I have hEDS, too, and wasn't diagnosed until adulthood. It's such a rollercoaster...the pain and fatigue were especially hard to come to grips with needing help to deal with day to day. I'm a medical professional myself and it still took a ton self advocacy to find someone that accepted what I was saying. I hope that you have more good days than bad. 💛
omg I think imma about to cry bc I have Ehlers Danlos Syndrome too and I've never meet anyone with the same condition and all my life I've been blamed bc i was in chronic pain and my other symptoms. I discovered your channel because I have olive undertones too and I stayed bc in your description you mention being neutodivergent and I have ADHD and I felt idk seen. I hope your symptoms get better, stay safe 💙💪 we can go through this
It's actually a super common misconception that yoga is only about stretching and flexibility! A really good yoga teacher will also teach stability, strength and muscular engagement equally as much as flexibility / mobility. But you do really have to search to find those teachers. I'm hypermobile and once I started practicing in this way it was a game changer for me! Not at all saying that anyone has to do yoga. Glad you have found what is working for you! And thank you for sharing your story and personal insights ❤
I can 100% relate to your story. Chronic pain and fatigue is a real thing. And it takes quite a toll on the body and mind. Glad you’re heading in the right direction ❤
Thank you for this, my son shares all of your symptoms and traits. He was tested for Marfan Syndrome, but I'm not sure if EDS was considered. After watching your video, I am going to push more. Thank you so much. 💜
Interesting story, helpful self advocacy advice. I’m not super flexible but something I still had to learn working with a Pilates trainer was to resist taking movements to the extreme of my range of motion and instead focus on staying in a function, practical range. Since you danced and did gymnastics you’re probably trained to instinctively reach for the farthest range you can and it feels good to stretch fully. But I’ve retrained myself to stay in functional range that means my joints are stable during the exercise. I certainly wouldn’t recommend yoga but I do recommend Pilates with a private instructor who is a former dancer and has a kinesiology education.
Hello Lindsey, I am very sorry for your diagnosis, I also have a genetic diagnosis that affects my mood (bipolar disorder), it is different, but it affects my daily life as well. I'm sorry, you have to learn to live with it and be happy, because happiness is not something that you are happy all the time but you have to treasure the moments that make you feel happy, try to lean on the people you really love and they love you. I hope you feel better and can alleviate the symptoms. A big hug and lots of encouragement. Much love 😘
Just want to chime in with my thoughts and support. I'm always sorry to hear of someone else joining this awful club. I've been through the years of " your tests are all normal", followed by a shrug" the innuendo of "it's all in your head" , the always helpful "you just have to learn to live with the pain". It's been close to 40 yrs now since I started on this journey and I still have people tell me it's not possible for "one person to have that many things wrong". People wanting to help, even if they don't know me so they insist I need to do this or try that thing that helped their friends mothers sister. In 30+ years there is a very good chance that I have tried this, that and the other thing and they didn't work. I have no words of wisdom or any truly helpful advice. I just wanted to say I'm sorry this is what you're dealing with and if it helps, especially at 3am, know your not alone. By the way, your makeup looks great. I wish my hands were as steady enough to blend half as well as you. And don't get me started about eyeliner and mascara.
I also live with chronic illness and my neck actually hurts now from nodding along to so much that you were saying 😄 I am so happy to hear that you finally received a diagnosis 💙 I really enjoyed this kind of video, would love to see more like it 😊
You’re remarkably strong! It’s great to finally get the diagnosis and understand what works best for you and what doesn’t, so congrats on that! I had IBS (irritable bowel syndrome) and it was really painful and uncomfortable. I struggled working and studying at the same time as it was the worst at the morning and I couldn’t really leave the house while experiencing symptoms… I was lucky to find a doctor and therapist that helped me a lot. Finding the right specialist is super important.
I suffer from IBS and chronic pain. I really relate to working out for bad posture. I am currently doing physical therapy for my posture to help my back pain.
So affirming hearing someone else’s experience with MCAS, on the way to a deeper diagnosis. Still on the path to a final diagnosis myself but your story gives me hope that it’s possible to find one! Please consider sharing more about the journey ♥️ would also love to hear how you found your naturopaths!
Thank you for sharing this! So sorry you’re dealing with this all, chronic illnesses are such a struggle physically and mentally. I got diagnosed with POTS about 8 years ago now and about 2 years ago started having new symptoms and was diagnosed with MCAS, it has been a real struggle treating and a lot to deal with as the symptoms and triggers comes and go. Eating is definitely a huge struggle and activator. I’ve also been dealing with dysphagia for over a year with no answer or help so far. It can also be related to MCAS and allergic symptoms so keep that in mind when speaking with your doctors. In case that helps! ❤ I haven’t reached a treatment for it either yet, also saw a speech therapist and ended on the same note more or less. You truly do just get bounced around between specialist and answers can take sooo long to get. It’s disheartening. Thinking of you and hoping for answers and help for you and all of us struggling. If you have anything to share that has really helped with your MCAS symptoms, I’d be greatful to know someone else’s experiences.❤
I see other people (including Kait herself) have commented this, but you should follow State of Kait or reach out to her if you feel comfortable! In addition to her just having a great channel and personality, she seems to have a lot of similar experiences and diagnoses.
I have fibromyalgia, it's often confused with EDS. I had never heard about EDS before my diagnostic (and even barely about fibromyalgia). So I also have chronic pain and chronic fatigue also. Before my diagnostic I was like you, "what ? it's not normal to always be in pain and tired ?" XD
I am hyper mobile as well. Same experience with stretching. Makes pain way worse.standing to long hurts , sitting to long hurts , laying down to long hurts . Cars hurt . Soft temperpedic mattress helps and weight lifting helps . What else helps you ?
I have dysautonomia myself plus tons of other goodies. My happy place is my bed. I wondered why you didn't put out more content when you are so wonderful. I'm sorry that you are going through all of this. I love the grwm chats. But I love all of your content. 🎀 I have a question or two. Why does makeup turn orange on me if it doesn't have a good purple undertone and being so pale how can I cover hyperpigmentation on the apple of my cheek? I put a ton of products on it and one bit of blush and it's back darker than ever.
Girl no one understands you better than me. Not bc I have something but we are going through it with my lil brother. He is a Special Needs young adult in wheelchair 🦼 and he gets fed through a G-tube but recently he has been vomiting a lot. And no one knows why we have been to the ER and all the X-rays 🩻 and CT scans come out normal 😑, so we don’t know and his Gastro Dr is the worst 🤦🏻♀️. Now his nutritionist thinks he has a slow metabolism and that could be why he is vomiting a lot. But we still have no diagnosis it’s so frustrating and helpless bc you can’t help your family member it’s exhausting. I did tell my mom to try a Naturopathic Dr. and if that doesn’t help maybe even take him to Mexico to see other Doctors over there. But yeah Girly I totally understand. And if that is not enough my sister is also Special Needs and also in wheelchair and they both can’t do things by themselves so it’s hard work for me and my mom every single day. Take Care Girly I’ll keep you in my prayers 🙏🏼💕
I'm wondering if you wouldn't benefit from some adaptogens, like ginseng, mushrooms, ashwaganda, etc. I routinely take these things for chronic lyme and they make such an unbelievable difference for inflammation, and energy. I also do a lot of nutritional yeast for b12. I had all kinds of gut issues w/ the lyme too...just gave up sugar, dairy, gluten and now do Keto and intermittent fasting which also helps w/ the inflammation. I watch Dr Berg on youtube and his suggestions were game changing for me w/ the lyme.
One more thing I’ve heard ketamine, psychedelics or Hayauasca can help with many things check it out maybe look into it or listen to Podcasts to see if that can help? For pain have you tried CBD? It helps my mom with pain and stuff.
I believe Mel Thompson had vascular EDS and was having regular seizures. Her healthcare sounded like an absolute joke and they weren't taking her condition seriously. So so tragic but I think her situation was 'worst case scenario' and Lindsey shouldn't be alarmed!
Ok I think UA-cam keeps flagging my comment as spam because I linked my IG, but I have a lot of similar issues and am here if you ever want to talk!
Thank you!! found your IG and followed!
I have hEDS, too, and wasn't diagnosed until adulthood. It's such a rollercoaster...the pain and fatigue were especially hard to come to grips with needing help to deal with day to day. I'm a medical professional myself and it still took a ton self advocacy to find someone that accepted what I was saying. I hope that you have more good days than bad. 💛
omg I think imma about to cry bc I have Ehlers Danlos Syndrome too and I've never meet anyone with the same condition and all my life I've been blamed bc i was in chronic pain and my other symptoms. I discovered your channel because I have olive undertones too and I stayed bc in your description you mention being neutodivergent and I have ADHD and I felt idk seen. I hope your symptoms get better, stay safe 💙💪 we can go through this
It's actually a super common misconception that yoga is only about stretching and flexibility! A really good yoga teacher will also teach stability, strength and muscular engagement equally as much as flexibility / mobility. But you do really have to search to find those teachers. I'm hypermobile and once I started practicing in this way it was a game changer for me! Not at all saying that anyone has to do yoga. Glad you have found what is working for you! And thank you for sharing your story and personal insights ❤
I can 100% relate to your story. Chronic pain and fatigue is a real thing. And it takes quite a toll on the body and mind. Glad you’re heading in the right direction ❤
Thank you for this, my son shares all of your symptoms and traits. He was tested for Marfan Syndrome, but I'm not sure if EDS was considered. After watching your video, I am going to push more. Thank you so much. 💜
Thank you so much for watching!
Interesting story, helpful self advocacy advice. I’m not super flexible but something I still had to learn working with a Pilates trainer was to resist taking movements to the extreme of my range of motion and instead focus on staying in a function, practical range. Since you danced and did gymnastics you’re probably trained to instinctively reach for the farthest range you can and it feels good to stretch fully. But I’ve retrained myself to stay in functional range that means my joints are stable during the exercise. I certainly wouldn’t recommend yoga but I do recommend Pilates with a private instructor who is a former dancer and has a kinesiology education.
Hello Lindsey, I am very sorry for your diagnosis, I also have a genetic diagnosis that affects my mood (bipolar disorder), it is different, but it affects my daily life as well. I'm sorry, you have to learn to live with it and be happy, because happiness is not something that you are happy all the time but you have to treasure the moments that make you feel happy, try to lean on the people you really love and they love you. I hope you feel better and can alleviate the symptoms. A big hug and lots of encouragement. Much love 😘
Totally, thank you so much!
Just want to chime in with my thoughts and support. I'm always sorry to hear of someone else joining this awful club. I've been through the years of " your tests are all normal", followed by a shrug" the innuendo of "it's all in your head" , the always helpful "you just have to learn to live with the pain". It's been close to 40 yrs now since I started on this journey and I still have people tell me it's not possible for "one person to have that many things wrong". People wanting to help, even if they don't know me so they insist I need to do this or try that thing that helped their friends mothers sister. In 30+ years there is a very good chance that I have tried this, that and the other thing and they didn't work. I have no words of wisdom or any truly helpful advice. I just wanted to say I'm sorry this is what you're dealing with and if it helps, especially at 3am, know your not alone.
By the way, your makeup looks great. I wish my hands were as steady enough to blend half as well as you. And don't get me started about eyeliner and mascara.
I also live with chronic illness and my neck actually hurts now from nodding along to so much that you were saying 😄 I am so happy to hear that you finally received a diagnosis 💙 I really enjoyed this kind of video, would love to see more like it 😊
😅 I totally relate to the neck pain! Thank you 💙 I’ll definitely have to do more videos like this
You’re remarkably strong! It’s great to finally get the diagnosis and understand what works best for you and what doesn’t, so congrats on that!
I had IBS (irritable bowel syndrome) and it was really painful and uncomfortable. I struggled working and studying at the same time as it was the worst at the morning and I couldn’t really leave the house while experiencing symptoms… I was lucky to find a doctor and therapist that helped me a lot. Finding the right specialist is super important.
Thank you so much! I totally relate to the morning being a bad time for symptoms.
Me too just being diagnosed hEDS thank you so much for the video
I have adhd too
A cure would be great but alleviating the symptoms is great too. Feel well! Get as much nutrition as you can! 💜
Thank you so much!
I suffer from IBS and chronic pain. I really relate to working out for bad posture. I am currently doing physical therapy for my posture to help my back pain.
So affirming hearing someone else’s experience with MCAS, on the way to a deeper diagnosis. Still on the path to a final diagnosis myself but your story gives me hope that it’s possible to find one! Please consider sharing more about the journey ♥️ would also love to hear how you found your naturopaths!
Thank you so much! I found them mostly just from researching in my area and then checking what each doctors speciality/interests in health was
Thank you for sharing this! So sorry you’re dealing with this all, chronic illnesses are such a struggle physically and mentally. I got diagnosed with POTS about 8 years ago now and about 2 years ago started having new symptoms and was diagnosed with MCAS, it has been a real struggle treating and a lot to deal with as the symptoms and triggers comes and go. Eating is definitely a huge struggle and activator. I’ve also been dealing with dysphagia for over a year with no answer or help so far. It can also be related to MCAS and allergic symptoms so keep that in mind when speaking with your doctors. In case that helps! ❤ I haven’t reached a treatment for it either yet, also saw a speech therapist and ended on the same note more or less. You truly do just get bounced around between specialist and answers can take sooo long to get. It’s disheartening. Thinking of you and hoping for answers and help for you and all of us struggling. If you have anything to share that has really helped with your MCAS symptoms, I’d be greatful to know someone else’s experiences.❤
Aw thank you so much! Seems like we have alot of the same symptoms. I had the thought about MCAS affecting the dysphagia as well
Sending so much love! 💗💗
I'm glad you're doing well now hun❤
Thank you!
I see other people (including Kait herself) have commented this, but you should follow State of Kait or reach out to her if you feel comfortable! In addition to her just having a great channel and personality, she seems to have a lot of similar experiences and diagnoses.
I have fibromyalgia, it's often confused with EDS. I had never heard about EDS before my diagnostic (and even barely about fibromyalgia). So I also have chronic pain and chronic fatigue also. Before my diagnostic I was like you, "what ? it's not normal to always be in pain and tired ?" XD
Exactly! Like what its not normal?! thanks for watching
I am hyper mobile as well. Same experience with stretching. Makes pain way worse.standing to long hurts , sitting to long hurts , laying down to long hurts . Cars hurt . Soft temperpedic mattress helps and weight lifting helps . What else helps you ?
Weightlifting is a godsend. The muscle gain really helps support the joints. My pain improved so much from it.
I think weight lifting has had the biggest impact and just making sure to take sitting/standing breaks
I have dysautonomia myself plus tons of other goodies. My happy place is my bed. I wondered why you didn't put out more content when you are so wonderful. I'm sorry that you are going through all of this. I love the grwm chats. But I love all of your content. 🎀
I have a question or two. Why does makeup turn orange on me if it doesn't have a good purple undertone and being so pale how can I cover hyperpigmentation on the apple of my cheek? I put a ton of products on it and one bit of blush and it's back darker than ever.
I'm so happy you have at least a diagnosis. I'm wondering if you are deficient in some minerals or vitamins? Did they blood test you for that?
Thank you! I do have a couple deficiencies that i supplement for and get regular blood testing to check
Girl no one understands you better than me. Not bc I have something but we are going through it with my lil brother. He is a Special Needs young adult in wheelchair 🦼 and he gets fed through a G-tube but recently he has been vomiting a lot. And no one knows why we have been to the ER and all the X-rays 🩻 and CT scans come out normal 😑, so we don’t know and his Gastro Dr is the worst 🤦🏻♀️. Now his nutritionist thinks he has a slow metabolism and that could be why he is vomiting a lot. But we still have no diagnosis it’s so frustrating and helpless bc you can’t help your family member it’s exhausting. I did tell my mom to try a Naturopathic Dr. and if that doesn’t help maybe even take him to Mexico to see other Doctors over there. But yeah Girly I totally understand. And if that is not enough my sister is also Special Needs and also in wheelchair and they both can’t do things by themselves so it’s hard work for me and my mom every single day. Take Care Girly I’ll keep you in my prayers 🙏🏼💕
I'm wondering if you wouldn't benefit from some adaptogens, like ginseng, mushrooms, ashwaganda, etc. I routinely take these things for chronic lyme and they make such an unbelievable difference for inflammation, and energy. I also do a lot of nutritional yeast for b12. I had all kinds of gut issues w/ the lyme too...just gave up sugar, dairy, gluten and now do Keto and intermittent fasting which also helps w/ the inflammation. I watch Dr Berg on youtube and his suggestions were game changing for me w/ the lyme.
I have tried ashwaganda and do enjoy it!
One more thing I’ve heard ketamine, psychedelics or Hayauasca can help with many things check it out maybe look into it or listen to Podcasts to see if that can help? For pain have you tried CBD? It helps my mom with pain and stuff.
I’m afraid to say this but have u tried the melt method?
no i haven't!
I think Mel Thomas had a similar illness. Hope you find the help you need.
I believe Mel Thompson had vascular EDS and was having regular seizures. Her healthcare sounded like an absolute joke and they weren't taking her condition seriously. So so tragic but I think her situation was 'worst case scenario' and Lindsey shouldn't be alarmed!
Thank you! and yes @sesame135 Mel had the vascular type