I’m so sick of my face // Temporomandibular Disorder [CC]
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I really like when doctors are like "well, you say you can't eat/breathe/sleep, i can schedule you for a test next month and then the month after we'll see about treatment :)" and it's like thank you so much doc i can totally go two months without eating/breathing/sleeping have a nice day
Its honestly ridiculous
I feel that. Sorry, can't do anything about it, let's meet in three months and see if you still breathe. In the meantime, what about seeing someone 300 kilometres away - it isn't even their fault, to be honest, but it is a hard pill to swallow.
@@josymarie4327 yeah i'm more mad at the system that lets disabled people suffer so much harm. The docs themselves dont have much control over the rules they follow, and obviously testing is usually a good idea just in case. But like, if i come in unable to breathe for the past week, i came in because i'm scared i wont make it to next tuesday, you know? I know its not bad enough for ER (and that ER would only give a temporary fix) but it should be bad enough for a doctor to at least try for same-week testing lmfao
Reminds me of the time I went to a random dentist because I was in horrible pain from a broken wisdom tooth that got infected. The dentist was so dismissive and I spent more time with the lady from billing trying to sell me extra procedures. They didn't even give me proper pain management because the regular dentist didn't even have the necessary license to prescribe pain killers. I was told "oh but don't worry, the surgeon has the proper license and he will be back next month. We can schedule you." I ended up in the ER that night because the pain was excruciating. The next morning I went to my regular dentist who is a bit of a commute away but totally worth it. In a matter of minutes he easily extracted the wisdom tooth. Surprise, surprise I didn't need expensive surgery. 😐
It is the same in Sweden, from my experience
I stopped chewing gum years ago and one of the reasons was the hypermobility of my jaw... When kissing people becomes a safety hazard, it makes you change your crazy gum-chewing ways
Oh yeah big relate :( I miss chewing gum so much
My GP basically told me that “some days are hard” when I asked her for a parking pass- so I wouldn’t have to walk from the back of parking lots to campus to class upstairs. She then told me to just talk to my pain specialist- that I’ve seen once.
I feel your frustration and I’m so glad you were able to get the first injection and hopefully you can get the second injection before baby comes!
The NHS dos and don’ts are helpful for folks like me, who have minor TMJD - my jaw pops and clicks, sometimes I have a little pain or discomfort, I often need to stretch my jaw, but it’s never dislocated, I’m never in extreme pain, I never have problems eating or opening/closing my mouth, etc. I bite my nails and clench my teeth a lot, and these are likely the causes of my TMJD. TMJD is such a range of experience and it’s silly and unhelpful to treat my issues in the same way as yours. Sending good thoughts and good luck!
Jessica I've just discovered you guys..I live day to day with pain. Very different to you but I love you attitude..so u gave me a pop of hope that things will improve even if its just attitude xx
Thank you SO much for making this video! I have EDS and TMD. I get that same horrifying pain in front of my ears and have clenched/ground my teeth since I was at least 3yrs old due to severe abuse and my face is crooked as well as a result. I also have a giant overbite and migraines from a million different things all day every day. Weirdly enough, chewing gum is one of the few things that relieves my pain when it goes out. Maybe the chewing motion distracts my brain from the pain? I have no idea but that's my gum love story, haha
Fun fact about the gum chewing. Animals get relaxed when eating, so chewing gum is enjoyable for most people. We (as animals in general) are just wired this way!
Oh Jessica. Gum is a must for me. You see, between the heart failure, high blood pressure, fibromyalgia, degenerative joint disorder, osteoarthritis, and apnea, I get to not only experience pain that usually prevents me from even walking but I also get a very dry mouth as a side effect of the medication I have to take. Of course, dry mouth is only one of the medication side effects I get to experience. I take three medications specifically to treat the side effects caused by some/all of the other twelve. Lucky for me, I discovered that chewing gum keeps my mouth moist enough to stop my lips from sticking to my teeth so I don't havetotakeyet another pill forthat. I tried just sipping on drinks all day, but when you have to take diuretics AND your urethra sustained damage from the radiation treatment for the very aggressive cancer PLUS you're unsteady due to the stroke that occurred shortly after the pacemaker was installed, well consuming liquids can be a bit of a problem for you very quickly. I don't mind the incontinence so much, since there's not a damn thing I can do about it anyway, but having leaks several times a day gets so expensive with the added laundry bills. Fortunately for me, most of these ailments have only occurred in the last 5 years. And the fibromyalgia and degenerative joint disorder had already disabled me so I didn't have to deal with all of that cancer, heart failure, pacemaker and defibrillator, and stroke while also trying to figure out how to survive on an income below the poverty level because I had already spent the prior 5 years doing that. I can't wait to see what the next 5 years bring. 🙄🥴🤯
"I kicked myself in the face :)))" I'm so sorry I laughed when you said that
My stomach gets upset a lot. And chewing gum helps me with that! Your body thinks that you're eating since your chewing so much so it starts producing more of the things you need to propperly digest food. It helps settle my stomach.
I dont have EDS but I have my own Jaw Issues and I can very vividly relate to the pain 😖 I hope you get more botox soon
I also have EDS and I hate when my jaw hurts. Mine isn't always a problem compared to other things so sometimes I forget to be careful and I will yawn to wide or chew gum or sleep wierd and then terribl things happen mostly popping and pain.
As far as the baby thing. Life does go on. I had my second last summer and was diagnosed with eds in December and thankfully for my husband and family support I have been able to make it to lots of appointments and get things figured out.
my gum chewing story is that i have adhd! for me personally, to focus, i need to be doing some sort of movement with my body. usually this means i’m moving my hands via drawings or tapping, etc, but when my hands are taken up by an activity i find it easiest to chew gum! it feels nice and it helps me focus.
when you relate to way too many of the symptoms of the mandibular thing
Well, okay, never been asked before but... I chew gum all the time as a form of self-stimulatory behaviour, which helps manage my autism, anxiety, PTSD etc. If I don't have anything to chew, I find myself comfort-eating or grinding my teeth. It's like I have nervous energy that just needs to go somewhere, doesn't really matter where. Also dopamine.
About the gum thing I have a really bad oral fixation so I just want to chew constantly. Whether it's the inside of my cheek, my tongue, food, gum, my shirt, I constantly want to chew. When it was really bad I went through like two packs of Hubba Bubba a day. Also I've acquired the skill to be able to top gum 10 times in a row and annoy everyone around me.
It's so hard to get a diagnosis I have chronic pain its just taking forever to see specialist so I'm stuck in a sick loop of pain till I get proper treatment
Ok but I was wondering if this could help me and I was so scared about getting botox making it worst!
my jaw also hurts but i dont know why
when you said "if your jaw hurts, my jaw..."
Immediately came to my head my parents saying "my jaw hurts more, yours doesn't hurt, you're young and doesn't do anything, now shut up, I'm the one who should be complaining" (yes, they also say this to the things they very clearly don't suffer more than I do)
But then you said "my jaw hurts too and I understand your pain"
I felt the shock.
"Oh my God, is this how normal people speak?"
I'm so sorry you've dealt with that sort of gaslighting and narcissism from people who should be safe.
Jessica you do not have to be uplifting all the time it is not your job. Thank you for being honest. I personally think your younger self would be proud that your being honest.
THISSSSS
Yes
People pleasing is common in chronic pain. I have a hard time turning it off. People see my smile and think I must feel great and better. No I just don't want to live my life more miserably (by losing beneficial positive social experiences) while feeling miserable. It's hard to find a balance.
@@Allison_Leigh So true, well said, ALB.
amen to that
NHS website:
What to do when you break your leg
- Stop walking
- Don't run
- Sit down
- Don't wear skinny jeans
- ✨Relax✨
Good luck
[cries in public healthcare]
Same as American healthcare except you’re charged for the advice and then advised to get a $600 X-ray (it was my hip, but still) 😂
"no amount of loving myself will solve the problem" THIS
YES! Why do people refuse to effing get this?!
THIS IS GOLD
This! I don't hate my bloated tummy because of looks (though I do because it makes me look pregnant and that makes for unwanted attention), but because it bloody hurts to be that bloated! And it means my IBS/Endometriosis is acting up and again, it bloody hurts!
I'm not happy with my body because it let's me down daily and that's ok. This idea that we have to love ourselves and our bodies is ableist and ignores that some people's bodies malfunction and cause pain. I'm never going to love my body totally because there's a lot wrong with it and it makes my life very hard.
Being disabled has so much stigma as well. My body has led to people seeing less of me and bullying me because I don't meet society's standards of a productive human. It's such a complex topic and just blindly telling disabled and chronically ill folks ignores the struggles we face and doesn't actually help combat ableism and the healthcare needs we struggle to get
I was recently diagnosed with diabetes, and I really struggle with this. I worked SO HARD to love my body, and then I was told that wasn't good enough.
@@katerrinah5442 just want to say thank you for writing this. I see a lot of my feels reflected in what you wrote and that did offer some relief to my spirit. 💛
IMPORTANT INFORMATION: I've had a baby, I have chronic pain and am disabled, and I have to say I definitely have still done things since having a baby. I actually have put more effort than ever into my self care. Because yes, everything gets more complicated with a baby but also you start realizing how important caring for yourself is. There's this little addition to the family that loves you unconditionally and would THEY want you to be in pain? Absolutely not. Your life will NOT end when the baby arrives, in fact the baby can be more motivation to do what you need to do to be comfortable. (Comfortable is relative, but you know what I mean)
I've had a lot of able-bodied people say to me "SSHHDHDAHHJASKANCA YOUR LIFE CHANGES SO MUCH WITH A BABY" and the reality for me is that I've been living with a disability for a long time and a beautiful loving baby is a lot easier to live with.
Thank you for this. I’m due in 5 weeks with my first child & I’m getting so sick of hearing people say those kinds of things.
This is what I came here to say. I have 4 children and while they do change your life, it is in the best way.
That's so sweet!! I've never understood people's weird obsession with telling everyone how terrible and hard it is to live with babies. They've given me more love and affection than anyone I've ever known! lol
Yes! Also, people forget babies grow up so it's not like you're stuck taking care of them forever. My kids are 10 and 7 now and they are amazing. I also realized that they are kind of becoming my best friends too lol.
I really wish medical websites would just stop adding things like "try to relax" or "eliminate stressors" because, like...I have an anxiety disorder? There's only so much I can do to "eliminate stressors" and "relaxing" has literally never been something I can easily do. I wish they would just assume that if you're having a bad enough time to google the condition that they wouldn't put the super basic, incredibly useless parts in there. I hope you eventually get your botox Jessica, at least one of us should get some TMJ relief.
‘You’ve got no reason to be stressed because you can’t do anything about it now, it’s all going to turn out fine. Just stop worrying’. Thanks parents and strangers and others, thank you. I am now cured of my anxiety disorder and all of the other problems I experience due to stress, like chronic back pain. Who knew it would be so easy...
Exactly! Also, modern life is stressful and many of us deal with unavoidable stressors like jobs and chronic illnesses, which like...yeah it would be great to eliminate those, but I can't soo 😑
My favourite one is my GP telling me that "X and Y medication can be addictive so we can't give you too much." I really want to start replying with "Lady, you know what else is also additive? Having self-esteem from being able to function in the world any percentage of the time!".
Relaxing is also not helpful to brains in survival mode, which is what anxiety does to lots of people. A friends therapist said "Imagine that your brain equates stress with seeing a sabretooth tiger, relaxing is the LAST thing it will do". Sometimes working out the adrenaline is much easier, I'm lucky to be able to excercise but there are lots of ways to relieve stress.
@@KatieM786 oh i recently got “you’re young, we don’t want you on pain medication forever” HAH i’m going and don’t want me in pain forever young this is the hand i was dealt (EDS), it’s genetic and not going anywhere, the least you can do is give me something that helps like 20%.
Jessica I had to say a huge thank you to you. I'm getting diagnosed with EDS next month (there's basically no doubts) and the only reason that is possible is because I identified the symptoms super early on, only thanks to your videos on the matter. This is absolutely incredible and I can't express how grateful I am for your videos that made my lesbian, autistic and disabled heart feel seen, understood and lately: safe.
As someone with EDS who also happens to be extremely allergic to Botox injections, I am sending you gentle hugs and all my sympathy. ❤
Flaming Nora, that must have been an awful experience finding that out! I hope you are ok from the reaction now? I never knew allergies to Botox were a thing, thank you so much for sharing 🙂💜
@@KatieM786
People can have an allergy to literally anything, there's people that are allergic to the sun.
You'd be super surprised at things people have been/are allergic to.
Most people just know about peanut butter or bees haha
But it can be literally anyyyything
Also different levels, some people it will get worse with each time, so first bee sting is like a regular sting, hurts, second, more of a rash, but third, they have to get an epi shot or they'll die. Or, it can be deathly from the first time. Or its mild and you just get rashes, maybe abit swollen.
It depends on who you are, how serve/mild, it will be
@@tillyrose2632 thank you so much for letting me know that it can get worse over time or I would've risked an anaphylactic reaction that I didn't realise could be a possibility since I've never had a severe reaction before!
@@minksrule2196
You're more then welcome!
Everyone with allergys that has only experienced a reaction once, should definitely be prepared and aware that can happen!
This is what happened for my brother, his first bee sting he rashed up, but mild, the next time was alot worse, the rashes stayed for nearly a day and was super painful, but the third time we had to take him to hospital, he nearly died, he needed an adrenaline shot. Now he's suppose to travel with an epi pen at all times (which is an Epinephrine autoinjector)
So whatever your allergy is, be prepared in case that does happen! I hope you do only have a mild one, for your sake
💜
@@tillyrose2632 yes !!! my bee and wasp allergies get worse every time i get stung- as a kid, i had a completely normal reaction, then i started getting welts that lasted too long and were too big, and the last time i got stung the welt was the side of my entire thigh and lasted a little over two weeks 😬 thank you MCAS!
i really needed the reminder that you can live a happy life and be disabled. things are pretty bleak for me rn and i’ve really lost sight of that. much love to all the other spoonies.
Spoonie solidarity 🥄❤️
💗
Hugs
It really is true. I know how awful it can feel though.
I like to think about it as a wave- things will get better… and then worse and better again and so on… such is the way of the world. Their isn’t a final ‘better’ but the whole wave can be going in a positive direction, and the good parts can be worth enduring the bad.
For me I know I’d go through it all for another day with my pup 🐶 he’s my thing that I can ground on- like Jessica with her hair- he’s my constant.
I totally believe that if you’re feeling awful, it means there’s something to want or to miss or to love that makes whatever is happening (the Sisyphus stone) light enough to keep rolling. Because while it’s going to keep going, when you have the good, the joy and the love, it’s worth the whole world.
I hope things improve for you.
Sending good vibes to you. 💕
Your intro where you were like I may cry but its only because I’m in massive amounts of pain but don’t worry that’s just how my life is, was the most relatable thing anyone has said to me all week
Same! Have really said that to someone in recent history...don’t mind the tears-it just hurts a lot!
I had this exact conversation with my mum the other day. I rarely cry in front of people but all the pain, insomnia, jaw subluxations, M.E., Fibro etc etc etc just got to me where id had enough. I remember saying don't think I'm feeling sorry for myself, I just hurt so much the pain is expressing itself with weeping.
I agree, so relatable! Sometimes I feel like I just want to burst into tears, the pain is so severe. Hearing Jessica say that reminded me that I am not alone.
I literally said this to my mum this afternoon 😂 “I may cry but it’s only because of pain so don’t panic as that’s life (big sigh with gritted smile)”.
I think I’m going to start using it more often considering the chronic CRPS pain, TMJ, random dislocations, insomnia plus more and THEN the mental health stuff 😊 smile through the pain 💕
spoonies unite! 🌷🌷🌷🌷
Now I want a "Bodies- They be Weird Sometimes" postcard.
And shirt
Would 100% buy that
@@CamillaZahn I’d buy that!
Sweet Jessica I wish you were not in pain, your face brings me such joy. Sending love and healing.
I second this
I third this x
I have Bell’s palsy and was told by my doctor to chew sugar free gum for 10min daily to help get the muscles in my jaw back to normal after an episode. Also, it helps me to regulate the pressure in my ears when I drive into the mountains. Lots of love from Virginia.
Eeee a fellow Virginian! Cool to find you here :)
Me too! I live in the Shenandoah Valley :)
So interesting! Thank you! I was similarly told celery for strengthening my jaw 😬
Re: gum chewing - I'm autistic. I need to regulate my sensory input to function. This used to manifest in constant snacking for various reasons until I discovered the wonders of chewing gum. I use it for stimming purposes and it's a beautiful thing.
So do I!
Me too until my EDS caused me to get severe TMJ so now I can’t chew gum. I have to make sure there’s no gum in the house and no one can offer it to me because I will immediately say yes and hurt myself because I love it so much
Adhder here, and same! I chew gum in test so I can stim but also have both my hands free (although I do have stim toys with we when I need a texture or something to press hard)
I was using it to stim before I discovered what stimming was in college and switched to fidgit toys because my jaw is a little effed up. (I am not autistic but I have severe GAD which manifests itself in a lot of similar ways)
I have adhd and chewing gum is both a stim and something to help me focus. My jaw hurts after I've chewed some of it for 30 min though.
"Don't clench your teeth" let me tell my sleeping self to cut that out brb
THAT PART! I can't wear a nightguard because I have no back teeth left to support it due to clenching so hard in my sleep I'd literally wake up with tooth fragments in my mouth. I also couldn't wear a guard prior to the loss of back teeth because ny jaw is so "off" and when I wake up every morning, I have to unclench, relax, and try to put it back in place. People who shrug off TMJ issues drive me crazy. We use our jaw for literally everything, even swallowing our own saliva (think about how many times a day you do that motion alone, not to mention talking, eating, smiling, singing, kissing, yawning...ect). I've lived with this my entire life and dentists who dismiss the amount of pain I'm in every second of the day make me want to scream.....but that would require using my jaw and it would hurt, lol.
Not really related to the video, but I love how you over express when speaking, it makes it so much easier for me, autistic, to understand sarcasm, jokes and when you are serious. This is one of the things I love about your channel, I don't have a hard time trying to identify these things and can actually enjoy the content!!
I like that so many of us are viewers :)
100% can relate to this
I wonder if you watched other deaf/Deaf and Hard of Hearing channels if you would also find their expressions easier to read as it is such a part of sign language...
@@Beckysuesplace yes!! I really like that I can understand them better, so I do watch more youtubers that use sign language with or without speaking language. I've been wanting to learn LIBRAS (brazilian sign language) as a language's student at college and this would be a bonus, I really suck at communication because of this difficulty.
I am also accepting recommendations for other channels like this, it would really help me!
@@analuisa1214 sign duo is a good channel, I don't know if anyone that speaks Brazilian Sign, but I like your goal!
Gum-chewing! Hey, that was one of the ways I kept my ADHD-having self from getting in trouble for talking too much at school. Teachers quickly realized that if they just let me chaw some gum, I was the model student in every other way. Gum wasmy fidget spinner.
Diagnosed with adhd as an adult and found out I'd been using gum to reduce other fidgets as a kid. The internal head noise of gum chewing also helps me concentrate with all the extra stimuli drowning out distractions
I was thinking about why I like chewing gum and thinking maybe its the ADHD (probably it's like alsmot self diagnosed but I'm dont like saying that I'm almost positive I have it but I never say self diagnosed I say probably have it) my brian need a little more happening when I'm watching some things and that can lead to things shouldn't do so chewing gum is good it stimulates my brain just enough more
“Try to find ways to relax” woooow. What a helpful website. Hope you can get the injection soon!
I genuinely felt the internal rage at that one.
LIKE GOLLY GEE SOMEONE SHOULD HAVE TOLD ME EARLIER, I JUST SO ENJOY BEING TENSE, I NEVER WOULD HAVE GUESSED!
Yeah the NHS website can be terrible for that. "if you're in pain, try not being in pain 💖"
I'm so sorry Jessica. Chronic pain is so so hard. I have been watching your videos ever since working as a nurse assistant 2ish years ago, where I came across a lovely elderly deaf woman and wanted to learn more about how to communicate with her and what deafness is like and I stumbled across your channel. You've taught me a lot about chronic conditions and I'm thankful for videos like these that will help me help my patients when I'm finally graduated and become a physician assistant. Thank you :)
I’m sure you’ll be amazing with the initiative and will to want to learn more- it’s half the battle. ☺️
"I might cry. Please don't worry about it, I'm just in exceptional amounts of pain." #Relatable. So much relatable.
Also EDS here. Can confirm the variability of this illness, as one of my most shocking symptoms is something very few people, even those with EDS, have ever heard of: I have so many premature ventricular contractions of the heart (19,000+ a day without medication) that cancel out my heartbeat and stop it from happening, that spontaneously mid-conversation I can suddenly just be dead, and just... start being alive again before I lose consciousness.
Symptoms are variable as heck. I'm so sorry this one is so incredibly painful. Sending spoons and good thoughts that all of this nonsense that's preventing you from getting the treatment you need ends soon, and that you're able to get that injection as quickly as possible!
What?! You can literally be dead for a few seconds?! Jesus christ that is horrifying!
Wow hEDS too and I have never had anything like that. My only vascular issues are POTS and easy bruising. I have had hallucinations from lack of oxygen to the brain and it does make my wonder whether I’m killing brain cells every time I stand up... oh well not much you can do about it. I’m glad that medication seems to stabilize your heart. Hope you stay well-ish... you know, as well as you usually are lol
@@hazeld8016 EDS bodies are so weird! Same to you - I hope you have a day that's as well as can be expected in your body!
@@shiroi201 About 1/5 of the time, I'm dead! It's scary to think about, but to be honest, it's pretty normal for me, so less scary to "live" through.
@@robinhahnsopran that definitely sounds super scary!😱
"Do not rest your chin on your hand"
Me, darting my eyes around the room and slowly removing my hand from below my chin: 😶
Perfect profile picture for this comment :)
I find using my cheekbone instead of my jaw is a reasonable work-around.
I have TMJ disorder, so I wear a night guard and get Botox injections. This video hit close to home. Thanks for sharing Jessica
My mom has that and Im pretty scared I might end up with it.
I second the fitted night guard/splint its a game changer for jaw pain.
I just got diagnosed with this too, still really struggling with the pain at the moment. I have a night guard at the moment but it’s not yet helping! Hope it works soon hah!
I’ve had multiple trigger point injections and in both joints but not Botox yet. I’m starting to think maybe I should try it. I’m just so worried I’ll get the worst side effects and be stuck with it in my body for 3 months. Ugh.
I wear a night guard as well (currently with it on as I'm typing haha), but I've never tried Botox for it, as it isn't common here where I live, sadly. What is the experience like?
I love those tips from the NHS "don't clench your teeth". Do you seriously think I have cracked teeth and muscles in constant spasm on purpose? Nobody tries to do that to themselves! 🙄
The NHS tips are always the most patronizing and futile things one can read...they would be funny if they weren't so condescending it hurts
Honestly this is the first video I've seen where I've noticed the slanty lip/jaw thing, and I've been watching for years
tbh, i knew she had scoliosis and I think my brain was just like 'something's off but its fine'
I seriously feel your pain in this video. Those moments your smile slipped and your eyes scream in pain. I don’t have EDS (but my sister in law does, and hubby is being worked up), but I have a disability injury that hurts constantly. It’s not a matter IF I’m hurting on any given day. It’s a matter of how much. I really hope your pain improves soon. ❤️
There's a joke (?) about hubby's/men always being in the poo and only the depth that varies. I'm always in pain too, it's only the depth which varies!
This hits home. I'd love to wake up one day and just not be in pain.
Living with chronic facial pain is hell! I have Trigeminal Neuralgia so very much understand how frustrating and painful it is. I hope you can get your botox before the baby is born and get some much needed relief!
I chew gum (sugar free only, gum with sugar is terrible for your teeth) because it stop me chewing on my lips and tongue so much (bad habit, like chewing your fingernails) and helps me concentrate.
Same! Am annoyed with myself rn because I went shopping and had chewing gum on the list and forgot the list and then forgot the gum and I only have 2 left for the rest of the week... big sad. My tongue hurts 😂
I have an anxious habit of compulsively clenching my teeth/chewing on my cheeks and it’s destroying my braces. You’re not supposed to chew gum with braces but in this case ig it’s a lesser evil
Plus my jaw is like forward so my old dentist ordered me to chew gum so I’m kinda addicted lol
@Nyan Catspread unfortunately that’s no better for your jaw if that’s an issue.
@Nyan Catspread i’m just putting out some information ??
It's not your responsibility to be uplifting all the time, Jessica. I know it's in your nature. And that's admirable and definitely a big part of why your videos are so helpful to me and other chronically ill and disabled people out there. But these videos where you feel free to be honest about not feeling very uplifted are helpful for us too. Yours still doing amazing things. We're proud of you, we feel for you, and we're so very grateful for you. I just wish I could do more to help you back.
I hope your migraine goes away soon and that that doctor has the good sense to give you Botox ASAP. Sending love and healing intent.
Jessica's videos are the best part of my Friday, 100%.
I absolutely HATE when people give me unsolicited advice, and I know you didn't ask for advice, so feel free to ignore this completely. BUT I also have EDS and TMJD and constant jaw dislocations and I feel like I've tried everything, so if I can offer you an idea that might bring you relief, I'm going to give it! The only thing that has really helped my jaw pain is a jade face roller (and gua sha). I've learned from experience that you can really overdo it, especially because it feels so relieving in the moment-to the point where my face has swollen up because I went too hard (but honestly that felt better than the regular TMJ pain haha). There are several TH-cam videos with TMJ pain and jade rolling advice. I feel like the rolling really helps the sublxed side to gently go back into place, and helps the overworked side to relax.
Separately, I talked to my physical therapist about this and he suggested that I watch myself open and close my mouth in the mirror to recognize that I'm not opening it straight (because of how loose my jaw is). And then, once I can practice opening it straight, doing several repetitions of opening and closing throughout the day. I think that helped too. I haven't tried Botox for jaw pain yet, but it's good to know that that helped you! I also feel a lot better in the morning if I wear a mouth guard or retainer overnight as it keeps me from clenching.
Sorry for the long comment; I hope there's a tidbit of helpful info, even if it's just that someone else feels your pain and is trying to get relief alongside you. Thanks for making videos about this stuff; it really makes me feel less alone.
Thank you for this - I have a face roller but wanted a gua sha for ages so I think I'll get one now!
I came here to mention the mouth guard, too. Nothing on earth keeps me from clenching (day or night) but the guard is the only thing that prevents me from waking up in excruciating pain (jaw and migraine) each morning.
Thank you so much for the jade roller info. My doc never even told me to massage my muscles but I figured that out on my own. I can see how the roller would do an even better job than my fingers. I also find that icing my jaw helps and I have a cream from a compounding pharmacy that numbs the area and is often the only thing that helps with the monster headaches/migraines I sometimes get from the TMD.
My chiropractor recently suggested a jade roller for TMJD and I'm seriously considering it. Thanks for sharing your experience.
How do you know if you are opening your jaw straight or not? I have EDS and liked both ideas
@@CamillaZahn you have to open and close in front of the mirror to see if you're lopsided or anything. It's a very deliberate movement and I did it exclusively in front of the mirror for the first several days until I was sure I'd gotten the hang of it.
TMD sufferer here for the past 2 decades!!! Such a..well, pain. It's awful. I find resting my chin on my hand or sleeping at slightly the wrong angle can really mess my jaw up. I think dental work as a child exacerbated it for me, but I'm also hypermobile. Sending solidarity to all fellow jaw/cheekbone pain sufferers!!!! x
I struggle a looot with binge eating so I chew gum to help myself mentally avoid snacking too much. A lot of times I'm not actually hungry, I just want something to do so chewing gum helps me.
I struggle with binging too! I'll give chewing gum a try :)
Huh, gonna try this now. Thanks for sharing
I've had severe TMJ pain for six years now with no end in sight. I'm in pain every second of every day. My right side locks in place, and it is extremely painful. The only thing that sightly helps is wearing mouth guards 24/7. I had botox done in October, then it wore off by December. This pain is really awful and I'm so sorry to those who have up chronically deal with it as well. Thank you Jessica for talking about this awful condition!!
I have EDS and I had my wisdom teeth removed recently, during the process the doctors accidentally dislocated my jaw and none of us realised for a week until the regular surgery pain had resolved. Usually it just goes back in on its own but this time it didn't and it was displaced for a couple of weeks. We called up the dentist and he said "no way we did that your mouth was so flexible!" lmao love my body having a great time, I'm glad I made the dentist's life easier?!!? I guess?!?
that sucks and is also hilarious in a pretty dark way. hope your jaw is happily back in its normal home now
Omg I didn't even consider this! Thanks, I have EDS and getting my wisdoms out soon so should warn them to be careful 😂
@@caitie226 all better now!
@@Eloise_Please try and let the anaesthetist know too, this goes for most surgeries or anytime you may have to be intubated :) we love a floppy jaw!
@@violetwilkin8477 Thank you ❤
Gum chewing love story? The sensation of chewing gives my brain something to focus on so it helps lessen anxiety and focus on whatever task I'm doing!
AHHH thank you for talking about TMD because no one ever does!! I have it too, & it’s so nice to hear someone talk about it-I feel so heard❤️ I’m still on the hunt for any longterm relief, too😖 Best of luck with treatment!
I’ve got hEDS and TMD too if you want to talk to someone about it. My jaw used to lock up overnight and I’d have to massage it to get it to unlock every morning. What a time to be alive. My symptoms are better now that I wear a retainer every night that functions as a mouth guard. I also suspect that my symptoms are better because I have a new physical illness for my subconscious to channel all my anxiety into (functional neurological disorder). Anyway, glad you feel heard and I hope you find your relief soon :)
@@hazeld8016 thank you!! I’m sorry you go through this too, and I’m glad you’ve been finding ways to manage it! I don’t have EDS, but I have a disorder less severe but in the same family that makes my joint sockets swallower than normal and also causes hypertension. I’ve had to have a procedure done on my jaw when my cartilages came out of place, and my face muscles and joints haven’t been the same since, so my main thing now is finding ways to manage the pain. I wear a nightmare and have done physical therapy, and I think I’m going to try acupuncture next before looking into Botox, which I’m now considering because of Jessica. Thanks for listening! I hope you continue to find relief too! 🥰
gum chewing love story: when we were sixteen and parents picked us up from a party and we thought minty gum would eradicate all the alcohol smell on you
I never noticed your jaw looks "weird", so I'm shooketh :o Doesn't really matter to me, but I'm sorry for your pain ;/
Also, I used to love apple Orbit gum as a kid. It was one of my first addictions. But judging by the comment section, I should try chewing gum again, since it apparently helps with anxiety and chewing of your own lips (which I cannot unlearn for the life of me).
"I kicked myself in the face" is the ultimate meme.
I almost cried when I saw the title because my jaw has been AWFUL the past few weeks. I just want to eat sesame chicken without crying or be able to eat lunch with my coworkers without going, "Hold on, let me pop my jaw back in place." I'm dreading going back to my office, because I won't be able to just go stand in front of my freezer and hold a package of salt pork to my face.
Me, having EDS and a weird pain near my ear now realizing it's related 👁️👄👁️
Life absolutely continues on even with brand news babies! Please don't panic. We loved taking our baby around because he slept 90% of the time
Sounds like an angel. I know my brother cried all the time when he was a baby and he was just really fussy in general.
I've developed a fear of eating because of my jaw pain and honestly it makes me want to cry because food that used to bring me joy scares me
This!!! When my TMD was at its worst, I would literally get pre-emptive anxiety even just thinking about eating an apple, or looking at the dinner in front of me and knowing in my gut I'd be in pain afterwards. It was the most miserable feeling I'd be on the verge of tears 🥲 sorry if this is totally unsolicited or advice you've already had: but if your jaw pain isn't due to some specific condition and you haven't tried wearing a mouth guard at night, it's worth a shot. I can go months now without wearing it without pain recurring.
I had the same thing with stomach pain, my joy in eating was literally part of my identity from when I was so young and losing that made me feel like I wasn't me any more. I really hope your pain goes away and you can get that back, that sense of loss is sometimes worse than the pain itself
@@JuliaPetrova thanks I appreciate the advice! I might try that, I'm also supposed to see someone about it as well soon, so I'll have to see where that goes. It honestly sucks so much, I already have issues with nausea and then weirdly enough I randomly get grossed out by texture, so I've kind of just been struggling with a general not wanting to eat but still wanting to eat. Like I haven't enjoyed food in so long, I miss the feeling of a comforting meal haha
I wish life could be easier for those of us who have to deal with this shit. You’re going through a tough time, love. We’re all here for you though.
Mom of 4 here. Babies are portable as long as whoever feeds them is with them, you can take them anywhere. Don't let people scare you into thinking you have to be homebodies once the baby comes. We went to a Christmas party the day we came home from the hospital with my 4 th baby. 🙂
Just about your videos in general: While waiting for life and death news from the hospital about my father, your videos felt like a refuge, in which I found calm! So, thank you! 🦚❤🦚
I have had TMJ problems since I was 12ish (I'm nearly 24 now), not due to EDS but due to holding all my stress in my jaw. I totally get the pain that is constantly there. Thanks so much for making this video, and best luck with your baby! You can live a life with a kid, it's just another human there! You've got this!
Same here, I'm 37 now and it tarted around 13. I'm not in the middle of a flare up but I could literally feel the pain when she described it 😬 I always described it like it's as if you have indigestion/heartburn... But in your temples, ears and jaw.
The way she said "Because clearly I was reaching for the musli" literally made me squeal. She's such a queen I can't...
Several of my friends were out and about doing stuff the week after they had their babies. It is definitely still possible! Also, I’m not sure why one side of your face is your good side. Both sides look good to me!
I have constant dry mouth so I chew gum so my mouth doesn’t taste like old coffee and dirty socks all day. My ribs pop out of place but according to the doctor I don’t have EDS because “my skin isn’t super stretchy”. Insert eye roll
I’d find a second opinion- stretchy skin is only symptomatic of some types of EDS. The most common type- hEDS doesn’t normally present with extremely hypermobile skin.
However, there’s a massive misconception about Hypermobility syndromes- many people believe they have EDS because their hypermobility is so extreme- but hypermobility in the odd joint is very different to full blown hypermobile disorders- and they can be massively disabling- in many cases worse than many EDS cases, but because the word is commonly used it’s trivialised.
hEDS is characterised by multi systemic issues such as poor bowel motility, visual impairments, urinary retention and prolapses- it’s not a more severe version of hypermobility so much as an entirely separate condition with overlapping symptoms.
I hope this may be of some assistance to you. It may be worth going private if you can if you need help that isn’t available locally. Although it’s worth baring in mind that wonderful though doctors can be, often the advice they give is easily obtained via the internet and other patients, so it may be that it’s better to join a support group than worry too much about getting a diagnosis if it’s obvious what you have and you don’t need tests etc.
There isn’t genetic testing available for hEDS.
I once swallowed gum while chewing accidentally when I was little. One of my friends said it's gonna stay in your stomach forever, yeah scared the shit out of me.
Thank god they didn't say "Now you'll grow a gum-tree inside you"
I've been told that too. I also thought that the seed I swallowed would grow an apple tree inside me. WHY DID I THINK THATS HOW THE STOMACH WORKS
@@lesbiangoddess290 ikr! It's hilarious 😂
Ah. This video came at the exact right time. I'm experiencing jaw pain, clicking and difficulty putting my teeth together. Mine was caused by a dentist appointment. Just keeping my mouth open too long and bam I'm in pain. It makes it feel better that I'm not alone.
My dentist started using a wedge like device to help hold my jaw open to take some on the pressure off my muscles. It doesn’t take away all the pain but it mean my jaw has only locked once in the past 5 years of appointments instead of every time.
I have 3 dental procedures in the next month, and am dreading the pain. Not from the procedures themselves, just the jaw and neck and back pain.
This is relatable. They tell me to take pain meds prior to dental appointments now.
I love the part where you say: My main symptom is “OVER THIS”
I feel that 💗
Sending you love!!
Bodies really do be weird sometimes, don't they... Hope you feel better soon, Jessie!
I have a bad habit of eating when bored, but if I chew gum instead it stops me doing that and tricks my stomach into thinking I ate something
Going thru a pretty bad chronic pain flair up myself today, along with covid vaccine side effects! This video made me feel not so alone in my pain and frustration with healthcare. Thank you for continuing share your story with us, even when it gets tough, it always gives me a boost when dealing with my own health issues. I wish we could all have quick easy treatment for our pain, and I hope yours comes sooner rather than later! Much love to you, Claudia and the baby 💕
I went to the GP recently about TMD (stress-induced bc my body is weird) because I could barely eat, was in a lot of pain, it was inducing my migraines and painkillers didn't help, and was directed to the same website and told all I could do was wait... it's been 3 weeks. ow.
For most of my life I chewed gum in spite of it hurting my jaw because I just thought it was that way for everyone. Then we got a new dentist and he was like "oh you close your mouth the same weird way your mom does" and that was how I found out there's an issue with my jaw
i’m chewing gum right now omg
i do it as a way to stim/fidget and i love the taste of mine
chewing gum is one of the only things that seems to consistently help my nausea for some mystery reason so that's one thing for your curiosity
THAT HELPS ME TOO SOMETIMES!
Me too
my jaw locks ALL THE DAMN TIME and yet here i am chewing pens 24/7 despite my ex telling me it'll give me life threatening illnesses
I have TMJD too! It doesn't dislocate often, but clicks constantly. I can't even yawn
I have to hold my jaw joint sometimes when chewing because my jaw pops in & out. So painful and frustrating.
@@kellyp136 SO frustrating. I can only eat on one side of my mouth cos if I eat on the other side it'll pop my jaw out
I'm currently waiting for a surgery because my temporomandibular joint disorder decided to simply go crazy outta control. It hurts a awful lot and I'm sorry so many of us experience that
Chewing gum helps with my anxiety, that’s why i love it 😅😅
Chewing gum and TMJ are not friends. 😭 the constant motion would be very painful later.
Same
I cannot chew gum anymore. My jam dislocates after about 5 or 6 chews. I miss it so much. Damn TMJ.
Same!!!
Same
Wait there's something wrong with Jessica's face she so beautiful and looks so perfect
Its the makeup
I get violent sneezes. Sometimes when I'm sitting and I sneeze I will knee myself in the forehead so I feel ya about kicking yourself in the face
about the gum chewing [3:50] i have sensory processing issues and autism and i basically use it for stimming purposes. also i struggle a lot with food due to my sensory processing disorder , for example certain textures or tastes will make me feel physically sick or gag sometimes and gum chewing helps to desensitise my mouth a little for some reason :)
I have Marfan syndrome, so while I don’t get your specific pain with EDS I get PAIN. Wishing you nothing but the best and I hope you can find something for your jaw. Much love. 💜💜
Good news! Marfans is considered part of the EDS family! (Spoiler; that's sarcasm, I know it's not good news) #spoonielife
Sending you hugs and spoons from an FMD patient (FMD connective tissue/cardiovascular disorder similar to Vascular EDS and might be in EDS family but docs have decided yet). Thankfully I don’t get much pain but everything kidney down is messed up.
When you said "gum chewing love story" I immediatley thought of a former class mate who found it romantic to share/swap chewing gums while kissing😅
"It be how it be." - Dr Jessica Kellgren-Fozard, 2021
As a disabled single parent of twins with EDS (me AND them), may I say unto you that you have the MAD SKILLZ my friend! Go out and parent YOUR WAY, which is all your babe will ever need anyway!! 🤟🏼
💪🏼👩🏼🦰💕👶🏼✨ #ohreally #yeswheelie
"It be how it be" lol the Jessica version of it is what it is .
I love how raw this video is. We love you and your face hope you can get Botox for your pain soon!
We love you and you're so beautiful and the best representation on TH-cam! I hope you can get your botox injection soon so you can feel better and I wish it'd stopped hurting 🥺 Stay strong!
Tbh I only chew mint-flavored gum whenever I’m out and about and can’t brush my teeth 😂
"Gum chewing love story" psychedelics. in. college.
Chewing gum can help with concentration like having something to do in the background
I can’t even tell you how it helps to hear someone else with EDS and dealing with TMJ. I’m still looking for a dentist who can help and doesn’t just tell me to relax.
Don’t bother with Dentists hun,they won’t help you. It’s just been complete lifestyle changes for me (I’ll never feel completely normal but my life is acceptable,even good now/ at times). I know some of the stuff sounded stupid on here but it does actually help. Think yoga, face yoga, aromatherapy (peppermint is amazing) as well. (I know we have an unspoken rule that unsolicited advice is so annoying, but I feel as I have the same thing, I can kinda share my experience. It does and can get better promise!!
Oh sorry that’s just for TMD though,not the other thing.if you just wanted to vent, feel free to ignore 😘
when I complained about my TMJ pain a couple months ago my dentist told me I "probably just need a good vacation" um SIR........(a) I'm disabled and I don't have a job or money, (b) vacations have not been proven to cure anxiety disorders or trauma, and (c) we are still in a PANDEMIC ??????
so yeah, you're not alone on that :\
Thanks for the support. I was just abbreviating my medical history for the sake of brevity. It’s been ten years of mouth guards (all of which I have cracked with nighttime clenching) , etc. Botox was the next suggestion from my doctor. So I was kinda hoping Jessica would have amazing success with her injection.
@@drmollie3723 The only dentist that helped me was one that focused on jaw/tmj pain and I only ended up seeing them once. I tried professional mouth guards, consulted 2 surgeons, chiro, muscle relaxers, went to the ER, ect. and after 2.5 years I found that even though my one disc was out of place that wasn't really the source of my pain, my pain came from muscle tension. I started getting consistent deep tissue massages, really firm pressure, for my neck, face, shoulders, and back and eventually I started to improve.
The dentist I mentioned also told me i do this thing called tongue thrusting, were i constantly press my tongue against the back of my teeth, it seems like such a small thing but I would catch myself doing it all the time so i had to train myself to stop. People would also ask if i clenched during the day and i don't, she was the only one who mentioned tongue thrusting (i do grind at night sometimes).
I hope this helps. My jaw still clicks because i never got the disc put back in place, but i'm usually pain free or very low pain. I use to cry everyday the pain was so bad.
hi, mum of four here - you absolutely can have a life after babies
xo
You're so strong and beautiful. Thank you for inspiring me. ♥️