Painting My Pain: EDS (Ehlers-Danlos Syndrome)

Painting My Pain: EDS (Ehlers-Danlos Syndrome)


by simply looking at me you wouldn’t
know that I have ehlers-danlos syndrome you wouldn’t know that I deal with
chronic pain and that in every single moment something hurts my jaw is one of
my most painful spots it can hurt when I’m doing absolutely nothing but
typically what sets it off is lying down chewing opening up my mouth and singing
my neck pain can come at any time but singing and talking are huge triggers
for it due to my muscle tension dysphonia my chest tends to hurt
typically around my scalenes but also just the entire chest itself and this
tends to happen when I wake up and also whenever I’m holding something that’s
heavy my shoulder pain is probably the worst pain that I can get in my body it
also comes along with my neck and jaw pain the pain in my shoulders is mainly
in my traps and also around my shoulder blades and this pain also creeps up into
my neck and so I end up having a lot of pain in
the traps in my neck I go through phases where one of my ribs will so blocks
sometimes it’s multiple but usually it’s just one at a time and this could stay
out for just a couple seconds or it could be a constant battle trying to put
it back in place for weeks my stomach hurts when I eat due to my gastroparesis
my arms hurt when I do a lot of daily tasks such as lifting things and
brushing my hair there’s a little bit of pain around my elbows because they tend
to click out of place when I straighten them and were sometimes they just feel
like they’re out of place and I need to just click it right back in and that’s
pretty painful but it goes away now my left wrist is particularly bad and it’s
much worse than my right wrist the pain is located in very specific places on my
left wrist whereas my right wrist it’s more diffuse I tried to make the lines
pretty clear so you could see exactly where I experienced pain in my wrist and
most of the pain is due to mid-carpal instability and other
types of instability that I have in my wrist my fingertips can hurt because a
few of them will slip in and out of place not badly you honestly can’t even
see that they’re out of place but I feel it and then I have to push it back in I
feel a pop and the pain goes away pretty quickly after that I have very similar
arm pain in the right side as I do on my left but my right side does have some
differences I’m a righty so when I tend to right it could really hurt my forearm
and my wrist and my thumb and just my hand whereas I don’t have to really
experience that on my left hand because I don’t write with my left hand
basically ever pain in my lower back was actually one of my first bad symptoms of
EDS it started somewhere between 10 and 12 and it would hurt every time I sat up
without a good backing on a chair or if there was no backing at all it still
happens but it’s not nearly as bad as it was also my SI joins tend to pop out the
moment that they pop out it really hurts but if I can get it back in or if it
goes back in on its own then the pain really subsides my hip flexors hurt
sometimes when I walk or if I keep lifting up my leg say I’m doing an
exercise or something also the actual sides of my hips hurt a lot of times
when I’m walking in standing and that one is this kind of unavoidable it just
happens quite often my legs hurt a lot so let’s start off
with the IT band I have a lot of pain there no matter how much I roll it it
only helps a little bit I have a lot of pain in the backs of my knees either when
I’m walking or especially what I’ve been standing for say about 10 minutes all
around my knee can hurt there are probably 20 different spots on my knee
that hurt and it’s hard for me to think about each individual spot so I kind of
just circled the entire knee and tried to make it darker in the areas I know
there’s a lot more pain my left side is somewhat similar to my right side but
the pain in my left side is usually worse than on the right especially
around my knee my calves hurt a lot when standing they usually don’t hurt that
much when walking though every once in a while a certain area of it will hurt and
I just don’t know why but standing is a huge issue with my lower legs my ankles
are a little bit unstable obviously I have EDS but it usually causes a certain
area to suddenly just start killing every time I take a step or put any
weight on it and sometimes this thing can last for two minutes and it goes
away and all is good but sometimes they can last longer and that’s kind of one
of the main joints that just leaves me stranded that and my knee the arches of
my feet can really hurt I have very flat feet and they pronate so I have
orthotics which definitely help also sometimes my toes can hurt especially if
they’re being hyper flexed or hyper extended depending on what I’m doing
looking it up and down it is a lot of pain spots and to somebody who does not
have EDS or another painful condition it can be pretty shocking to understand
that I’m constantly in pain and that all of these different areas can hurt
especially when they aren’t really injured per se but that’s just the
nature of ehlers-danlos syndrome and chronic pain and chronic illness I think
one of the most important things to take away is if you see me I look healthy you
wouldn’t know that I experienced pain and all of these different places
chronic illness and disability affect people of all ages and all different
looks

100 thoughts on “Painting My Pain: EDS (Ehlers-Danlos Syndrome)

  1. this is so powerful!! such a creative and helpful way to explain what it’s like to have EDS❤️🦓💪🏼
    this needs to become a tag!!

  2. It's a living version of those anatomy diagrams that we're asked to circle problems areas on! What a creative idea. Thank you for going to the trouble to do that for viewers.

    My pain map is not identical, but would be similar. I have a tremendous amount of pain in my entire head, scalp, face, temples, jaw. I did years of gymnastics and skiing, including a neck injuries that undid me. I urge all of you to please only do low-impact activities. Had I known what was harming me, I'd have given it all up. We have to take care of our "vessel". As a kid, I used to imagine being able to float so that no pressure was put on any part of my body (or being a brain in a jar). Those weird kid ideas make sense in retrospect. God bless you, Izzy, and all others supporting loved ones or suffering personally.

    'And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: '
    Romans 5:3-4

  3. Omg I relate not with all but most because I have suspected eds and am getting tested soon also love you Izzy ❤️❤️❤️

  4. Izzy! You basically just painted my exact pain! This was an excellent video and I think it will be super helpful for others to have even a tiny understanding of EDS. 😘

  5. Izzy thank you so much for “painting that picture” for all of us. I admire your drive and inspiration to help people. 💜

  6. Thank you for sharing a physical visualization of an invincible desease. I hope you dont mind, I shared your channel everywhere.

  7. Ever since I was a child, standing and walking amd sitting for any length of time cause me a lot of discomfort and pain in my back. It's manly in my lower middle back (I can't remember what it's called) but I also get pain in my upper back. It's gotten much worse as I've gotten older. It's to that point now that I can't evern get out of bed on my own. In the mornings I need to crack nealy all my joints back into place. My left shoulder makes a weird clunking sound when ever I try to pull it back, It's very painful. It sounds kinda like my shoulders blade is grinding into something. My hips pop out and most of my joints move.

  8. Thank you i find it really hard to explain my pain to others and you have just said it all in 5.39 minutes i have most of the pain spots you have but my right side is my worst. Thank you again

  9. I am literally crying. I can relate to all of this so much. And people don’t know how much everything can hurt. And when I’m saying that my shoulder hurts, my knees, fingers, and hips hurt as well, but now as bad. And I don’t think people see that. And I’m really gonna show this to my friends. I think it could really help them understand, thank you.

  10. this is a really cool concept. often 'seeing is believing'. when you painted your knee, mine started spontaneously hurting! like, it does that, but it was funny. 😀 do you get different colours of pain? mine tend to be either white, black(ish) or red. white is the worst, like drilling into a nerve at the dentist, quick and sharp and unbearable. black is lack of oxygen type of pain and red inflammation.

  11. What a clever way of showing folk where it hurts and how you’re affected. Great job Izzy cariad! xxxxxx

  12. Great way to illustrate your pain. I don’t have EDS but have other chronic conditions causing pain, and it seems difficult for others to comprehend how pervasive & nearly constant it can be. Thanks for spreading awareness!👍🏻😊

  13. Hi Izzy. Thank you for giving us a glimpse in your life. I'm sorry that you're in so much pain. I wish the doctors could help you. I suffer from migraines because of my brain tumor. It's intwined in my brain and they can't remove it unless it starts to grow. Then I would have to have the Gamma Ray Knife treatment. Plus I hurt my back a few years ago so I'm in pain from that. Sending you lots of prayers. I hope you will have a great day. ✌🌅🌺

  14. i dont have eds, and i dont think i do but i relate to so much of this. the ankle thing? happens everyday. im in constant pain and no one realizes how bad it is. except people with chronic pain i guess. thank you for this video

  15. IZZY!! YOU DID IT!! YOU MAPPED MY BODY FOR MY FAMILY! I can never thank you enough. Although my entire jaw is red as my TMJ cause me to slip a disc.
    I am so happy I found you. <3

  16. This video made me happy first but then towards the end it made me really sad,… Sometimes I wish I did look like my joints were red or something, cuz it's hard being like "I'm in pain" and nothing to show for it… I'd often just be laughing when I'm around people and I hurt something, or pop something out,. I don't even know why I do it, cuz if I was alone I'd be bummed when I hurt something… Defense mechanism maybe?

  17. My shoulders are the worst too. They always hurt… Always, and it's from bad to unbearable.

    This is a fantastic video!!!! Thank you for showing what it looks like. It helps people see what is invisible!

  18. This is SO beautiful ❤️ I am grateful to have a supportive husband and friends when it comes to my hEDS but it is really hard to sometimes get across to them how much pain I'm in every day especially when, like you said, on the outside I appear to be healthy. It's also difficult missing work (I'm a graduate student) due to pain because I rarely talk about how I'm feeling at work as to not dwell on it and then boom I'm past my threshold and I can't go in…and this can seem very sudden to an outsider looking in who has seen no limp or other external sign of pain. Thank you for making videos. 🦓

  19. Izzy! This video was amazing and was super helpful to show my friends and family because EDS isn’t a visible disorder. You also have a lot of the same pain locations I have When I showed my friends this video they asked how I deal with the pain? My response was you learn to embrace it, because you’ll be in pain no matter what might as well concur it before it concurs you. People with chronic illnesses or pain disorders are tough as shit💛

  20. This is why when doctors who do not understand EDS ask what hurts, I'm at a loss for words and say, "everywhere."

  21. Hi Izzy, first off sorry for the loss of your friend, she was a good source of information to a lot of people and looked like a living and fun person who lived life through the pain and still could smile. Anyway I have a question, I have most of the same pain symtoms you have discribed here and I would like information on how to get one of my many doctors to check for EDS? I have so many other problems but this could be what I have instead of a few things I have and less things the better lol. And does a heating pad help with your gasteoparesis pain, I am always hugging mine lol. Keep being positive! 😊

  22. I’m currently going through the Eds diagnostic process and your videos have been such a great method of support! It’s like you’re speaking directly to me. Thank you for what you do.

  23. Wow I have a lot of this but not diagnosed, doctors are having none of it, going to see a physio tomorrow which will probably be another waist of time. So difficult to get anyone to take it seriously.

  24. Izzy your amazing! I also have an invisible disability! The painting of your painful area's was a brillant idea! There are times when i wish people would understand! I would not wish a smidgen of pain on anyone! So the only people that truly get it are those that also have cronic pain due to whatever they have going on in their bodies! Your light shines so bright! Keep shining! Big hugs & be safe!

  25. Hi Izzy! I just got back from PT and was diagnosed with gHSD, even though I believe I most likely have hEDS because I have the signs that aren’t just hyper mobility. You’ve helped me realize that I shouldn’t be compliant with my constant chronic pain, and that what I’m feeling isn’t natural. Also, I completely feel this entire video!!!

  26. I have a pain management appointment tomorrow. I'm considering painting my body in a rainbow of colors, and handing them a color-coded chart for reference to what type of pain I experience in those areas. I hurt everywhere, but each spot has its own unique type of pain.

  27. I don't have EDS, but I do have a few painful areas in my body that people don't often see either. It's great you're bringing awareness because not many people understand, sadly. I have TMJ issues from horrible teeth grinding. Clenching the jaw and moving it side to side all the time in my sleep exhausts the crap out of the joint, and so it is sometimes clicking, grating, and in dull pain. My dentist wanted me to get a night guard. It's a pain in the ass! Also, that pain on the outside of your hip and the IT band stuff you're going through is called snapping hip syndrome. Another thing I have, but my case is mostly painless. It's caused by tight IT bands, which I've heard you mentioned that in a previous video.

  28. I wanna try and see if EDS is something I have become I have a lot of similar symptoms as others with it, say if I do have it I feel that would answer so many of the things wrong with me. BUT the drs were I’m from don’t even know what EDS even is and the last time I was in the ER they said “so there’s nothing wrong with you but your throat will continue to swell and it’s really pussy” dead ass that’s what she told me, I’m not really happy about it cuz it makes it difficult to breathe sometimes. I don’t even really know the first steps of trying to get diagnosed with these stupid people here. None of the meds I’ve ever been on have worked they always make everything worse and I’ve been like this for the last 16 years. We don’t have good insurance anymore either so it makes my mom very very pissed off when I ask to go to a dr that’s not in my town.

  29. This is one of the best wways I have ever seen this shown, it puts it into visual way of expressing to people how many different parts of your body that it effects on a daily basis. I have never been diagnosed with EDS but I do have chronic pain and osteoarthritis and pretty much every place you painted on your body I have paid in those same spots so I can totally relate to your pain and I wish there was a way to take away your pain cause I know how it is to live in pain everyday and to have that pain all over your body. Thank you for making this video it was very helpful and eye opening!!!

  30. Hey there Izzy! Hope you are having a lovely day! I am getting tested for EDS this Thursday. Thank you for sharing your story. <3 Imma post new vids in July! Maybe we can meet up sometime and share stories together. Keep up the great work 🙂

  31. Can I ask a few questions? I was just diagnosed I’m 32 years old. I take cymbalta 60mg , helps a lot and I know you take it also , what is your dose ?
    What supplements do you take ?
    Are you gluten free?
    I am starting a regimen of vitb6,vitb12, chelated magnesium, tumeric , and zinc. It is a lot of supplements and there are even more recommended, like salt or glucose tablets ? I also have inappropriate sinus tachycardia which is similar to POTS , I take medication as needed when I have an episode, do you do physical therapy? I’ve done PT for multidirectional shoulder instability but didn’t help that much I still have soo much pain , also my shoulders hurt the worst out of all my pain points !

  32. Thank you for bringing awareness to this. I have chronic pain as well, from a multitude of conditions.

  33. I have lock jaw and loose jaw. The left side my my jaw locks up and unhinges a lot of times and I’m scared to move my mouth a lot. My joints (especially knee caps and wrists) move out of place. I have no clue what it is, besides my knee caps. The muscles of my knee caps are loose and the next time they pop out I have to get surgery. Walking a lot and doing long activities make them hurt super bad. My shoulders, mostly left, lock up or pop out of place sometimes. It sucks, and my lower back locks up. Making me walk like a grandma until it loosens up. It also hurts badly. I’m not even sick or anything. It was from all the sports I did back in middle and high school. I now live like an old person sometimes lmao. My gramps and I complain to people when we are in pain and then high five each other as a joke.

  34. this was such a good idea so people can truly understand how bad it can be. I have been fighting for a diagnosis because of you and one specialist who suggested that might link all me problems together one doctor said I meet all criteria for HJS but didn't know about EDS enough to go further. thank you for sharing your experiences people are starting to listen as I get more and more educated. if ever there is something I could do to help you even a middle of the night chat please feel free to reach out thanks again

  35. Hi Izzy, I hope you are doing well. This is a useful video actually as I am due to see my rheumatologist and a geneticist shortly so I may complete a diagram like this, rather than marking with an X, I will use your technique to colour it in which will in turn be more specific about the area 👌

    Can I ask, do your knee caps slide on and off sideways? I have a lot of trouble with my knees (left pops out super easily). The pain behind both is shocking. My hips are very unstable and make walking really hard as I often go to swing a leg and it’ll lock wherever it is. If I’m with someone it’s a case of ‘hang on, explain what’s happened, do a little jiggle and it goes back in. When I’m alone I must look like I’ve peed my pants or something. due to the manoeuvres I have to go through 🤣 I pretty tick all the same areas as you apart from top of the chest. I am getting a second opinion on another diagnosis I received of Ankylosing Spondylitis just to be sure to be sure. I certainly fit the criteria. That is what I think causes me the most consistent and truly heavy duty pain (in my buttocks up to and including my neck). I’m so confused with what is causing what and still searching for that EDS specialist. I’m have chronic migraine approx 5 days a week so I get so stuck at home because they are debilitating. Just about to start cannabis oil but putting it off whilst I have a few appointments I have to try get to myself. Once I am on it it is illegal to drive here in Australia (I assume the same in the States?)

    Can I ask you are willing to chat eg via DM on Instagram or Facebook? I have so many quotations. If you are message me on my Instagram (same user name as this one and if we can either chat there a little or I’ll give you my private Facebook page which is in my name). I’m feeling really alone on this journey right now, truth be told, I am literally alone. My son moved out a couple of months ago and I don’t have a circle of friends here (partially due to us losing touch when I had to stop working and they’re my age so they have their own lives with kids and husbands and work etc.) I also don’t have any family here as I emigrated with my son 16 years ago. My apologies for turning this into a pity party, I could just do with running a few things by someone who gets it 🤷🏻‍♀️ Totally fine if you are unable to, I know you have a lot going on too. Regardless, thanks for the video and much love from Oz, Amanda

  36. I have EDS and I have a question. I noticed your jaw sits more to your right..Does your jaw sublax or dislocate alot? Mine does, I get the pain you mentioned in my neck, shoulders and upper back. Sometimes it's my neck, but half the time it's my jaw that is sitting uneven or dislocated. Once I put it back in place, most of the pain goes away and my headache too. I was just wondering if you have ever tried to readjust your jaw?

  37. This was an AWESOME way to explain your pain…I am so sorry you are going through all of this…I have TMJ…2 herniated discs in my neck and 2 broken vertebrae in my lumbar and a broken tailbone…PTSD…Depression…osteoarthritis and fibromyalgia…migraines and severe neuropathy from the waist down…it sucks…..I have to go for my yearly MRI next week and going for a bone density test at some point…all due to a serious car accident with The City of New York Health Department…the driver was on her cellphone and not paying attention and crashed into the passenger side of the car which I was a passenger trapping me in the car…i it was a horrible day…I have feet and hand swelling especially when I am first wake up and before I take all my meds…I am on so many meds I should open a pharmacy…sending lots of love to you from Long Island,New York❤️

  38. This is a great video! I’m not diagnosed with EDS though many people seem to think I have it so I intend to see my doc about it for an official exam and diagnosis if they believe I have it. I do have a fibromyalgia diagnosis along with IBS and chronic migraine though which lead to pain pretty much everywhere. I’m 22 and everyone expects me to be this healthy young person but I’m really not and it can be hard trying to get people to understand. Unless there’s a way to physically show the pain, people are just oblivious.

  39. I never knew why I was always in pain…I just thought it was part of me growing up until I was recently diagnosed with this disease….thank you for this great video and showing everyone what we really go through on a daily basis..

  40. Oh my gosh, this was immensly helpful!!! Its crazy to see it laid out like this, and to see you all painted knowing I have 75% of the exact same pains (not so much in my hands). Thank you for doing this!!!

  41. I was diagnosed with joint hypermobility but EDS fits so much better. My skin is getting stretcher, cramps are getting worse, but I cried watching this because the pain is almost exactly the same as mine. My elbows and shins hurt tremedously.

  42. I don't have EDS but I have fibromyalgia and I'm in constant pain and people don't understand because it's something you don't show. I admire your strength.

  43. I love this video!! It really puts the pain in perspective. I have psoriatic arthritis, GP, liver/biliary/pancreatic disease, migraines, and my rheumatologist suspects EDS as well. The struggle is real!

  44. Next new doc I go to I will show this video if I need to or maybe I will go in painted up. Can you imagine the looks, it certainly would make a good ppint, sadly some docs just want to overload one with drugs only making many things worse, I am selective and save it for my moments of I can't tolerate it or sleep.

  45. I t hink this will be the first comment I place on YouTube in a decade….
    1:12 you say something about your ribs blocking? Can you explain this? I have sudden weird pains there at times and can't place it yet- maybe this might be it.

  46. Izzy, this is such a wonderful video. I relate to all the pain areas, but this does show that sometimes you can’t see illness, you can’t see pain. and that’s a topic i have such strong opinions on cause no one ever notices the pain.

  47. Hi Izzy, my name is Brittany. I was diagnosed with Eds hypermobility last year. It all started to make since to me once I started researching about it and look back on my life since I was a child. I'm 28 years old now. And since last year everything has gotten so much worse. I hurt in the exact same spots as you and in so much pain everyday. Although just like you said people will look at me and think I look fine and healthy but it is so hard because nobody understands how I feel. It has taken a lot out of me because it is so hard for me to do the things I love doin because of the pain, and dislocations. I'm in so much pain when I wake up in the morning that I can't even move. It is so hard to deal with but your channel really does help to know that there are other people in this world that understands just how I feel and what I go through everyday. Thanks for what you do and keep makin the awesome videos to help people understand Eds more.

    Much love.

    Best wishes!

  48. This is so informative, and…can I say humbling…? Heck, I'll just say it! You give new depth to the proverb, don't judge a book by its cover.

  49. Posted at https://www.facebook.com/groups/EhlersDanlosHypermobilitySyndrome/
    Ehlers-Danlos EDS Facebook Forum : Articles, Papers, Video, Podcasts, Webinars, Discussion – 116 Members

  50. Amazing video! Awesome way to show people where you hurt. Somedays I would have to cover my whole body!

  51. I was stunned watching this, because you basically painted all the places that hurt on my own body every single day. Thank you for making this – it’s a great tool to use to show people the unseen reality of chronic pain.

  52. You just painted every painful spot I have on my body with maybe 2 or 3 exceptions. If I were going to paint my painful spots it would look nearly identical to your paint.

  53. I have all the same pain spots! it’s crazy for someone else to describes the same pain I have daily doctors ignored my pain for years and some people I know don’t understand how hard it is to live with eds like us.Awesome video!❤️

  54. Your pink mapping of hurting areas would be just like me for the majority of my life! Except I have a lot more pain in my spine since I have had 7 car accidents and broke 2 vertebrae. I barely do 2-5 repetitions of some basic simple exercises and I swell up so bad. My new chiro, cardiologist, multiple pain clinics and 30+ years of dealing with this and I am finally getting sent to a genetics specialist. I just hope they finally have something that will help me better.

  55. ahh you tear me up girl. so relatable :'(. hope you were okay doing that hhaha looks painful for someone with eds to reach their back etc you'd probably know haha. <3 thank you

Leave a Reply

Your email address will not be published. Required fields are marked *