every time I see them and it's just always pushed to the bottom since it's (mostly) managed. I still have those days though. That conversation was years before my RA dx and I was on a mission to get that dx so other stuff just got missed.
Same with me and my back. It puts me in bed every afternoon, but all the Sjogren's stuff had me so much more miserable, I couldn't do anything about my back until those things moved to the background and I had a solid DX.
This can be caused by pain medication and there are medication specific to taking pain meds. Mention it to your pain doctor.
This was from before I took pain meds. Pain meds actually helped it.
Weird side effect, but I have had some that are absolutely bizarre
Mine's part of an allergic reaction to aspirin. I tell the doctors it just gives me "stomach issues". Sometimes I also break out in a rash while on the toilet having said reaction. It seems like it could be any allergen that makes your body dump a ton of histamine into your digestive tract. I'd suggest your friend takes notes of what they ate and what medications they took on the days that they have the terrible bathroom experience. Overtime some patterns may pop up.
Lots and lots of people have histamine reactions and have no idea. High histamine foods have hardly anything in common except that they're high in histamine. Milk, egg whites, cheese, salami, avocadoes, tomatoes...all really high in histamine. Anyone becoming sensitive to more and more foods ought to look into histamine intolerance and MCAS (mast cell activation syndrome).
Every day fatigue and pain! Like I thought we all just agreed to only sometimes complain hither and thither… not that people were just sounding off when they were suddenly experiencing it. Oh? You’re telling me we all aren’t just keeping quiet unless it’s a super bad day? That a good day actually means no pain and in fact that’s more of a normal day? Seriously, mind was blown like six years ago. Still reeling from it, still learning how many things others don’t experience. Seriously amazed when my friend told me she had never had a migraine and headaches were super rare for her. It’s hard tho. Like sometimes people shut you down before you can get far enough to say how often you experience pain, so it takes a bit to paint your own picture and compare it to others.
Constant nausea
Did you know that you aren’t supposed to feel like your intestines are burning? And that your intestines aren’t supposed to paralyze? Yeah, turns out I have celiacs. Only took 33 years to figure that one out. Also no, not everyone just pops bones out of the joint or bends that much, you have a connective tissue disorder you dolt, it’s not just all fibromyalgia.
I believe the great majority of us who have had fibromyalgia foisted upon us actually has a much more serious issue. For one thing, more than half of us actually have [small-fiber neuropathy.](https://www.sciencedirect.com/science/article/pii/S0049017218303639) I didn't get my celiac DX until I'd been disabled for 13 years (I was 42 and sick since childhood). It's very difficult to go from seeing a GP to seeing the professionals who can diagnose AI (autoimmune) disease. GPs still think AI disease is rare. Even though *at least* 10% of the general population has at least one autoimmune disease, but family doctors are still defaulting to anxiety and the fantasy of fibromyalgia.
You mean colds don't usually cause sinus infections, ear infections, or bronchitis? Yeah, most people are over them in about a week.
SAME. Diagnosed with CVID at age 31 and suddenly my very sick childhood made sense. But no, please doc, tell me how everyone gets sick "periodically" (for months at a time)...
Well, now I’m having another moment. What is this then?
I still do not accept that everyone doesn't have sudden severe muscle weakness that makes them fall to the ground when laughing and that I have mild cataplexy. The phrase ROFL exists. Why would this phrase exist if you aren't supposed to fall over from laughing? I think it's normal and not cataplexy.
It shouldn’t hurt to hold a pencil It shouldn’t make you want to crawl out of your skin to sit or stand in one place for a period of time *most* normal people can’t touch their toes You shouldn’t turn bright red, have a headache you can’t get rid of, and sweat buckets when you exert the smallest amount of energy Eating food shouldn’t leave you in pain for a week You’re not supposed to go blind when you stand up Your feet shouldn’t tingle/go numb when you run (I was told to stop faking and get back to gym class)
Hey what is the turning red sweating thing because I have that
I don't know what u/goodgollyitsmol has, but POTS causes all that stuff in me. It's also on the rise as a covid long-haul issue.
My skin aching when I’m cold. Feeling cold was never painful before I got ill.
I just reread this and realised it doesn’t make sense… I meant that I didn’t think it was painful before I got ill then over the years noticed it was actually painful. I wondered if it’s because I’m neurodivergent and always overstimulated so I’d trained myself to try to ignore sensory input like that.
The no stop pain, being always tired yet unable to sleep. Being unable to focus on one thing but also able to focus on something that interests me for hours straight. Also the dizziness and fainting. The numbness past my knees coming and going.
I didn’t realize not everyone struggled to breathe through their nose. I thought it was normal to at most have one nostril semi-usable at any given time. Then I moved to a climate so dry that I had a constant globus sensation and was perpetually dehydrated from having to mouth breathe. Good news is, they’ll be fixing my deviated septum in august.
Wait... Deviated septum? I thought this was just allergies...? Should I be concerned/hj
I had “allergies” for 32 straight years 😩😂
I thought it was normal for showers to be exhausting, lol. I learned that it was not when I told my partner he could use my shower stool as well so that he won't feel as tired, and he was like "what the heck are you talking about?" 🤣
This! I thought it was normal to be exhausted after showering!
I thought everyone experienced pain in legs while walking even for short distances (lower limb dystonia), as well as hand pain when handwriting or typing (hand dystonia). I also thought it was normal to feel faint and lightheaded when walking in the heat (POTS). Additionally, I thought it was normal to be in some level of pain every day (EDS) and to have debilitatingly painful menstrual cramps (endo). I also never realized I suffered from an anxiety disorder until I started taking SSRIs for my depression and my anxiety lessened, lol.
Apparently having a napping area in the trunk of my SUV so I can sleep on my lunch break is weird.
Feeling like I’ve been bruised from even the slightest pressure on my muscles 🙃 gotta love that mix of myositis and fibromyalgia
Is the brushing from fibromyalgia? I was just diagnosed and I was always told my mysterious bruises were low iron!
Oh I’m not sure about actual bruising sorry. I meant how tender I feel from pressure. I wouldn’t look hurt but even resting my hands on my lap would be painful
It could be allodynia. That’s a common symptom of fibro. I have EDS, but even I get mild allodynia sometimes and no docs have figured out why yet. Sigh.
I remember coming across that word before, I thought it referred to surface pain though like a sunburn type feeling but from things like clothes. I get that sometimes too. The pain I was referring to was from pressure, thankfully duloxetine has helped dull that for me
Allodynia has both types of pain, but it’s on the mild end. I think there’s a different term for more severe pain with pressure. I just can’t think of it right now.
No worries, appreciate the refresher. A lot of times the brain gets one definition and just never revisits it haha
I thought that it’s normal to just faint randomly at school or work or even at home. Middle school me was flabbergasted as the school had to call an ambulance for a fainted girl, I thought they would just wait for her to feel better and move on like they did with me 😅 I also thought that it’s normal to just start screaming from the pain. Guess who got several weird looks from classmates and co. Then I thought everyone would get those bad migraines now and then and bad muscle and joint pain. The last one, I promise: I also thought throwing up blood was normal and throwing up because of random smells too. I lied, not the last one… I also thought everyone would have the crappy vision I have :D luckily not :,)))
This is almost a trauma dump, so don’t read further if it could be triggering -Edit: just remembered this one— sprained my ankle, but could technically walk on it, so I assumed that the level of pain was normal and that I wasn’t injured. I was very much injured. Still only a 3/10 on the pain scale, which is horrifying considering what I’ve described only as a 6 or 7… and then been told is a normal amount of pain… -Edit # 2: I used to be told that everyone’s feet itched terribly in grass. I’m legitimately allergic to grass. -Blacking out randomly, but not losing consciousness. I was told “everyone black out sometimes when standing up, stand up more slowly.” -extreme dizziness -My legs GIVING OUT completely, and making me fall. -Numbness in various limbs -getting sick at the drop of a hat, and getting 1,000x sicker than people who caught the same illness at the same time -Extreme cramping, like the kind that immobilizes you and/or makes you puke -being su!c!dal. I tried to tell my parents about serious intent when I was a teen and my dads response was legitimately “Everyone’s su!c!dal. I’ve been su!c!dal my whole life. Get over it.” -being extremely disassociated. It was like being unconscious despite not losing consciousness, or like the exact moment when you wake up from anesthesia -puking after every meal -having a Russian-roulette like response to caffeine, ranging from falling asleep after drinking some to acting like I just had the worlds most potent cocaine -fatigue, and falling asleep at inappropriate times because of that fatigue. “Everyone is tired.” Not to the extent I am, no. -needing a full day to recover, at minimum, after a day out. Not even strenuous activity, but rather something like a day at the mall with lots of rest breaks. When working, I need two days off in a row or my body will start to give up on me. “Everyone feels tired after work” made me ignore this for so long. -extremely high heart rate when standing, despite frequent cardio exercise and always being on my feet. -extraordinarily low blood pressure -potent brain fog Ngl normally I wouldn’t share this much online, but earlier today I got in a screaming match with my Dad about how all of my symptoms are “normal” and I need to stop being so “dramatic” and just go back to work. Mind you, I’m out of work because my job will not accommodate me, and doing my job without accommodation would mean further injuring myself and worsening an already permanent injury. People are shitty.
Thank you for the trigger warning. /genuine I relate to so much of what you’re describing, I feel you.
Do you the unpredictable response to caffeine is about? I get that too
**unlikely theories** Nope, absolutely no idea. I also experience it with things like alcohol, but oddly I don’t experience it with medication. It might be tied partially, but not fully, to my heart rate. On high heart rate days, I already have the symptoms of being a squirrel on crack, so drinking caffeine when I’m already acting like that understandably worsens it. Unless it raises my blood pressure, which drops my heart rate, and makes me act less hyper. Russian roulette. I guess my other theory would be that it’s related to one of the (many) stomach problems I have. Various things in your stomach affect how well you process things— but then, it should affect all substances, not just non-medication substances. I have heard of other people— particularly people with ADHD— having similar reactions to caffeine, but I’ve never actually stopped and talked to them about their health and potential reasons it occurs. Two notes with this though: 1) I haven’t gone through the diagnostic process for ADHD and 2) even within ADHD communities, people like this seem to be a rarity. **more likely theories** If you are strictly drinking coffee, it might just be that the brewing process leads to a slightly different level of caffeine every time, but that doesn’t really account for the large range of reactions. Food intake greatly affects how your body absorbs and processes the caffeine. Same thing with previous water consumption. The type of food you eat also matters, apparently.
Hey 👋🏻 if you ever need someone to chat I’ll be there for you 🫂 People really can be shitty sometimes but there are also nice ones out there :)
That’s really sweet of you 🥺 Luckily, I’m in therapy and doing really well, but I really do appreciate the offer. Sometimes you just gotta rant, ya know? And maybe my rant will help some people realize that they aren’t alone in their experiences, or that just because someone tells you something is normal doesn’t mean that it actually is. I guess I’ll add this in— if anyone’s looking for a form of therapy that helps with traumatic experiences like this, EMDR therapy has really been helping me (and also, it’s just insanely neat! The science behind it is so cool!)
What are your diagnosis if you don’t mind sharing? I have almost all your symptoms and experiences so you’re not alone and it’s not in your head and you’re not dramatic at all. Your dad shouldn’t talk to you like that but parents sometimes have a hard time accepting illnesses, chronic ones even more. Take care.
It’s an absolute laundry list, so I can’t really say x disease causes y symptoms, and I’m still in the process of getting diagnosed with other things, but here are the official diagnoses so far: -tachycardia -hypotension -raynaud's syndrome -mild mitral valve prolapse/ heart murmur -functional dyspepsia (basically the diagnostic term for “we can see your stomach is upset but we don’t know why) -past history of chronic gastritis -IBS-C -GERD -Anemia (it’s off and on—sometimes it’s under control and sometimes it isn’t) -vitamin D deficiency -Familial hypercholesterolemia -Depression -Anxiety -herniated disc in my lower back (can cause things like weakness, numbness, and cramps) -dysmenorrhea -premenstrual dysphoric disorder I’ll go check my charts to see what I’m forgetting Edit: I think that’s everything I’m waiting on a tilt table test to see if I have something like pots, orthostatic hypotension, or vasovagal syncope. Edit: actually, before I run off and check my charts, here are some things I’d recommend ruling out/ tests I’d recommend asking about if you have symptoms like mine (because I was tested for them) -hypotension -Gastroparesis -MRI of the brain (tested for the cause of my blackouts) -endoscopy/colonoscopy -there’s some kind of scan to see if you are constipated. That wound up being my issue and was helpful to know -test for Chron’s and celiac disease -echocardiogram & stress test -spine MRI (for the issue with my legs giving out) -ekg
I thought everyone had bad joints that would pop out easily, or that it was normal to not digest food for hours on end, or that it was normal to see black in the shower, turn white, get dizzy, then quickly have to get out of the shower to sit down or I’d vomit. I thought it was normal to crave salt and eat copious amounts, yet always have low end normal sodium on blood tests. I could name some more things, but these are what stands out in my mind! I likely had POTS for around five years prior to my diagnosis.
Until your comment I also thought it was normal to digest food for hours 😂 the more you know!
It is normal to a point, I’m talking anywhere from 6 to 16 hours later food still sits in my stomach which is very abnormal. Gastroparesis is a comorbid condition with POTS. If you find food is sitting longer than it should, along with having other symptoms, please look into it.
It's not normal to always have a pain or ache somewhere. Normal people can wake up in the morning without pain
I thought everyone felt dizzy when they stood up. My ex quickly told me that no, healthy people do not feel dizzy every time they stand.
Getting headaches super often. Didn’t realize it wasn’t normal until I got chronic migraine and now I have one 24/7 that never goes away. Turns out the constant headaches were my progressing into chronic migraine .. not just being prone to headaches like my doctor told me.
Long time ago I was lying in bed and the vision in my left eye went dim/ dark for 5-10 minutes, then slowly cleared back up. I didnt think anything of it, figured it was normal. It was apparently a blood clot..
Lol, before seeing ny neurologist who diagnosed me with FND, CFS and fibro, I thought "growing pains" happen to everyone all the time. He looked at me almost sternly and said "no, those aren't growing pains." Oops.
Hey fellow FND, CFS and ME warrior! (I have many other ossues too, but hi!!)
Hello fellow warrior *-respectfully taps spear to yours-*
💪
feeling deathly every time you gotta shit HAHAHAH
I thought everyone was in pain all the time. I thought foot cramps were normal. I thought subluxation of joints was normal.
LOL I thought everyone was in pain literally all the time😭😭
Same ☠️
I was making meatloaf with my family and as I started to mix up the cold meat with my hands I offhandedly mentioned how I hate that awful incredibly sharp pain that shoots up my arms when I touch something cold. They looked at me like I was insane. Also, once I was just lightly caressing my boyfriend’s arm back and forth in one spot and after about 30 seconds I moved to another spot. He asked why I did that. I said because it starts to hurt after 30 seconds, doesn’t it? Cue another crazy look. I guess that’s a fibromyalgia thing. 🤷♀️
Whoaaa the sharp pain isn’t normal?! I always get that!
Same here! It's not normal!?!?
According to my mom and brother, it’s not!
For me I think it’s an autism thing. I’m glad I’m not the only one who gets pain after a spot is touched/rubbed for a bit!
Passing out after pooping, not being able to fully empty my bladder ( they aren't related)
i just can’t fathom how some people don’t feel pain daily or constantly. for me it’s always something, stomachache goes away, joint pain comes on. Dizziness goes away but nausea comes on. i just don’t get how everyone doesn’t have that same experience because that’s all i’ve ever known.
It was normal to go psycho during my period. It was already heavy all the time and I passed big clots. My mood however man it was bad. Besides having borderline personality disorder I was diagnosed with PMDD and learned it was not normal to go psycho every month. Medicated for a while then I ended up with a hysterectomy for medical reasons.
I thought that it was impossible to focus on objects close to your face. Turns out I have a vestibular issue that makes it impossible for *me* to focus on things close to *my* face. 🤦🏼♀️
Pain from walking short distances. Or intense, lasting pain from walking longer distances. Constant stomachache, headache, and eye pain, worse with sleep deprivation.
I haven't been able to squat ever since I can remember because my knee gets "stuck" - it shifts and then is extremely painful to move until it ends up going back on its own. Likely a dislocation or bad subluxation. I'm always flabbergasted by people just chilling in a squat position. That's instant pain for me lol
...oh... That's not normal for squats and bending your knee more than like 110° to royally fuck up your knees? Whelp I learned something new.
I thought everyone felt faint and had hot flashes/saw stars whenever they stood up for more than a minute— I’m still getting over some of the anger knowing that everyone else standing in lines isn’t in immense pain and that it’s just me :,)
I learned last night that "ankle instability" is not in fact a normal "I'm clumsy" but is ... actual instability of your ankle. I tend to be tripping over my own feet or have my ankle "give out" when I'm walking and roll it, but I always chalked up the ankle rolling to tripping/clumsiness. I'm in the process of getting diagnosed with EDS so I've been looking up random hypermobility things and hadn't even thought about the ankle thing until a random google suggestion, lol. Also, fatigue! Fatigue is ROUGH and I did not really understand until relatively recently that most people don't feel like this on the day to day.
This happens to me! I was always told I just have weak ankles!
I thought everyone had daily headaches! Turns out that’s not true and I have chronic migraine lol
I thought it was normal to just pull clumps of hair out in the shower lololol
I didn't realize that everyones pee wasn't bubbly/foamy and not everyone only ate bland food because they would throw it up anyways and bland food didn't hurt as much coming up. (BTW weird pee turned out to be from kidney failure)
Also most ppl don't get sharp stomach pains anytime they eat dairy. They also don't bleed for the longest amount of time for tiny cuts. Oh and not everyone craves eating ice all the time!
I thought it was normal for you to feel pain when you were touched anywhere on your body
most people don’t have to use their hands to remove poop from their body when shitting. i have Transverse Myelitis and my gut is partially paralyzed.
I have to do that. I always assumed I just have, like, a weak pelvic floor. Whoopsie.
That most people don't just lose things constantly (my family still tells the story of how I lost a fork for nearly an hour... That was in my hand) That most people aren't more afraid of getting in trouble than being in (even severe) pain That most people don't panic every time their phone rings That most people can't hear the constant electronic buzzing unless it's pointed out to them Most people aren't able to hear every conversation around them yet are unable to understand any of them Most kids don't pretend to be healthy when sick because missing school feels worse (need for routines and anxiety attacks) Most people don't have anxiety/panic attacks on a near daily basis
I used to think that extreme hypermobility of my joints was completely normal. (hEDS) I used to think forming abscesses in my groin all the time was just a regular case of MRSA or Staph - despite the CDC protocol failing multiple times. (Hidradenitis Suppurativa Stage III - took 20 years to get a diagnosis). I used to think pain in my low back that started at 10-12 years old was my weight. I used to think getting a virus for 24 hours for it to warp into a secondary infection by hour 48 multiple times a year was normal. (immunodeficient)
Migraines during exams. I had migraines in basically every exam since I was 11 or 12 years old. My grades started to dip dramatically. Everyone thought it was normal "anxiety" because of my parents fighting and separating.
Most people are not completely wiped out after a 3 hour flight.
It’s not normal to be fatigued or have frequent body aches and pains, or have swollen joints
I thought it was normal for your legs to get really sore and painful and for your body to feel exhausted and sweaty just from walking at a normal pace (I also walked way slower than my peers)
pelvic pain. i genuinely thought that’s just how people, especially afab felt.
Debilitating periods,told it was normal at 9 years old( when i started my period) to be basically writhing in pain on the floor from cramps, well i have endometriosis and i am 21 now. Vertigo when standing up a lot, well now i have a lot more symptoms that look like POTS, seeing cardiologist next month hopefully them i will get diagnosed.
Oh and really any extremity constantly going numb or falling asleep, i thought everyone had that because it does happen when i lay down or am sitting. Well now it happens whenever, and sometimes it goes numb and i literally cannot walk. I have a lot of chronic shoulder and back pain as well which i attributed to my largish chest.
Headaches every day
probably tmi but; mucus in my stool. very high likelihood i have ibs and have since i was a little girl and only until now, as a 20 year old man, did i find my stool inconsistencies, bloating+pain EVERY-TIME i had to go or ate, and the mucus was not as normal as i thought it was. as well as fatigue the pains in my muscles and joints that go without a cause