welcome to the eds club (the club no one asked to be in but life had other plans 😂). i have classical eds, not hyper mobile, but i’m always so grateful to meet other people with the same disease as me. hyper mobile is tricky because they can’t genetically test for it, but you can be clinically diagnosed. i’m here for you and can help answer any questions you might have! side note: your fashion sense is 🔥🔥 and if you ever created a clothing line i would buy everything, just sayin
It’s not official yet but I’m hoping I’m not a part of the club but we will see. Once I get evaluated and see if I have it or not I will probably have questions! Aww thank you! I definitely want to do something with designing clothes down the line I hope I can one day!
I was happy to hear you contacted a geneticist! Rheumatologists (in the US anyway) generally want nothing to do with genetic connective tissue diseases. Check the EDS criteria, it may ease your mind. I hope you get answers soon. The light show was beautiful. I hope you guys have a wonderful Christmas!
That is so good to hear! I did actually check the EDS criteria ahead of time to make sure I wouldn't be wasting my time exploring it and it could definitely be a possibility, especially when looking at my siblings too but some of the stuff is subjective so I am also not sure and of course I keep second guessing myself and my symptoms but I have the appointment scheduled now in a couple months so I just have to wait and see! I hope you have a wonderful Christmas as well!
I hope you get all the answers you need! 🙏🏼 It took me 26 years to get diagnosed w osteoarthritis, 27 to get diagnosed w hEDS (clinically by my POTS cardiologist), 29 to get diagnosed w vEDS, I could go on as most all my chronic illnesses took years to be diagnosed. I wish dr.s would be more educated on illnesses like these, which aren’t as rare as people may think. Wishing you merry Christmas/Happy holidays, dear!! ❤️💚
Thank you and me too! That is such a long time for those diagnoses. More education and awareness is definitely needed for conditions like these. I am also finding that these aren't that rare either! Wishing you a merry christmas as well!!
Hoping you feel better soon. I'm so glad that you made an appointment with a geneticist to be checked for Ehlers Danlos syndrome! At age 21 an incompetent rheumatologist tried to screen me, and my hEDS diagnosis was delayed until age 37 because of him - enough time for a lot of damage to happen due to lack of proper medical care. Please don't feel negative about being screened for EDS! It's important to be screened, so you know whether or not you have it. If it turns out that you do have EDS, it can actually be very empowering - you and your doctors would know the cause of most of your medical issues so they can provide you with better care, you'd have access to physical therapy or other resources to help mitigate the long term effects of EDS, and your siblings would benefit by having an EDS diagnosis in the family if any of them happen to have undiagnosed EDS. If it turns out you don't have EDS, you'll have piece of mind knowing. It's also good news that you're seeing a neurologist for your dysautonomia symptoms. Often they're much better equipped to identify and treat dysautonomia than cardiologists, since many forms of dysautonomia deal with the sympathetic nervous system. It sounded like the cardiologist you saw was pretty clueless and difficult to work with, so I'm thankful you're getting a second opinion! Hoping that all of your tests work out to give you answers and a better quality of life!
I am so sorry it took you so long for a diagnosis. I am glad I decided to ask for recommendations because I have heard not the best things about rheumatologists + EDS in general but I am still so new to this so I wasn't sure. Thank you so much for the reassurance! I definitely know its not negative but I just second guess myself and my symptoms so often and honestly am probably more afraid that it is going to be positive. That is good to know that if I do have the diagnosis I will have access to the resources/treatment. I honestly forgot about that part and was just avoiding being evaluated for so long because I didn't think my symptoms were "bad enough" but I shouldn't let them get "bad enough" before getting help, like you said I don't want the damage to be done when I could help mitigate the long term effects. Also if it is negative like you said I can stop wondering what if which would be so nice. I am definitely curious about my siblings too because they have conditions that came on for "idiopathic" reasons as well. Our illnesses are slightly different but we have always wondered if they could somehow be linked. My PCP recommended trying to see a neurologist so i did and this one was not good, pretty much like my cardiologist but I am probably going to end up asking for recommendations down line for that too. Thank you for all of this information!
Let me say one thing, thank you for being one of my inspirations and someone who makes me not nervous anymore to show off my own disability and my gastropresis!! literally my fav youtuber now keep it up your such a strong girl and your so beautiful so proud of you!!!
Depending on the cause of the pain (if it’s obviously injured or not) I find heat to be quite useful. If it is injured/inflamed then I would opt for ice packs or a deep heat/ice cream because applying heat directly to something that’s inflamed can make it worse. Also some braces can be helpful to persistent join pains, the kind that you can just buy at any supermarket or chemist without a prescription (I’m in the U.K. though)
For joint pain and having big adventures, I would reccomend getting a transport chair. They're much cheaper than other types of wheelchairs, and that way you can sit and enjoy what you're doing instead of having to focus your energy on just getting through. I know that using any type of chair is a big mental shift, but trust me it's so worth it bc you can do so much more without pain and ambulatory wheelchair users are so valid.
Thank you so much for this information! That might be something I look into in the future if my symptoms continue to be this severe when I am out and about. The mental shift is definitely going to be the hardest part but being able to do things without being in a ton of pain would definitely be beneficial
@@KennaKrueger I know I'm a random internet stranger, but if you ever wanna chat with someone who's been through the experience of becoming a part time chair user, let me know and I'm happy to chat via IG.
I've used Donjoy brand knee and ankle braces for years (was a competitive gymnast and am now being screened for hEDS as well) and they have helped a lot with my pain. It doesn't go away completely, but the support helps. Hope you get answers soon!
Epsom salt baths or magnesium oil (magnesium chloride with water) helps a lot with my joint pain from EDS. Hope you feel better soon! Greetings from Austria
I feel like I am in the same boat!! Feeling like I have had these symptoms forever but they are just getting worse. My primary care just did tests and everything came back negative so it is time for a geneticist referral. I just can’t stop second guessing myself and thinking I could be wasting time and money. Hope everything goes okay!!
Wishing you a peaceful Christmas and hoping that you get your diagnosis soon and the right treatment. I do not have Ed’s but another chronic progressive illness and understand your pain x
Thank you! I hope you had a peaceful Christmas as well! I am sorry you have a chronic progressive illness as well. It is hard but we are in this together!
You seem like your symptoms are very similar to my sisters, she recently was diagnosed with MALS and SMAS, it doesn’t hurt to seek further into these diagnosis although getting doctors to diagnose either syndrome is like pulling teeth but it can be especially liberating to finally receive answers.
Yes. So glad you are getting on the path to some answers! I need to get into a rheumatologist also but haven’t been able to fit the schedule! Thinking of having RA or EDS scares me to death but I know I have joint pain. Hope you find some relief
Yes it is so scary, but definitely worth investigating because I prefer to have a peace of mind and not wonder what if! I hope you find some relief as well!
Merry Christmas I think I’ve told you or I may not of I got diagnosed with EDS hyper mobility one But he didn’t remove my fibromyalgia diagnosis which I thought it was one or the other … I’m going to watch your video on my tv so I wrote on here first love your channel have a wonderful Christmas and new year x
Yes, usually a hEDS diagnosis will supersede a fibromyalgia diagnosis, since hEDS would explain the chronic pain. The fibromyalgia diagnostic criteria may have been revised to allow both to be present, but it often seems like doctors aren't all on the same page as to which diagnostic criteria to use for fibromyalgia.
I don't know too much about hEDS or fibromyalgia yet but as someone else replied to you I definitely feel like hEDS would explain a lot of your symptoms if that is officially diagnosed because I think I remember hearing that fibromyalgia is a diagnosis of exclusion or is only diagnosed after everything else is ruled out but obviously I'm not sure. Thank you so much for your support and I hope you have a wonderful Christmas and New year!
@@KennaKrueger yeah I was diagnosed with fibromyalgia years ago 4 years ago and the EDS I never mentioned it I knew of it and my GP told me to mention it but I didn’t want to tell a doctor there job so I just said my symptoms and he said fibromyalgia so that’s what I went with I just don’t know as the fibromyalgia came first but I will speak to my GP I think I will always say I have fibromyalgia now not EDS unless there sure sure the doctor didn’t seem to know his arse from his elbow so I kinda don’t take the diagnosis in and I’ve been diagnosed with so much in my life it’s like my trauma past it goes in and out and I kinda just shut off from dealing with what this diagnosis brings … thank you kenna you to I hope you had a merry Christmas and have an amazing new year xx
Rest has always been the best for my joint pain, but heat (I use an electric water bottle, a small heat blanket and those stick on heat pads meant for period pains for when I am out), joint supports when doing activities such as walking and strong pain medications when it all gets too much ❤️
Rest and heat have definitely been helping for now! I have never heard of those little heat pads but I will definitely have to look into that thank you so much!
There’s like no doctors that do autonomic dysfunction. I know of two in the country but both are pediatric. I hope you can find one for you because it really brings everything together, like the gastroparesis and pots. Good luck!
Vanderbilt Autonomic Dysfunction Center in Nashville, TN is probably the best. Dr. Alan Pocinki, affiliated with George Washington University in DC, is another excellent autonomic dysfunction specialist. I live in the middle of nowhere, so I've had to rely on finding research articles and having an open minded primary care physician.
Merry Christmas 🎄 guys. I’m so sorry honey. I’m watching you whilst feeling so sick I want to vomit 🤮. Have a lovely holiday and let’s hope we all have a better new year. Love 💕 to you both. Xxxxxx
Merry Christmas to you too! I am sorry you are having a rough stomach day around the holiday. It is always so tough. I am hoping we all have a better new year as well!
yay a kenna vlog! best christmas gift ever!! 💚 i hope your joint pain gets sorted out soon, it really isn’t fun. i also totally get you on the vibe of some doctors offices. if things don’t feel right, it can totally ruin the whole visit. i sometimes wish i could still see pediatric doctors since they usually carry a better vibe with them. they always validated me and made me feel like i wasnt a waste of their time lmaooo. anyway, i hope you and joseph have a lovely christmas!
aww you are so sweet thank you so much!! Yesss I knew someone would get it when I talked about the vibe of places haha. I totally wish I could still see pediatric doctors as well. They are usually so much more caring and understanding. When I worked briefly as a pediatric nurse, the doctors I worked with were so nice and understanding. Thank you again and I hope you have a wonderful Christmas as well!
yes it is definitely really difficult and hard to know what to do sometimes but I am thankful for my support system to help me get through times like this!
I hope that you have a Merry Christmas? Everyone is different but does it hurt worse when you put cold or heat packs on your joints? You may need to try one then the other to see which feels better?
Hey hey kenna my gastroparesis has been really bad lately from the vomiting after few bites or horrible stomach pain I’ve been being very careful on what I eat past few days but still vomiting I have a appointment with my gastro doctor next week on the 30th to talk about this and been getting dehydrated it’s like I’m in a flare
Aww no I am sorry you are going through a rough time right now flares are the worst. I am so glad you have an appointment coming up soon and I hope they can figure something out to help you manage it!
welcome to the eds club (the club no one asked to be in but life had other plans 😂). i have classical eds, not hyper mobile, but i’m always so grateful to meet other people with the same disease as me. hyper mobile is tricky because they can’t genetically test for it, but you can be clinically diagnosed. i’m here for you and can help answer any questions you might have!
side note: your fashion sense is 🔥🔥 and if you ever created a clothing line i would buy everything, just sayin
It’s not official yet but I’m hoping I’m not a part of the club but we will see. Once I get evaluated and see if I have it or not I will probably have questions! Aww thank you! I definitely want to do something with designing clothes down the line I hope I can one day!
I was happy to hear you contacted a geneticist! Rheumatologists (in the US anyway) generally want nothing to do with genetic connective tissue diseases. Check the EDS criteria, it may ease your mind. I hope you get answers soon.
The light show was beautiful. I hope you guys have a wonderful Christmas!
That is so good to hear! I did actually check the EDS criteria ahead of time to make sure I wouldn't be wasting my time exploring it and it could definitely be a possibility, especially when looking at my siblings too but some of the stuff is subjective so I am also not sure and of course I keep second guessing myself and my symptoms but I have the appointment scheduled now in a couple months so I just have to wait and see! I hope you have a wonderful Christmas as well!
I decided to post this weeks video today since tomorrow is Christmas! I hope everyone has a wonderful holiday!
I hope you get all the answers you need! 🙏🏼 It took me 26 years to get diagnosed w osteoarthritis, 27 to get diagnosed w hEDS (clinically by my POTS cardiologist), 29 to get diagnosed w vEDS, I could go on as most all my chronic illnesses took years to be diagnosed. I wish dr.s would be more educated on illnesses like these, which aren’t as rare as people may think. Wishing you merry Christmas/Happy holidays, dear!! ❤️💚
Thank you and me too! That is such a long time for those diagnoses. More education and awareness is definitely needed for conditions like these. I am also finding that these aren't that rare either! Wishing you a merry christmas as well!!
Hoping you feel better soon. I'm so glad that you made an appointment with a geneticist to be checked for Ehlers Danlos syndrome! At age 21 an incompetent rheumatologist tried to screen me, and my hEDS diagnosis was delayed until age 37 because of him - enough time for a lot of damage to happen due to lack of proper medical care. Please don't feel negative about being screened for EDS! It's important to be screened, so you know whether or not you have it. If it turns out that you do have EDS, it can actually be very empowering - you and your doctors would know the cause of most of your medical issues so they can provide you with better care, you'd have access to physical therapy or other resources to help mitigate the long term effects of EDS, and your siblings would benefit by having an EDS diagnosis in the family if any of them happen to have undiagnosed EDS. If it turns out you don't have EDS, you'll have piece of mind knowing.
It's also good news that you're seeing a neurologist for your dysautonomia symptoms. Often they're much better equipped to identify and treat dysautonomia than cardiologists, since many forms of dysautonomia deal with the sympathetic nervous system. It sounded like the cardiologist you saw was pretty clueless and difficult to work with, so I'm thankful you're getting a second opinion! Hoping that all of your tests work out to give you answers and a better quality of life!
I am so sorry it took you so long for a diagnosis. I am glad I decided to ask for recommendations because I have heard not the best things about rheumatologists + EDS in general but I am still so new to this so I wasn't sure. Thank you so much for the reassurance! I definitely know its not negative but I just second guess myself and my symptoms so often and honestly am probably more afraid that it is going to be positive. That is good to know that if I do have the diagnosis I will have access to the resources/treatment. I honestly forgot about that part and was just avoiding being evaluated for so long because I didn't think my symptoms were "bad enough" but I shouldn't let them get "bad enough" before getting help, like you said I don't want the damage to be done when I could help mitigate the long term effects. Also if it is negative like you said I can stop wondering what if which would be so nice. I am definitely curious about my siblings too because they have conditions that came on for "idiopathic" reasons as well. Our illnesses are slightly different but we have always wondered if they could somehow be linked. My PCP recommended trying to see a neurologist so i did and this one was not good, pretty much like my cardiologist but I am probably going to end up asking for recommendations down line for that too. Thank you for all of this information!
Let me say one thing, thank you for being one of my inspirations and someone who makes me not nervous anymore to show off my own disability and my gastropresis!! literally my fav youtuber now keep it up your such a strong girl and your so beautiful so proud of you!!!
aww this means so so much to me, you are so kind! You are so beautiful as well and I am proud of you for being proud of yourself!
Depending on the cause of the pain (if it’s obviously injured or not) I find heat to be quite useful. If it is injured/inflamed then I would opt for ice packs or a deep heat/ice cream because applying heat directly to something that’s inflamed can make it worse. Also some braces can be helpful to persistent join pains, the kind that you can just buy at any supermarket or chemist without a prescription (I’m in the U.K. though)
For joint pain and having big adventures, I would reccomend getting a transport chair. They're much cheaper than other types of wheelchairs, and that way you can sit and enjoy what you're doing instead of having to focus your energy on just getting through. I know that using any type of chair is a big mental shift, but trust me it's so worth it bc you can do so much more without pain and ambulatory wheelchair users are so valid.
Thank you so much for this information! That might be something I look into in the future if my symptoms continue to be this severe when I am out and about. The mental shift is definitely going to be the hardest part but being able to do things without being in a ton of pain would definitely be beneficial
@@KennaKrueger I know I'm a random internet stranger, but if you ever wanna chat with someone who's been through the experience of becoming a part time chair user, let me know and I'm happy to chat via IG.
I've used Donjoy brand knee and ankle braces for years (was a competitive gymnast and am now being screened for hEDS as well) and they have helped a lot with my pain. It doesn't go away completely, but the support helps. Hope you get answers soon!
Epsom salt baths or magnesium oil (magnesium chloride with water) helps a lot with my joint pain from EDS. Hope you feel better soon! Greetings from Austria
Mine too I can be awake in the worst pain a Epsom salt bath helps so much
Epsom salt soaks are the best! I highly recommend them, too!
I never would have known about this thank you so much for sharing!
The pretzel legs are a sign of POTS too, a common comorbidity with hEDS and GP.
I feel like I am in the same boat!! Feeling like I have had these symptoms forever but they are just getting worse. My primary care just did tests and everything came back negative so it is time for a geneticist referral. I just can’t stop second guessing myself and thinking I could be wasting time and money. Hope everything goes okay!!
I have HSD and AS and deal with lots and lots of joint pain and honestly for me all most nothing helps except rest !💛💛
Wishing you a peaceful Christmas and hoping that you get your diagnosis soon and the right treatment. I do not have Ed’s but another chronic progressive illness and understand your pain x
Thank you! I hope you had a peaceful Christmas as well! I am sorry you have a chronic progressive illness as well. It is hard but we are in this together!
You seem like your symptoms are very similar to my sisters, she recently was diagnosed with MALS and SMAS, it doesn’t hurt to seek further into these diagnosis although getting doctors to diagnose either syndrome is like pulling teeth but it can be especially liberating to finally receive answers.
Yes. So glad you are getting on the path to some answers! I need to get into a rheumatologist also but haven’t been able to fit the schedule! Thinking of having RA or EDS scares me to death but I know I have joint pain. Hope you find some relief
Yes it is so scary, but definitely worth investigating because I prefer to have a peace of mind and not wonder what if! I hope you find some relief as well!
Merry Christmas I think I’ve told you or I may not of I got diagnosed with EDS hyper mobility one
But he didn’t remove my fibromyalgia diagnosis which I thought it was one or the other … I’m going to watch your video on my tv so I wrote on here first love your channel have a wonderful Christmas and new year x
Yes, usually a hEDS diagnosis will supersede a fibromyalgia diagnosis, since hEDS would explain the chronic pain.
The fibromyalgia diagnostic criteria may have been revised to allow both to be present, but it often seems like doctors aren't all on the same page as to which diagnostic criteria to use for fibromyalgia.
I don't know too much about hEDS or fibromyalgia yet but as someone else replied to you I definitely feel like hEDS would explain a lot of your symptoms if that is officially diagnosed because I think I remember hearing that fibromyalgia is a diagnosis of exclusion or is only diagnosed after everything else is ruled out but obviously I'm not sure. Thank you so much for your support and I hope you have a wonderful Christmas and New year!
@@KennaKrueger yeah I was diagnosed with fibromyalgia years ago 4 years ago and the EDS I never mentioned it I knew of it and my GP told me to mention it but I didn’t want to tell a doctor there job so I just said my symptoms and he said fibromyalgia so that’s what I went with I just don’t know as the fibromyalgia came first but I will speak to my GP I think I will always say I have fibromyalgia now not EDS unless there sure sure the doctor didn’t seem to know his arse from his elbow so I kinda don’t take the diagnosis in and I’ve been diagnosed with so much in my life it’s like my trauma past it goes in and out and I kinda just shut off from dealing with what this diagnosis brings … thank you kenna you to I hope you had a merry Christmas and have an amazing new year xx
I'm really sorry that you're in so much pain. I hope you get some relief from it soon.
Happy Christmas to you both. Have a lovely time. x
Thank you! Merry Christmas to you as well!
i have that same hip grinding thing and i have hEDS! a heating pad helps but physical therapy helps the most with joint instability!
Hopefully I'll eventually figure out what is causing my hip grinding thing but for now I will try using a heating pad thank you!
Me too, but I was diagnosed HSD instead of hEDS as I came 1 point short. PT indeed is the way for joint instability.
Rest has always been the best for my joint pain, but heat (I use an electric water bottle, a small heat blanket and those stick on heat pads meant for period pains for when I am out), joint supports when doing activities such as walking and strong pain medications when it all gets too much ❤️
Rest and heat have definitely been helping for now! I have never heard of those little heat pads but I will definitely have to look into that thank you so much!
I have legit all the symptoms you too, and all the joint pains and shoulder numbness etc.
aww no I am sorry you are experiencing that too :(
There’s like no doctors that do autonomic dysfunction. I know of two in the country but both are pediatric. I hope you can find one for you because it really brings everything together, like the gastroparesis and pots. Good luck!
Vanderbilt Autonomic Dysfunction Center in Nashville, TN is probably the best. Dr. Alan Pocinki, affiliated with George Washington University in DC, is another excellent autonomic dysfunction specialist. I live in the middle of nowhere, so I've had to rely on finding research articles and having an open minded primary care physician.
Thank you for this information!
There definitely needs to be more awareness and education for these illnesses! Thank you!
Merry Christmas 🎄 guys. I’m so sorry honey. I’m watching you whilst feeling so sick I want to vomit 🤮. Have a lovely holiday and let’s hope we all have a better new year. Love 💕 to you both. Xxxxxx
Merry Christmas to you too! I am sorry you are having a rough stomach day around the holiday. It is always so tough. I am hoping we all have a better new year as well!
@@KennaKrueger Thank you flower 🌺
yay a kenna vlog! best christmas gift ever!! 💚 i hope your joint pain gets sorted out soon, it really isn’t fun. i also totally get you on the vibe of some doctors offices. if things don’t feel right, it can totally ruin the whole visit. i sometimes wish i could still see pediatric doctors since they usually carry a better vibe with them. they always validated me and made me feel like i wasnt a waste of their time lmaooo. anyway, i hope you and joseph have a lovely christmas!
aww you are so sweet thank you so much!! Yesss I knew someone would get it when I talked about the vibe of places haha. I totally wish I could still see pediatric doctors as well. They are usually so much more caring and understanding. When I worked briefly as a pediatric nurse, the doctors I worked with were so nice and understanding. Thank you again and I hope you have a wonderful Christmas as well!
I can really relate to your inner conflict and denial of symptoms or diagnoses. It's hard to deal with sometimes.
yes it is definitely really difficult and hard to know what to do sometimes but I am thankful for my support system to help me get through times like this!
I hope that you have a Merry Christmas? Everyone is different but does it hurt worse when you put cold or heat packs on your joints? You may need to try one then the other to see which feels better?
I usually prefer heat so I will try that on my joints, thank you! I hope you had a wonderful Christmas!
Hey hey kenna my gastroparesis has been really bad lately from the vomiting after few bites or horrible stomach pain I’ve been being very careful on what I eat past few days but still vomiting I have a appointment with my gastro doctor next week on the 30th to talk about this and been getting dehydrated it’s like I’m in a flare
Aww no I am sorry you are going through a rough time right now flares are the worst. I am so glad you have an appointment coming up soon and I hope they can figure something out to help you manage it!
Have you ever been tested for Lyme disease love? Maybe it would be beneficial for you just to rule it out
No but I have never been bitten by a tick so I definitely don't think thats a possibility haha