The Types of Pain EDS Causes Me

The Types of Pain EDS Causes Me

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Hey guys So I just thought about this and I thought it’d be kind of cool to make a video about the different types of pain that I Experience with EDS because I know a lot of people are curious and have asked a lot of questions on that While trying to prepare for this video I realized how hard it was to be able to tell you the types of pain that I deal with because There’s a lot of different types But I tried my best so I kind of wanted just to break it up into muscular pain and joint pain and I’m not mentioning the other types of pain I deal with such as like stomach pain because That’s just kind of unrelated, but I do deal with that um, so for muscular pain I can think of like two main different types of pain that I get. The first is me doing something That’s like causing strain on the muscles. So for example if I raise my hand in class Everybody’s arm gets tired like it’s normal, but mine Progresses a lot quicker than anybody else’s so I might raise it for like 10 seconds and I start to feel pain and or I start to feel tiredness and then 20 seconds later if I’m still raising it like it’s painful and I guess it’s as if like maybe you were doing it for 15 times longer, you know what I mean? Like like I’m assuming it would progress to pain for a normal person, but maybe it doesn’t. I don’t even know but like it is painful, but it goes away a little bit after I You know stop doing whatever I’m doing So that’s like the first type of pain but it comes in on so many different circumstances like standing walking You know using my arms especially. Talking ends up hurting like these muscles in that same way. It’s almost like muscle strain That’s kind of how I feel it it like is that’s kind of what I feel like it is The next type of muscle pain is what is it? Like Pain that either is associated with muscle tension or with something. I’m not even sure But this type of pain is constant sorry, like when it when it on sets it’s just like constant pain so that type of pain usually occurs in like my jaw my Neck my shoulders my IT bands the arches of my feet Like my back, oh my god, yeah and places like that and I don’t have to do anything for it to start like sometimes it just starts and That type of pain is usually the worst type of muscular pain that I get and the worst is usually in my jaw and my neck and The only way that I can think to describe what type of pain it is because that’s not dull. It’s not aching It’s not like yes, I do get aching pains and stuff. But like and it’s not sharp It’s like if you think about when you have a headache great you know how it pulses now pretend that it didn’t pulse and The pain that happened at each pulse was just like a constant pain, right? So it’s not pulse pulse pulse It’s just a constant pain and put it in a joint or a muscle like that’s kind of what it feels Like I think that’s the best way I can describe it to something that I know normal people experience Yeah, I’d say that’s the type of pain And for this sometimes Advil could help me sometimes nothing helps Heating pads can sort of help things like that but this is like a very common pain and like I deal with it every day So now I want to move on to joint pain and I’m looking at my computer by the way hence this So there’s a probably four different types of joint pain I can think of that like I commonly deal with the first one is obviously when there was an injury actually, I can think it’s Almost like when there’s an injury so if I’m having a dislocation or a subluxation that usually occurs in my knee every once in a while have like this parts of My fingers like sublux for example, and I’ve had my SI joints sublux, that like hurts, you know But like it’s specific to the injury I can also think of like another to a second type of pain is random sharp pains that I get a lot of times and that Usually happens when I’m doing something or like walking. So this type of pain is very strange. I don’t Understand what the heck it is, and I don’t think any normal person Normal, I mean somebody without EDS experiences. It’s where like let’s say I’m walking I’m feeling great like it I’m not even in pain and then suddenly I take the next step I take I have Terrible sharp pain in like something. Let’s just to say it’s my knee it could be and literally my ankle my feet my knee my hip my back by anything a really sharp pain Every single time I take a step I get that pain and then sometimes, like that Honestly, if that pain was like a constant pain the I would might be screaming like that pain is so painful I even no idea why it happens. I I really just don’t know what it is So sometimes in that instance, I am just like stranded and sometimes that pain could last 10 seconds, like I’ll be taking 4 steps and it only happens and then it goes away sometimes five minutes unless 10 minutes sometimes a couple hours and then sometimes it’s like a couple days and I’m like What did I do? Like I literally was just walking? Um So but usually it’s like on like the scale of like 5 minutes to like a couple hours and It’s like a very sharp and very localized and so I’m like I don’t I don’t know what I did like it’s possible now that I know I have EDS, it’s possible like maybe something slipped out of place But I’m not even sure like it’s really hard for me to tell and I can’t tell that something’s off Like I feel like now that I know I have EDS I’m able to tell that when certain types of pain occur It occurs. It means that something’s wrong So I used to get like and still do pain like sometimes in my DIP joints of my fingers In these top joints, and I didn’t know why but then maybe like was it maybe eight or nine months ago? I was drawing my hand on a towel and this right here started killing me and I was like, oh my god, and I was like Is it possible that I just knocked it a little bit out of place? It looks normal I took it and I went like this and I heard a big like pop and it felt so much better and I was like, I think that was a subluxation and I would not even have thought to try to do that if I didn’t know I had EDS, so I think that that might be sometimes what’s happening with my other joints when I’m taking those steps and like suddenly I have a burst of pain next I have a pain a Pain when not doing something by that I meant that just like a joint hurts Like it’s it could be the same type of pain as I explained in the beginning like that constant like headache-like pain That’s not pulsing It’s when I’m not like lifting something when I’m not walking. It’s just like an actual joint is hurting me. So it doesn’t matter what I’m doing I could be lying down it hurts You know sitting it hurts the next type in I could think of us like joint aches Um, a lot of times my body just feels achy so every step I take is I feel each joint, you know, and I’m not it’s like I’m not Oh not. How many times am I going to say “not?” I’m not unaware of every joint. Oh my god. Why am I saying it like that? I’m trying to say that I’m aware of every joint because each one aches sometimes So that’s like kind of an annoying type of pain but I can push through it but that’s just the type of pain that makes me be like I don’t want to do anything because like nothing feels good, but it’s not like some terrible unbearable pain, you know I also want to add another type of pain. They’re just gonna keep coming I’m gonna remember a million once I’m gonna put this video up and be like, I’m an idiot Like I just forgot my main source of pain like I know this is gonna happen. But um, sitting and like lying down and like doing Sedentary things that cause pain this is honestly more muscular pain than joint pain Like right now I’m sitting down and they it’s killing my lower back Like even if I were to like I’m always sitting in crisscross position But even if I were to put my legs down and still be there that pain And I can’t pinpoint what caused it other than the fact that it has something to do with the fact that I’m sitting and then if I go lie down maybe my back pain will stop but then my neck pain will start and then my shoulder pain will start and then I have to Sit over here and then over my back again It’s like doing things hurt it but like it’s not doing things like in a strenuous way such as like raising my hand hurts So yeah, I know this video is kind of like all over the place It was sort of just like I’m just like coming up with these out like on the spot But I still hope that I could make you understand the types of pain I deal with and Yeah, even though I know I missed some I’m sorry If you want to tell me what kind of pain you deal with I would love to hear it I’d love to hear if you guys can relate I know that there are so many other issues so many other conditions that cause the Same types of pain but then sometimes those conditions that cause different types of pain So people with autoimmune diseases might feel like itching or burning like pain and like I don’t really get that. So yeah Thanks for watching this video and I’ll see you on another one. Bye

100 thoughts on “The Types of Pain EDS Causes Me”

  1. Look up medical medium on ig, thanks to him I cured my POTS. He talks about the chronically ill and a whole variety of illnesses, definitely worth looking at.

  2. You don't have silversplints for your fingers? It helps a lot for the pain and stability of the hand and fingers. I love them. And thank you for this video!

  3. 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.

  4. I have opposite than EDS type hypermobile, very tight joints, hamstrings, etc. I had an girlfriend once that was so hypermobile, she would drive with her fingers bent 90 backwards on the steering wheel, and it would totally freak me out. Even when doing anything mundane like sitting down, or grabbing something her joints were so loose and would still freak me out. Anyway I can try to understand the pain, from your video, even though I don't have any, that would come from muscles, tendons, ligaments, joints, etc, being constantly overstretched, stressed, and pulled, and the fight with the nerves and pain signals. So sorry.

  5. 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.

  6. What do you do when you’re ribs dislocate all the time like multiple times a day, or you’re hips or kneecaps? Mine do this but nothing seems to help.

  7. 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.

  8. 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.

  9. I'm literally in pain as we speak it's always something I'm 14 and I was diagnosed with EDS in 2017 it's been progressing and my quality of life has been very low and it makes me very unhappy it's been causing depression for me so that just adds to the struggle I'm in a tough situation right now

  10. 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!

  11. 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 …

  12. 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.

  13. 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… 🙁

  14. 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.

  15. Do you ever get the heartburn type of pain in your joints? It feels like you have heartburn but in shoulders/ hips. That’s how I describe it to my doctors.

  16. 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.

  17. Have you tried swimming or other water exercise? That might be a low impact way of strengthening. Just a thought. Hope all the pain goes away! All of it.

  18. 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.

  19. P.E in school is the worst. Yesterday I did a stretching test where I put my heels on a bench, I was on the floor with my legs straight out. I an 6 foot 1. I touched 17.5 cm past my toes. I can't walk properly now. I have E.D.S type 3.

  20. I have neck and back pain since 5 years and now i while ago my fingers started hurting aswell. My rheumatologist told me that i have a hypermobility. Im pretty sure its EDS but he did not mention the specific name but ran all the tests of the EDS criteria. I cant stand or walk for longer than 10 minutes otherwise i get a really uncomfortable feeling kind of everywhere and my knees/ back starts to hurt. I just feel like no one really gets why i‘m always in pain and that things such as shopping are not fun for me anymore. Also: does anyone else have the problem of their neck vertebra(?) not being in the right place?
    Enjoy your day❤️❤️❤️

  21. 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 <3)

  22. Hey the paid you are saying comes from no where and shoots when u take a step sounds like sciatica (sciatic nerve damage) it’s extremely painful and it can be crippling! When I was pregnant I literally couldn’t walk!

  23. 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!

  24. My biggest EDS pain is when my muscles tear when I hyper extend (specifically around my shoulder blades/back). I’ve had multiple surgeries to sew the tears closed (“repair” them) but they just re-tear. :/

  25. Have you tought about anabolic steroids or human growth hormone, this is suppose to create/strenghten connective tissue. Heard many sunshine stories. But you´d have to become a male if you try anabolic steroids 😀

  26. 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.

  27. 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. ?

  28. No one understands how we can be completely fine and then be in so much pain just from walking or doing something. I get sharp pain in my lateral knee that is very sharp every time I extend my leg during a stride. It’s the worst. It will come out of nowhere and completely disrupt me. I was denied disability because there’s no evidence that anything is wrong and I’ll be going back to work soon but I know this and other things will continue to happen.

  29. 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?

  30. 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

  31. 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!

  32. A big one for me and my daughter are our hips, but for different reasons. Like…for me it’s hiking my leg and hip up to get on a bar stool or on a bed…or anything high. I know my hips going to dislocate but if I’m in mid conversation I don’t even think about it and hike it up. Also coming down from something with height…if I don’t do it just right I buckle and I’m on the floor. For my daughter it’s any position of the hip for a long period of time. She’s 11 and I’m 33 so it could be our types of activity. And I don’t mean going to a bar. Lol. Applebee’s has high top tables. Lol.

  33. 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

  34. 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 :)!

  35. I literally ah sorry I’m going through all your videos and I’m about to like cry tbh I’ve always been labeled hypochondriac and people tell me I’m complaining about random pain but I relate to everything your sayingso much so thank you for making these videos I’m going to ask my physical therapist in 2 weeks about it ❤️ also, are there any mental symptoms as well? Just curious

  36. I don't have eds but I deal with a lot of lower back pain. What are things you can do to help your pain from eds other than taking medications for it.

  37. Out of curiosity, my hEDS includes my joints making a fairly audible creaking noise every time I move them. Do you experience that? Occasionally if it isn't creaking it's very loud popping, especially in my knees and elbows.

  38. I have hip dysplasia and when I look at people with hip dysplasia, lots of people seem to have hEDS, so I got curious to search what it was about. I know I should not self diagnose, but lots of symptoms seem to fit me. I am flexible, some part of my skins are super stretchy, everyone always compliments how soft my skins are… and my friends would always pull on my face. I have lots of joint problems so my doctor is currently checking if I have rheumatoid arthritis, I have terrible back pain (upper & lower) neck pain, jaw pain, my fingers are hurting and stiff, both of my knees are painful, sometimes I get this nerve pain down my leg so i can't seem to stand for a long period of time, my ankles hurt too!! sometimes they just bend randomly so I sprain them all the time . Also I get this strange feeling from the side of my rib almost feels like its poking me and when I press them, it moves and makes noise LOL. My sternum cracks too, which hurts a lot… When I get hurt, I get this scar that seems to broaden out, and some scars seem to heal under my skin (idk how to explain) but it gives this dimple looking scar. I get random sharp pain as well (sudden, like nerve pain that someone is stabbing me) I also get random muscle cramps too when I try to reach something LOL…Also when I stand up, i used to get dizzy, but nowadays sometimes I literally kind of fall to the ground (everything turns black and my heart beats crazy fast !!) I kind of mentioned to my family doctor, but he said "nah you dont have EDS, if you did you would be having a lot more problems" I dont ever get my joint dislocated, but it does sublux (my PT told me)… i want answers as to why my body aches all the time.. sigh…. I'm only 23 too…..

  39. 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!

  40. I suspect I might have hEDS because I can relate to most of these and have been diagnosed with hypermobility, but my doctors say that because I am still young it is just growing pains and I know it is so much more than that. My joints are constantly hurting and straining my muscles and all of my doctors (I have other health conditions) dismiss it despite my best efforts. Every single day I struggle with the pain you describe in your video. This is kind of unrelated but… My doctor also says that blood pressure regulations are normal for girls my age but I am constantly on the verge of blacking out EVERY time I try and get up from a sitting or lying down position. Do you have any advice? Thank you!

  41. 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

  42. 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 ???.

  43. You ever get that thing when eating gum for a long time you jaw hurts like hell and certain bites? Or whenever you move your jaw forward you can hear a little squeak noise. Or is that just me. I always get that neck, jaw, shin or ankle pain that’s constant.

  44. 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.

  45. 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

  46. 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

  47. Do you have pots/dysotinomea or mkast I have both. It’s kinda sad because I used to be super active but I can’t anymore. But I was just wondering.

  48. I have all these symptoms and I am very flexible my joints click and dislocate easily. But they have only diagnosed me with fibromyalgia at the moment. I’m sure I could have EDS how do I get tested for this?

  49. I have fibromyalgia and a history of uncontrollable muscle spasms. Something as simple as putting on a shoe would trigger spasms in my foot so bad that I can't finish putting the shoe on and I can't walk.

  50. Hey Izzy! I am just wondering if you have ever used cervical traction devices for your jaw and neck pain? There are some on amazon that are like 30 bucks or less. I'd say they're worth a try. I'm unsure if I have EDS; however, I do have hyper-mobility in my joints. My neck and jaw are substantial issues for me also. Putting the traction device on for like 10 mins legitimately works wonders for me. I usually have neck pain / headaches at some point every single day. Using the device 2 or more times a day; one of the uses always nears about 10 mins while the others maybe 5, can change a bad day into a better one or even sometimes one with no issues at all. They are cheap and look like airplane pillows separated into 3 different inflatable sections.

  51. I understand this. For the past 6 months they have been trying to diagnose me with EDS. I have so much pain on a daily basis that it’s unbearable. I can barely walk because when I put weight on a leg then 5-7 of y joints move out of place and I almost cry. I can’t sit for long or stand for long. I totally agree with the raising hand thing too.

    I’m tired of being told “you have nothing wrong, it’s all in your head” because it’s not. If it was all in my head, would I be having this?

    They also believe my form of EDS that I have causes my stomach to not function properly. They say that my muscles in my stomach don’t work to push the food through my organs so it just sits there. That’s very painful too, believe me.

    Pain meds do not help me. I have a very high pain tolerance yet pain meds have no effect on anything. I’m so used to pain, it’s my life. I completely understand this.

    I am very happy you are telling people about this issue because it’s not commonly known. I’ve been telling my friends about it and what it can cause and they are freaking out. They are happy I’m getting answers though.
    Thank you for making this video. <3

  52. Do you get pains in your shoulder or like your hip down to your knee? I do and the best way to describe them is like growing pains. Sometimes they're not bad but other times it's so bad i have to stop what im doing and sit down.

  53. These pains are all really relatable to me. When I was younger I dislocated something in my back and couldn't go to school for months because i just couldn't move, a few years later I felt that pain again but more extremely. I dindn't do anything weird, I never experienced that type of pain. At that time I explained it just as someone was pushing so hard constantly, but I think you can explain it more like that part of your body is just getting riped out of your body. Know what I mean?

  54. 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 ?

  55. I am so scared, I went to the doctor because of my joints and they are testing me for EDS, and I am in so much pain but I really don’t want to have EDS I just wanna be normal and live a pain free life I am so scared that I will be diagnosed with EDS and I don’t know what to do help meee

  56. 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.

  57. How about the cramp with no muscle contracture… I get those in my shins and forearms and I wanna scream. No stretching will get it to stop…

  58. I used to get that sharp pain in my knee and I would have to push on it and make it pop before I could make it move again… 8 y/o me thought it was normal lol I was probably popping it in and out of place

  59. 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

  60. What types of nerve pain do you get? My issues are complex and complicated because I have CRPS and my EDS (just diagnosed now) went haywire. My hands feel like they are cut up by razor blades and no one understands why. My body feels like it has been hit by a bus and all my muscles in my body are killing me. Anyone else get these things?

  61. Yeah I can relate to everything

    I also sometimes just wake up in the night with like incredible pain in all my joints and also I get pain in the muscles around my lungs so it hurts to breath I have no idea what it is but it lasts for like ages and you end up hyperventilating bc you can’t breath

  62. 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.

  63. I think that sharp random pain could be subluxation. I get that very often, and maybe it’s not the same thing, but I think it’s from like something getting pinched? Also do you ever get bone bruises or Costochondritis in your ribs? Those are my worst ones lol.

  64. i know that im late on commenting but im verging on getting diagnosed and am seeing a physiotherapist. about 2 years ago i started randomly getting this pain just behind the ball of my femur right deep in hip which feels like a mixture between a cramp and a shot every time i put my left leg back to step on my right and it is quite painful i have to slow down walking. i went to my doctor and he told me to take my already prescribed mefenamic acid when i got the pain and i do but the pain still last for sometimes 10-20 mins. does this sound like the pain you experience? i was really shocked/weirded out because the possibility of hEDS or hyper-mobility syndrome has only been considered for the past year ish despite problems back dating 7 years to when i was nine, when you started describing the pain i was thinking are you talking about exactly what i am? and almost felt like that pain wasn't just a random pain but linked. what do u think? btw i love your vids u really are such a help and inspiration.

  65. 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.

  66. 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.

  67. 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?

  68. I hate that I understand exactly what these types of pain are like. I’ve been in a flare the last two weeks and my body is sure to let me know its displeasure at all this. Pain from eds can be annoying but still we persist!

  69. 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

  70. 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

  71. 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!

  72. I feel all of these and I am not diagnosed with Eds, I can relate to practically all of them, and I am going to my doctor and trying to find a specialist to see my symptoms and get me diagnosed. Any recommendations of what to do or a mobility aid to get if I suffer from weakness and instability?

  73. 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

  74. 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 <3

  75. 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.

  76. 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!

  77. girl the jaw pain.. and those neck ones you mentioned it feels like when you’re trying not to cry but it’s just those muscles ?

  78. That’s how I feel too! Do you get headaches also? Since you mentioned stomach pain as well. Some doctors have said there is a link to stomach pain and Eds.

  79. 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.

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