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I constantly get “let’s give it another 6 weeks or months and see how you’re doing” between guesses at diagnoses. I’m just like “it’s been over a decade, but okay” 🙄

I love what you said about pots. Literally some days my heart rate will hit 180 and I won't even blackout, it's always when my heart rate just jumps to 120 or smth where all of a sudden I'm on the ground.

The medical establishment's insistence on performing my pain & illnesses for them to "prove" it to them really ticks me off. Most of the time it's the clueless ER docs who can be more useless than skin tags. It's enraging.

Great point around 9:20 about how people feel it’s taboo to bring up or discuss someone else’s illness, but the truth is nothing feels better than someone just understanding what you’re going through! Love this video!

When I was diagnosed with my neurological condition,the doctor literally told me to Google it+decide if I want brain surgery 😂 I was a minor with no internet access,money or support so I just agreed to brain surgery

I think the point about people feeling it’s taboo to bring up illness/disability explains why some of my friends seem uncomfortable when I talk about my illness.

I have had ER staff question me having EDS. Thankfully I have pictures on my phone of my genetic testing results from when I sent them to my parents that live across the country. Still it’s really insulting and frustrating when they interrogate me like that.

On the comment about not noticing when you're not in pain even though pain is your baseline, I have the same experience typically, and I think it is just because I dissociate from the pain to be able to numb out/tap out of my body's pain and push through life because I have to in order to manage to survive it and adapt to life as best as possible.

"When it suddenly stops hurting" I call that the good pops The bad pops dont hurt as much as the good pops cause relief If that makes any sense

I like the advice to look it up when a friend tells you they have something. This is second nature to me, I think because my dad was diagnosed with MS when I was a child, and the hospital so kindly gave me a book made for kids to help explain it. It's hard for me to imagine not wanting to know more about what a friend or family member is going through--it shows you care! Best wishes as you start grad school, Izzy! Don't push yourself too hard with KZfaq!

This video, really relatable. My sister when she used to see me shivering in 30°c weather in the early summer evenings or limping & needing my husband to carry me to her bathroom she always heard from her lil sis "yeah, I'm sorry, it's just my body, I'm sorry, I'm fine." 🤦🏽‍♀️🤷🏽‍♀️🤦🏽‍♀️Smh! I still apologize for my pain when I'm struggling to explain my mobility issues with the amount of pain I've always felt, to dr's.🤦🏽‍♀️ it changes levels and frequency but the location has been there mildly since birth. So it's hard to recognise because it really is apart of us. Pain has grown with us, thanks to the dr's dismissing it as "growing pains" 😩

Not only the wave of nausea and heat and like cold sweats… but also the instant “all of the saliva disappears from my mouth and I cannot swallow this bite that is in my mouth” that hits me, too! It is SO weird and horrible.

This is me just before a sesion with my physical therapis this week. "Uhm, I don't feel really well today. Wow, my balance sucks with this heat. I should tell the PT. 2 minutes later: PT: " How are you? Me: I'm fine I have to learn that "I'm fine" is the correct answer when you cross paths with your neighbour, it's not the correct answer to give to the professionals that are treating you.

OMG. I was laughing so hard at "you're not vibing, you're vibrating" that is so me. "oh two ribs just fully dislocated but I'm fine. Just give me a sec" or "oh the entire side of my rib cage is immobile. No worries I'm fine"

I always struggle between downplaying my pain and symptoms to not be making it all about me, and trying to up-play them so I'm taken seriously if that makes sense...

This video is so great for a lot of reasons, but an unexpected one is the way you demonstrated pacing and spoon awareness. The way you recognized the drop in energy and didn’t push yourself to keep going and going. But most of all, you were open and honest about your fatigue… That kind of thing is impactful to watch ❤ especially when the rest of the (able) world tells you to push through

I can really relate to the 'getting sent away with no information' one especially. I've been rushed to hospital 3 times in the last few months for collapsing, seizures and each time I was unconscious for over an hour and bedridden for a few days after. I also have chronic pain and struggled to walk after because of hip and knee dislocations. But each time it happened, I got sent home a few hours later, once my vitals were stable and told to drink, get some rest and come back if it happens again (which it did but I got told the same thing again). My latest one was extra scary as it happened in public and my mum was called and saw me in a bad state. Apparently I had a few seizures and was mostly unconscious for hours, it was by far the worst one. I've been terrified to leave the house ever since as I don't want it to happen again but I don't want anyone to worry so I just pretend that everything is fine. I just got told by my GP that the tests that I got a year and a half ago, confirmed that I definitely have POTS but I was never told and there wasn't any follow up so I'm now waiting for my next appointment. I also apparently qualified for hEDS but was told that there is nothing they can do so 'don't overdo it' was the best advice on that one. Sorry, that was really long but that's my story. I know so many of us go unnoticed and ignored for years but after almost 11 years of chronic pain, faints and so many other problems, I'm finally getting answers.😊

I think the downplaying and focusing on other small stuff is a coping mechanism for us because I feel like non chronic pain sufferers will never understand what it is to hurt ALL the time, all the time, so you have to vibe…like what else?

As an endo sister, I'm exhausted ALL the time, my body is attacking itself, so even during my nonpain days, I'm so tired I just can't life.

Omg I get the “heat wave” thing with nausea too!! And the back of my neck tingles and stuff. Thank goodness for zofran lol

Haha I had things I wanted to say but I can’t remember them because brain fog! These were all really relatable tho, even if I don’t have pots. Oh! I remembered! I basically always now go into a doctors appointment having done my own research and knowing what a diagnosis/treatment should be. And usually the doctor is like “yeah whatever you researched sounds fine, we’ll do that.” Or in the past I’ve asked for a new plan bc nothing I’m doing is working and I’ve had doctors tell me “no keep doing that thing that isn’t working, because I don’t believe you that it isn’t working.” So most of the time I know more about my conditions than the doctors, and I’m sure others find this relatable.

I love coming across videos like this. I was diagnosed with young onset parkinsons at the age of 32. 90% of people I tell that I have young onset don't believe me. They think i'm faking it. Three different people at jobs i've had (they were ALL nurses!!) did not believe me. One nurse made me show her my medication i am taking to "prove to her" that I have it. Another said I was faking it because when I reached for something, My hand was not shaking at the time...Yeah, because I had medication in my system. It is frustrating as HELL having to deal with this disease at such a young age and also having to deal with people accusing you of faking it..Because it is only an "old persons disease". Glad to know these people know more than my movement disorder specialist!

I went to the hospital last week because my heart rate went from 120, to 50 then up to 180 in 30 seconds. I’m on my way to being diagnosed with POTS (possibly also have hEDS but not confirmed yet). It was so scary but I’m glad it was finally caught! Good luck in school! I’m happy to watch your videos whenever you have time/energy to post.

Everything you said in this video reflects me 110%. It’s like we experience the same in regards to our behavior and attitude towards eds and pain. It’s nice boy to feel so alone in being young and chronically ill 💗

I've learned not to down play as much because my parents will think I'm fine if I don't outwardly express I'm not which means I don't get the help I need unless I speak up.

You nailed it on the nose when it comes to having to “ hide our pain “ or not talking about our Chronic conditions because we are given no choice but to, especially when you’re at work because you are asked “ are you sure you’re going to be able to do your job?” Constantly and it gets annoying! I have POTS, too even though I have cEDS and I have CCI , too. But I have felt like I was going to blackout before at work and it slammed me into the circuit box and another time into my housekeepers cart.

Congrats on starting grad school! I’m doing my PhD at the moment, so it’ll be great to “ know” someone else going through what I’m going through. And one of the best feelings for me was when one of my friends made a funny joke about my illness. It made me feel like she understood what I was going through and that she wasn’t going to shy away from the topic just because some people find it awkward. So ironically, her making a joke actually made me feel safe (but she’s one of my closest friends, it’s not like a random making an ableist joke about you, very different!). Thanks for the fun video, Izzy!

yes! me and my partner absolutely talked about not noticing your pain has gone away, kind of in relation to how i have low level consistent pain but i dont realise its there sometimes but its draining me anyway

Omg the random doctors that make you “prove” your pots dx!! I get the “poor mans tilt table” constantly and also for EDS “well can you touch your thumb to your arm?!” And I’m like “yeah but I’m not going to show you and hurt myself lol”

I love your videos! Thanks for toughing it out for us.

It feels great to have finally found a supportive few people who have heard my complicated story of the health challenges I face daily. Instead of testing me to make sure I have the symptoms of the list of conditions that I am diagnosed with they simply said "I believe you". Those 3 words are life changing comfort to me. I hope we all find people who can say them to us, who are willing to be part of our team. Blessings from South Eastern Australia, Dot

Doctor: “I think you might have EDS Type III, and very likely POTS…. ok, so that’s all we have time for, I’ll see you in 3 months” Me frantically googling what the hell EDS and POTS is and freaking out! Found your channel and you have helped me so much!! ❤️❤️

I want to deeply thank you for your videos. It has been confirmed I don't have EDS but instead have CFS/ME and very high possibility I have POTS (just waiting for insurance to let me get tested). Your videos have helped me so much throughout the past 2 years. I didn't even know what POTS really was until I saw your videos. Our symptoms may be different but there's also so much overlap that I never felt alone. Even when doctors kept dismissing me I knew by these videos and the lovely comment section that I was not alone and that there was hope.

I did the same with my gastroparesis dx. My Dr didn’t tell me anything except “here take Reglan up to 3 times per day”. I didn’t realize for years it caused me so many issues and that my food choices could make me feel worse.

I got diagnosed with AMPS today, and POTS you are a big impact in my life I love your vids and I watch you alot because the doctors never believe me!

Please do more of these videos I love them

Tiktok #2 was something I understand so much! I have chronic headaches/migraines but a few months ago my arm and joints started hurting, so I kept a pain diary for a while. Turns out I was having severe all-body pain and just not noticing it because my headaches were worse 😳. Now I'm going through the diagnosis process for fibromyalgia or something similar.

Im not sure why it is relieving but, watching another young sick and attractive female like myself ( lol ) talk about the realities of my current life, it made me feel much better. I'm glad your video was the first I watched today. Great change for the start up of my day. Thanks for taking the time to reach out even though I totally understand how exhausting even talking can be, much less putting the brain power into coordinating the video and structure of your content. I get tired just feeding my animals and taking meds so cheers to all of us lmao. Hugs, have an amazing day!

Ugh the amount of times I've had doctors literally say "I don't know what to tell you" or " I don't know how to help/advise you from here". Like ok, I have my diagnoses now, which is AWESOME... but even WITHOUT the diagnoses, are they seriously telling me they can't advise me how to proceed to look after my lymphoedema, my nausea, my chronic pain etc. I"m not expecting a miracle, but their LITERAL job is to help me help myself to maintain the best quality of life still left to me. Knowing what's wrong doesn't help at all if they tell me how delicate my poor body is - how close I am to having horrific problems like ulcers etc. then give me absolutely no help to look after myself!! 😥 Also, that "massive wave of nausea". Ugh so very relatable!

I have such an issue with my husband not giving a shit about my mental and physical health issues. And if I post about it, he gets mad and says I'm annoying or being negative by talking about it. I'm hurting so much that I can't tell anyone about what I'm going through. Not even him.

When I'm really bad, I blame other things...the weather, traffic, whatever, when all I'm doing is complaining about pain that I can't complain about.

Yeaaaaas! I love your reaction videos 🤗 I dont have tiktok, the ones ive seen are on reddit or KZfaq. Its nice to see how similar we are for how different we all are. Validation at its finest 💓

When I got my HSD diagnosis my doctor said there was no treatment and that was it. I left feeling rather let down and abandoned. It wasn’t like I suddenly felt better than before being diagnosed.

"Even if they do know you just pretend it isn't happening" THIS I'm so ashamed of how badly I'm hurting and how I react, I feel like a HUGE burden and like nobody wants to deal with me so I suck it up and pretend I'm fine. And so now everybody pretty much thinks I'm fine. So I'm afraid to talk about it at all. It's such a mess. Thank you for talking about this.

I had a doctor recommend me for an unnecessary vein ablation in my legs when I told her I had POTS ... she didn't even know what it was an looked it up in front of me, got a quick google summary and then tried to explain this illness that i'd researched extensively because I related and then matched a lot of the symptoms. I don't faint, but vertigo is ALWAYS extreme from sitting to standing, just sitting down in a chair I can feel my heart pounding to keep my blood from leaving my head, and I have to keep my legs up all the time, lay down 24/7, or wear compression socks if I have to walk around at all. I eat salt out of my palm all day now because it's the only way I can get my BP up. Nothing else helps. My heart rate jumped to 120bpm the other day in the doctor's office while I was getting my pulse and BP taken, just from me talking. The nurse looked me like "... um...?" My current cardio was SO PISSED when he found out I'd been referred for vein ablation by another cardio when I don't have spider veins or any history of enlarged veins. My issue is that my heart isn't strong enough to keep my BP up, so the vein ablation was literally pointless and did NOTHING for my symptoms. current cardio did my BP while I was standing and while laying down after I described my symptoms, and that was that, shows over, diagnosed with POTS and then given recommendations for get my BP up and proper compression socks. Currently he's considering adding a medication to artificially raise my BP because the compression socks just aren't doing enough day-to-day and cardio exercise isn't an option because of other things.

Just found this channel. After a long process of being passed from doctor to doctor, physiotherapist to physiotherapist and back to a doctor, I have finally got a diagnosis of JHS which I have suspected since I was a child. Currently waiting for an MRI on my skin and pelvis to see what is going on there and going to also be checked for scoliosis as they believe I may have a small case but would like to confirm through the scan. Doctors haven't been much help, but thankfully I have an aunt who has been supportive and gives great advice because she unfortunately has MS

I was diagnosed with IST, neurocardiogenic syncope and oesophageal dystonia on the same day, given no information about it and was prescribed meds. I was like oh okay sure. Looked into them and I’m like OH. Thankfully now I have a plan for these few things and can deal with them most of the time

one of the reasons my pots wasn't diagnosed for years despite the tilt test showing that hi, yes, I do have pots (both my blood pressure and heart rate are affected when I have syncopes. I literally went into asystole, but everything was fine according to that cardiologist), is because my base heart rate is incredibly slow. no one thinks that 80 or 90 bpms is tachycardia. except, it kind of is when my regular heart rate is at 40 bmp. thankfully one of my current doctors is a specialist in dysautonomia and she knows better than those doctors I had years ago who wouldn't listen to me or believe me and just said it was probably anxiety.

One really frustrating experience i had with my GI doctor recently was him saying I had "functional dyspepsia" without actually explaining it and then immediately prescribing me cyproheptadine and closing up the appointment without really allowing us a chance to say anything. When I looked it up later, i realized he had basically told me i had gastroparesis, but didn't schedule me for a gastric emptying test or even mention the possibility of gastroparesis. I figure it's probably because i don't vomit(which is more because I hate puking than because I don't 'need' to), even though only a small portion of people with GP actually experience cyclic vomiting. Just really frustrating, and my mom and i are talking about possibly switching doctors if the next appointment doesn't resolve anything.

I have found physical therapy, acupuncture and sleep, when it is attainable to be helpful. But there is nothing to remove my pain. As I am nearing 6 decades it is getting worse. When something doesn't hurt I don't necessarily notice either because something else hurts to make up for it. My brain always goes to the worst pain at the moment. However, when my hip stopped hurting for almost 24 hours since 1996 I did notice that and I felt bliss.

I am so glad I found your channel. At 56 finally have diagnosis of EDS was told look up info on EDS UK as I read I was like GI and Pots symptoms are what I have been banging on about for years. I have to decide if I have a day I eat or day I drink as full feeling and nausea so bad however on a previous vlog showing you following a shower and how short of breath you were you included a picture of your feet and described need to sit or preferably lay down. My husband is OMG that is exactly what happens to you. I would not wish this on anyone but glad to actually see I am not on my own, it is not in my head. I also have Oestogenis Imperfecta, Adrenal Insufficiency, Fybromyalgia, Oesteoarthritis Hypothyroidism, Hamecrania Continua, Migraines Brittle Asthma and Malabsorbtion issues but now understanding more about EDS I can see how so much is linked. I am at best when laying down but as soon as standing it is horrendous and pass-out and now wheelchair dependent when out.. Not that anywhere to go with Covid on loose. TQ for presenting complex condition in easy to understand way.

I have amnesia once I get to the doctor even when I write notes down. And if they ask about symptoms I don't have written down I'm like "No... I don't have GI issues" forgetting I woke up the night before with choking reflux and nausea.

I had to stop my Plaquenil for my arthritis because an antibiotic I'm on reacts with it. I then noticed how well it actually was working on my pain, because of how it came back about a week after quitting it. It didn't feel like it was doing anything until I quit taking it, I guess the improvement was so gradual. But most of the time, I do not notice my discomfort until it is gone for a bit, because I have to work and do things anyway, I really force myself through it. Today at the doctor, the nurse asked me where I am having pain, and I just said a stomach ache of about a 2. I totally forgot the headache that had been stabbing my temple every morning for two weeks. And this might sound morbid, well it is. I have had some things very wrong with my health for about the last 15-20 years. Tests rule out more things than they actually find. This summer I was diagnosed with a terminal lung disease, it actually shows up on CT scans, and my lung biopsy was positive, so like no denying that this illness is real! A part of me was actually happy that maybe now I will actually be validated, because I have an illness that shows up on tests. But it's terminal, so of course that is devastating. People act like it's great when a test come back "normal", but for me, it just means they didn't do the right test, because I know something is wrong. Doctors gaslighting, not investigating further, saying my illnesses are in my head or just stress and anxiety has been the norm for so long. It is sad that it takes a terminal disease to finally be taken seriously, and still even not so much, because the pandemic is more on doctor's minds than anything else. Hint to doctors and politicians: Other illnesses besides Covid are still happening 👀

I keep zofram on me at all times for any kind of nausea. I get nauseated if I eat too much or too fast. I get nauseated if my back sublaxed, I get nauseated if I get bloated.

I actually found out my diagnosis of MECFS and fibromyalgia from a written referral to a physiotherapist. My doctor never said a word about it, let alone discuss any strategy to keep going 🤦🏻‍♀️

It can feelso lonely holding in or over explaining hiding or fearing vulnerability its brought me exploring the online world more...

Omg it's so frustrating when doctors don't have a plan! Like I was left with untreated type 2 diabetes for a year and it was horrible because the doctor wanted to "wait and see what happens" while I was clearly suffering from diabetes symptoms. Now I'm finally getting treatment and doing well though.

100% makes sense about the pain you were describing. I’ve been in a neck pain flare all week (which is great - not really - because it’s finals week) and it makes all the other days seem like it’s no pain when it’s still a 3-4, or what I would imagine a 3-4 would be. I hate rating pain. And my leg burning pain hasn’t been as noticeable since my neck is taking the cake in pain this week. But anyway. Yes, I 100% get it and I love when you talk about it because it’s so relatable.

When I got a MALS diagnosis (randomly from a POTS specialist/diagnostician) after having so many stomach issues and getting like 5 other diagnosis at the same time for various things, I literally was given zero information about any of them and what treatments there were. Didn’t know how serious MALS was until I saw others talking about it online 😅 I thought it was a random throw away diagnosis that didn’t matter 😂💀 but lol no it’s my main stomach dx other than ibs (which is actually my throw away dx)

Every med review I have, I have to explain POTS to the doctor or nurse because they see ivabradine and thing 'young healthy looking woman on angina meds?!'. And last time, the doctor asked me some questions like she was checking the criteria with me and I was thinking 'I was diagnosed in 2016, nothing's changed so stop questioning me!'

When I notice a different pain instead of the usual it is usually because the noisy one is just worse than the constant, usual spots.

Izzy, Can you do a video on treatments we should be looking into or signs that we need to seek treatment instead of tough it out? I have a hard time getting myself to believe I need to see a doctor. Or also it would help when a doctor is too dissmissive? Thank you so much for all of your videos!

I tend to tear up and cry a little when I’m in less pain. So in the ER and I need some help because I’ve been dealing with level 8-9 pain for like a week now with no breaks and they jab me with some morphine and a muscle relaxer. I only start to cry a few minutes later. I cry because I feel some relief and I’m just so thankful I tear up 🤷🏻‍♀️. It freaks the doctor and nurses out. They think it would be the opposite I’d be crying in pain but really I cry when I’m “without.”

“I don’t really have anything else for you. Why don’t you come back in six months.” And that was from the best doctor I’d found. Who correctly diagnosed me, thankfully. But… uh… what? Now, 9 months later, I finally got in to see a specialist who has me seeing 3 more specialists. When I could have done this a year ago. Oh, but no. Instead I had to put myself through KZfaq medical school & figure everything out on my own. Because that first doc didn’t / couldn’t / wouldn’t make a plan for me. What?

i also fully agree with the not noticing when it doesn’t hurt. like i’ll start not limping or complaining as much and my parents are like “she’s healed!” like uh nope

I got diagnosed with EDS seven years ago and I’m still asking for a plan. I am now 44 years old and it’s disseminated into multiple other additional diagnoses and they still have no idea what to do and I am at the end of my rope.

i’ve been struggling with heart rate and chronic pain issues for a while now but i haven’t been able to make it to a doctor and that’s taking a toll but there isn’t much i can do about it

Chronic pain is such a weird thing once you get used to it. I have to go to the chiropractor weekly. If I miss one week I feel like I’ve been hit by a train. At the start of 2020 My insurance made me go to a new chiropractor and I had to wait a week in between my last appointment with my old chiro and my new one. They knew each other and all of my info was transferred over. Most of my scans would be in the red or the black (very bad) but I’m apparently really good at not showing that I’m in pain? I get to my first appointment with my new chiro and exchange the typical “how are you?” “Feeling pretty good today” and he starts adjusting me and stops and says holy shit when was your last adjustment? I say two weeks ago. And he said “well if this is your back on a good day I can’t imagine WHAT it would look like on a bad one!” Every time I go in after a week off he tells me to stop doing backflips (his way of saying take it easy) but jokes on him I’m always taking it easy. And it’s always nice seeing him because he actually takes time to ask questions about my POTs and see how I’m feeling that day POTs wise. And every time I get up from the table he reminds me to get up slowly. A very stark contrast from an ex friend who used to talk down to me and tell me I complain too much or talk to much about medical stuff in general. Long story short she was extremely ableist and wanted to end our friendship because I “wouldn’t be able to keep up with her because of my disability” big yikes 😬

I've been using a cane for a month now for my leg pain, and I'm finally going to the doctor in 3 days! But I'm scared that they're going to just say that it's growing pains and shove me off to never figuring out what it is. (Edit, ummm... my Lyme disease cause something close to chronic fatigue syndrome. Also, I have crutches now!)

You get a heat wave at the same time? Me too, I always connected the heat wave to a hot flash but it didn’t make sense because I was literally just nauseated or in pain.

I have crohnes disease I was diagnosed in 2018 and then in 2020 my 13 year old daughter got diagnosed with junior arthritis.

Last week, i was in the hospital for my endometriosis, and when i mentioned to the dr that i had POTS she said, "they diagnose everyone with that these days"

Chronic illness with pain and a sensory processing disorder make for fun doctors appointments (ironic mode on). I never get enough time to translate my internal feeling towards being touch averse and the doctor palpating and moving me or my joints around. Jumping from one to the other in hypersonic speed for me and when my responses come delayed the doc accuses me of making things up. I get the "we wait a while and see, if things go away" "we deal with it, when it does not go away"and when I come again and again with my complaint, they pretend it is the first time, I tell them about this particular problem. It is so tiring.

4:45 yes!!!! oh my gosh i had that happen all the time when i was still getting diagnosed with EDS and POTS

Gastroparesis plan for me: there are these meds, but they are very risky and probably don't help, OH and the meds can cause an uncurable muscle movement disorder. Well that's it, that's the plan...l

Watching this while trying to ignore a flare up that just started

I’ve never related to video so much I’ve had undiagnosed problems for years until they found my pots and now im scheduled to see the geneticist for Eds for hypermobilty but I never get any good info for my chronic pain, horrible fatigue, or any of my many problems.

I love your videos. They make my day, especially when I have such a bad day. Good luck with your first semester of grad school!!!

Me trying to be inspired by how you guys manage it so welk

I went to a specialist and got diagnosed essentially as having "some sort of hypermobility" and to do my own research. Upon doing my own research I meet all the criteria for hEDS and she was the exact person who would've been able to diagnose me, but she didn't. To clarify, the pediatrician was significantly more helpful because she worked with me and got me diagnosed with something else I had (lyme disease) and got me set up to figure out the other problems (the theory that me, her, and my mom all had was that there were multiple different problems at once) So were working towards a rheumatoid arthritis diagnosis as well as an official hEDS diagnosis. We're getting through the diagnoses little by little, but its absurd how long this process takes and its absurd how unhelpful the actual specialists that you were told to go to are

Don't stress if you can't post every week that you'd like to! Living with chronic illness by itself is exhausting, but factoring in all the stress of a world that for the most part doesn't get us because unfortunately a lot of folks see the world through the capitalist lense we're taught in school (in the US, from my experience, anyway, not sure about elsewhere). So if we don't 'contribute' to society the way we're expected to, we're lazy or whatever. But thank you for sharing info about your experiences and I'm going to be looking into POTS more because...reasons. I hope you have a good day!

Hi I found this channel because I'm getting checked for pots soon do they also check for eds when they're checking for pots? Or do you need to ask for them to check?

I was wondering what your opinion is about if POTS and OH can occur at the same time. A few months ago I went to the doctor because I thought I have POTS. I did a lot of tests at home and every time I stood up, my heart rate would go from like 55 to 140. Luckily my doctor took is seriously and said I should go to the neurologist. I did a test at the hospital (not the tilt table test, because the neurologist said it was better if I had to stand up myself..?) and when I got the results the neurologist said: 'you don't have POTS but OH, because your blood pressure dropped to 60/40 when you stood up. And one of the criteria for POTS is that your blood pressure stays the same.' But I was so confused, because during the test, my heart rate increased by 43. So that means I have criteria related to POTS, but obviously OH too. I read on the internet that some doctors say that POTS and OH can occur at one person, and some say it can't. Anyway, I was just curious what you think about this... Also: the neurologist wasn't very understanding unfortunately.. She just sent me away with the advice: drink lots of water, eat lots of salt and buy compression socks... I've been trying that for four months now, but there isn't any improvement. It's only getting worse tbh. And so I've been reading on the internet about medication that stimulates the constriction of the blood vessels and that it can help with OH. But the neurologist didn't mention any medication. She only said that I can't take medication that lowers your heart rate (often given for POTS) because the increase in my heart rate prevents me from passing out due to the extremely low blood pressure.. Do you have any experience with the medication I mentioned earlier (for the constriction of blood vessels)? Anyway, sorry for this long story hahaha

I very much relate to the not noticing when a symptom has gone away. Normally it's not until it comes back and I'll think, oh that's right, I haven't had that for a couple of days. Either that, or thinking something is wrong because a symptom has gone away haha. When I started on meds, the whole first day I had this weird feeling in my chest and was considering going to hospital cause I didn't know what was going on. I eventually figured out that I wasn't getting heart palpitations and that was so abnormal for me that it felt uncomfortable in my chest. As far as downplaying my symptoms, it can lead to some funny statements. When I am not looking the best and my coworkers ask "is everything ok?" And I'll reply "oh yeah, it's just my heart, nothing major" or "it's all good, I'm just having trouble breathing". Apparently those statements aren't as reassuring as I intended them to be.

When was diagnosed with arthritis (16 years ago) i felt so helpless and alone. You go see your doctor and you still dont know anything. I didnt know what to expect, i didnt know about my medication, i didnt know about splints or other things that could help me and i certainly didnt know hwo mean the world can be to people with illnesses you cant see.

I had a positive tilt table test and the nurse was like it was positive you passed out so drink a lot of Gatorade and carry around cheese because cheese has a lot of salt. They were going to send in a cardiologist but said it was going to take too long so they just basically said it was positive and sent me on my way with no real helpful info just pumped me with saline and sent me home still feeling sick and dizzy.

literally i had surgery 2 months ago, was meant to be day surgery and i was first in at 8am, was in recovery until 8pm and was only discharged as they couldnt find a urology bed for me but that GA was the worst ive ever had and ive had 31! I went home that day with zero information thats including how to get my SPC supplies! my first appt afterwards was meant to be on the 21st august but it got cancelled and its now not until next tuesday?!? Ive had 3 seets of antibiotics already for bladder infections which i kinda knew would happen but thank god my mums a nurse and has been able to get catheter supplies for me where she works but its been a shit show, ive only left home 5 times since surgery and that was the first week of august….

no but the downplaying is too real 😭 my arms have been paralyzing recently and i'm always like "it's fine though don't even worry" while im trying to literally just move my arms HDHDJFH

Is great when they don’t know what you have and start throwing you meds to see if they hit the jackpot

I have PsA, gastroparesis, and now I have been diagnosed with Hypermobile Joint Syndrome. My pain doc says that there is now way I could have Heds, because my skin is not loose although I have all the other criteria for Heds.

3:18 omg so me!!! Today I was literally like this, I didn't sleep because of my neighbors and I was overloaded (autistic thing, it sucks!!) and my heart rate was at 140 and I couldn't even hold my breakfast and I was like "I'm fine, mom, thanks" but I definitely was not!! But since today is father's day here I really wanted to be awake for him as he's not feeling well this past weeks, and I did it, I stayed awake for about 4 hours feeling like shit and hiding it from him. He knew something was off with me, but didn't notice how bad it was (as almost everyday something is bothering me), and it's an ability we shouldn't need to have, but we do! (Ps: I have no diagnosis other than asd, so I can't even say "oh, today it's this" or "yeah, it's just a flare up" because we don't know the cause of anything)

This is so embarrassing I was at the grocery store a few months ago and had a pots episode and fainted and a stranger called 911 and I had to explain to the emts I had POTS and I was fine and I wanted to finish shopping. I now refuse to go to the grocery store alone

the pots thing is so real, like some days ill be walking around with a heartrate in the 180s with no problems and other days itll only be like 100-120 and i feel like theres a racehorse in my chest😭 theres truely no rhyme nor reason to pots

The 2nd one is soooo true sadly. And only chronic pain warriors know why or how that is! It probably don't make sense to those without daily chronic pain!

how would you approach, having tiredness fatigue feeling an heavy head and constipation from time to time? the most obnoxious syntom is fatigue, but these syntoms seem too general and vague and i don't really know what to search, my doctor doesn't either, should i just wait for these syntoms to get worse or should i try doing general tests like intollerance? or something else? help

Omg congrats on grad school!!

Had a "doctor" that I was referred to, by the way, look at my previous mri (which clearly showed the problem), look at a recent mri with the radiologist's notes (which clearly stated "DEGENERATIVE") and had the absolute f***ing gall to tell me he didn't see anything wrong with me and that the radiologist didn't know what they were talking about. 😵WTF?!

* Do you have a video where you explain step by step what symptoms you went through and what you did to convince your doctors that you thought you had certain medical conditions plus what did you do to get your doctor to speed up the process to get the tests so you could start the treatments that you needed to help you with your medical conditions/disabilities and to get your diagnoses?

YOU CAN HEAL YOURSELF! THE MIND IS THE BEST HEALER IN THE WORLD!