"Normal" and "Concerning" take on entirely new meanings when you've got chronic pain. Also, gotta love when you go to the doctor for answers and they're like "Welp, your bloodwork is normal and we didn't see anything on the x-rays, you're perfectly healthy and can go home" while you sit there in pain being like "Um. No?"
Yeah so many doctors I have been to in the last few months they say the same thing. And when I say "But I'm still in incapacitating pain. What can we do?" it's so surreal to watch medical "professionals" go blank and eyes just glaze over because they don't want to acknowledge the question. Literally sitting in silence for a full minute while they hope that you forget what you just asked.
That was the key phrase that everyone should listen to. It's that single phrase that determines whether or not you should go to the hospital. "The pain is different"
“It’s really hard to know what’s serious and what’s just your body being dumb” - don’t think I’ve ever heard something so true. So much of the time when I get new pains I just assume that’s another things I’ve gotta deal with but never know when it’s actually something genuinely bad
Right? I almost had my gallbladder fail or whatever lol on me when i was 14 i didnt know it was serious till i had pains at home too I thought it was due to my anxiety but nope
Omg same here!!! I almost left a severe sinus infection after surgery go because I figured it was just how slow my stupid body heals and that I always have pain so it’s probably just a migraine again.
But if you go in too soon as a person with a chronic illness, you get accused of faking it and just pill seeking. I've given up on getting an answer to my nerve and joint pain because I saw this shift starting to happen with the doctors. Damned if you do and damned if you don't!
@@lavenderkoi4931 Thank you. It hasn't changed in 2 years, I think it just is what it is. If things start to change, I will try getting things figured out again.
Yeah the hypocrisy sucks. If it's actually serious they scold you for not coming in sooner. But if it's not then you're a drug seeking time waster. Or it's serious and they yell at you anyway and try and send you home without treatment. I've gone in cause I hadn't been able to eat or drink for two days, throwing up almost the whole time and unable to even keep my nausea meds down because my migraine had gotten really bad on a Friday night and I couldn't wait till Monday morning to get into my neuros infusion center. I was told that wasn't an emergency and I shouldn't have been there. Even though I was definitely pretty dehydrated. After my friend who took me yelled at them they agreed to give me fluids and the med cocktail that works best for my migraine.
I'm about to start on this mission myself of trying to figure out wtf is happening to me. Since I got the second dose of the vaccine I got severe joint pain as a side effect. Except it never went away. It's been 12 weeks and I'm in pain 24/7 and my hips just won't cooperate to allow me to even function in my daily life anymore. I went to this from never having joint issues so I'm very confused about how I ended up here. I'm trying to mentally prepared to basically fight my way through shitty treatment from doctors who will be dismissive or potentially even accusing me of seeking pain control.
I have 40 yrs of experience with drs...i recommend you AVOID them at all costs unless its life or death (even then, I would think twice). Treat yourself holistically. I didnt get better until I stopped taking their poisons. The medical mafia and RUclips censors can all go to hell!
Get scolded for coming in for something not serious, get scolded for not coming in sooner when it is serious. Almost lost a lung for not coming in soon enough in 2020, but I thought it was better to tough out chest pain I’ve felt before than waste the ER doctor’s time. It’s a horrible situation to be in. Fortunately, I was able to keep my lung and more importantly you kept your life. Very happy to hear you are doing better.
Maybe those doctors need to get this thrown back at them when they start scolding: "last time you scolded me for coming in at all and wasting ER time."
It's especially frustrating because, as you mentioned, when people with chronic issues DO seek medical attention, we're often really passive aggressively told off by the people supposed to be helping us & made to feel like we're wasting med staff's time, so many people (ngl myself included) just dont bother going & getting stuff looked at for fear of that treatment. Im so glad they caught that and that youre recovering, im sorry you had to go through all this. Sending love ❤
I mentally prepare myself for every encounter with doctors now. I know they're going to have not read my chart, downplay my issues, not chart what I tell them correctly, etc. And I hate it.
My dads pain was written off as anxiety (pain in his chest for hours and passed out) they found a dark spot on his lung and called it scar tissue from surgery even tho hes never had surgery there but “well then i guess you forgot” it was clearly not in his files but they wouldnt check. It was rediculous and turned out to be heart problems
It can feel so difficult to advocate for ourselves after endless medical gaslighting. Well done for trusting yourself. Rest well and let yourself heal physically and emotionally x
Fellow chronic migraine warrior here…I have no concept of what NOT being in pain feels like. I think I might have a stroke or aneurysm and think it’s just a bad migraine/cluster headache and not get treated until it’s too late. I’m always finding scratches and bruises and have no idea what caused them because I just shrug off minor incidents or because the pain, nausea, lightheadedness, etc. are my everyday reality. This video is an important reminder to know what is normal for your body, and what isn’t normal and should be checked out.
Same. Like I've forgotten what pain free feels like. My migraine is sometimes so bad I can't remember my own name. One of these days something's gonna happen and I'm just gonna brush it off cause "Eh, I've had worse". I'm just hoping whatever it is doesn't kill me. I'm nauseous way more often than not and I forget random words all the time. I once broke my finger and didn't even notice till it swelled up, and that was before my migraine increased my pain tolerance.
Same here. If I woke up pain free I’d think I had died and was a ghost. One time I had the stomach flu and didn’t notice because I have gastroparesis and IBD. Vomiting and diarrhea are so normal for me. Wasn’t until everyone else got it and they were like. Didn’t you feel miserable?? I’m like. I always feel this way!!!
I've had 2 spinal fusions and live in pain, I also get migraines a few times a week. The military had me on close to 40 pills a day, a few years ago I tried cbd. Today I take 1 pill twice a day for my BP. I spent 20 yrs in the medical field and I call bs on Dr's and nurses when I know they are screwing me over.
Same here as well. I used to think EVERYONE lived in constant pain. I still can’t wrap my head around the thought that some people live in zero- very little pain. I want to believe that not everyone suffers as we do!
I had a stroke but because of my and doctors wrote it out as heat exhaustion. It wasn't until a week later when I started having seizures and really bad memory issues that they did a ct and found the issue. Because of the initial diagnosis workman comp and disability were non existent and I was left hung out to dry by my company I worked for. Took me 8 months before I was speaking and somewhat coherent again.
Honesty, stories like this should serve as a wake up call to medical professionals. Treating people's pain and concerns as if they are nothing and they are wasting your time leads to people not speaking help when they need to. I have had this experience so many times and I am now so reluctant to go to the hospital or to even bring up issues to my regular doctors because they so often get written off. This is also why we need universal Healthcare. People should not be afraid to go get help because it will potentially bankrupt them.
Hi! I am an italian med student and was thinking just about how important it is for doctors to not invalidate patients worries. I really hope i will never do this tipe of stuff. However, this usually happends in countries with Universal Health care too, beacause hospitals easily become overworked for the number of doctors the state can hire, unfortunately.
With free health care uou also have issues with desperate under funding. Unless you go to the doc at 8am here, you gotta wait up to 6 months for a routine appointment
I've broken bones, had severe infections and even had ruptured ovarian cyst and didn't go in right away because the pain wasn't so bad to me. When I did go in the doctors and nurses have been shocked I could handle the pain or scolded me for waiting out the pain and symptoms because they've said I could've had serious life long complications, permanent damage or died. The problem is I have such a high pain tolerance that it doesn't affect me the way it does other people. I've lived with chronic pain since I was born. I can't always tell when the pain is serious enough to go to the hospital so there's been a few times I went in when I probably didn't need to go simply because I wasn't sure and felt it was better safe than sorry I think of it like the analogy of a frog in a pan of water that's being slowly heated. It can't tell that the water is starting to cook it because the change is slow and steady and not a sudden sharp change from cool to boiling! That's how my pain is a slow progression.
One of my cousins has a very high pain tolerance. Once he was mentioning to his mom that his arm had been feeling kinda sore. She figured immediately that it was probably broken since he actually mentioned it as feeling painful. When they went to the doctor he did the touch tests and was like, no way it’s broken because he doesn’t look like it’s hurting and he isn’t crying or anything else. My aunt was like, you don’t know my son and he needs an X-ray. The doctor gave in finally and got him an X-ray and sure enough it was a nasty broken forearm.
I could share several stories like this. A big one was I had “swelling” in my throat. Went to an urgent care and the doctor said it was potentially life threatening so he sent me to ER for a CT scan and treatment. ER doctor downplayed it and refused to do any imaging. He decided he would just drain the potential abscess. He attempted this but only got blood out of it. Yet still sent me home with antibiotics. Ended up back in the ER again soon for the same issue and had to fight for imaging. It ended up being a large, extremely rare tumor. I had to go to a doctor out of state that had treated this before. When he found out they initially had thought it was an abscess and tried to drain it without any imaging, he was shocked. He said it was a miracle I hadn’t hemorrhaged and died. I ended up having multiple surgeries. Had a trach and feeding tube after surgery. Now have a vocal cord implant and life long complications. But the surgeon saved my life and I am eternally grateful. Now as a nurse practitioner I ALWAYS make a point to really listen to patients because they ultimately know their body better than I do. For that reason I am thankful for the experiences that I had. Now I am facing major back surgery and after years of dealing with the pain and being treated like a drug seeker, despite never once asking for pain meds, I have found a surgeon to help me. Hoping to be pain free someday.
I have definitely sat on a train googling symptoms of a heart attack trying to decide if I could go home like normal or if I needed to get off at the next stop and walk to urgent care. It feels ridiculous but also frustrating when you really don't know if it's serious or just your body being weird.
I'm sorry you've been through that, I've been there. One time it happened when I had just moved and was home alone in the middle of the night. Sudden strong chest pain, trouble breathing, and I felt like I was about to pass out. I had no choice but to dial 911 because I feared if I passed out, no one would be there to help me or know I needed help. The staff at the ER were so dismissive and downright rude to me. I was in so much pain I couldn't finish speaking a single sentence without stopping multiple times. Even as they saw me struggling like that and I told them what they gave me for pain didn't work at all, they decided to basically kick me out. They said I had heartburn and to go ask the security guard in the lobby where the nearest bus stop was so I could walk there and find my way home. I didn't even know where I was or how to get back home since I had just moved to a new area. Turns out I had pleurisy and required narcotics just to dull the pain. But even then, no one bothered to try to figure out why I got pleurisy in the first place, especially since it wasn't my first time but was definitely the worst. We shouldn't have to do some mental budgeting math and google symptoms to decide if we should seek medical attention. We should be able to if we need it and be treated with some empathy and taken seriously.
I had a great uncle who was found dead at his computer with "what are the symptoms of a heart attack" search results on the screen. Always err on the side of caution. Sure, the ER people might be miffed if it turns out to be nothing, but that's on them for not understanding that checking things out is part of their job; don't let it get to you, and don't let it deter you from making the call for yourself.
My father had chest pains, refused to go to the hospital. Next day he died at the wheel of his car. I had chest pains and went to the hospital, a couple of stents put in. That was 15 years ago.
I just told my husband how much I relate to you on this (and so much more). I'm always in pain .... It's hard to know regular "I'm always in pain" me vs "get to the hospital" me. Thanks for your candor. You're such a beacon in the midst of personal storms.
Oh this is how I feel. When I feel pain, I think, “Oh it’s just normal to me.” Or “If I go to the ER, they won’t listen to me, and write my feeling as anxiety.” Last year, I ended up in the ER, because I was feeling not myself. I ended up with sepsis and cellulitis on right leg. The ER doctor said he was glad I came in. This was three weeks before COVID hit. lol
Hey Jo! Glad you’re back. I ended up getting basic flu in 2020, and ignored the symptoms as annoying flu things. Muscle aches, delusional, fever etc… Next thing I knew I was in the ICU for 7 months and got my leg chopped off and entire right lung removed. 1% chance to live. Not what I expected at 22 yrs old. I’m recovering now, and your videos helped inspire me to fight my way back to surfing again Please listen to your body people!! Aloha
I'm so glad you're still here! What had happened, was it sepsis? It is so scary how quickly it can happen. I can only imagine the trauma you endured, I hope Jo sees this as I bet it will help her to know she has helped you 🖤🌸
You are an amazing blessing and wonder and teacher of strength Carter!❣️ even though I’m fairly sure that this was NOT AT ALL on your To DoList! I’m sorry for the super hard parts of your experiences through being so extremely ill. Selfishly, I’m glad you fought and are able to reach out and write on Jo’s community as we can all inspire & Encourage one another & we so very much need these parts of human interaction more when we are down and out than ever before!❣️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️ Thinking of you Carter and hope you are able to enjoy some part of your holiday weekend.❣️♥️☺️
This is so relatable. It really is true that chronic illness/pain patients often have a broken gauge, not least of which because we’ve had so much experience seeking treatment and being told (with varying degrees of disdain) that there’s nothing wrong with us and basically that we should be ashamed of ourselves for not sucking it up. When too often it turns out that there IS something wrong, it’s just been written off for years, and now you can’t remember what life was like before.
As a fibromylgia sufferer and many reproductive health issues, this is one of my fears. I am always in pain and feeling gross. Will I be able to tell the difference between my normal and something seriously wrong? Covid has been a head trip. I have been tested like 9 times but I always have overlapping symptoms and I don't want to accidently make people sick thinking I am just my usual miserable. So far I have just been my normal miserable.
It's very hard to put yourself through the stress of getting things examined by a doctor when all too often you are told that you are just "psyching yourself out". After countless experiences of chronic symptoms and pain you and the people around you begin to normalize it, often using the concept in casual language. Whenever something new arises you may not take it seriously, and even though in most cases you do end up being fine, there is always that possibility of there being a genuine problem. This is a very important issue and I'm happy to see people speaking about it.
Undiagnosable chronically ill for five years now. I call myself a professional patient. The issue with being undiagnosable is there is no illness track, every symptom could be nothing or it could be something. I have no idea what to expect or how this will progress. My rule of thumb is 2 weeks. I give my body two weeks to sort itself out, if it progresses (worsens) during that time then it’s time to get it checked out. More often than not it goes away within that two weeks without it getting worse. But that’s my rule of thumb regarding gauging what symptoms to be concerned with and which to let roll.
I'm also diagnosable, though I found it helpful to record pain, dizziness, migraines, headaches, joint pain back pain ect when they happened and how bad they were each and every day. Doing this for a few months let me see a pattern, so I was able to learn what was normal for my body and what was new and possibly an issue. It also helped me to understand what I possibly live with, so I can better help myself, since doctors aren't interested in helping me.
Almost sounds like an autoimmune issue. They are a bear to diagnose because it can constantly change depending on what your immune system decides to attack each time.
@@patrickbuick5459 yep, biopsies and blood work come back clean but my ENT said he is sure its autoimmune regardless, having colitis in the past (in remission now), I agree the patterns fit autoimmune as well. Unfortunately we wont get a name to the issue but the treatment is the same, nameless or not.
I have been in the hospital 2 times with sepsis and didn't know how serious sepsis was till after getting out the 2nd time and talking to my family doctor. Glad you did not get it !
I feel this so much. I feel like I'm constantly worrying about over and underreacting to injuries or pain. I have EDS and I'm also autistic so my pain processing is a whole strange thing. I recently got diagnosed with PCOS and I'd kinda ignored the symptoms for years because I'm so used to having to shove pain to one side and just get on with life. I struggle with knowing when to access healthcare because I don't want to waste doctors time, (especially because I live in the UK and the NHS is under so much strain) but I also feel like I never know when the cut off is that an injury is serious enough to go to a&e. It's also super unhelpful that when I do go to a&e with an injury half the time they can't do anything other than tell me to take anti-inflammatories and try to rest it
I also have EDS and am autistic and struggle with exactly the same issue. As a result I actually put up with a dislocated shoulder for well over a month on one occasion before mentioning it to my GP, and ignored gallstones, which people keep telling me is the worst pain they have ever felt, until it had got so bad that it took a 3 week hospital stay, lots of IV antibiotics, and when they operated things had got too bad for keyhole surgery so healing was considerably harder than it would have been if I had gone in before things got that bad…but I still worry more more about wasting the doctors time or being accused of faking than anything else when my partner or carer try to convince me to seek medical help. I did an inpatient pain rehab program shortly after getting my EDS diagnosis and one of the talks was about not panicking and running to the doctor every time you get a symptom and I just sat through the whole thing feeling so frustrated wondering why they didn’t think to also teach us how to work out when we actually DO need to seek medical help. It’s like they just assumed we were all running to the doctor constantly over every tiny thing and had no idea that some of us have been conditioned over years of negative reactions to us mentioning our symptoms or legitimately asking for treatment, that we either tend on the side of ‘oh it’s probably fine’ to symptoms that would horrify ‘normal’, healthy people, or are scared to ask for help in case we get another negative reaction
Literally same. I chose not to go to A&E a few months ago over a potentially broken cocycx. It could also have been bruised of disclocated but all I know is I was in a substantial amount of pain. Not the worst pain in my life but combining OTC cocodomal and ibuprofen didn’t touch it. Nearly 6 months later it’s not still not fully healed and I’m maybe realising I should have done something. But every time I do do something about an injury doctors are like “oh it’s nothing” because high pain tolerance so it still never heals because I take that as “carry on as normal” and I feel like I’ve wasted the doctors time.
Another one here with autism and multiple health issues. Possibly EDS. Severe osteoporosis. Really weird pain and discomfort at the moment. Am fed up of being told it is just stress. I was much better before I fell up the stairs. Also in UK.
It speaks a lot to our healthcare system that they have turned you away so many times that not going in is the first response. I am so happy you decided to go and that they listened!
I had a similar experience years ago... I was baking cookies on a Thursday to bring to work and I thought "huh, that's weird... the thought of eating one makes me wanna vomit..." That's really weird for me because I was baking my favorite type of cookies- oatmeal peanut butter chocolate chip. But I ignored it, took the cookies to work, and went about my day. Two days later I still hadn't eaten due to a loss of appetite and was feeling weak, so I forced myself to eat a sandwich. I began getting stomach pain at that point, but I ignored it. Fast forward to Saturday night and I ended up in bad pain any time I laid down- I couldn't sleep at all. So I slept at my desk, sitting and bent forward for a few hours. That reduced the pain to what is tolerable for me, but it was still consistent. So I woke my sister up to take me to the ER and she starts driving me... But I didn't have insurance at that point so she convinced me my pain wasn't bad enough to justify the bill I'd get from the ER. I listened to her and we went back home... Monday comes along and I make myself go see my primary (she always gave me cash discounts). She ordered blood work and an ultrasound, and I took both to my school's health center to get it discounted. I got a call a couple days later (Wednesday) and was told I need to go to the ER- I have pancreatitis. I start packing to go to the ER and my GI called to say that because I am tolerating the pain and am uninsured he is willing to let me try bed rest and fasting for a week at home instead. I chose that and we checked my blood again a week later and the pancreatitis was improving, but I was out on bed rest plus fasting due to this for about 3-4 weeks. At my next follow up with my GI he told me we couldn't figured out the cause (my ultrasound was normal) but that it could have killed me and if we don't figure out the cause we can't prevent it from happening again... And the more it happens the more likely it is to kill me. It's really frustrating to this day because pancreatitis is supposed to be one of the most painful things you can get- and since I waited 5 days to go to the doctor many don't believe that's what I had despite the testing to prove it. But I have a very high pain tolerance- it gets me in trouble sometimes. Anyway, we still don't know to this day why I had pancreatitis. There's some suspicion it's become a mild chronic pancreatitis now, but it's just a lot of guessing. For the first few years any time I got even a remotely similar pain I rushed to the doctor... It took a while to stop thinking literally every stomach pain is the pancreatitis coming back. Anyway, that really messed with my head for years... I was always terrified I was going to get pancreatitis again and I was going to die. I think learning to pay more attention to my body has helped me. I now realize most pains are nothing like I had during pancreatitis, and I know enough about it now to do self-checks to calm me down when I do get pain. But Jo, you're 100% right... Chronic pain really makes it hard to judge what is serious and what isn't.... Hang in there.
I ended up with pancreatitis when I was pregnant with my son & almost died. I just had it again about a year ago. It's painful stuff. When I was pregnant, I was having issues with my gallbladder, so I thought the pain was from that & waited to go to the ER. I got lucky. Very lucky.
@@Snugglecher It is pretty painful! To this day it's tied my #1 pain (tied with when I had my kneecap dislocate and when I had a sudden pleural effusion). I hope you were able to figure out your cause of pancreatitis- sounds like maybe taking care of the gallbladder may have helped?...
@@TheMissMaggs Actually no because the second time I had it was last year and I had my gallbladder out 15 yrs ago, right after I had my son. They couldn't tell me what caused it this past time. I do know that I have a weird food allergy & that reaction seems like the same pain as the pancreatitis pain. It's crazy really.
@@Snugglecher Well, I hope they did a bunch of testing before they assumed idiopathic (eg: unknown cause). The've found mild cases of cystic fibrosis in adults as old as 50 that have caused pancreatitis. This is a major fairly recent discovery because it was always believed that CF was severe and consistently fatal. But now that every infant is screened we've learned that mild cases do exist, leaving people with things like chronic infections of the sinuses, lungs, or GI tract and pancreatitis that were never properly diagnosed. And there are a few anecdotal reports of food allergies triggering pancreatitis (one report showed every time a woman ate a banana it triggered pancreatitis). So there's a lot to consider is what I've learned. Has your pancreas been able to heal each time or have you had to take pancreatic enzymes due to it? (feel free to ignore that question if you want. I'm just curious)
I appreciate this video so much. I am one that usually just grins and bares it when I'm having an issue. But because you shared this story I ignored my nature and trusted my gut and went in and I'm glad I did because it prevented me from getting to that danger zone. I was pretty close. So I just wanted you to know these videos do make a difference ❤
I've been sent away from my doctor, strongly implying that I was "imagining" my heart skipping beats after they did a couple of tests and decided it was all fine. My heart still skips beats from time to time six years later, but it doesn't seem to be killing me ... I hope ... So, yeah - it feels like you can't win. You go in to get things checked out, and then get sent away like a small child lying about what's going on. Why *would* you go in so quickly?
What you should probably look into getting is a heart event recorder. Any time you feel like an even is happening, you put the device to your chest and hit record. Now, if what you have doesn't last long enough to do this, you can look into apple watch or similar products that can record heart beats. Doctors can prescribe devices for long term recording when events just don't happen during observed testing episodes, but this just depends on what country you love in and if you have health care and can afford it. (Good luck, it could be a simple fix, but getting people to listen is some of the hardest.)
There is something called a 7 day ekg. It is a brick-sized device that you carry on your chest for a week and it records everything your heart does. I had to do it once, it might be worth a try to find out what is going on. In my case, they didn't find the thing that was wrong during the ekg in the doctor's office, and not in the hospital's ekg either, so i had to do the 7 day one to find out what was going on. Fortunately, it has improved a lot since then.
Sending this to my wife... 2 shoulder surgeries with a third imminent, 2 knee surgeries, TMJ, herniated disks, abdominal issues, chronic fatigue and a myriad of ancillary athletic injuries... finally connected all the dots a few years ago... EDS. You are 100% correct... as someone who sees someone deal with chronic pain on the daily... she... no WE, need to be cognizant of this issue. THX.
My heart skipped a beat when you said "it is very expensive." I'm from Norway and I cannot for the life of me understand the health care system in America. I feel like it shouldn't be a matter of if you can afford the trip to the emergency room or skip because of finances. I'm glad you okay and got the care you needed, but oh did I wish you wouldn't have to think about the cost ❤️
Yeah..when it comes to healthcare..it’s scary over here. I have multiple chronic illnesses and mental health disorders and I haven’t bothered seeing a doctor in 5years because even when you go in, nobody helps.
omg I know! As a Canadian I will never know what is must be like to worry about how Im going to pay for medical treatment if needed. Universal Health care should be made available in all countries, and while I know I pay wicked amounts of tax I also know my health will never suffer....
I totally sympathize with your situation. I’ve dealt with and continue to suffer from Anxiety, Depression, etc (no diagnosis yet) and about a year ago I realized I had no idea what was normal sadness or stress and what was abnormal. I didn’t know if I was just spoiled and being lazy or if there was something I seriously needed help with in the form of medication. I’m still searching for my normal, but I’m much closer now. Good luck on your journey and take care of yourself!
My radar of “Does this require medical attention?” is also very skewed. I’ve got a chronic illness and was in and out of doctors offices for my entire childhood. I’m constantly caught in this cycle of “Is this a random moment of pain that will go away in 5 minutes or should I see a doctor?”. I dislocated and sprained my thumb but didn’t bother seeing a doctor for a month because “The pain will be gone in a couple days and there’s nothing a doctor can do for a dislocated thumb anyway…..”. I’m working on it though and learning to take breaks and not push through something that could be serious.
My brother died from an infected pancreatitis turned septic. He had been written off by his doctor but should have gone to the ER. I can’t imagine the pain he was in! Glad you’re okay!
I have herniated discs so sometimes it’s hard to tell the difference between that pain to like UTI kidney stuff. So it scares me because I also don’t know what’s what. Ive only had once where it went to kidneys but thankfully I got sorted out with antibiotics. Glad you are fine!
Damn, thank you so much for sharing this. I'm fortunate enough not to live with chronic pain so as a trainee doctor, this is a really major point I've never really thought of. We always tell patients 'better safe than sorry' - but how do we go about supporting those who, as you say, don't necessarily have that gauge? The medical field as a whole HAS to do better. I know the limited time and resources all too well... but some people don't realize the dismissal of their chronically ill patients could be the reason people die when something is genuinely wrong.
BRAVO 👏 I've been that person in the ER. However I've also found myself at home trying to make that decision at home. Know one who doesn't have a chronic problem can understand our lives.
I relate to this so hard. I literally ended up in the icu with sepsis and adrenal crisis back in September because I thought the tooth infection was just my TMJ and my fever of 103 was just my autonomic dysfunction 🙃 Another scenario I always put off going to the ER for is pain. I will literally be curled in a ball, vomiting, crying, rocking back and forth in pain and still try to convince my loved ones that I don’t need to go in. Aaaand then since I can’t keep my meds down and my body doesn’t make cortisol (the stress hormone your body secretes when you’re in pain, sick, scared, mad, etc) I end up withdrawing from my meds (making everything worse) and going into adrenal crisis which leads to shock and regularly death. I think after so many years and even more drs & other healthcare providers telling me or implying that I’m faking it, drug seeking, over dramatic, etc or just treating me like shit and saying “we can’t help you” (when they really mean they *wont* help me), I just don’t have it in me to get dressed, pack my bag just in case of an admission, get a ride to the hospital, wait for hours and hours, deal with sensory overload, more pain, telling 27 ppl why I’m there, wait some more, and all the while knowing I’m risking dealing with all this just to be told there’s nothing they want to do… it’s just the biggest deterrent for most chronically ill people to even go in to be seen and I don’t think healthcare professionals truly grasp that concept. Especially if you have an invisible, undiagnosed, or pain related illness or disability. And if you’re neurodivergent or have communication difficulties? PTSD? Forget it. It just sucks. I’m glad you’re feeling better and on the mend ♥️ Love ya sister!!!
I'm glad you're ok. I've got fibromyalgia and PTSD and get sensory overload just by going into a store, let alone the emergency room. Put on top of that all the medical staff who have abused me because they thought I was faking. We have to keep seeking help when we need it, it's our right.
I've definitely had a similar issue/experience. i have a few chronic illnesses and am used to pain, discomfort and random things cropping up. i almost waited too long for a blood clot. thank goodness i actually ended up seeing cautious doctors because i didn't have the usual symptoms, but i had enough flags that they had me thoroughly checked out, and found the clot. (Canadian Healthcare, phew). it's scary knowing you don't know when you're in danger. i always worry my appendix will burst and i won't realize because i've had such bad stomach pain for so long. i wasn't even worried about a blood clot. I hope all your fluffy helpers are taking good care of you.
This is one of the big reasons you shouldn’t have to “pay as you play” with American healthcare. Imagine you were a person who didn’t have adequate insurance in this same situation, I doubt you would have gone. The American health system is literally fatal
@Nathan Michaels as in insurance that will cover whatever it is that you are having an issue with which you would then choose to not go in for, since you would have to pay out of pocket. It really wasn’t over simplifying, there were clear context clues for what I meant
@@Travelbyailsa I understood what you meant about the health insurance. You can be poor enough to get state funded insurance (in California) but the plans can be so shitty they will deny what you truly need. Then you can work hard and earn more money but get caught in this weird spot where you "earn too much" to qualify for MediCal but realistically don't earn enough to pay for an insurance plan. So you go without insurance and hope you don't need to seek care. I was there with my last job. I was living paycheck to paycheck because I was being underpaid but according to the state I could afford my own health insurance. 🙃 The healthcare system in the U.S. is just all kinds of effed up. I got hurt while not having insurance and didn't seek care because I couldn't afford it. Two years later and my arm still hurts in different spots, including what feels like bone pain. Maybe I fractured a bone but I couldn't afford to find out when it happened.
Mine wasn't fatal, but I left an ear infection untreated for several months before it go bad enough I begged to go to an urgent care clinic because I had 0 insurance...yeah that was a scolding of a life time from that. Lucky she had a cheaper medication for me to use, and there luckily doesn't seem to be anymore(I had ear infections a lot as a kid) permanent damage to my ear.
Biggest reason why I could never live in the US, I would probably die from the stress of the though of health insurance. I feel so lucky that I have been able to get mental health care pretty much free where I live, without it I would be dead, I want others who need get this same help too, if anyone tries to chance it I would fight it. I don't understand how Americans can accept beeing treated like they are nothing by their own country and how can they watch people who can't afford health care suffering. No wonder American's don't seem to trust their doctors and think they're only after their money. With free health care you don't have to be concerned over this, that they're prescribing you medicine you don't need to make money.
The US system is almost designed to kill poor people. It is accepted by the medical industry that if you are indigent, you deserve to die. As a former lab tech, I was told many times that I couldn't get a raise because "collections were up" meaning people were not paying their bills. At the same time though, the company owning the hospital was reporting record profits to shareholders and the CEO was getting millions PER QUARTER in bonuses. It's not caring for people, it's a business.
Thank you ! This feels like my daily life I've had chronic pain and issues for over 10yrs. Have struggled with back and chest pain for most of that but always been told there was nothing wrong. But when it suddenly got worse last year I am so glad I listened because I found out I may have a issue with my heart. I am also so glad I live in the UK where even if it turns out to be nothing I can go see a doctor and it's not going to cost me. I love the NHS and even with all its problems it is the best thing about being British and I am so proud of it!
I just found your channel. I support this message 100%. I was walking around with a broken spine for months and a infection in my spine that got big enough that it compressed my spinal cord and almost made me paralyzed. After an emergency surgery I had to learn to walk again.
As someone with chronic pain and multiple disabilities, I can truly empathise with this. Literally I’ve had an odd chest pain this past week and debating whether it’s really weird or just a bad chronic pain week.
When you started describing, I was thinking, that sounds like my kidney stones. You are the first person, I have heard talk about, the problem chronic health sufferers have, knowing/wondering, when to get something checked out. 20 years ago I got a flue? that changed my life forever. Lots of frustrating trips to specialist, to be told, everything checks out fine. Told it could be mental, not physical....maybe? I learned how emotionally important it is, to feel you have some knowledge, and control of, what's going on in your body. That makes undiagnosed illness so hard. Thanks to you, and the others in the comment section, sharing their stories.
My grandma almost died because she let her gallbladder get too serious. When she finally came to the hospital she was rushed to surgery immediately. I am so glad you're here.
Oh, the stories I have about my gallbladder. And the completely horrid treatment I received when seeking medical care for it. It was deplorable and disgusting. I'm glad your gma got treatment.
This exact thing happened to me. I had pelvic surgery and the day after, developed significant flank pain. Went to the ER, it let up, they sent me home. Then overnight it came back with a vengeance and I started vomiting. Went back and I was already septic and my kidneys and lungs were shutting down. Was admitted for a week. I regularly get pain from my endometriosis, fibromyalgia, and syringomyelia that gets just as bad, and the question of whether go to the ER or not is always there. I definitely do not have a compass either. I'm so glad yours was caught before sepsis and that you are on the mend. 💜
Firstly I'm so glad you are okay and went to see a doctor in time ♡ I totally feel you. I have a chronic illness as well and it can be so hard to make the distinction between your body just having a bad day like so very often or catching something more serious going on. I'm fortunate enough to have a partner that has developed a 6th sense for me feeling unwell. Prior to that I often slacked in seeking medical attention as I felt like a burden. Thank you for doing what you do, I'm so glad I found your channel ❤
Thanks for the reminder. My body is doing a lot of weird shit right now, currently everything happening has been investigated. But will try not to write off all new weird shit as my recently diagnosed chronic condition.
Jo, I have definitely felt this way before. I started having some new lower back pain around Thanksgiving last year and I didn't think much of it because back pain is just common for me. After several months of just dealing, then three of PT, another with an SI belt, I was finally referred to get an MRI. Turns out, I had a partially herniated disc for the last six months. When the doctor told me that and didn't just say, well you have chronic pain so sucks to suck, I just started crying too. I was convinced it was nothing because I have been told that so many times. I also got an epidural on Monday and am now really on the path to recovering instead of just dealing with it.
I have a very rare (one in 5 million people have this) nerve disorder that is pretty rough. It’s Reflex Sympathetic Dystrophy. I have had it for 30 years. I have had a thousand visits for nerve blocks, surgeries, drug trials, you name it. I unfortunately broke my pelvis tripling on my adorable pandemic puppy. ARGH! It is broken in 2 on the left side which is my BAD SIDE! I get how you feel about having weird stuff. I always have skin issues, pain of course, leg cramps that make you cry, infections in the skin and many more not fun things. So! I am SO SO glad that voice deep inside told you something was very wrong. Living with chronic pain we brush off so many things that we probably shouldn’t. This was a cautionary tale! Thank you so much for sharing. I needed that wake up call in my own life! Have a great Monday! Feel better!👍😊
I get like that all the time. It's difficult to know what requires being seen and what doesn't. It's also frustrating because with being on the younger side many doctors write it off because I'm young and "couldn't possibly have all these health issues/it's all in your head." I'm glad that you got checked out and are doing better. Thanks for the reminder to check in with your body.
I feel that so much, oh should I go or shouldn't I? I don't wanna be overdramatic, but what if it's serious? If I go to the ER or doctor, will he/she take me serious or will he /she think: this girl is young, probably nothing dangerous? That's so stressful to think about it.
Thank you Jo for sharing this. Its so important that you emphasise this because like you say when you are used to being in pain its hard to differentiate and not putting it off. It's so hard to know what to do but always get checked out follow your gut. Just came across you. Thank you for sharing the good, bad and the ugly.
I know that feeling of not knowing. I just went to my first Neurologists appt. and pretty much got lectured the whole time that after 30 years of migraines and 20 years of nocturnal seizures this was my first neurologist's appt. Part of it was because where I used to live PCP's never referred out to specialist and other was a fear of the neurologist and MRI's. Besides so much of the time when I do go to the doctors they either just push drugs on me or they tell me nothing is wrong or they just don't know why I am sick all the time. It's so frustrating to deal with. Oh, and how many times have I gone in for chronic pain and been given antidepressants! That completely pisses me off. Now I am stuck waiting for the neurologist's office to get back in contact with me for the next steps after the MRI and EEG. WTF?
I feel your frustrations girl. I have had chronic pain all my life, I to miss judged a pain thinking ahh it's all good, it'll pass. Nope!! Finally went to hospital thinking bad flu. Nope, not that either. Spontaneous rupture. Spleen. I died twice that night. I was put into a 4 day coma.. life is odd.
I’m so glad you’re okay. I had a similar experience when I was 28, and it really scared me. Lifelong IBS, several days of trying to ignore severe abdominal pain. Husband convinced me to go to the ER, turned out I had very severe diverticulitis. Doctor told us that if I had waited much longer it could’ve created multiple ruptures in my intestines and I could’ve died.
I had diverticulitis hospitalizations many times years ago and they stopped. One day I go to piss and my pecker starts farting at the end and making a mess. I look on the web and it says it could be a fistula. I call my surgeon and he agrees. The tests concur. The intestines' got a hole in it so the body fused the bladder to the intestine as a defense mechanism to prevent sepsis.. That was open lower abdominal surgery. Painful, I've had many and this was the worst. Morphine and Oxycodone worked as long as you didn't need to get out of bed or cough. Luckily everything got reattached without incident. I might have wound up with a temporary or permanent ostomy bag.
I totally feel you. You phrased it perfectly. Those of us with chronic pain NO Longer know what is “normal” and what isn’t. Since a lot of us have brushed aside & people didn’t understand our pain. Fibromyalgia for 18 years and I constantly blame every “issue” on Fubromyalgia, because the doctors don’t understand or know enough about it, everything is “blamed “ as a symptom of Fibromyalgia. Hope you are feeling much better, Kiney pain is horrible, I had to be hospitalized due to one, once, because the doctors said I should have known & came on in, it happened overnight!! Scary!! Hope you are feeling well today!!
I can't imagine going to Emergency just for pain. I have pain every day and I'm very aware that doctors don't care. I would go only for a visible wound that they can't deny.
I went to the ER cause I was unable to walk due to the pain, but also because part of my body went numb. When they did testing, "all is normal". Why is chronic pain annoying. Dumb bodies are a pain
A very strong message for anyone who has seen too many treatments in life. It's true that we should never stop to remember that we should not just be okay with being in pain. At the same time... Remember that it is partially necessary to shift our tolerance to pain to make the best of our situation. It is a thin line, and therefore very helpful that you spoke about the topic so openly. (Helps to know that this happens to other people too...)
I'm so used to doctors not believing me and just throwing a prescription at me that it's hard to take my own symptoms seriously. I have Ehlers Danlos Syndrome and I deal with excruciating lower body pain that sometimes keeps me immobile in bed. Turns out thats not normal, but my doctor thinks I'm either faking it or looking for drugs. Fml.
What? This man ignoring your official diagnosis and tell you that you are faking? It's case for going to court. Really. You have documents that you are ill and this 1 lowering your life quality 2 can finally kill you. Do you have even possibility to go to another doctor/medcenter in your country/city? Do it. At all costs
@@KT-in3wb I've been told by half a dozen doctors that I have it but every Rheumatologist I have gone to either doesn't believe EDS is a thing, or that because it's Hypermobile EDS and can't be confirmed with testing, it's a fake disease.
@@jocelynprior1874 rheumatologists suck for EDS care. Better to find a good physical therapist or orthopedic doctor. I was actually diagnosed by a dysautonomia specialist, so those are good, too.
I've been dealing with chronic pain for a while and, until this video, I didn't realize I'd gotten used to just trying to ignore it. This has helped me see I'm trying way too hard to keep up with able-bodied people and I've been so FRUSTRATED with myself because I just can't sometimes. I'm not like the people I've been comparing myself to and I never will be. Time to find some balance with myself and not ignore the pain until it's crippling.
This hits home so hard. I am never sure when I should really go to the ER, because I’ve been brushed off so much, and frankly I’m always in pain. I’ve had a severe kidney infection in the past, and it was excruciating - it was when I was quite young so still going to the hospital before I started thinking they wouldn’t care.
So glad you're OK. As someone who been through a similar experience, I can sympathize with how hard it can be to judge how serious a new pain or symptom actually is. It's damn scary when you realize how close you came because you were thinking 'Oh, great. Yet another weird thing my body is doing. Fantastic!' Years ago, I thought I just had a stomach bug that wasn't going away. My doctor thought it was an inner ear infection, but decided to do a full blood work just in case it wasn't. Turns out my blood was disintegrating & if I had waited another day, I would have died.
I feel this story so bad. I always am in pain too and I have totally missed out on treating a ton of injuries. I was very much raised in the ‘always get back on the horse’ culture so I never got injuries looked at until the past few years. To the point where I have trained and worked on fractures and never really took time off to heal unless I physically couldn’t do it. I really regret that now because my body is actually falling apart at 27. I highly suggest actually getting injuries looked at and not ‘walking’ it off. Especially head injuries, those really mess with you long term.
This literally happened to me about two weeks ago as well! Been having on going abdominal pain for like ~2 years now, all labs were clear so I just suffered through it. This past flare, I realized that I had a low grade fever after about 4 days. That is the ONLY unusual thing that happened. Between my chronic pain and my health OCD, I never know what is actually a problem and what is just my body/brain being a jerk. Thankfully I followed my panic and went to the ER and found out I had advanced acute pancreatitis and needed antibiotics ASAP (they were baffled by my lack of pain, guess I just got used to it) - which then led to an MRI, the discovery that my gallbladder was almost completely full of stones, and surgery to remove it. But if I hadn’t impulse taken my temperature and saw a fever of only 100, things could have been very bad. It’s frustrating and terrifying but thankfully, like your story, ended up alright.
Yes, I have been there and done that. It started in my late 20s and I am now 62. For me, the hardest thing to deal with is when the people closest to me says “what’s wrong with you now”. In less than a year, I have suffered a stroke, and a cancer scare, on top of the daily pain that ranges from tolerable to what I call”razors edge”. When I come across someone like you it helps me to remember that I am not alone and I am not crazy.
I went into kidney failure last summer. I’m definitely overweight so the first doctor I spoke to basically said “hey you’re feeling like this bc you’re fat” and sent me on my way. A week later I was in the hospital in acute kidney failure. People definitely don’t realize how much your kidneys affect EVERYTHING else. Also, I’d like to say that doctor was just an ass, but a lot of them sadly are.
@halcyon unfortunately too many times all doctors see is certain attributes someone has, their weight, their age, their sex, their race...and make assumptions based on that ONE thing without even fully listening to WHY they are seeking medical care. I know I'm black, I know I'm overweight, I know I'm female...but WHAT does that have to do with THIS particular thing? Could they be a factor? Maybe, but often it's not the entire thing. Yes you are 1000% correct, her doctor was a donkey for sure!
i’m so glad you got to the hospital in time ❤️ i completely understand the worry of being dismissed, the “everything is fine” is the most frustrating thing in the world when you know everything is *not* fine.
Omg this has happened to my mom twice and both times they were like "why didn't you come when it was a bladder infection? How did you let it go so long until it was in your kidneys?" but both times she couldn't give them a good answer because she's also a chronic pain sufferer so the bladder infection must have been nothing to her too until it got to her kidneys and she finally noticed something wasn't right. (b4 menopause she also had super painful cramps when she got her periods...something biology decided to pass on to me too lol, so I'm sure she might have thought that it could have been that too)
I understand. I always get new pains checked out, even if I think I know what it is. Costrochondritis (inflammation of the sternum/ribs) is a symptom of my illness (axial spondyloarthritis) and causes chest pain. When I first got that I called my rheumatologist who sent me to A&E just in case. I think that experience is what set the bar for me: always get something new or different checked out, just in case. Glad to hear you are getting better, and intrigued to hear more about your new diagnosis! Look after yourself Jo, your health comes first. We will all still be here whenever you are ready ❤
Girl this is too real! That battle is one I am all too familiar with and it’s become even more complicated after COVID. It’s so overwhelming!!! I will say, having some of the diagnostic tools at home (temp, BP, EKG, Pulse O2, urinalysis etc) has been helpful in assessing whether or not I should go to the ER. Even then… -.-‘ Thank you for sharing! Glad you were able to get diagnosed in time.
Septic shock ain't no fun. I was admitted this time last year for septic shock and osteomyelitis/septic arthritis in my hip, si joint, and lumbar, multilobe pneumonia and a PE. They sent me home only taking cultures because I begged them to .I went to the ER right away because I was quite literally in the worst pain of my life, to date. .. well except the second time when they sent me home AGAIN. They wrote me off as a meth addict (I'm in WV and theres a high abuse rate here) because I have a rash from cutaneous mast cell activation that resembles the rash in meth users. Still not ok to deny my.treatment either way though, regardless if I was a drug user. I had come wo close to dying this time two years ago. I'm having quite a bit of extreme C-PTSD flashbacks this year for some reason. Scary time.
Honestly... I totally agree with you about dealing with chronic pain. I seem to wait ... Not sure why.. But I seem to wait and go at the last minute. I lost my foot and ankle on 4/30/21 due to an infection that I waited too long to get treated. 62 days later, I feel a billion times better than that day and previous weeks. I am glad that you are better. I hope that you continue to heal. I get my "new" foot and leg on 7/6. Thanks for your videos... They have helped my personal journey so much!
I'm chronically ill and this happens to me every time I feel too sick. I go to the ER, they run tests, and then everything is "OKAY" they send me home and that's it. but after two close friends almost died for not going to the doctor for weird things.... I rather wait hours at the ER, heard again and again that all my test are normal than risking my life. it is exhausting to hear that all your test are normal but... fuck it, I'll suck it up.
Bless you so glad you went in to the hospital. I have Fibromyalgia, osteoarthritis, ptsd, chronic fatigue syndrome...when ever i have a different pain it is usually chalked up to one of those being, one of those. I'm with you, I don't know anymore what is just them or something new. I am a Medical Assistant/In home care provider/ Nurses aid. (now retired due to my illnesses), you would think i would know what's what, right? And that scared the tar out of me. My doctors will say talk to your primary and she goes, "why? thats why they are the specialist talk to them! Then I go in circles, so i give up and go into the ER and they ignore everything else and look at me like its a new thing... Take care and know you are not alone and your longdistance fans think fondly of you and wish you well. bye from california
I can somewhat identify with not having a good gauge for knowing when things are allright. For example we are told that a cough is one sympton for covid. But when your work partly is in a freezer you have a good reason to cough without having covid. I have other examples, but I don’t want to reveal everything online
Oh my goodness.. I'm glad that you are okay, it can become very difficult to tell especially when the body's natural warning system (pain) is all jacked because of chronic pain/illness.
This happened to my husband. His boss made him go to the doctor and take medical leave for 3 months. Finally figured out he had precancerous polyps. If we had waited another year it would have been cancer
I’ve had Crohn’s disease for 24 years & I legit ignore random pains all the time. I have the same mindset as you with the “oh my body’s just being weird today” thinking. It’s gotten me in trouble with my doctors multiple times over the years when I just take the pain & don’t seek help. At the same time, I’ve also had doctors minimize issues that I think could be a big deal. I have a really hard time trusting my instincts anymore.
So hilarious that the ER nurse scolds you for not coming in sooner when you’ve been there many times before only to be told in so many words “why did you even come in?” I don’t know what your reply to the nurse was but I would have unloaded my frustration.
I just wanted to comment and say this video really helped me out. I recently noticed some irregularities in my vision and while I usually brush it off cuz yeah that chronic pain/illness life, I couldn't shake the feeling that something was Wrong, and so today I went in to an emergency optometrist and it turns out I have swelling in my ocular nerves and need to see a specialist. We don't think it's anything serious thankfully, but if I had waited it could have been, and when I was debating going in I remembered this video and decided I should trust myself and go in to see a doctor. So thank you for being open with your journey here on RUclips, and I'm glad you're doing okay!
My experience with ER and seeking medical help has been either 1) you're fine, why are you wasting our time or 2) oh my god why didn't you come in sooner. I have a similar story. 7 years ago I swallowed a fish bone. It didn't dislodge on its own so I had to call the ambulance to take it out. The ambulance came, extracted to fish bone and i went on with my life as nothing ever happened. About a week after that happened I got a sore throat. At first I thought I was just tonsillitis since I have it frequently. So for a few days I ignored the pain and discomfort in my throat and continued going to work (absolutely terrible thing to do when you're ill) . Eventually I couldn't eat, i couldn't speak, I couldn't swallow and I still decided to wait until the next morning to see my GP. However at night I couldn't breathe anymore so my mother called me an ambulance. From this moment onwards I have no memories of my own. I know I was taken to the hospital and I spent the night there. Basically the spot where the fish bone got stuck got infected and I had a massive abcess in my throat blocking my airways. They drained the abcess and put me on some heavy hitting antibiotics for a while. The doctor told my mother that if we had waited until the morning as my original plan was I would've been dead. When my mom told me that it hit me how serious the situation was. I was literally a few hours away from death. I'm glad you're doing better Jo
OMG yes to your first paragraph. Or something is actually serious and they still try to send you home without treatment. I had a doc try to convince me that dehydration isn't serious. Even though I'd had nothing to eat or drink for two days and I'd been throwing up for most of that time. They struggled to get a line in and I have great veins (well when I'm not super dehydrated).
Glad you're on the mend. I learned the hard way how serious bacterial infections can get when I developed cellulitis (a deep skin infection) suddenly. One day later, I went to the emergency room and was admitted in early stages of sepsis. I'm now hyper-vigilant about seeking medical treatment whenever there are signs of infection. Stay safe and take care!
I hate that this is a common experience for people with chronic health issues. I had a spinal tap in May that went really well! So well that it helped heal past trauma from a spinal tap when I was 12! Buuuut it didn’t heal quite right so I ended up with a CSF leak and the accompanying horrific headaches a couple days later. I went to the ER to get a blood patch to fix it, as my neurologist told me to do, and while I was there waiting I still felt like “uhhh should I even be here? I’m probably taking up valuable space just for having headaches, even if they’re so bad that I can’t think if I’m not lying flat.”
I had this happen too! The low pressure headache is awful, I stayed lying down for a week and when I needed to get up I'd be counting the seconds before I'd have to lie down again. I probably should've got a patch but was too afraid of more spine needles 🥲
Sweetie...I have chronic back pain. My back pain became worse and I just chalked it up to going to the next stage that I was going to have to deal with. One day it became it the point of not breathing well and crazy pain. Went to the ER and found I had a kidney stone lodged in the tube between the kidney and bladder. It had been there for so long I had become septic. I was in ICU for 7 days. I listen to my body now. You never know what it can be!! Glad you're better!!
I’m CURRENTLY feeling this way. I have been having increased heart rate the last few days. And I ask myself: is it due to heat + dehydration (ik I wasn’t drinking water lately…oooops) or is it a problem? Idk.
Hey please drink plenty water! That's how kidney infections can happen. You gotta keep the system flushed! And hydrated :) I hope you feel better soon but do take care - always better to go and be brushed off if you're okay than leave it and be in danger
@@gilly_axolotl just got higher recently. But today it is getting a bit lower. I think I might be having severe anxiety when I think on it due to subconsciously stressing over things in my life. Also, I’m in Los Angeles. The heat is NO joke and I haven’t drank water properly for days nor have I slept a full night in weeks. :/
I get you, and I'd like to add on your reflection about how you often get told that there's nothing wrong going on with you. This is also the reason why we tend to doubt ourselves so much. I had so many doctors just look at me, puzzled, and just being "hey, might just be stress." and they don't know anything at all. I often have very weird reactions to medicine where most people don't get any side effects, and the amount of gaslighting you receive from medical care workers sometimes is just undermining your instinct in trusting that you know something is actually wrong with how you're feeling and how your body is responding. It's really a problem on both side. It's being used to being in pain, but also being told continuously (when doctors have no clue what's wrong) that it's psychosomatic in some ways...
Yes! Being gaslit for weird reactions to meds - that’s me! At this point both my sister and I know it’s a distinct possibility when we have to take something new. It’s kind of like a terrible running joke in our family. For example: Oncologist: It’s very rare to be allergic to bisphosphonate medication Me: Welp, after trying two different kinds and ending up with angioedema both times, my throat and tongue gradually swelling more and more, I’m pretty confident saying I am 🙄
Thank you for sharing what happened to you in this incident. I am a chronic pain sufferer and sometimes worry I may miss something serious. I appreciate being encouraged to check things out when something seems unusually wrong. I’m so glad you were helped!
I can so so so relate - but for me it was my gallbladder that was putting me into liver failure. We are so used to being told that the tests say we are fine, when we are in excruciating pain, and tired of complaining about it to doctors! I learned a lot from that experience and was truly scared that I had almost killed myself by being "stoic".
Thanks for the reminder to take my antibiotics for my current kidney infection, which if my doctor hadn't put a bunch of repeats on my last one, I wouldn't have bothered with.. I could have literally made the identical video. I've had severe chronic pain from spina bifida followed up by 3 back surgeries (and many others), the 2nd of which did massive damage and put me in a wheelchair. You know you've lost all reason when you fall, and need many stitches to sew back together the whole underside of your toe, and were just wrapping it up and telling everyone "it'll heal if I just wrap it, no need to go to the ER". I totally understand, but so glad you trusted your gut and went in. Feel better soon.
Oh wow, You just summed up the frustration of chronic issues so well. Going to ER is a major step for me and one I almost never take. I've received treatment, but no epiphany moments yet. Glad you're on the mend.
A friend of mine recently stayed in the ICU for a week because of a kidney infection too. Stuff like that can really creep up on you! And the way doctors are so quick to write off pain as cramps or something else, it honestly isn’t surprising that these things happen. Glad you’re doing well!
Hi, I am taking your advice and going to a medical professional to get help with pain in my foot. You caused me to think about what is more important, my job or possibly my life. Thank you 😊.
Yes, I have a chronic disease, Crohn’s disease and I constantly have inflammation in my body. I was sick for years before I got diagnosed because I always thought I had a “nervy tummy” and used to get swollen joints “from working out at the gym” or “carrying my children too much”. When I was finally diagnosed it was very critical and my doctor and the hospital specialists had to persuade me I was very unwell. Still hang tough (because what is the alternative) but no longer let other people tell me how I feel and I let myself rest when I need to. My specialist said to me a couple of years back to stop saying I was fine because when he performed a colonoscopy and looked at my bowel, I clearly was not. That was another great moment for me as I got into medication that made a real difference. I so understand where you are coming from, there is no time to listen to every ache and pain but we must watch for changes so medical specialist can diagnose early and provide treatment. xx - thanks for sharing
I can totally relate. I have a high pain tolerance and when I have gone in to the doctor, they have been dismissive. I went to two doctors in four days, who dismissed me. I ended up going into the ER when things escalated, and less than 24 hours later (partially due to doctor failure), I was in a coma, on life support, with aspiration pneumonia, respiratory failure and full septic shock. I came out of it with colon cancer. I'm lucky to be alive. Glad you listened to your instincts and are okay. It's scary how quickly life can change.
I totally understand this ive lived with chronic pain for so long I finally had a dr listen to me today and I felt relief I did send you an insta dm a while ago. Its so hard trying to figure out what is normally pain and what isn't normal im so glad you're OK xx
"Normal" and "Concerning" take on entirely new meanings when you've got chronic pain. Also, gotta love when you go to the doctor for answers and they're like "Welp, your bloodwork is normal and we didn't see anything on the x-rays, you're perfectly healthy and can go home" while you sit there in pain being like "Um. No?"
Yeah so many doctors I have been to in the last few months they say the same thing. And when I say "But I'm still in incapacitating pain. What can we do?" it's so surreal to watch medical "professionals" go blank and eyes just glaze over because they don't want to acknowledge the question. Literally sitting in silence for a full minute while they hope that you forget what you just asked.
there are so may different kinds of pain as their are so many kinds of hurt - has in
That was the key phrase that everyone should listen to. It's that single phrase that determines whether or not you should go to the hospital. "The pain is different"
“It’s really hard to know what’s serious and what’s just your body being dumb” - don’t think I’ve ever heard something so true. So much of the time when I get new pains I just assume that’s another things I’ve gotta deal with but never know when it’s actually something genuinely bad
Right? I almost had my gallbladder fail or whatever lol on me when i was 14 i didnt know it was serious till i had pains at home too I thought it was due to my anxiety but nope
I relate too
Yes
Omg same here!!! I almost left a severe sinus infection after surgery go because I figured it was just how slow my stupid body heals and that I always have pain so it’s probably just a migraine again.
I relate to that.. i’ve had back pains since i was a kid i also have migrains. So i tend to just ignore my pain now..
But if you go in too soon as a person with a chronic illness, you get accused of faking it and just pill seeking. I've given up on getting an answer to my nerve and joint pain because I saw this shift starting to happen with the doctors.
Damned if you do and damned if you don't!
I hope you do find an answer and hopefully relieve some or all of that pain at some point 🖤 stay safe
@@lavenderkoi4931 Thank you. It hasn't changed in 2 years, I think it just is what it is. If things start to change, I will try getting things figured out again.
Yeah the hypocrisy sucks. If it's actually serious they scold you for not coming in sooner. But if it's not then you're a drug seeking time waster. Or it's serious and they yell at you anyway and try and send you home without treatment. I've gone in cause I hadn't been able to eat or drink for two days, throwing up almost the whole time and unable to even keep my nausea meds down because my migraine had gotten really bad on a Friday night and I couldn't wait till Monday morning to get into my neuros infusion center. I was told that wasn't an emergency and I shouldn't have been there. Even though I was definitely pretty dehydrated. After my friend who took me yelled at them they agreed to give me fluids and the med cocktail that works best for my migraine.
I'm about to start on this mission myself of trying to figure out wtf is happening to me. Since I got the second dose of the vaccine I got severe joint pain as a side effect. Except it never went away. It's been 12 weeks and I'm in pain 24/7 and my hips just won't cooperate to allow me to even function in my daily life anymore. I went to this from never having joint issues so I'm very confused about how I ended up here.
I'm trying to mentally prepared to basically fight my way through shitty treatment from doctors who will be dismissive or potentially even accusing me of seeking pain control.
I have 40 yrs of experience with drs...i recommend you AVOID them at all costs unless its life or death (even then, I would think twice). Treat yourself holistically. I didnt get better until I stopped taking their poisons. The medical mafia and RUclips censors can all go to hell!
Get scolded for coming in for something not serious, get scolded for not coming in sooner when it is serious. Almost lost a lung for not coming in soon enough in 2020, but I thought it was better to tough out chest pain I’ve felt before than waste the ER doctor’s time. It’s a horrible situation to be in.
Fortunately, I was able to keep my lung and more importantly you kept your life. Very happy to hear you are doing better.
What did the chest pain feel like
Maybe those doctors need to get this thrown back at them when they start scolding: "last time you scolded me for coming in at all and wasting ER time."
It's especially frustrating because, as you mentioned, when people with chronic issues DO seek medical attention, we're often really passive aggressively told off by the people supposed to be helping us & made to feel like we're wasting med staff's time, so many people (ngl myself included) just dont bother going & getting stuff looked at for fear of that treatment. Im so glad they caught that and that youre recovering, im sorry you had to go through all this. Sending love ❤
EXACTLY
I mentally prepare myself for every encounter with doctors now. I know they're going to have not read my chart, downplay my issues, not chart what I tell them correctly, etc. And I hate it.
Which is why doctors who are paranoid about your health are to be treasured.
This! 🥺❤🙏
My dads pain was written off as anxiety (pain in his chest for hours and passed out) they found a dark spot on his lung and called it scar tissue from surgery even tho hes never had surgery there but “well then i guess you forgot” it was clearly not in his files but they wouldnt check. It was rediculous and turned out to be heart problems
It can feel so difficult to advocate for ourselves after endless medical gaslighting. Well done for trusting yourself. Rest well and let yourself heal physically and emotionally x
THIS ⬆️
I'm going to quote you and start using "medical gaslighting" as a term.
Definitely this!
Exactly!
Amen
Fellow chronic migraine warrior here…I have no concept of what NOT being in pain feels like. I think I might have a stroke or aneurysm and think it’s just a bad migraine/cluster headache and not get treated until it’s too late. I’m always finding scratches and bruises and have no idea what caused them because I just shrug off minor incidents or because the pain, nausea, lightheadedness, etc. are my everyday reality. This video is an important reminder to know what is normal for your body, and what isn’t normal and should be checked out.
Same. Like I've forgotten what pain free feels like. My migraine is sometimes so bad I can't remember my own name. One of these days something's gonna happen and I'm just gonna brush it off cause "Eh, I've had worse". I'm just hoping whatever it is doesn't kill me. I'm nauseous way more often than not and I forget random words all the time. I once broke my finger and didn't even notice till it swelled up, and that was before my migraine increased my pain tolerance.
Same here. If I woke up pain free I’d think I had died and was a ghost. One time I had the stomach flu and didn’t notice because I have gastroparesis and IBD. Vomiting and diarrhea are so normal for me. Wasn’t until everyone else got it and they were like. Didn’t you feel miserable?? I’m like. I always feel this way!!!
I've had 2 spinal fusions and live in pain, I also get migraines a few times a week. The military had me on close to 40 pills a day, a few years ago I tried cbd. Today I take 1 pill twice a day for my BP. I spent 20 yrs in the medical field and I call bs on Dr's and nurses when I know they are screwing me over.
Same here as well. I used to think EVERYONE lived in constant pain. I still can’t wrap my head around
the thought that some people live in zero- very little pain. I want to believe that not everyone suffers as we do!
I had a stroke but because of my and doctors wrote it out as heat exhaustion. It wasn't until a week later when I started having seizures and really bad memory issues that they did a ct and found the issue. Because of the initial diagnosis workman comp and disability were non existent and I was left hung out to dry by my company I worked for.
Took me 8 months before I was speaking and somewhat coherent again.
Honesty, stories like this should serve as a wake up call to medical professionals. Treating people's pain and concerns as if they are nothing and they are wasting your time leads to people not speaking help when they need to. I have had this experience so many times and I am now so reluctant to go to the hospital or to even bring up issues to my regular doctors because they so often get written off.
This is also why we need universal Healthcare. People should not be afraid to go get help because it will potentially bankrupt them.
YES. And yes.
Hi! I am an italian med student and was thinking just about how important it is for doctors to not invalidate patients worries. I really hope i will never do this tipe of stuff. However, this usually happends in countries with Universal Health care too, beacause hospitals easily become overworked for the number of doctors the state can hire, unfortunately.
Yes absolutely
With free health care uou also have issues with desperate under funding. Unless you go to the doc at 8am here, you gotta wait up to 6 months for a routine appointment
@Nicky L work and school..
I've broken bones, had severe infections and even had ruptured ovarian cyst and didn't go in right away because the pain wasn't so bad to me.
When I did go in the doctors and nurses have been shocked I could handle the pain or scolded me for waiting out the pain and symptoms because they've said I could've had serious life long complications, permanent damage or died.
The problem is I have such a high pain tolerance that it doesn't affect me the way it does other people. I've lived with chronic pain since I was born.
I can't always tell when the pain is serious enough to go to the hospital so there's been a few times I went in when I probably didn't need to go simply because I wasn't sure and felt it was better safe than sorry
I think of it like the analogy of a frog in a pan of water that's being slowly heated. It can't tell that the water is starting to cook it because the change is slow and steady and not a sudden sharp change from cool to boiling! That's how my pain is a slow progression.
One of my cousins has a very high pain tolerance. Once he was mentioning to his mom that his arm had been feeling kinda sore. She figured immediately that it was probably broken since he actually mentioned it as feeling painful. When they went to the doctor he did the touch tests and was like, no way it’s broken because he doesn’t look like it’s hurting and he isn’t crying or anything else. My aunt was like, you don’t know my son and he needs an X-ray. The doctor gave in finally and got him an X-ray and sure enough it was a nasty broken forearm.
I could share several stories like this. A big one was I had “swelling” in my throat. Went to an urgent care and the doctor said it was potentially life threatening so he sent me to ER for a CT scan and treatment. ER doctor downplayed it and refused to do any imaging. He decided he would just drain the potential abscess. He attempted this but only got blood out of it. Yet still sent me home with antibiotics. Ended up back in the ER again soon for the same issue and had to fight for imaging. It ended up being a large, extremely rare tumor. I had to go to a doctor out of state that had treated this before. When he found out they initially had thought it was an abscess and tried to drain it without any imaging, he was shocked. He said it was a miracle I hadn’t hemorrhaged and died. I ended up having multiple surgeries. Had a trach and feeding tube after surgery. Now have a vocal cord implant and life long complications. But the surgeon saved my life and I am eternally grateful. Now as a nurse practitioner I ALWAYS make a point to really listen to patients because they ultimately know their body better than I do. For that reason I am thankful for the experiences that I had. Now I am facing major back surgery and after years of dealing with the pain and being treated like a drug seeker, despite never once asking for pain meds, I have found a surgeon to help me. Hoping to be pain free someday.
I have definitely sat on a train googling symptoms of a heart attack trying to decide if I could go home like normal or if I needed to get off at the next stop and walk to urgent care. It feels ridiculous but also frustrating when you really don't know if it's serious or just your body being weird.
I'm sorry you've been through that, I've been there. One time it happened when I had just moved and was home alone in the middle of the night. Sudden strong chest pain, trouble breathing, and I felt like I was about to pass out. I had no choice but to dial 911 because I feared if I passed out, no one would be there to help me or know I needed help. The staff at the ER were so dismissive and downright rude to me. I was in so much pain I couldn't finish speaking a single sentence without stopping multiple times. Even as they saw me struggling like that and I told them what they gave me for pain didn't work at all, they decided to basically kick me out. They said I had heartburn and to go ask the security guard in the lobby where the nearest bus stop was so I could walk there and find my way home. I didn't even know where I was or how to get back home since I had just moved to a new area. Turns out I had pleurisy and required narcotics just to dull the pain. But even then, no one bothered to try to figure out why I got pleurisy in the first place, especially since it wasn't my first time but was definitely the worst.
We shouldn't have to do some mental budgeting math and google symptoms to decide if we should seek medical attention. We should be able to if we need it and be treated with some empathy and taken seriously.
I had a great uncle who was found dead at his computer with "what are the symptoms of a heart attack" search results on the screen. Always err on the side of caution. Sure, the ER people might be miffed if it turns out to be nothing, but that's on them for not understanding that checking things out is part of their job; don't let it get to you, and don't let it deter you from making the call for yourself.
My father had chest pains, refused to go to the hospital. Next day he died at the wheel of his car.
I had chest pains and went to the hospital, a couple of stents put in. That was 15 years ago.
Thought maybe chill with a beer would stop my heart attack…
I just told my husband how much I relate to you on this (and so much more). I'm always in pain .... It's hard to know regular "I'm always in pain" me vs "get to the hospital" me. Thanks for your candor. You're such a beacon in the midst of personal storms.
Oh this is how I feel. When I feel pain, I think, “Oh it’s just normal to me.” Or “If I go to the ER, they won’t listen to me, and write my feeling as anxiety.” Last year, I ended up in the ER, because I was feeling not myself. I ended up with sepsis and cellulitis on right leg. The ER doctor said he was glad I came in. This was three weeks before COVID hit. lol
Hey Jo! Glad you’re back. I ended up getting basic flu in 2020, and ignored the symptoms as annoying flu things. Muscle aches, delusional, fever etc… Next thing I knew I was in the ICU for 7 months and got my leg chopped off and entire right lung removed. 1% chance to live. Not what I expected at 22 yrs old. I’m recovering now, and your videos helped inspire me to fight my way back to surfing again Please listen to your body people!! Aloha
Wow, Glad you’re okay!
I'm so glad you're still here! What had happened, was it sepsis? It is so scary how quickly it can happen. I can only imagine the trauma you endured, I hope Jo sees this as I bet it will help her to know she has helped you 🖤🌸
@@Crowcifixx Yea, sepsis complications. I have a lot of info about what happened on my channel if you’re interested 🤙🏼
@@CarterParry thanks! I'll take a look:)
You are an amazing blessing and wonder and teacher of strength Carter!❣️ even though I’m fairly sure that this was NOT AT ALL on your To DoList! I’m sorry for the super hard parts of your experiences through being so extremely ill. Selfishly, I’m glad you fought and are able to reach out and write on Jo’s community as we can all inspire & Encourage one another & we so very much need these parts of human interaction more when we are down and out than ever before!❣️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️
Thinking of you Carter and hope you are able to enjoy some part of your holiday weekend.❣️♥️☺️
I too have a “dumb body” that has me in chronic pain, significant medical issues, and constant wondering. I completely understand what you’re saying.
l o v e H E A L S ALL W O U N D S = REMEMBER THE BEAT GOES ON,,,AS IN YOUR HEART
This is so relatable. It really is true that chronic illness/pain patients often have a broken gauge, not least of which because we’ve had so much experience seeking treatment and being told (with varying degrees of disdain) that there’s nothing wrong with us and basically that we should be ashamed of ourselves for not sucking it up. When too often it turns out that there IS something wrong, it’s just been written off for years, and now you can’t remember what life was like before.
Me: My tendinitis is acting up.
Doctor: It’s just growing pain.
Me: I’m an adult.
My best friend had chronic pain and died of cancer because she didn’t realize something new was wrong.
That is very scary
That's my worst fear
@@amyslager988 same
I'm so sorry for your loss.
As a fibromylgia sufferer and many reproductive health issues, this is one of my fears. I am always in pain and feeling gross. Will I be able to tell the difference between my normal and something seriously wrong?
Covid has been a head trip. I have been tested like 9 times but I always have overlapping symptoms and I don't want to accidently make people sick thinking I am just my usual miserable. So far I have just been my normal miserable.
I'm so glad you're okay!
It's very hard to put yourself through the stress of getting things examined by a doctor when all too often you are told that you are just "psyching yourself out". After countless experiences of chronic symptoms and pain you and the people around you begin to normalize it, often using the concept in casual language. Whenever something new arises you may not take it seriously, and even though in most cases you do end up being fine, there is always that possibility of there being a genuine problem. This is a very important issue and I'm happy to see people speaking about it.
Undiagnosable chronically ill for five years now. I call myself a professional patient. The issue with being undiagnosable is there is no illness track, every symptom could be nothing or it could be something. I have no idea what to expect or how this will progress. My rule of thumb is 2 weeks. I give my body two weeks to sort itself out, if it progresses (worsens) during that time then it’s time to get it checked out. More often than not it goes away within that two weeks without it getting worse. But that’s my rule of thumb regarding gauging what symptoms to be concerned with and which to let roll.
I'm also diagnosable, though I found it helpful to record pain, dizziness, migraines, headaches, joint pain back pain ect when they happened and how bad they were each and every day. Doing this for a few months let me see a pattern, so I was able to learn what was normal for my body and what was new and possibly an issue. It also helped me to understand what I possibly live with, so I can better help myself, since doctors aren't interested in helping me.
Almost sounds like an autoimmune issue. They are a bear to diagnose because it can constantly change depending on what your immune system decides to attack each time.
@@patrickbuick5459 yep, biopsies and blood work come back clean but my ENT said he is sure its autoimmune regardless, having colitis in the past (in remission now), I agree the patterns fit autoimmune as well. Unfortunately we wont get a name to the issue but the treatment is the same, nameless or not.
I have been in the hospital 2 times with sepsis and didn't know how serious sepsis was till after getting out the 2nd time and talking to my family doctor. Glad you did not get it !
I feel this so much. I feel like I'm constantly worrying about over and underreacting to injuries or pain. I have EDS and I'm also autistic so my pain processing is a whole strange thing.
I recently got diagnosed with PCOS and I'd kinda ignored the symptoms for years because I'm so used to having to shove pain to one side and just get on with life.
I struggle with knowing when to access healthcare because I don't want to waste doctors time, (especially because I live in the UK and the NHS is under so much strain) but I also feel like I never know when the cut off is that an injury is serious enough to go to a&e. It's also super unhelpful that when I do go to a&e with an injury half the time they can't do anything other than tell me to take anti-inflammatories and try to rest it
I also have EDS and am autistic and struggle with exactly the same issue. As a result I actually put up with a dislocated shoulder for well over a month on one occasion before mentioning it to my GP, and ignored gallstones, which people keep telling me is the worst pain they have ever felt, until it had got so bad that it took a 3 week hospital stay, lots of IV antibiotics, and when they operated things had got too bad for keyhole surgery so healing was considerably harder than it would have been if I had gone in before things got that bad…but I still worry more more about wasting the doctors time or being accused of faking than anything else when my partner or carer try to convince me to seek medical help.
I did an inpatient pain rehab program shortly after getting my EDS diagnosis and one of the talks was about not panicking and running to the doctor every time you get a symptom and I just sat through the whole thing feeling so frustrated wondering why they didn’t think to also teach us how to work out when we actually DO need to seek medical help. It’s like they just assumed we were all running to the doctor constantly over every tiny thing and had no idea that some of us have been conditioned over years of negative reactions to us mentioning our symptoms or legitimately asking for treatment, that we either tend on the side of ‘oh it’s probably fine’ to symptoms that would horrify ‘normal’, healthy people, or are scared to ask for help in case we get another negative reaction
Literally same. I chose not to go to A&E a few months ago over a potentially broken cocycx. It could also have been bruised of disclocated but all I know is I was in a substantial amount of pain. Not the worst pain in my life but combining OTC cocodomal and ibuprofen didn’t touch it. Nearly 6 months later it’s not still not fully healed and I’m maybe realising I should have done something. But every time I do do something about an injury doctors are like “oh it’s nothing” because high pain tolerance so it still never heals because I take that as “carry on as normal” and I feel like I’ve wasted the doctors time.
Another one here with autism and multiple health issues. Possibly EDS. Severe osteoporosis. Really weird pain and discomfort at the moment. Am fed up of being told it is just stress. I was much better before I fell up the stairs. Also in UK.
It speaks a lot to our healthcare system that they have turned you away so many times that not going in is the first response. I am so happy you decided to go and that they listened!
I had a similar experience years ago... I was baking cookies on a Thursday to bring to work and I thought "huh, that's weird... the thought of eating one makes me wanna vomit..." That's really weird for me because I was baking my favorite type of cookies- oatmeal peanut butter chocolate chip. But I ignored it, took the cookies to work, and went about my day. Two days later I still hadn't eaten due to a loss of appetite and was feeling weak, so I forced myself to eat a sandwich. I began getting stomach pain at that point, but I ignored it. Fast forward to Saturday night and I ended up in bad pain any time I laid down- I couldn't sleep at all. So I slept at my desk, sitting and bent forward for a few hours. That reduced the pain to what is tolerable for me, but it was still consistent. So I woke my sister up to take me to the ER and she starts driving me... But I didn't have insurance at that point so she convinced me my pain wasn't bad enough to justify the bill I'd get from the ER. I listened to her and we went back home... Monday comes along and I make myself go see my primary (she always gave me cash discounts). She ordered blood work and an ultrasound, and I took both to my school's health center to get it discounted. I got a call a couple days later (Wednesday) and was told I need to go to the ER- I have pancreatitis. I start packing to go to the ER and my GI called to say that because I am tolerating the pain and am uninsured he is willing to let me try bed rest and fasting for a week at home instead. I chose that and we checked my blood again a week later and the pancreatitis was improving, but I was out on bed rest plus fasting due to this for about 3-4 weeks. At my next follow up with my GI he told me we couldn't figured out the cause (my ultrasound was normal) but that it could have killed me and if we don't figure out the cause we can't prevent it from happening again... And the more it happens the more likely it is to kill me. It's really frustrating to this day because pancreatitis is supposed to be one of the most painful things you can get- and since I waited 5 days to go to the doctor many don't believe that's what I had despite the testing to prove it. But I have a very high pain tolerance- it gets me in trouble sometimes. Anyway, we still don't know to this day why I had pancreatitis. There's some suspicion it's become a mild chronic pancreatitis now, but it's just a lot of guessing. For the first few years any time I got even a remotely similar pain I rushed to the doctor... It took a while to stop thinking literally every stomach pain is the pancreatitis coming back. Anyway, that really messed with my head for years... I was always terrified I was going to get pancreatitis again and I was going to die. I think learning to pay more attention to my body has helped me. I now realize most pains are nothing like I had during pancreatitis, and I know enough about it now to do self-checks to calm me down when I do get pain. But Jo, you're 100% right... Chronic pain really makes it hard to judge what is serious and what isn't.... Hang in there.
I ended up with pancreatitis when I was pregnant with my son & almost died. I just had it again about a year ago. It's painful stuff. When I was pregnant, I was having issues with my gallbladder, so I thought the pain was from that & waited to go to the ER. I got lucky. Very lucky.
@@Snugglecher It is pretty painful! To this day it's tied my #1 pain (tied with when I had my kneecap dislocate and when I had a sudden pleural effusion). I hope you were able to figure out your cause of pancreatitis- sounds like maybe taking care of the gallbladder may have helped?...
@@TheMissMaggs Actually no because the second time I had it was last year and I had my gallbladder out 15 yrs ago, right after I had my son. They couldn't tell me what caused it this past time. I do know that I have a weird food allergy & that reaction seems like the same pain as the pancreatitis pain. It's crazy really.
Ever story like this I hear makes me more and more convinced that the American healthcare system is nothing short of criminal.
@@Snugglecher Well, I hope they did a bunch of testing before they assumed idiopathic (eg: unknown cause). The've found mild cases of cystic fibrosis in adults as old as 50 that have caused pancreatitis. This is a major fairly recent discovery because it was always believed that CF was severe and consistently fatal. But now that every infant is screened we've learned that mild cases do exist, leaving people with things like chronic infections of the sinuses, lungs, or GI tract and pancreatitis that were never properly diagnosed. And there are a few anecdotal reports of food allergies triggering pancreatitis (one report showed every time a woman ate a banana it triggered pancreatitis). So there's a lot to consider is what I've learned. Has your pancreas been able to heal each time or have you had to take pancreatic enzymes due to it? (feel free to ignore that question if you want. I'm just curious)
I appreciate this video so much. I am one that usually just grins and bares it when I'm having an issue. But because you shared this story I ignored my nature and trusted my gut and went in and I'm glad I did because it prevented me from getting to that danger zone. I was pretty close. So I just wanted you to know these videos do make a difference ❤
I've been sent away from my doctor, strongly implying that I was "imagining" my heart skipping beats after they did a couple of tests and decided it was all fine. My heart still skips beats from time to time six years later, but it doesn't seem to be killing me ... I hope ... So, yeah - it feels like you can't win. You go in to get things checked out, and then get sent away like a small child lying about what's going on. Why *would* you go in so quickly?
What you should probably look into getting is a heart event recorder.
Any time you feel like an even is happening, you put the device to your chest and hit record.
Now, if what you have doesn't last long enough to do this, you can look into apple watch or similar products that can record heart beats.
Doctors can prescribe devices for long term recording when events just don't happen during observed testing episodes, but this just depends on what country you love in and if you have health care and can afford it.
(Good luck, it could be a simple fix, but getting people to listen is some of the hardest.)
There is something called a 7 day ekg. It is a brick-sized device that you carry on your chest for a week and it records everything your heart does. I had to do it once, it might be worth a try to find out what is going on. In my case, they didn't find the thing that was wrong during the ekg in the doctor's office, and not in the hospital's ekg either, so i had to do the 7 day one to find out what was going on. Fortunately, it has improved a lot since then.
Drink a lot of caffeine? I also have a flub-dub heartbeat. Could turn into A-fibrillation which is a potentially life-threatening cardiac problem.
Sending this to my wife... 2 shoulder surgeries with a third imminent, 2 knee surgeries, TMJ, herniated disks, abdominal issues, chronic fatigue and a myriad of ancillary athletic injuries... finally connected all the dots a few years ago... EDS. You are 100% correct... as someone who sees someone deal with chronic pain on the daily... she... no WE, need to be cognizant of this issue. THX.
My heart skipped a beat when you said "it is very expensive." I'm from Norway and I cannot for the life of me understand the health care system in America.
I feel like it shouldn't be a matter of if you can afford the trip to the emergency room or skip because of finances. I'm glad you okay and got the care you needed, but oh did I wish you wouldn't have to think about the cost ❤️
Yeah..when it comes to healthcare..it’s scary over here. I have multiple chronic illnesses and mental health disorders and I haven’t bothered seeing a doctor in 5years because even when you go in, nobody helps.
@@TheKatarinaGiselle that's horrible! 😕
omg I know! As a Canadian I will never know what is must be like to worry about how Im going to pay for medical treatment if needed. Universal Health care should be made available in all countries, and while I know I pay wicked amounts of tax I also know my health will never suffer....
Norway is tiny, I’m sure paying for everyone’s medical care is extremely cheap compared to the US.
@@aprilleerose yes! Thank you for saying this.
I totally sympathize with your situation. I’ve dealt with and continue to suffer from Anxiety, Depression, etc (no diagnosis yet) and about a year ago I realized I had no idea what was normal sadness or stress and what was abnormal. I didn’t know if I was just spoiled and being lazy or if there was something I seriously needed help with in the form of medication. I’m still searching for my normal, but I’m much closer now. Good luck on your journey and take care of yourself!
My radar of “Does this require medical attention?” is also very skewed. I’ve got a chronic illness and was in and out of doctors offices for my entire childhood. I’m constantly caught in this cycle of “Is this a random moment of pain that will go away in 5 minutes or should I see a doctor?”. I dislocated and sprained my thumb but didn’t bother seeing a doctor for a month because “The pain will be gone in a couple days and there’s nothing a doctor can do for a dislocated thumb anyway…..”. I’m working on it though and learning to take breaks and not push through something that could be serious.
My brother died from an infected pancreatitis turned septic. He had been written off by his doctor but should have gone to the ER. I can’t imagine the pain he was in! Glad you’re okay!
Oh my God. I am so very sorry, dear Ellen :(
I have herniated discs so sometimes it’s hard to tell the difference between that pain to like UTI kidney stuff. So it scares me because I also don’t know what’s what. Ive only had once where it went to kidneys but thankfully I got sorted out with antibiotics.
Glad you are fine!
Damn, thank you so much for sharing this. I'm fortunate enough not to live with chronic pain so as a trainee doctor, this is a really major point I've never really thought of. We always tell patients 'better safe than sorry' - but how do we go about supporting those who, as you say, don't necessarily have that gauge?
The medical field as a whole HAS to do better. I know the limited time and resources all too well... but some people don't realize the dismissal of their chronically ill patients could be the reason people die when something is genuinely wrong.
Never feel like you have to change your demeanour for us! We love you even when you’re down, sad, stressed, low etc ☺️
BRAVO 👏 I've been that person in the ER. However I've also found myself at home trying to make that decision at home.
Know one who doesn't have a chronic problem can understand our lives.
I relate to this so hard. I literally ended up in the icu with sepsis and adrenal crisis back in September because I thought the tooth infection was just my TMJ and my fever of 103 was just my autonomic dysfunction 🙃 Another scenario I always put off going to the ER for is pain. I will literally be curled in a ball, vomiting, crying, rocking back and forth in pain and still try to convince my loved ones that I don’t need to go in. Aaaand then since I can’t keep my meds down and my body doesn’t make cortisol (the stress hormone your body secretes when you’re in pain, sick, scared, mad, etc) I end up withdrawing from my meds (making everything worse) and going into adrenal crisis which leads to shock and regularly death. I think after so many years and even more drs & other healthcare providers telling me or implying that I’m faking it, drug seeking, over dramatic, etc or just treating me like shit and saying “we can’t help you” (when they really mean they *wont* help me), I just don’t have it in me to get dressed, pack my bag just in case of an admission, get a ride to the hospital, wait for hours and hours, deal with sensory overload, more pain, telling 27 ppl why I’m there, wait some more, and all the while knowing I’m risking dealing with all this just to be told there’s nothing they want to do… it’s just the biggest deterrent for most chronically ill people to even go in to be seen and I don’t think healthcare professionals truly grasp that concept. Especially if you have an invisible, undiagnosed, or pain related illness or disability. And if you’re neurodivergent or have communication difficulties? PTSD? Forget it. It just sucks. I’m glad you’re feeling better and on the mend ♥️ Love ya sister!!!
Yes!! Exactly! Well said.
I'm glad you're ok. I've got fibromyalgia and PTSD and get sensory overload just by going into a store, let alone the emergency room. Put on top of that all the medical staff who have abused me because they thought I was faking. We have to keep seeking help when we need it, it's our right.
Omg so true! Perfectly put! I wish I could wallpaper your post on every ED/ER wall! 🙌🏼🙌🏼
I agree with everything you just wrote.
I am so sorry you have to deal with all that.
I've definitely had a similar issue/experience. i have a few chronic illnesses and am used to pain, discomfort and random things cropping up. i almost waited too long for a blood clot. thank goodness i actually ended up seeing cautious doctors because i didn't have the usual symptoms, but i had enough flags that they had me thoroughly checked out, and found the clot. (Canadian Healthcare, phew).
it's scary knowing you don't know when you're in danger. i always worry my appendix will burst and i won't realize because i've had such bad stomach pain for so long. i wasn't even worried about a blood clot.
I hope all your fluffy helpers are taking good care of you.
This is one of the big reasons you shouldn’t have to “pay as you play” with American healthcare. Imagine you were a person who didn’t have adequate insurance in this same situation, I doubt you would have gone. The American health system is literally fatal
@Nathan Michaels as in insurance that will cover whatever it is that you are having an issue with which you would then choose to not go in for, since you would have to pay out of pocket. It really wasn’t over simplifying, there were clear context clues for what I meant
@@Travelbyailsa I understood what you meant about the health insurance. You can be poor enough to get state funded insurance (in California) but the plans can be so shitty they will deny what you truly need. Then you can work hard and earn more money but get caught in this weird spot where you "earn too much" to qualify for MediCal but realistically don't earn enough to pay for an insurance plan. So you go without insurance and hope you don't need to seek care. I was there with my last job. I was living paycheck to paycheck because I was being underpaid but according to the state I could afford my own health insurance. 🙃 The healthcare system in the U.S. is just all kinds of effed up.
I got hurt while not having insurance and didn't seek care because I couldn't afford it. Two years later and my arm still hurts in different spots, including what feels like bone pain. Maybe I fractured a bone but I couldn't afford to find out when it happened.
Mine wasn't fatal, but I left an ear infection untreated for several months before it go bad enough I begged to go to an urgent care clinic because I had 0 insurance...yeah that was a scolding of a life time from that. Lucky she had a cheaper medication for me to use, and there luckily doesn't seem to be anymore(I had ear infections a lot as a kid) permanent damage to my ear.
Biggest reason why I could never live in the US, I would probably die from the stress of the though of health insurance. I feel so lucky that I have been able to get mental health care pretty much free where I live, without it I would be dead, I want others who need get this same help too, if anyone tries to chance it I would fight it. I don't understand how Americans can accept beeing treated like they are nothing by their own country and how can they watch people who can't afford health care suffering. No wonder American's don't seem to trust their doctors and think they're only after their money. With free health care you don't have to be concerned over this, that they're prescribing you medicine you don't need to make money.
The US system is almost designed to kill poor people. It is accepted by the medical industry that if you are indigent, you deserve to die. As a former lab tech, I was told many times that I couldn't get a raise because "collections were up" meaning people were not paying their bills. At the same time though, the company owning the hospital was reporting record profits to shareholders and the CEO was getting millions PER QUARTER in bonuses. It's not caring for people, it's a business.
Thank you ! This feels like my daily life I've had chronic pain and issues for over 10yrs. Have struggled with back and chest pain for most of that but always been told there was nothing wrong. But when it suddenly got worse last year I am so glad I listened because I found out I may have a issue with my heart. I am also so glad I live in the UK where even if it turns out to be nothing I can go see a doctor and it's not going to cost me. I love the NHS and even with all its problems it is the best thing about being British and I am so proud of it!
Your home is so freaking beautiful I LOVE the background that rug, fire place, ottoman, PERFECT together! 🤩
Awww oh my gosh thank you!
I just found your channel. I support this message 100%. I was walking around with a broken spine for months and a infection in my spine that got big enough that it compressed my spinal cord and almost made me paralyzed. After an emergency surgery I had to learn to walk again.
As someone with chronic pain and multiple disabilities, I can truly empathise with this. Literally I’ve had an odd chest pain this past week and debating whether it’s really weird or just a bad chronic pain week.
When you started describing, I was thinking, that sounds like my kidney stones.
You are the first person, I have heard talk about, the problem chronic health sufferers have, knowing/wondering, when to get something checked out.
20 years ago I got a flue? that changed my life forever.
Lots of frustrating trips to specialist, to be told, everything checks out fine.
Told it could be mental, not physical....maybe?
I learned how emotionally important it is, to feel you have some knowledge, and control of, what's going on in your body. That makes undiagnosed illness so hard.
Thanks to you, and the others in the comment section, sharing their stories.
My grandma almost died because she let her gallbladder get too serious. When she finally came to the hospital she was rushed to surgery immediately.
I am so glad you're here.
Oh, the stories I have about my gallbladder. And the completely horrid treatment I received when seeking medical care for it. It was deplorable and disgusting. I'm glad your gma got treatment.
This exact thing happened to me. I had pelvic surgery and the day after, developed significant flank pain. Went to the ER, it let up, they sent me home. Then overnight it came back with a vengeance and I started vomiting. Went back and I was already septic and my kidneys and lungs were shutting down. Was admitted for a week.
I regularly get pain from my endometriosis, fibromyalgia, and syringomyelia that gets just as bad, and the question of whether go to the ER or not is always there. I definitely do not have a compass either. I'm so glad yours was caught before sepsis and that you are on the mend. 💜
Firstly I'm so glad you are okay and went to see a doctor in time ♡ I totally feel you. I have a chronic illness as well and it can be so hard to make the distinction between your body just having a bad day like so very often or catching something more serious going on. I'm fortunate enough to have a partner that has developed a 6th sense for me feeling unwell. Prior to that I often slacked in seeking medical attention as I felt like a burden. Thank you for doing what you do, I'm so glad I found your channel ❤
Thanks for the reminder. My body is doing a lot of weird shit right now, currently everything happening has been investigated. But will try not to write off all new weird shit as my recently diagnosed chronic condition.
Jo, I have definitely felt this way before. I started having some new lower back pain around Thanksgiving last year and I didn't think much of it because back pain is just common for me. After several months of just dealing, then three of PT, another with an SI belt, I was finally referred to get an MRI. Turns out, I had a partially herniated disc for the last six months. When the doctor told me that and didn't just say, well you have chronic pain so sucks to suck, I just started crying too. I was convinced it was nothing because I have been told that so many times. I also got an epidural on Monday and am now really on the path to recovering instead of just dealing with it.
I have a very rare (one in 5 million people have this) nerve disorder that is pretty rough. It’s Reflex Sympathetic Dystrophy. I have had it for 30 years. I have had a thousand visits for nerve blocks, surgeries, drug trials, you name it. I unfortunately broke my pelvis tripling on my adorable pandemic puppy. ARGH! It is broken in 2 on the left side which is my BAD SIDE! I get how you feel about having weird stuff. I always have skin issues, pain of course, leg cramps that make you cry, infections in the skin and many more not fun things. So! I am SO SO glad that voice deep inside told you something was very wrong. Living with chronic pain we brush off so many things that we probably shouldn’t. This was a cautionary tale! Thank you so much for sharing. I needed that wake up call in my own life! Have a great Monday! Feel better!👍😊
I get like that all the time. It's difficult to know what requires being seen and what doesn't. It's also frustrating because with being on the younger side many doctors write it off because I'm young and "couldn't possibly have all these health issues/it's all in your head." I'm glad that you got checked out and are doing better. Thanks for the reminder to check in with your body.
I feel that so much, oh should I go or shouldn't I? I don't wanna be overdramatic, but what if it's serious? If I go to the ER or doctor, will he/she take me serious or will he /she think: this girl is young, probably nothing dangerous? That's so stressful to think about it.
Thank you Jo for sharing this. Its so important that you emphasise this because like you say when you are used to being in pain its hard to differentiate and not putting it off. It's so hard to know what to do but always get checked out follow your gut. Just came across you. Thank you for sharing the good, bad and the ugly.
I know that feeling of not knowing. I just went to my first Neurologists appt. and pretty much got lectured the whole time that after 30 years of migraines and 20 years of nocturnal seizures this was my first neurologist's appt. Part of it was because where I used to live PCP's never referred out to specialist and other was a fear of the neurologist and MRI's. Besides so much of the time when I do go to the doctors they either just push drugs on me or they tell me nothing is wrong or they just don't know why I am sick all the time. It's so frustrating to deal with. Oh, and how many times have I gone in for chronic pain and been given antidepressants! That completely pisses me off. Now I am stuck waiting for the neurologist's office to get back in contact with me for the next steps after the MRI and EEG. WTF?
I feel your frustrations girl. I have had chronic pain all my life, I to miss judged a pain thinking ahh it's all good, it'll pass. Nope!! Finally went to hospital thinking bad flu. Nope, not that either. Spontaneous rupture.
Spleen. I died twice that night. I was put into a 4 day coma.. life is odd.
I’m so glad you’re okay. I had a similar experience when I was 28, and it really scared me. Lifelong IBS, several days of trying to ignore severe abdominal pain. Husband convinced me to go to the ER, turned out I had very severe diverticulitis. Doctor told us that if I had waited much longer it could’ve created multiple ruptures in my intestines and I could’ve died.
I had diverticulitis hospitalizations many times years ago and they stopped. One day I go to piss and my pecker starts farting at the end and making a mess. I look on the web and it says it could be a fistula. I call my surgeon and he agrees. The tests concur. The intestines' got a hole in it so the body fused the bladder to the intestine as a defense mechanism to prevent sepsis.. That was open lower abdominal surgery. Painful, I've had many and this was the worst. Morphine and Oxycodone worked as long as you didn't need to get out of bed or cough. Luckily everything got reattached without incident. I might have wound up with a temporary or permanent ostomy bag.
I totally feel you. You phrased it perfectly. Those of us with chronic pain NO Longer know what is “normal” and what isn’t. Since a lot of us have brushed aside & people didn’t understand our pain. Fibromyalgia for 18 years and I constantly blame every “issue” on Fubromyalgia, because the doctors don’t understand or know enough about it, everything is “blamed “ as a symptom of Fibromyalgia.
Hope you are feeling much better, Kiney pain is horrible, I had to be hospitalized due to one, once, because the doctors said I should have known & came on in, it happened overnight!! Scary!! Hope you are feeling well today!!
I can't imagine going to Emergency just for pain. I have pain every day and I'm very aware that doctors don't care. I would go only for a visible wound that they can't deny.
I went to the ER cause I was unable to walk due to the pain, but also because part of my body went numb. When they did testing, "all is normal".
Why is chronic pain annoying. Dumb bodies are a pain
A very strong message for anyone who has seen too many treatments in life. It's true that we should never stop to remember that we should not just be okay with being in pain. At the same time... Remember that it is partially necessary to shift our tolerance to pain to make the best of our situation. It is a thin line, and therefore very helpful that you spoke about the topic so openly. (Helps to know that this happens to other people too...)
I'm so used to doctors not believing me and just throwing a prescription at me that it's hard to take my own symptoms seriously. I have Ehlers Danlos Syndrome and I deal with excruciating lower body pain that sometimes keeps me immobile in bed. Turns out thats not normal, but my doctor thinks I'm either faking it or looking for drugs. Fml.
What? This man ignoring your official diagnosis and tell you that you are faking? It's case for going to court. Really. You have documents that you are ill and this 1 lowering your life quality 2 can finally kill you.
Do you have even possibility to go to another doctor/medcenter in your country/city? Do it. At all costs
@@KT-in3wb I've been told by half a dozen doctors that I have it but every Rheumatologist I have gone to either doesn't believe EDS is a thing, or that because it's Hypermobile EDS and can't be confirmed with testing, it's a fake disease.
@@jocelynprior1874 rheumatologists suck for EDS care. Better to find a good physical therapist or orthopedic doctor. I was actually diagnosed by a dysautonomia specialist, so those are good, too.
I've been dealing with chronic pain for a while and, until this video, I didn't realize I'd gotten used to just trying to ignore it. This has helped me see I'm trying way too hard to keep up with able-bodied people and I've been so FRUSTRATED with myself because I just can't sometimes. I'm not like the people I've been comparing myself to and I never will be. Time to find some balance with myself and not ignore the pain until it's crippling.
This hits home so hard. I am never sure when I should really go to the ER, because I’ve been brushed off so much, and frankly I’m always in pain.
I’ve had a severe kidney infection in the past, and it was excruciating - it was when I was quite young so still going to the hospital before I started thinking they wouldn’t care.
I'm so glad I found you; I don't have the words.
Thank you.
So glad you're OK. As someone who been through a similar experience, I can sympathize with how hard it can be to judge how serious a new pain or symptom actually is. It's damn scary when you realize how close you came because you were thinking 'Oh, great. Yet another weird thing my body is doing. Fantastic!'
Years ago, I thought I just had a stomach bug that wasn't going away. My doctor thought it was an inner ear infection, but decided to do a full blood work just in case it wasn't. Turns out my blood was disintegrating & if I had waited another day, I would have died.
I feel this story so bad. I always am in pain too and I have totally missed out on treating a ton of injuries. I was very much raised in the ‘always get back on the horse’ culture so I never got injuries looked at until the past few years. To the point where I have trained and worked on fractures and never really took time off to heal unless I physically couldn’t do it. I really regret that now because my body is actually falling apart at 27. I highly suggest actually getting injuries looked at and not ‘walking’ it off. Especially head injuries, those really mess with you long term.
This literally happened to me about two weeks ago as well! Been having on going abdominal pain for like ~2 years now, all labs were clear so I just suffered through it. This past flare, I realized that I had a low grade fever after about 4 days. That is the ONLY unusual thing that happened. Between my chronic pain and my health OCD, I never know what is actually a problem and what is just my body/brain being a jerk. Thankfully I followed my panic and went to the ER and found out I had advanced acute pancreatitis and needed antibiotics ASAP (they were baffled by my lack of pain, guess I just got used to it) - which then led to an MRI, the discovery that my gallbladder was almost completely full of stones, and surgery to remove it. But if I hadn’t impulse taken my temperature and saw a fever of only 100, things could have been very bad. It’s frustrating and terrifying but thankfully, like your story, ended up alright.
Yes, I have been there and done that. It started in my late 20s and I am now 62. For me, the hardest thing to deal with is when the people closest to me says “what’s wrong with you now”. In less than a year, I have suffered a stroke, and a cancer scare, on top of the daily pain that ranges from tolerable to what I call”razors edge”. When I come across someone like you it helps me to remember that I am not alone and I am not crazy.
I went into kidney failure last summer. I’m definitely overweight so the first doctor I spoke to basically said “hey you’re feeling like this bc you’re fat” and sent me on my way. A week later I was in the hospital in acute kidney failure. People definitely don’t realize how much your kidneys affect EVERYTHING else. Also, I’d like to say that doctor was just an ass, but a lot of them sadly are.
And, especially they discount women.
Your doctor was an ASS?! Seems you have exchanged roles.
@halcyon unfortunately too many times all doctors see is certain attributes someone has, their weight, their age, their sex, their race...and make assumptions based on that ONE thing without even fully listening to WHY they are seeking medical care. I know I'm black, I know I'm overweight, I know I'm female...but WHAT does that have to do with THIS particular thing? Could they be a factor? Maybe, but often it's not the entire thing.
Yes you are 1000% correct, her doctor was a donkey for sure!
i’m so glad you got to the hospital in time ❤️ i completely understand the worry of being dismissed, the “everything is fine” is the most frustrating thing in the world when you know everything is *not* fine.
Omg this has happened to my mom twice and both times they were like "why didn't you come when it was a bladder infection? How did you let it go so long until it was in your kidneys?" but both times she couldn't give them a good answer because she's also a chronic pain sufferer so the bladder infection must have been nothing to her too until it got to her kidneys and she finally noticed something wasn't right. (b4 menopause she also had super painful cramps when she got her periods...something biology decided to pass on to me too lol, so I'm sure she might have thought that it could have been that too)
I understand. I always get new pains checked out, even if I think I know what it is. Costrochondritis (inflammation of the sternum/ribs) is a symptom of my illness (axial spondyloarthritis) and causes chest pain. When I first got that I called my rheumatologist who sent me to A&E just in case. I think that experience is what set the bar for me: always get something new or different checked out, just in case. Glad to hear you are getting better, and intrigued to hear more about your new diagnosis! Look after yourself Jo, your health comes first. We will all still be here whenever you are ready ❤
I feel ya with my "is this normal migraine I have constantly or am I having a stroke?"
SAME!!!!!!! Greetings from Croatia, dear Raven :)
Girl this is too real! That battle is one I am all too familiar with and it’s become even more complicated after COVID. It’s so overwhelming!!!
I will say, having some of the diagnostic tools at home (temp, BP, EKG, Pulse O2, urinalysis etc) has been helpful in assessing whether or not I should go to the ER. Even then… -.-‘
Thank you for sharing! Glad you were able to get diagnosed in time.
Septic shock ain't no fun. I was admitted this time last year for septic shock and osteomyelitis/septic arthritis in my hip, si joint, and lumbar, multilobe pneumonia and a PE. They sent me home only taking cultures because I begged them to .I went to the ER right away because I was quite literally in the worst pain of my life, to date. .. well except the second time when they sent me home AGAIN. They wrote me off as a meth addict (I'm in WV and theres a high abuse rate here) because I have a rash from cutaneous mast cell activation that resembles the rash in meth users. Still not ok to deny my.treatment either way though, regardless if I was a drug user.
I had come wo close to dying this time two years ago. I'm having quite a bit of extreme C-PTSD flashbacks this year for some reason. Scary time.
Honestly... I totally agree with you about dealing with chronic pain. I seem to wait ... Not sure why.. But I seem to wait and go at the last minute. I lost my foot and ankle on 4/30/21 due to an infection that I waited too long to get treated. 62 days later, I feel a billion times better than that day and previous weeks.
I am glad that you are better. I hope that you continue to heal. I get my "new" foot and leg on 7/6. Thanks for your videos... They have helped my personal journey so much!
I'm chronically ill and this happens to me every time I feel too sick. I go to the ER, they run tests, and then everything is "OKAY" they send me home and that's it. but after two close friends almost died for not going to the doctor for weird things.... I rather wait hours at the ER, heard again and again that all my test are normal than risking my life.
it is exhausting to hear that all your test are normal but... fuck it, I'll suck it up.
Bless you so glad you went in to the hospital. I have Fibromyalgia, osteoarthritis, ptsd, chronic fatigue syndrome...when ever i have a different pain it is usually chalked up to one of those being, one of those. I'm with you, I don't know anymore what is just them or something new. I am a Medical Assistant/In home care provider/ Nurses aid. (now retired due to my illnesses), you would think i would know what's what, right? And that scared the tar out of me. My doctors will say talk to your primary and she goes, "why? thats why they are the specialist talk to them! Then I go in circles, so i give up and go into the ER and they ignore everything else and look at me like its a new thing... Take care and know you are not alone and your longdistance fans think fondly of you and wish you well. bye from california
I can somewhat identify with not having a good gauge for knowing when things are allright. For example we are told that a cough is one sympton for covid. But when your work partly is in a freezer you have a good reason to cough without having covid. I have other examples, but I don’t want to reveal everything online
Oh my goodness.. I'm glad that you are okay, it can become very difficult to tell especially when the body's natural warning system (pain) is all jacked because of chronic pain/illness.
This happened to my husband. His boss made him go to the doctor and take medical leave for 3 months. Finally figured out he had precancerous polyps. If we had waited another year it would have been cancer
I’ve had Crohn’s disease for 24 years & I legit ignore random pains all the time. I have the same mindset as you with the “oh my body’s just being weird today” thinking. It’s gotten me in trouble with my doctors multiple times over the years when I just take the pain & don’t seek help. At the same time, I’ve also had doctors minimize issues that I think could be a big deal. I have a really hard time trusting my instincts anymore.
So hilarious that the ER nurse scolds you for not coming in sooner when you’ve been there many times before only to be told in so many words “why did you even come in?” I don’t know what your reply to the nurse was but I would have unloaded my frustration.
I just wanted to comment and say this video really helped me out.
I recently noticed some irregularities in my vision and while I usually brush it off cuz yeah that chronic pain/illness life, I couldn't shake the feeling that something was Wrong, and so today I went in to an emergency optometrist and it turns out I have swelling in my ocular nerves and need to see a specialist.
We don't think it's anything serious thankfully, but if I had waited it could have been, and when I was debating going in I remembered this video and decided I should trust myself and go in to see a doctor. So thank you for being open with your journey here on RUclips, and I'm glad you're doing okay!
My experience with ER and seeking medical help has been either 1) you're fine, why are you wasting our time or 2) oh my god why didn't you come in sooner.
I have a similar story. 7 years ago I swallowed a fish bone. It didn't dislodge on its own so I had to call the ambulance to take it out. The ambulance came, extracted to fish bone and i went on with my life as nothing ever happened.
About a week after that happened I got a sore throat. At first I thought I was just tonsillitis since I have it frequently. So for a few days I ignored the pain and discomfort in my throat and continued going to work (absolutely terrible thing to do when you're ill) . Eventually I couldn't eat, i couldn't speak, I couldn't swallow and I still decided to wait until the next morning to see my GP.
However at night I couldn't breathe anymore so my mother called me an ambulance. From this moment onwards I have no memories of my own. I know I was taken to the hospital and I spent the night there. Basically the spot where the fish bone got stuck got infected and I had a massive abcess in my throat blocking my airways. They drained the abcess and put me on some heavy hitting antibiotics for a while.
The doctor told my mother that if we had waited until the morning as my original plan was I would've been dead. When my mom told me that it hit me how serious the situation was. I was literally a few hours away from death.
I'm glad you're doing better Jo
OMG yes to your first paragraph. Or something is actually serious and they still try to send you home without treatment. I had a doc try to convince me that dehydration isn't serious. Even though I'd had nothing to eat or drink for two days and I'd been throwing up for most of that time. They struggled to get a line in and I have great veins (well when I'm not super dehydrated).
Glad you're on the mend. I learned the hard way how serious bacterial infections can get when I developed cellulitis (a deep skin infection) suddenly. One day later, I went to the emergency room and was admitted in early stages of sepsis. I'm now hyper-vigilant about seeking medical treatment whenever there are signs of infection. Stay safe and take care!
I hate that this is a common experience for people with chronic health issues.
I had a spinal tap in May that went really well! So well that it helped heal past trauma from a spinal tap when I was 12! Buuuut it didn’t heal quite right so I ended up with a CSF leak and the accompanying horrific headaches a couple days later. I went to the ER to get a blood patch to fix it, as my neurologist told me to do, and while I was there waiting I still felt like “uhhh should I even be here? I’m probably taking up valuable space just for having headaches, even if they’re so bad that I can’t think if I’m not lying flat.”
I had this happen too! The low pressure headache is awful, I stayed lying down for a week and when I needed to get up I'd be counting the seconds before I'd have to lie down again. I probably should've got a patch but was too afraid of more spine needles 🥲
Sweetie...I have chronic back pain. My back pain became worse and I just chalked it up to going to the next stage that I was going to have to deal with. One day it became it the point of not breathing well and crazy pain. Went to the ER and found I had a kidney stone lodged in the tube between the kidney and bladder. It had been there for so long I had become septic. I was in ICU for 7 days. I listen to my body now. You never know what it can be!! Glad you're better!!
I’m CURRENTLY feeling this way. I have been having increased heart rate the last few days. And I ask myself: is it due to heat + dehydration (ik I wasn’t drinking water lately…oooops) or is it a problem? Idk.
Has it been at a consistent increase or getting higher and higher
Hey please drink plenty water! That's how kidney infections can happen. You gotta keep the system flushed! And hydrated :) I hope you feel better soon but do take care - always better to go and be brushed off if you're okay than leave it and be in danger
I think that you should go to the doctor
@@gilly_axolotl just got higher recently. But today it is getting a bit lower. I think I might be having severe anxiety when I think on it due to subconsciously stressing over things in my life. Also, I’m in Los Angeles. The heat is NO joke and I haven’t drank water properly for days nor have I slept a full night in weeks. :/
@@Crowcifixx I agree. I had a UTI last year and got a pretty good scare from it. 😣
I get you, and I'd like to add on your reflection about how you often get told that there's nothing wrong going on with you. This is also the reason why we tend to doubt ourselves so much. I had so many doctors just look at me, puzzled, and just being "hey, might just be stress." and they don't know anything at all. I often have very weird reactions to medicine where most people don't get any side effects, and the amount of gaslighting you receive from medical care workers sometimes is just undermining your instinct in trusting that you know something is actually wrong with how you're feeling and how your body is responding. It's really a problem on both side. It's being used to being in pain, but also being told continuously (when doctors have no clue what's wrong) that it's psychosomatic in some ways...
Yes! Being gaslit for weird reactions to meds - that’s me! At this point both my sister and I know it’s a distinct possibility when we have to take something new. It’s kind of like a terrible running joke in our family.
For example:
Oncologist: It’s very rare to be allergic to bisphosphonate medication
Me: Welp, after trying two different kinds and ending up with angioedema both times, my throat and tongue gradually swelling more and more, I’m pretty confident saying I am 🙄
Never clicked faster
Thank you for sharing what happened to you in this incident. I am a chronic pain sufferer and sometimes worry I may miss something serious. I appreciate being encouraged to check things out when something seems unusually wrong. I’m so glad you were helped!
Oh dear is all i can say
💜💜💜
I can so so so relate - but for me it was my gallbladder that was putting me into liver failure. We are so used to being told that the tests say we are fine, when we are in excruciating pain, and tired of complaining about it to doctors! I learned a lot from that experience and was truly scared that I had almost killed myself by being "stoic".
❤️❤️❤️❤️❤️❤️
Thank you Lauren!
@Lauren Lillian Haggerty, Hi Lauren did you get your arm looked at yet ? Hope it's okay !
Thanks for the reminder to take my antibiotics for my current kidney infection, which if my doctor hadn't put a bunch of repeats on my last one, I wouldn't have bothered with.. I could have literally made the identical video. I've had severe chronic pain from spina bifida followed up by 3 back surgeries (and many others), the 2nd of which did massive damage and put me in a wheelchair. You know you've lost all reason when you fall, and need many stitches to sew back together the whole underside of your toe, and were just wrapping it up and telling everyone "it'll heal if I just wrap it, no need to go to the ER". I totally understand, but so glad you trusted your gut and went in. Feel better soon.
Oh wow, You just summed up the frustration of chronic issues so well. Going to ER is a major step for me and one I almost never take. I've received treatment, but no epiphany moments yet. Glad you're on the mend.
A friend of mine recently stayed in the ICU for a week because of a kidney infection too. Stuff like that can really creep up on you! And the way doctors are so quick to write off pain as cramps or something else, it honestly isn’t surprising that these things happen. Glad you’re doing well!
Hi, I am taking your advice and going to a medical professional to get help with pain in my foot. You caused me to think about what is more important, my job or possibly my life. Thank you 😊.
Yes, I have a chronic disease, Crohn’s disease and I constantly have inflammation in my body. I was sick for years before I got diagnosed because I always thought I had a “nervy tummy” and used to get swollen joints “from working out at the gym” or “carrying my children too much”. When I was finally diagnosed it was very critical and my doctor and the hospital specialists had to persuade me I was very unwell. Still hang tough (because what is the alternative) but no longer let other people tell me how I feel and I let myself rest when I need to. My specialist said to me a couple of years back to stop saying I was fine because when he performed a colonoscopy and looked at my bowel, I clearly was not. That was another great moment for me as I got into medication that made a real difference. I so understand where you are coming from, there is no time to listen to every ache and pain but we must watch for changes so medical specialist can diagnose early and provide treatment. xx - thanks for sharing
I can totally relate. I have a high pain tolerance and when I have gone in to the doctor, they have been dismissive. I went to two doctors in four days, who dismissed me. I ended up going into the ER when things escalated, and less than 24 hours later (partially due to doctor failure), I was in a coma, on life support, with aspiration pneumonia, respiratory failure and full septic shock. I came out of it with colon cancer. I'm lucky to be alive. Glad you listened to your instincts and are okay. It's scary how quickly life can change.
I totally understand this ive lived with chronic pain for so long I finally had a dr listen to me today and I felt relief I did send you an insta dm a while ago. Its so hard trying to figure out what is normally pain and what isn't normal im so glad you're OK xx