I always thought it was normal to feel pain when you're sitting or laying I thought it was normal my fingers or others places will be in pain

That seemingly random sharp, sudden pain has got to be the worst sometimes... but the sedentary pains can really suck, too. Definitely relate to each of the types you mentioned, along with a number of others.

The description of your pain is spot on to what I deal with too. I also have this weird thing where my bones hurt. And the bone pain is hard to describe but the best I can describe it is that it feels like the center of my bones are trying to go through the outer part of my bones like there's too much in the center of the bone or something. Like if you squeeze your arm imagine that feeling going the opposite way. Idk if this makes any sense. I also have no idea why.

I'm glad I'm not alone. My EDS pain has lead me to severe depression and knowing there's others experiencing it too really helps.

It's TERRIFYING how accurate this is. Are you in my skin?? When I try to describe my pains like this people think I'm bonkers or they can't make sense of it, so I rarely get to discuss them. Plus I've never met another EDSer in real life before so I haven't gotten to hear others' interpretations. It's so validating to know I'm not the only one who feels all these different types of pain. Thank you for helping me to feel more understood, but I'm sorry you're feeling the same hell as I am 😂

I just recently got diagnosed, am I the only person that literally gets so shaky and sore by doing something as simple as washing my hair. Like simply taking a shower is such a struggle . Can anyone relate?

does anyone recognise the pain that feels like an absence of pain? like it hurts but it feels like nothing but that feeling of nothing is deeply uncomfortable? idk I have that a lot

Oh my god the sedentary positions are the worst. I’m trying to lay down and relax but goddammit I can’t get comfortable because my arm hurts, my hip hurts, my knees hurt. I can’t cuddle with my boyfriend because I can only be in one position for so long till I have to go into another one. And might I add, the positions that EDS people go in to be comfortable are fricken weird?! LOL I’ve been told this before (the weird part) but the most “comfortable” position I lay in is if you’ve ever seen a flamingo, and just take that raised leg and bring it all the way to your chest. That’s how I “try” to sleep LOL Love this vid, you got a new subscriber, I really need to listen to more people who have this condition so I don’t feel like I’m insane. 💕

You just explained exactly what I go through! It’s so hard to try to explain it to people and they often think I’m exaggerating or something because it’s so complex. You did great explaining it.

I’m a therapist and personal trainer who specializes in helping folks with hypermobility. I’ve been very hypermobile my whole life, and strength training for the last 15+ years has helped me to make my body so much more resilient to the negative effects of hypermobility!

For years i've constantly complained about all the pain i'm in and everyone would think i'm faking it or am being dramatic. Literally in a second I can go from being perfectly fine to crying my eyes out from the pain. I've been to so many doctors and all of them have to me that theres nothing there and that i'm making it up. Can you please tell me how to get tested for EDS? I know that there's no cure for EDS but if I do have it, it would be some closure.( btw thank you so much for uploading these vids

Do you ever get people who don’t believe that your in pain? I get this all the time! I never know what to say because how in the world am I supposed to explain to people who don’t have EDS.

I’m 32, it wasn’t until I was in therapy last year to realize that everyone isn’t in pain constantly. I truly thought everyone had a lot of pain and had better willpower than I did. Growing up my family was like “you’ll feel better if you take an Advil, drink a coffee and go to work.” Now that I have an MRI to point to (I got this two weeks ago I literally just found out I have a lot of spinal damage) I feel vindicated. Other spoonies can understand the guilt and unwelcome thoughts that you’re being lazy. It seems the worst when I’m not 100% miserable but still unable to do daily activities. Thank you for the videos! I needed to see this. I hope you have better days and find the treatments that truly help. 💕🌺🦋

Afagafqgsfasfag i was having a pain in my wrist and when you where talking about popping your finger back in place I decided to try the same to my wrist and i push it and i hear a big CLICK and it was hEAVENLY the pain was gone and my wrist was back to normal. Thank you :)!

Finally someone who understand the many levels/types of my pain!

I just got diagnosed with EDS and i get those sharp pains aswell and when i get them i have to stop everything

Your pain sounds so much like mine. My son was recently diagnosed with EDS and his genetisist says she is certain I have it too. It explains why a healthy person like me has so many different issues to de a l with. My son is much worse and I pray for him to have strength

Wow... I just started looking into EDS as a possible explanation for my pains, and this video manages to describe almost all of my pain perfectly- so many things like the sedentary pain and the random sharp joint pains, I just thought had no explanation, but this makes me feel so much less crazy! I have all of these pains exactly except that I don’t experience dislocations or subluxations (I’m pretty sure). Thank you so much for this video!

I have dealt with chronic pain for so long I just thought it was the way my body was, i never thought more of it. Now as I am going through PT attempting to heal myself signs are pointing to deeper issues. Thank you for this video. I feel every one of these pains and have all of my life. I had no idea the other people experienced this. Thank you for being raw and sharing your experience.

Good morning Izzy, So as I was having an EDS pain flare, and I decided to re-watch this video. It’s so funny, when you said, after you finish this video, you’re going to remember so many other sources of pain that you forgot to mention, like one of your main sources of pain that you deal with… and it’s so true. I often find When you go to the doctor, you want to tell him about the worst pain out of all that you’re experiencing and you totally forget lol😂. I had commented on one of your more recent videos, I was diagnosed with EDS when I was in my 40s after car accidents. But one thing you said that jumps out at me is when I was a young girl in school and I would raise my hand, I would be in so much pain like you described and I just thought that was normal. I also always remember my ankles being wobbly and tripping and falling a lot when I was younger. My mom reminded me too, when I was a little girl she was walking me to school and took my hand to cross the street, and sometimes I would cry out in pain, and she barely tugged on my arm. Anyway, just thought I’d share. Thank you again for all your videos. You’ve helped so many people, (like me) to understand our pain is real and we are not crazy even if the doctors think we are. Have a great day!🌻🥰Dolores

I love that you shine a light on this. Keep educating. Keep shining.

Never in my life have I related to a video so much!

Do you get pain when being touched sometimes? For example, my husband will be playful and poke my upper arm or lovingly squeeze my thy or calf and it literally hurts my skin or muscles or something...I don’t know how to explain it and figured I’d do because I have a high tolerance for pain, but when his happens (any of the joints/muscles) I feel like people think I’m being a baby!! Do you get pain like this also? I also get that super intense sharp pain (especially in my SI joints) my ribs always shift also. I’m till working on trying to get my doctor to send me to a specialist to check for EDS.

The pain when you’re sitting or lying is such a good explanation like I literally just have that pain all the time haha.

I relate to this. I have EDS, also. I like the way you explain the pain as a body headache. It's hard to come up with terms to explain to non-EDS people. I enjoy watching your videos and hearing another person's experience mimic mine. It's a good feeling. Justified in my experience.

When you talk about the sharp pains I think I call it a prang, sometimes it feels like someone strummed my bones like a guitar string. It usually happens in my neck. I describe myself as walking around with a metal skeleton that needs oiled. I think your description of pain is spot on. I got recently diagnosed and it’s Kinda validating listening to someone experiencing the same thing I sometimes get something where it feels something is trying to push its way through for example my arm. I think people thought it was growing pains but I’m now 21 lmao

I'm really glad you did this video. I have hEDS too, and have exactly the same painful muscle and joint fatigue and pain with and without movement or exertion. It's nice to see someone put it into words. Although I have had this diagnosis for many years and am being "treated" for it and it's co-morbidities (I have a lot) because I live it everyday and always have, I still have days where I wonder if certain things I feel are normal or not. I think we all do that. To have someone (another Zebra) describe and breakdown different subtypes of our pain makes me realize that what I'm going through isn't "normal" and I'm not crazy for being so aware of every ache and pain. Or that the "fake" or "hypochondriac" labels my dad gave me or my family used to describe me as I was growing up from a very early age does need to stop bothering me. Of course logically I know that considering my diagnosis and random frequent injuries. And my family know they were out of line and wrong considering how sick I have become over my 45 years of life. After all my dislocations and the daily subluxations and how you said things slide in and out of place and cause severe pain without really knowing that it's a subluxating joint causing the pain, is a constant source of irritation and frustration for me too. The sharp headache type pain sucks, I know it well. I have to say that for me, the worst dull but severe aching pain is when the muscles between my thoracic spine and my shoulder blades over my upper rib cage in my back are excruciating when they knot up and clamp down to prevent subluxating in my ribs and shoulder blades and stay like that for days or weeks. Using a lacrosse ball against the wall can kind of help them release sometimes and move my ribs back into place. Anyway, this was a great video because it just put my exact types of pain into the EDS category and showed me how abnormal it is while putting words to it all by someone else with EDS. Just holding my phone up right now is causing pain and fatigue in my elbows. You hit the nail on the head. So thank you! I'm subscribing now 🦓💪😊.

I can relate to every type of those pains,.. you explained it better than I can!

Great video and you articulated your types of pain very well! I was looking thru your videos specifically to understand the type of pains you have because I was confused with Criterion 2 - Feature C of the EDS diagnostic criteria when I was analyzing myself. I visited a genetic doctor and she told me I for sure do not have EDS-H but have peripheral hypermobility syndrome. Most of my pain is due to some overstraining of my peripheral joints like thumbs, toes, ankles, etc. I think I am much more susceptible to hurt myself compared to a normal person but less likely to hurt compared to a EDS person. So this video made it clear that your EDS pain is at a whole different level. And I just wanted to share my experience with others here. And wish you the best with your pain management!

Totally relate. My descriptions of pain are usually all over the place too. Our pain is literally all over the place! In so many ways, and so constantly, it's always so hard to describe to people.

Totally makes sense, thanks for just talking through/describing pAiN 👍

This is so relatable. And it’s so hard because most people do NOT get it. Then they give you the weirdest look when you try to explain.

The first pain you described is what I describe as muscular exhaustion. All the glycogen leaves your muscles and the lactic acid builds up. This is what causes the pain. I also get it in my calves from walking too fast and I can’t hold my arms up for very long... my father also had this issue... I sometimes get what I would describe as a little tendon or ligament getting literally caught in the joint for a little while. I have had it happen with knees, fingers, ankles, toes, etc. It’s quite painful but you never know how long it will last and then suddenly it’s gone... I also get shooting nerve pain... that’s fun. Oh and when the fascia get inflamed in my feet and ankles...just shoot me.

Thankyou Izzy for this video - it’s so hard to describe this chronic pain that we have to suffer being a Eds hypermobile person

3:10 omg. What a perfect explanation! I am glad to have some way to explain that just because I’m not experiencing sharp, stabbing pain does not mean it’s dull. It aches, but it’s pretty intense. Currently it is 1:30 am and I am trying to ignore my neck and back pain to do school work, but I’m failing. I still have no pain tolerance despite constant pain, and my pain isn’t too bad compared to day my mother’s. But it’s getting worse. My period makes it much worse as well.

Im 22 and I have eds pots and fibromilgia all except pots causes me pain and how u described your pain is true with me to except with the nerve pain from the fibro thanks for the description sometimes it's hard to describe the types of pain we deal with day to day and for me iv had pain since I was a little kid I can't remember living without some type of pain

Thank you for these videos. I am planning to start a relationship with someone who has EDS so the more I can learn about the disorders, the better.

The pulsing headache pain that doesn't pulse, but is just constant in a muscle or joint, is a great way to describe it! Thanks, definitely going to use that description with my providers. My latest physical therapist was the first person willing to do any hypermobility assessment for me, did an exam right then and there (yup Hyper-Mobile, except where scar tissue has built up at the base of my thumbs), and is consulting with others about testing for EDS🤞

K when you said raising your hand causes pain I totally feel that.. whenever I blow dry, straighten, or curl my hair I always want to quit like one minute in because it hurts so bad and it makes me really tired :/ beauty hurts😅

Yes I know all those pains. I am 67 and was diagnosed with fibromyalgia for about 5 years and recently re diagnosed with EDS. All my adult life has been gradually worsening pain. I am glad you are diagnosed earlier and really really hope that there will be a cure, or even a breakthrough so that you and other young EDS people can live a life without pain xx

I and 2 of my 3 sons are in the process of being evaluated for Ed’s… i’ve known for quite a while that I probably have this and fibromyalgia but been too stubborn to go in and get a diagnosis. This morning I am dealing with back neck and severe hip pain along with all my achy joints. I have been going to the chiropractor my whole life because I dislocate so easily. I’ve always been hyper mobile and never realized how many other things go along with this. With the birth of my last son a little under six years ago it unset my joint issues terribly. I can relate to so many of the things that you talk about and I appreciate you so very much putting these videos out I’ve been enjoying listening and learning. 🖤✨

Wow I understand each of them and the descriptions you gave were spot on. I didn’t know also about the top of fingers next time they start randomly hurting while doing something I’ll try clicking them like you said.

I have spent 2 days in bed at a time due to migraines caused by EDS neck pain. Most people think it's just cool you are seeing through and can dislocate, but they don't really understand that I can't move a whole lot because I'm in constant pain but for me pain meds never work. You're my favorite person to watch when I am having issues with my EDS

It’s like you were in my head and explained the pain I experience.

this honestly is very helpful to my research project! this is exactly what it feels like!

Wow that described my life of pain for the last 50 years.

I let out an involuntary shriek in the store one day after a jolt of pain surprised me. ⚡️ When people looked over to see who screamed 👀, I just looked around, too 👀, like I was concerned and wanted to find and help the mysterious stranger in need.

Everything you explained in this video literally made me say “wow I’m not alone” lol finally someone who knows exactly what I’m talking about and feeling!

Very well explained. My tailbone also feels like it's burning all the time. Sitting feels like it causes a lot of muscular and nerve tension, but standing hurts my joints. And sometimes when I'm walking I feel shooting pain and it feels like my leg is going to buckle. Most of my pain is on my right side, probably because of how my scoliosis is. But I've gotten so used to all of it that I never really talk about it. Most people in my life probably don't know how much pain I'm in all the time, except for the fact that I'm constantly cracking my neck to try to relieve the pain. That's their main indicator

I really enjoyed this video - my doctor wants me to list out all my symptoms, and hilariously (and sadly, sort of) one of the biggest challenges in this so far has been that I keep finding "symptoms" that I wasn't even aware were symptoms until my doctor, boyfriend, etc someone else helped me see it because to me it was not abnormal, it had been my normal all my life. I feel your pain (haha, puns) on a deep level on every one of these. It's refreshing to see someone who so well understands my day to day experience - I love having a diagnosis because I've been able to find so many other people with similar experiences! Another type of pain I have from EDS is really bad recurring tendinitis. For whatever reason - even when I'm wearing my braces non stop to a point where my joints 100% are not hyper extending - my tendons are still so swollen and inflamed that they are often red, visibly raised, and tight. They think it's just from my joints working weird from the EDS. Hope your new year is going well :) On another note, what you were saying about the random, out of nowhere severe pain that comes out of no where, with no discernible trigger (despite all the journaling...) I definitely get that. For me it's worst in my chest, when I move a certain way. I think maybe I'm dislocating a rib - as you say, maybe something is slipping out? But it's just a very weird pain that I can't identify, like I don't know what it feels like, it's not a muscle or a tendon or anything really it's just very sharp and painful. Maybe in 50 years when research has caught up we'll find out :) The last note (sorry, just like you, they just keep coming) is OH MY GOD THE SITTING! I can't explain to my doctor, but ... any time I am sitting, my legs hurt. I mean, everything hurts just generally more sitting, but any time my legs are down it's bad. I think it's partly the POTS - the blood surely maybe in my legs - because my legs always feel just uncomfortable and hot (but my toes are freezing -.-'). We know now why I have always sat criss-cross, W sitting, or otherwise with my legs up all my life - my mom tried and failed to break me of my bad dinner table sitting habits for literal decades! It's really bad in class - do you have any ideas for an accommodation that might be useful, or affordable compression stockings (I haven't tried those yet and am on a tight budget)? I have like 2-6 hours of classes a day and especially on the long days my legs get so bad sitting conventionally at my desk for hours. Thanks again :)

This was a great description of the pain I feel everyday. I've dislocated so many of my joints (ankles, knees, back, ribs, shoulder, hips) and they'll just randomly dislocate and it hurts so much. When people just barely poke me I'll get random bruises and tons of pain. One time someone gave a fist bump and my entire hand was bruised! I recently have been doing research about these symptoms and came across EDS. I asked my mom to let me get tested for EDS and she's taking me to the doctor next month!

the talking pain makes so much sense... if i talk too much it hurts in my throat and i never even realized it’s EDS related!!

omg omg omg ive never heard anyone speak about eds like you do. thank god im not crazy. i relate soso much especially the big pain that lasts 10 seconds or days haha i laughed and almost cried its good to be able to relate to someone else. youre amazing. thank you for your videos super helpful

Omg. You are literally talking my language. The headache like pain without the pulsations, it's horrible! Last few minutes I've got a weird ache to my hip and it's gone hypersensitive so I can feel everything snapping around 100× worse than normal. I was initially diagnosed with tendon snap on my hips about 2 years before my EDS type 3 diagnosis. Great that someone explains what I find hard to... But I doubt it was a walk in the park for you either!

Helpful video. As I was listening to you I was like omg, I can count like 10 body areas that hurt, but it's so normal, I forget it isn't, in fact, normal. I once tried to map out the types of dizziness (with my POTS) and it was a fun exercise. I think I got 10-15 different types.

I was just diagnosed after being misdiagnosed for over 24 years.. I've gone thru hell and my body is paying for years of not knowing what was wrong. I've been binging your videos and I'm grateful to have found you. I get all this type of pain the worst is I get these electric shocks. It's like a buildup of pressure then I actually have a body spasm and get this excruciating jolt. I get small shocks alot too but the worst is the joint and bone pain. I can feel my bones and some flares leave me completely unable to function.

David Cormier I have been getting the same sharp pain in feet every day. And it all over my feet my heel and then up by toe then some were else. I'm walking every thing is good then I can hardly move. Then the next minute I'm fine again drives me crazy. It is good to hear that someone knows about these issues. Thanks for sharing

Wow, nobody has ever described my pain so well. How weird. I always thought I was just a baby and my dad always told me to just get stronger and stop complaining because he thought he could handle pain better and was more of a person who could tollerate pain than I could. But nobody knew I had EDS. And by the way, your description of the sharp sudden pain is right on with the sharp, sudden pain I have. Thank you thank you thank you so much.

And btw this video is soooo helpful to me. Thank you so much. I was Dxd w fibro when I was 11. But there was so much more to my symptoms than fibro.

Holy wow...this is all exactly like what I go through every single day. Like you explained it in such a way that it’s EXACTLY like mine! Like the “headache” analogy, YES! That’s exactly what it’s like! I’m going to see a rheumatologist in a few days, I’m going to bring this up to her, because all of my immune/autoimmune blood tests have come back normal, but I’m still in so much pain every single day, constant subluxations in so many joints, ug. I probably won’t qualify for H-EDS (no one else in my family experiences this, to my knowledge) so maybe it’s G-HSD, but it’s still so gratifying hearing another person so perfectly describe the types of pain I also experience every day. I’m not crazy, lol. Phew!

I can relate to all types of pain that you described. My joints have been like broken hinges for years with so much slipping in and out of place but it seems like a number medical professionals don't believe me because I haven't to the ER to have a dislocation put back in place. I've been seeking help for the past few years. The most recent doctor does agree that there's something wrong but that the pain is not causing any damage. I get a fair bit of those sharp pains you talked about I'm very concerned that I might be causing damage that might be irreversible later... not to mention it's a pain in my butt trying to complete any task when I'm having those pains. Thank you for sharing this video. It's comforting to know that there's people that go through the same thing as I have. I suspect I might have EDS too as I correlate with many of the characteristics of EDS and even have a number of comorbidities as well. But the geneticist refuses to see me ...

Thank you for this video. I started crying because you describe so many of the types of pain I have, that I've been wondering the cause of. Especially when you mentioned no matter how you sit, it affects some portion of your back. We've bought several new pieces of furniture for me, thinking they will be good for my back, and I end up crying in hysterics because they are even worse. Ugh, it's just so frustrating. I already knew I had Ehlers Danlos because of my jaw hypermobility, but I didn't realize it could cause all of these pains and the recent neurological symptoms I've experienced. I've also got joint pain, the random bursts of pain like my knee is going out or something, my jaw dislocates and subluxates frequently, and I've had 3 surgeries fro it, I've subluxated my wrist, and I get frequent tendonitis, I have full body aches throughout my muscles, full body neuropathy, my spine often feels like it's made of shards of glass. It's just so exhausting to be in all of this pain all of the time. My husband can kiss me, and I'll yelp in pain because it made my neck jerk ever so slightly. Sometimes we are holding hands, and I have to stop because it makes my joints in my fingers ache, or it'll cause my neuropathy to flare up.

I have a lot of these types of pain. I have always been very flexible, it made me good at ballet when I was younger. I'd show some people how double jointed I am, they thought it was cool, but it hurts now that I'm an adult. I have finally been diagnosed with lyme disease, but it was found and treated very late. Right now I'm up because sleeping makes my tailbone and legs hurt. Sometimes it moves from joint to joint. When my lyme is "flaring up" as I call it, my pinky on my left hand hurts, my left knee, and the bottom of my feet burn, and pain shoots up my legs. It also seems to move around though, like to a joint that I am using at work or a spot that has been recently injured, like it moves to the stressed points. If I'm having a migraine, even the lightest touch can hurt. I got really soft pillows and a super soft bed because of that (I would love a waterbed someday because my mom's helps). My pancreas is failing, I have a bunch of GI issues, I get infections easily. I feel like my body is giving up. My bloodwork always shows anemia and high white blood cell count, like I have an infection. Still no one is able to put a name to it or treat it beyond anything that temporarily makes me a bit more comfortable. I saw a rheumatologist today. I'm 34, she's assuring me she's going to find out what wrong, but so have so many doctors before.

I woke up in tears like a baby yesterday because of the constant pain. All of my joints hurt ridiculously on top of all the pain I was enduring all week long on top of the pain from all the days before. This never ending pain is horrible and the throbbing pain at night prevents me from sleeping at night. I had to spend the ENTIRE day resting in bed only getting up to use the bathroom. To make things harder my POTS was having me dizzy and out of breath and seeing snow. 😫😩

I relate to almost everything you said, especially the constant pain, pain in joints even when not doing anything, the sharp pains while walking and the pains of sitting. When I tell this to my parents, they always tell me that I can't be in pain from doing nothing and that I am just imagining it or with the other pains that I am exagerating. I have not been diagnosed with anything, so my parents basically don't believe that anything is going on. Also while typing right now, my fingers are hurting from the pressure I put on them to type but I don't know why. Writing also hurts, I can't write for a long time because my hand and fingers will start to hurt.

I understand every one of those. I have a pain that I call a full roar. All the time I’m aware of pain in certain joints, headache, my spine and lower back. Most of the time it’s just there, being painful, but doesn’t often alter what I’m doing.

Thank you very much for thoses vidéos about Eds, i feel less alone with that now !

My most annoying and prominent pain is full body pain. It's like my whole body is aching really bad and it can sometimes bring me to tears. It gradually gets worse until I stop and sit down or take painkillers. Usually triggered by working/walking but sometimes I can just wake up feeling battered and bruised for no obvious reason. I am usually taking painkillers for that to stop. I also get sharp pain in joints randomly.

I just love when I do some type of simple movement and feel like every muscle has been strained.

This is spot on for me, I also get burning sometimes but most of it is like sharp or constant. It’s crazy how one second you can be fine and the next you’re screaming lol

Girl, yes! I hear ya! My worse pain is dealing with Costochondritis pain and my Cranialcervical Instability pain… Yikes! Or how about the burning sharp dull pain in your wrist from just holding your phone up while scrolling? That’s always fun… 🙄 What’s helped me the most for my pain is being on Low Dose Naltrexone (3mg). Omg it has made all the difference and it makes the bad days feel far less worse. I have hEDS.

I know exactly what you mean when you're talking about the sharp pain that comes on suddenly when you walk! i get the same thing. it sucks so much

I have suspected I have hEDS for a while now (I have an appointment with a specialist after the COVID crisis). But I was always confused because I only have had confirmed sublaxation in my jaw and one full one in my pinky. But the way you are describing the pain you feel that you suspect our sublaxations was really an 'omg, that might be it' moment. I recognize so much of what you are saying and what I see in the comments. I really hope to have answers soon.

With the arm raising thing: I remember getting in trouble with my teacher for "wanting attention" by swapping my arms often. No, they just hurt CONSTANTLY and keeping them up for longer than 20-30 seconds is awful. This was about 13 years ago and I am only just discovering that that isn't "normal" 😂 ALSO THE SHOOTING PAIN IS DISGUSTING. I was having it in both of my legs all day today because I had the audacity to stand up a little hard

I also go EDS! I get the same pains, but i sublax my elbows, hands and left ankle more than anything. One thing that's different is I my neck pain is in the back of my neck and if I'm sitting up right or driving for a long time it'll start to ache real bad. One thing that is really bothersome is that when my fingers dislocate they get super weak and refuse to grip things. But yeah, it's so interesting and comforting to know other people have the same pains as you!

100% understand that random sharp pain you're talking about. I get that frequently and it takes my breath away. For example, I was walking with my children through the woods, and all of a sudden it felt like the bones in my two toes were broken. I couldn't bear any weight on them because it was excruciating. I sat down, and ran my hands along my foot and out through my toes while pointing them a few times, and tried to bend and flex them. Then i got up tried to walk. Pain still there. All the while hearing in my head all the lovely "compassionate" people over the years who have said, "It's all in your head, drama queen" or "It's just because you're out of shape." Sat down again. Repeated the massage. Walked a bit, then something "snaps" and my foot feels completely normal again. (As I'm typing here, my left pointer finger is cramping up into pain, so I stop and crack it but it's seizing up, so I'm done.)

I've been diagnosed with fibromyalgia and sjogren's syndrome and your descriptions of pain sound almost exactly like what I experience! I've always been wondering if I have another condition going on too

I also have hEDS. I also get electrical type pains - like pins or skewers stab but with electricity. Another pain I deal with is costochondritis, my ribs and sternum can hurt so bad. It’s usually a mixture of the muscular and electrical pain. By the way I followed you from Jaquie’s page.

This sounds all too familiar, one of the things for me is how constant I'm in pain, like there will be days where it's not too bad pain wise but the fact that its not going away any time soon makes it feel 1000× worse than what it is...don't know if that made sense but this video made me feel better about how I describe my pain to other because this was pretty spot on

I can relate to all these types of pain. In addition, i get pain that feels like certain muscles seize up and just wont let go (especially around my hips). And straining pain. There are just certain movements that feel like they put a lot of strain on my joints. Its not really painful, but certainly uncomfortable.

I am so disappointed about the cdc and their pain medication breakdown. My pain management doctor has cut my meds by 2/3rds. I was functioning pretty well but now I am not able to do hardly anything. I sure hope they get it figured out. Thank you for posting. I have had EDS all my life but only got diagnosed a year ago. It was the best day when I finally got the diagnosis that made everything I have been going through finally make sense.

I describe the pressure pain you get in joints as feeling like the cartilage is inflamed or something is in between the bones pressing on them

Sometimes I just have a sudden pain in my wrist and it gets stuck in a certain direction so I have to pull it out and put it back in

I’m so shocked that I’ve been looking into EDs and I am planning on seeing my doctor about going for a test to see if I have got it. I feel all the exact same pain you feel, and the sharp pain is awful!!! I couldn’t walk the other night because the pain got so bad but in the morning I was magically fine again. I hope that I get some clarity on my issues and even if it’s not EDs I hope they can tell me what it is.

I have not been diagnosed (yet) but have been do a lot of reading and watching videos after I made a few comments about my body etc and a woman in Berlin said it sounds like you have hyper mobility issues. Now, and this video was good because it sounds like me. I call the random pains nerve farts (like brain farts). I do have high tolerance to pain because I keep moving lol. Thanks for the info and I’ll keep watching.

Wow. That walking, sharp pain is what I'm experiencing like every day...

Thankyou Izzy for explaining the subluxation in the fingers I’m having it currently on the fingers and on my toes And tell me abt achy joints - and not wanting to do anything - no you are not an idiot - I’m so proud of you for focusing and talking sbt this - I can’t do it

Hi Izzy, i just saw your video on eds... Thank you explaining so nicely.....i noticed you mentioned u get stomach pains.... Please get that check out as well as u have eds as.ppl with eds tend to have gastrointestinal issues ....i suffer from eds too. I have constant headache, pain at the nape of my neck n shoulders,my knees, i can't stand for long time... I also get random sharp pains at various places in my body... :(

Oh your description of that constant, never ending pulsing pain. Yes. 😒 Ooooh I just got up to the sudden unexpected intense pain... It has literally dropped me to my knees. It's SO painful! I get it in ankles, achilles, foot arches, hips, neck, and ribs. Oh and thumbs. Ugh... It's literally nauseating.

Same for me. I would just add the burning type of pain (it feel like a few days after having burning yourself, without actually having burn yourself). And the flare up one. The flare up one is like the first one you describe but when it get incredibly worst, I dissociate both because they don't impact my life the same way at all.

I'm still not sure if EDS is what I have especially since it seems to focus a lot on the skin elasticity thing but man I feel seen having watched this video.. my worst pain is the sedentary pain and I don't even have a very sedentary lifestyle now compared to a few years ago. got tested for rheumatoid arthritis which was negative and I actually nearly cried since I was so hopeful to finally have a solution..just had a quick 1 sec dull pain in the joint of my big toe as I'm typing this lol. need to watch more of your videos asap. thank you

Yes! Every single thing, yes!

Wow, yes. So I haven't been diagnosed yet, but I very much "get" all of your descriptions. Especially those really weird sharp pains that just come out of the blue, are really strong and hurt like crazy, but then can just disappear just as quickly. That has happened today at the bottom of my knee when I put weight on it while stepping (when knee is straight). I also will get that super sharp take-your-breath-away pain at my groin (SI joint perhaps?), and it literally has me stuck and I can't move, and have to take like minuscule tiny movements and then just like that it can go away or else it can come back quickly (but I have found with that particular pain, it usually goes away after sleeping overnight). Also has happened with my big toe, where I'm just walking, not jumping or putting unusual weight on it, and it'll all of the sudden hurt like crazy and I can barely put any weight on it at all for maybe a few minutes, maybe a few hours, or maybe several days even. So so weird. I also get the chronic lower back pain. I don't get shoulder pain or jaw pain, though do have tight upper shoulder muscles that spasm at times. I don't know if I have EDS hyper mobility (hoping to find out more in July at an appointment), but just finding someone who I relate to is so... validating? Makes me feel not so weird! :)

I've never heard all this explained better! I have all those pains constantly plus intense burning somewhere on my body at all times. I'm pretty new to your channel and haven't watched a whole lot of vids so maybe you have one on this topic already, but I was wondering if you've had any kind of experiences with chiropractors and what you're thoughts on that would be. I've been through several and they always stop working on me because they can't figure out what my problem is, and the last one I went to I think made everything worse, and same for my dad. But, so many people ( not knowing my problems specifically ) have told me sooo many times to see chiropractors for my pain and subluxations thinking that will make it all better. Anyway, if you don't have any experience or thoughts, that's fine, I was just curious.

So much of most of these today. I'm getting the stabby kind from just trying to be lol I sit and if I lean, boom. stab in the hip from what feels like a ligament moving the wrong way. Lower back fatigue from trying to sit as center as I can. Whole body and mind fatigue from just trying to keep going and be productive when everything requires such intention and thought to just be. lol one of those days, right?

I get pain standing& sitting too also bending! I get spasms in my back, toes & butt cheeks! I don’t have what you have but I have fibromyalgia, Restless Leg Syndrome & Chronic Fatigue Syndrome and I might have hyper Mobility too! Thank you for sharing information!

Thank you!!!

Rolled over last night and had a sudden, super sharp pain in my ribs. It was do shocking I couldn't go back to sleep. I would compare the pain to getting a "Charlie Horse," but it's at random. I also get big shoulder pops that aren't super painful at first, but cause this awful radiating pain later that can be so bad it's immobilizing. I get snapping hip too, but that's gotten less frequent with physical therapy. I totally hear you on the all over super achy pain. I was initially diagnosed with fibromyalgia but later with hEDS. I have to shift a lot just to get comfy (IF I can). Anyway I super relate to this video and appreciate that you took the time to relate. Do you ever get those big pops that later hurt a lot? I think those are subluxations but I'm not 100% ... This whole journey has been weird and confusing. Thanks again!

I don't have EDS but I do have rib pain that I deal with (not diagnosed with anything, and not in a position to see a doctor so I'm just sort of coping). It's generally a dull pain that can be anywhere in my rib cage, not a big deal, kinda like a constantly moving, fluctuating headache but in my ribs. And then few weeks ago, my ribs decided to slip out of alignment on my right side (again, no doctor, but you can definitely feel when things aren't lining up...), specifically my false ribs slipped back a little and slightly up. After a week and a half I was able to pop them back in line and get them to stay there. Some of the days were agony, pain clear down that side, but some were just painful. When they were back though, it went back to normal. A few minutes ago, I felt my side (there was slightly more pain that normal) and noticed one of my floating ribs felt a little uneven... Here we go again!

When I started not being able to walk I have and do still have pain where it can feel like it is sharp but at the same time it will feel numb all at the same time. There are times when I can without warning get a feeling like a needle will appear in any of my fingers but it doesn't feel like it was pushed into the end of my fingers. That sharp and numbing pain will travel up my arm and stop somewhere between my finger and shoulder and start instantaneously will start from anywhere near the upper leg and go down to my toes. The pain can go down ether of my legs at random. Some of these pains can last just a few seconds or it can last at least a good hour. This is just some of the pains I do get. Another pain I can get without warning is I can stretch and out of the blue ether one or the other of my legs in the calf area will feel like someone just took my leg in that area and twisted it and it is not only a sharp pain but it can feel like that numb feeling as if you stuck your finger in a light socket and got that electrical shock feeling. This can last at least a good 10 to 25 or so minutes. This can happen when I wake up and I would normally stretch my entire body or when I naturally would want to streach my entire body even throughout the day. This not the full scale of what I do go through with my Spatial Diffused Global Weakness and my other Disabilities.