I want to thank you for your videos. I am 54 years old and I was diagnosed at 25 when i was pregnant with my daughter. Which was disastrous. I have yet to find a doctor to help me. Your videos actually made me realize that all my self diagnosed ideas were spot on. The problem is actually getting diagnosed by a doctor. Then getting treatment. I was finally diagnosed with hyperparathyriodism after 8 years of being stuck on a couch and put on antidepressants because I’m a woman it must just be depression. Now because of inactivity for so many years the EDS has just destroyed me. I also crushed c3,4,5,6 in my neck and compounded discs in my back in a car accident so being diagnosed with depression instead of hyperparathyriodism has caused so much damage to my body. I am a prisoner in my own home. Your videos have given me hope. I know i have POTTS, MCAS,a nodule on my adrenal gland, and labrum tears in both hips. Getting diagnosed seems to be just a dream at this point but your videos have given me the fight back. Thank you
I'm so sorry you have yet to find providers that will listen to you and provide the best care. Have you tried looking at the provider section of the EDS Society website? You can search by location. I travel quite far to get the best care I can. There's also an EDS clinic in maryland (I live in CA) and they're able to treat me remotely.
I’m 50 and just started hormone replacement therapy. It’s helped a lot of my joint issues as declining estrogen seems to be connected to my MCAS flares and joint laxity. Not a cure, but definitely helping my hip issues and lower back pain. I have many cervical disc issues too. Even without EDS, estrogen is linked to joint issues and histamine intolerance.
I’m sooo curious why there is so much of this going around with WOMEN?? 🧐 yes maybe we’re finally having more diagnosis? But no something feels off!? Like what’s going on with us? What’s causing this?! It’s wild
Rock on girl! It took emergency open heart surgery for my daughter, at age 46, with an aortic dissection, and genetic testing to find the cause. Consequently, I was diagnosed at age 68. I so relate with you, and have held my pain in my whole life. Now that I’m diagnosed, and do express pain, people think I’m worse now, but it’s only because I never complained before. Thanks for doing what you do! Your information is extremely helpful, and you express how we feel so well.
I have hEDS, POTS, and MCAS. I was recently diagnosed after 26 years of suffering with it. The doctor search is exhausting and once I find one that knows what they are talking about it’s always “POTS just sucks” or I just have to live with the pain. I had surgery in January on my hip because it tore due to my EDS. They ended up losing my blood pressure and pulse on the table and couldn’t complete it. Now they say I just have to live with a torn hip 😩 (im 26 years old). So frustrating, but im so glad you are talking about this online!
I’m so sorry. I had two torn hips and had surgery on the right side at 29! Luckily it was successful. But one time when I was getting a steroid injection in my lower back for pain, they refused to sedate me even though I warned them I would pass out. What do you think happened? My blood pressure dropped so badly on the table that they couldn’t go through with it. All because they didn’t listen to me. Absolutely infuriating!
I can’t wait to watch all of this. Your last video on this channel actually brought me to tears because I related to just about everything you said. It’s so hard to find balance when you’re working full time out of necessity and dealing with chronic illness. So many people - doctors included - don’t understand how much chronic illness affects every aspect of your life. Thank you for sharing your journey and helping me feel less isolated and alone 💗💗
You’re absolutely right! My husband claims to know, but he doesn’t, and tells others he has compassion and empathy, but he doesn’t 😂. Mine has been really severe for over a decade now and I tried to talk to him a while back about how it had gotten even worse in the last few months, in intensity as well as in new ways. His response was I know, but there’s no way he could without me telling him. It just made me realize, if he has that little interest, there’s no wonder why doctors show so little interest.
Thank you for saying what you did in the grief section. I have cried over my POTS diagnosis and countless gastro symptoms too many times. I need to be more patient with myself. This journey is not over but being patient to ourselves is key.
Kait, I really relate when you talk about your childhood and your issues not being taken seriously and coaches even treating you poorly due to their ignorance. I tried to play soccer for a time and actually loved it, BUT every day at practice when we had to run laps, on about the 3rd lap I’d get really lightheaded then pass out and throw up. I’d come-to to my coach yelling at me in his heavy accent that I drank too much alcohol and mocking me saying I “got drunky on the alky and can’t do practice”, etc. I kept telling him I didn’t drink, much less get drunk and I don’t know why that happens. It was extremely embarrassing and he made it even more so. After that I didn’t even try to play any sports, even recreationally with friends. I was told growing up that I was just weak, the runt of the litter, had a low pain tolerance, and many other things until I believed them. Most memorably it was from the person that gave birth to me. So now getting validation that, for example, when I walked across the room in home economics and my knee dislocated up to my thigh wasn’t just weakness, it’s actually quite emotional. But even as an adult, my husband told me my periods were no worse than any other woman, I just had a low pain tolerance. Actually, I suffered with endometriosis for years before someone finally cared enough to do exploratory surgery and found that it was tied around several areas of my stomach so I couldn’t even cough without serious pain. Anyway, I wanted to thank you for sharing your story and the information you’ve learned on your journey. You’ve helped me a lot just with not feeling so alone, and I’ve already learned things about EDS that I hadn’t come across yet in my own research and bc I don’t have access to doctors in my state that are knowledgeable about these conditions. There are things you’ve shared about ‘connecting the dots’ between symptoms and EDS and comorbidities, that I knew nothing about but they FINALLY make sense thanks to you! ❤❤ (I have VEDS, MCAS and POTS)
New subscriber here. I just found your channel(s) last night when I couldn't sleep due to the new moon (Is there anyone else with that issue?). You've brought back so many memories, especially of those most difficult days pre-diagnosis. I remember being told as a very little kid: "Pull yourself up by your bootstraps", "It's not possible to hurt everywhere", and the very skeptical " Yesterday, you said it was the other leg that hurt". That led to two decades of hiding my pain and trying to pretend to be normal. I'd blame my falls on tripping instead of being able to explain that my joints pulled apart, and I got the reputation of being clumsy. It's a lonely place, trying to fit in while knowing something is seriously wrong. I was finally diagnosed in my late twenties after not healing as expected from a car accident. That was in the late 1980's, however, and there was so very little information available. In a time before Google searches and TH-cam videos, I went to a medical school library to do my own research. Even there, the lack of information was disheartening. Eventually, I found the EDS Society. They were able to mail me a couple of very basic pamphlets that I could share with family and friends. So much was not known then, but I finally felt seen. In the decades since, my symptoms have progressed dramatically. In my mid-sixties now, I have a few pieces of advice: Do as much as you can while you can, especially things that will leave you with wonderful memories, while at the same time taking care not to strain your joints. Be open to accepting a motorized scooter, or even a wheelchair, before the day comes when you absolutely need one. They are just tools to aid your mobility. I wasted too many years trying to not look disabled, while watching opportunities pass by and my world get smaller. Surround yourself with caring, empathetic people. It's so destructive to do otherwise. And finally, get therapy if you need help dealing with the pain, grief and anger that comes along with disability. It has allowed me to dwell in a place mostly filled with peace and gratitude despite being essentially bedridden these days. One more note regarding the KT tape... For years, it was of tremendous help to stabilize my knees, shoulders, etc., but now it's too harsh. It seems my skin has gotten even more delicate with age. Now when I gently pull the tape off, it removes the top layer of skin. Any suggestions would be appreciated. Thank you so much for your postings. Wishing you less pain and more energy. Peace.
I was diagnosed last Sept with multiple sclerosis, and really related to your last video about how it changes your life, feeling like parts of your life are over (travel, etc). I have also been taking LDN for a few months after doing a lot of research on it. I am now at 4.5mg for a few weeks. I am so glad you’re sharing about it! By the way, Skip’s pharmacy in Florida has the cheapest prices. A 60-day supply of LDN for me is $70. And I also live in CA, my neurologist suggested Skip’s because I was paying too much at a local compounding pharmacy. They’re amazing. I have wondered also about EDS lately. It was actually a tiktok of someone showing how they could touch their thumb to their arm (my party trick for many years) and splay all their fingers out backwards. I also had my hair dresser comment on how my scalp was really thin, as in she would brush the hair and the skin would lift up so easily with it. A lot of random things like that over the years. And lots of chronic pain too, but I always just blamed my weight. I was the opposite of you with my MS diagnosis. I didn’t want a diagnosis. But it was pretty unavoidable since my first attack was so severe. I lost sensation from the waist down, could barely walk or stand in place without falling, so much pain, and lots of other stuff. But basically I didn’t even accept my diagnosis for months. And delayed treatment because of it. Which is dangerous with MS. But, as you are finding out, there are many reasons to be skeptical of conventional healthcare and the real root-cause help usually comes with a hefty out-of-pocket expense. Unfortunately I can’t afford most of the testing and medical care that would be helpful for my condition, so I do much of my own research and apply what I discover. One big component I feel to all of these chronic conditions, is trauma. So I’m trying to work on that. As you mentioned, it does give one a sense of what really matters in life. And the permission to rest, set boundaries, and go easy on yourself. I am learning not to hate my diagnosis. And I have finally started treatment (a disease modifying therapy for MS), along with diet changes and supplements. The deeper you go, the weirder it gets, when you start learning how viruses and heavy metals work in the body. This all culminates in the gut, and depending on genetics, can display differently for different people. Finally, I am around your age, though a little older, turning 35 in a few months. And I haven’t had children yet. I feel like it’s an especially niche feeling, the fear that happens in this space, the intersection of chronic illness and family planning after 30. But I know that if I or you are meant to be mothers, we will be. And I pray that our future babies are full of health because we chose to heal ourselves. 💕 I am so happy for you that LDN is providing such relief, and that your perspective is being refined. God bless you, and take care. 💕
My.mum.has severe ms surely heds as my grandfather surely had I have heds diagnosed Asperger's diagnosed late I have fybromyalgia CFS before ldn.not working for pain but maybe fatigue.stress brought in my mum's ms after grandmother funeral no medication worked
@@kaitgardner for months and months I have had stress and pressure around putting on that attitude of positivity KNOWING what they will greet me with if I don’t. I finally just had to make the right choice… fuck THAT feel it up. and keep the gratitude in my life flowing 🌸
I just came from your first video and wanted to give an update! Since being diagnosed (still only working diagnosis for POTS) I've had several specialist visits schedule, saw a gastroenterologist and was put down for a colonoscopy later this year. I've gotten compression socks (I hate the feeling too) and they kinda help but mostly just make blood pool in my knees and thighs instead which doesn't help the pain there. I'm currently shopping for mobility aids, trying to get a second hand cane from a family friend to start with. I've also done a lot of grieving. The more I open up to my friends and loved ones about everything going on and how my life is going to be changing, the more I realize just how much I've lost, am losing, or have never had. I'm taking one day at a time, but it's been so incredibly hard. My symptoms have gotten to the point this year that I've been out of work for months and don't know when/if I'll be able to get a job suitable for my condition. I just wanted to say thank you, not only for that first video that I found back in February after I first got my diagnosis, but for continuing to post REAL content. It can feel so isolating living with chronic pain and illness, especially at a young age when no one else around you can truly get it. I hope you have an amazing day, and I'm so glad you had a great time at Coachella!!! I'm hoping to go to another anime convention this year, but with medications, preparation, and mobility aids ready before hand. Tons of love from the east coast ❣️
Thank you for the love, I really hope you find relief this year. I’m super lucky that my conditions have never impacted me to the point where it can’t work - I just had to change industries to be able to work from home. I’m sure that must be so frustrating. I’m so glad you got your diagnosis, and I’m sure you’ll find more tools and meds that help. It took a lot of trial and error for me and I’m still just in the process of initial tests and treatments. I might start beta blockers for POTS soon but my POTS specialist can’t see me until freaking December
@@kaitgardner Oh trust me I know 😭 They can't even give me a time frame for when I'm going to be doing the tilt table test. Just on a waiting list with no further instruction.
Kait! This is so helpful. I'm still grieving about my ADHD and depression!!!!! And I hate hate hate it when people tell me to "get a planner" and "use timers" to help me cope. So annoying. Also happy that you've found treatments that help you!!!
One of the reasons that higher compression garments are recommended is that individuals can also struggle with blood pooling in the pelvis, or in the abdomen particularly after eating. Consider looking into postprandial hypotension. Some folks find that wearing high waisted compression shorts, like Spanx help, or a postpartum abdominal binder. Try and not think about it all or nothing. I find it is still helpful to wear stiffer athletic leggings when doing activities with prolonged standing, running errands, ect, or if I have other triggers working against me, like eating, heat, impending period, ect, and wear down a size if I want some extra compression. I hate feeling squished, so I take them off as soon as I am going to be sitting or resting again. I don't feel noticeably different wearing them, but do typically have more stamina, and a little less fatigue when I do. Think situational.
Thank you for this video, I can relate to much of this. I miss my previous life and am so frustrated with myself and others for not understanding, but I’m mostly frustrated with the medical profession and their lack of knowledge on these conditions. Their only solution is anti-depressants. My doctor once told me “all I can do for you is give you a prescription or an operation, and you don’t need either.” Great. 🤗
UGH that is so frustrating. Sounds like you need a different doctor! I won’t give a doctor the time of day when they give me that response. Sending you gentle hugs
Thank you for sharing! My oldest child was diagnosed with POTS at age 12 (now 22), likely triggered by a virus and has learned to manage symptoms quite well. My youngest was just diagnosed with POTS in December, 3 years after having mono. I knew POTS, or at least thought I did, but my youngest has slightly different symptoms and may also have EDS, which is a whole new thing! It's really helpful to hear your experience!
I have grown up with so much shame and a shaming family, that just blow off how I feel. Its been challenging to say the least. I was doing the best I have for years and boom! Feeling the grief, disappointment, AND how its time to prioritize what feels good and allow myself to let go of the fear about money, time, etc. Its requiring me to drop into DEEPER trust in something beyond me.
Fantastic. We've been on this road with two of our kids. Never easy. I sent your first video to my 16 year old. She's struggling with the non empathetic friends. Heds is from me. I was so mild didn't know I had it. They are not a mild expression .
Thanks for being here! If you haven't seen the first video in this series, it's on my makeup channel but it's super helpful context: th-cam.com/video/Csj3bDtRbCA/w-d-xo.html
LDN has been a game changer for me too! I take so many supplements daily but this one was THE biggest wow I feel better why didn’t I know about this sooner. It was me researching finding it and trying to find someone to prescribe it as no doctor will or gets the purpose of it in low doses. I had a serious reaction when I started taking it too but my functional doctor did a Detoxi Genomic test and the results in a nutshell were I don’t detox properly at all and have a VERY strong reaction to medications. Therefore had to start very low dose and tweek it like you did very slowly. I really wanted to see if I could get it to work for me. Soooo glad I did !! Be patient, listen to YOUR body ,do what works for you! I also couldn’t tolerate it at night so I take first thing in morning. I’m 47 and I felt like an energy of a much younger person. I cried too as I’m like this what feels like to not tired and have energy! Wow 😊 Ageless RX online is an option too for people who don’t have compound pharmacy nearby for LDN. As for food I cut out gluten and alcohol for 2 years until got my body to a more calm state and now it’s a treat to have a drink. It does suck sometimes , but to feel ok and have a decent day it’s worth not to have alcohol. I do miss gluten sometimes but I’ve been gluten free for over a decade and so there are many options now. Lastly positivity is fantabulous and needed in our lives ….but grief with illness is a must and totally agree we all need to process and share our feelings. We need to feel validated and heard too. Cut out the BS in life and those toxic people too! It helps .. a lot! I ended up going to therapy as it also helped with my grief and being able to process this very lonely journey that’s been 47 years.. still looking for official diagnosis ..as I’ve been my own advocate. This is hard as hell! Thank you so much again for sharing your story ..keep inspiring and helping ❤
I’m super frustrated, my LDN stopped working and now I’ve been in a really bad pain flare up for the first time since I started taking it. Has that happened to you? And I agree on gluten and alcohol. I very rarely consume those now, and I truly don’t miss it!
Hi Kait Wow, you're dealing with a lot. While I don't have any of your chronic illnesses, I sure can sympathize with chronic pain. I have osteoarthritis in my hands, knees, and back. As we know this is also degenerative, so it has been an adjustment; going from serious equestrian pursuits, to mellow daily walks with my dogs.. Ive had 2 full knee replacements, plus spinal decompression surgery to fix a pinched nerve that resulted in severe sciatic pain. Following months and months of rehab, I can say I am doing much better. All this to say you're not alone. I'm so glad you got diagnosed and are finding therapies to help you manage and get stronger. Thank you for sharing your story. I wish you well.
Thank you, thank you, THANK YOU for putting this out to the world! Keep sharing your story & info. I needed this information SO much. You may have saved me & just know that.
When I have medical appointments, doctors have started asking me if I'm in the medical field. Because I've had to learn SO MUCH on my own that now I sound like them, haha. The fact that it's called heath"care" is a joke. We're looking at moving to Europe because my EDS is going to only need more management and the U.S. refuses to try. The amount of doctors who shrug at me and say "you should just expect a lot of pain" is infuriating. And, just a quick word of warning: the EDS website doctors are always versed in EDS. The only doctor near me who was on that website only mentioned it once in a medical paper (the paper was actually about something else) and that somehow qualified him for the site. He barely knew enough to diagnose me. So, it's a great resource, but not a guarantee. And I totally agree about alcohol. Cutting that out is a major game changer!
So frustrating you have to move because our healthcare system here sucks. But I hope you have a great experience! Totally, some of the doctors on that site have been disappointing but it’s a good starting point.
Thanks for your voice! I love that you are sharing your experiences. I'm 69 and finally got a doctor who has hEDS and he saw my history he has referred me to a whole team to help me with my daily life!!!
Hi Kait, I watched Part 1 on your other channel and came here to watch Part 2. Thank you for sharing your experience, and I'm so sorry that you have struggled and suffered so much! I can relate SO MUCH to doctors not taking you seriously. I've been horribly ill with SOMETHING for almost 3 years now, and no one seems very interested in trying to find out what is causing my bizarre and debilitating symptoms. My symptoms are different than yours, but my suspicion is that I have some type of autoimmune condition (and maybe several other conditions alongside it). I have had to resort to trying to figure this out on my own by doing deep research, and then going to my doctor to ask for certain lab tests. He has begrudgingly agreed to a few of the tests, and he did refer me to a neurologist. The problem with referrals through insurance is that everything takes so painfully long, and my appointments/tests are literally months and months apart. And I can't even get a referral to a rheumatologist, so I am going to have to pay thousands of dollars to see one outside my insurance. Here's the real kicker in all of this: my primary care doctor wants to refer me to mental health, because of my "anxiety" and "depression" (which I never told him I was struggling with!). If I have anxiety and depression, it's because I'm very physically ill, and NO ONE is trying to help me! The feeling I get with him is that he thinks all of this is "in my head", and I just need some psychotherapy and I'll be fine. What an A**hole!
UGH. Sounds like you need different doctors, I totally relate. When doctors did that to me, I moved on to different doctors who would listen. It is NOT worth wasting your time on doctors who gaslight you. You can find doctors who will listen and care, it's like dating - you have to shop around and it's worth traveling farther away to get the best care (that's what I do.) I'm so sorry you're dealing with this.
I think I have medicalised PTSD from the gaslighting doctors. I want "anxiety" removed from mine and daughter's medical history. EDS and POTS (and MCAS) groups on Facebook are really helpful by the way.
Can you please comment on the dysautonomia piece? What are you doing for that? Thank you for sharing your journey Kait. It means a lot to be seen and heard.
Thank you for your honesty. Yeah, 54 when I got my diagnosis hEDS. I've been there. So many years of trying to be OK! Also, more recently I've gotten potentially fatal blood clots twice, assumed to be brought about by taking HRT once for 2 months. Thinking you could drop dead withing 2 minutes of every moment is a serious mindf*ck. I can't pretend I'm fine anymore.
May I ask what kind of dr did you find? My drs are clueless here when I tell them hey something is wrong with me I have seven out of these 15 symptoms ? For ex…they just look at me
Thanks so much for your videos, you give such helpful tips. I just got diagnosed with hEDS, dysautonomia and Mcas, so every i formation already helps so much!
Feel free to ask any questions, I'm here to help! Check out my video called "How to Cope." It's all about coming to terms with a chronic health diagnosis, it might be helpful for you. xoxo
Thank you so much for sharing more of your journey with us. I have some similar diagnosis as you, but not all. I definitely have some things to bring up at my next Dr appt. I'm in the process of going to a pain clinic to get off some of some of this hefty medication I'm on. I also found out that I need major surgery on my neck. I'm really scared, but it has to be done. I've been suffering for over 16 yrs. Praying this will give me some relief! I'm so grateful for you Kait! Thank you for everything!
Neck surgery sounds scary but hopefully it will give you the relief you need! Just make sure you like your surgeon - being comfortable and trusting them will be important to manage your anxiety. Talk to them about how scared you are and tell them you need reassurance.
Girl I was in the hospital for 2 days no answers could not speak or walk and shortness of breath from chronic fatigue syndrome and fibromyalgia. I had to crawl in my house because I couldn’t walk without getting syncope. The LdN stopped that witching 2 weeks of taking . I flare and have a base of symptoms daily but I can at least get out of bed!! So happy you are doing better!!
I'm new here, and on your other channel (which led me here), and not big on commenting, but I just have to. I always appreciate when "youtubers" share about chronic "invisible" stuff so it can be more known to more people. I put invisible in ".." because I always feel that when people want to see/notice, they can. I myself have fibromyalgia, dysautonomia and some other fun buddies with less impact and I can relate so much to everything you express here and in the 1st video, especially being "functional" and not feeling in place in either community and the mental load.. Being in Belgium I sometimes feel like we're 10 steps behind (to put it mildly 😂), I have asked about LDN here and they refuse to even think about it because they claim there aren't enough studies about it.. But I think they just don't really know about it.. I've been hopping from specialist to specialist, making people think/comment that I can't accept my diagnoses.. But I feel like there are things that aren't being checked and want to go to the bottom of it all.. I'm fat (partially because of 1 of my diagnoses, insulin resistance that raw beauty kristi also has), so that's what doctors and people see and they limit themselves to that.. It's exhausting.. Anyway, sorry for this book of a comment 😅 Thank you so much for raising awareness and being so honest and open about the experience. 💜
I’m SO sorry that the medical community doesn’t take you seriously and that they’re so fat behind. You deserve to be heard and respected. Sending you hugs
Sorry you're going thru all this :( I cant even imagine ......but thank you for posting as it just helps me be a better person when I cant see the pain or hurt people have. So easy to dismiss....Really opened my eyes
I'm glad i found your videos. Ive been trying to self diagnose for over 10 years and it wasnt until the last year when I met some people who have helped guide me. My next step is finding a doc who can diagnose me. I doubt I will find it in the small town I live in.
Blood can pool anywhere below the heart. My blood pools in my abdomen, at the backs of my arms above my elbow and knees. Only in the summer does it pool in my feet.
Thank you so much for your videos about your conditions. I think my daughter (with POTS) will get an EDS and maybe MCAS this month. She really struggles to eat enough. I really hope the doctor doesn't ask her to cut out food. I also want to caution people before cutting out food groups as it can trigger an eating disorder. Please don't cut out so much that your body goes into energy deficit!
Thank you so much for putting out this good information! I’ve had health issues for many many years and I’m just starting to put all the pieces together and am of strong belief that I have EDS. I have been diagnosed around 10 years ago with a blood pressure disorder, where the blood doesn’t come back up from my lower legs. I have at certain times of my life had fainting spells. I can press my thumb to my wrist. I have Raynauds. Had to have hips replaced around age 50. My stomach gate stopped working and I had major stomach surgery in 2010. There was also a hernia that they repaired. Had to have some other surgeries that I won’t go into here that have to do with very likely things relating to a tissue problem! I brought it to my doctors attention that I think I might have EDS. I don’t think he knew very much about it though he’s a decent family medicine doctor that I see at the VA. ( I’m a veteran). I have very severe chronic pain that sometimes lands me in bed all day. But much of the time I can do most things. It’s just that I do most things with an immense amount of pain. My doctor says he’s gonna have to justify me seeing a geneticist and he can only do that if I first prove again that I have a heart murmur so I’m getting tested for that on Tuesday at the VA. I was diagnosed many years ago with a mild heart murmur. I’m really really hoping I can have some improvement in my life and in my body. I am 59 now. I am very scared about my future. I hope they don’t deny me getting genetically tested at least! I will ask about the low-dose naproxen! Thank you!! You look so healthy in this video, btw! Most people don’t believe me when I say that I’ve been diagnosed with fibromyalgia. They can’t see it on me so they don’t believe it. I would like to have a diagnosis of something that explains the pain.
Compression socks annoy me, but I do have size 18 feet and that might be a factor. I wear the compression calf sleeves like the marathon runners wear to prevent shin splints. They're tight enough to help manage my POTS a bit, and also come in some really fun colors. I also get saline infusions from time to time, when things flare during hot months. There are several different types of medications that can manage POTS, but unfortunately a lot of them aren't even on doctors' radars to treat POTS. A combo of Adcirca and Guanfacine manages my POTS, but what works for one POTS patient might not work for another POTS patient. I have hypermobile type Ehlers Danlos syndrome.
Hi Kait - these two videos have been SO helpful to me. I have cried watching them both. I appreciate these deep dives into your conditions so much and I know it must be strange to share it with the world but I am so grateful you have, I am learning even more than I already have through you. I also watched your video on the BBL lasers for rosacea, as I struggle with that too but now I am wondering if it's not POTS? POTS also causes flushing - I'm not sure it would matter but curious if you've discussed this with any of your doctors? Thanks heaps again for putting this out there
Oh Kait, again you are a wealth of knowledge and are helping to educate us all with and without EDS. I still get so upset at that Uber driver and how he treated you. Since hEDS does not yet have a genetic test yet in your opinion does it make sense to go to a geneticist? (I recently had a Rheumatologist refuse to see me and referred me to a geneticist but didn't refer me to anyone) Also thank you for the resources you sent me.
If you think you have hEDS, nope. No genetic test for it, you can only be diagnosed via a clinical test where a physician asks you a million questions and bends your body in certain ways. You need to find a physician that can do that, which is why I included the EDS Society website. Providers there are familiar with rare diseases beyond EDS too
@@kaitgardner I did have an orthopedist do all that and said she felt I had hEDS due to her findings and my family history that was about 2016. I think my primary now doesn't know what to do with me and the Rheumatologist doesn't want to deal with me or knows he can't help. So thank YOU for your resources.
Hello Kait, Thank you so much for sharing. You are a very well informed lady! I am impressed with all you have to share. My daughter is struggling with EDS and the many, many symptoms that come along. She is nearing 40 and the symptoms are becoming far more intense. We have been to of course many MD's over the years. I am very interested in finding out more about a specific physician with EDS that you mentioned in your talk, that sees patient once a year (?) with EDS (and she had EDS). Thank you so much for your time, and keep at it, you are an amazing person. I will keep wathing for your update shares.
Kait! It’s been a while since you posted this, so I have to ask - how’s the tattoo doing? I’ve read/heard/been told we can’t get tattoos because they “don’t take” on our skin; that they would cause a reaction, or cause weird scarring, or basically the ink would be rejected by our skin. I’ve wanted to get one, but bc of all of the sources I’ve heard that from, I figured it would just be a waste of money and ugly ink blob, at best, and an ER visit at worst LOL.
Hi Kait, Thanks a zillion. Your courage is amazing. You give me courage by hearing this. My liver enzymes are not good I don’t drink but the Drs look at my ggt n say it would help if you gave up drinking. Is this perhaps a common thing with Eds
Would love a "What I Eat in A Day" video.. I should be eating a paleo diet due to SIBO and I literally can't give up all my favorite foods (like you I'm picky!)
Thank you for making this part two!!!!! You give so much helpful information. I appreciate you. I wonder if u have ever been tested for Mold in your body? I just ordered the book “Breaking the Mold” (haven’t read it yet😜). I have SIBO, MCAS & guessing I have EDS (i have enough to pass the test-but not diagnosed by a Dr). I am hearing that Mold can cause SIBO & other issues (especially constipation & exhaustion,, which I deal with). Thank you for all the helpful tips. I too love alcohol & it was painful to quit 😘😜 Sitting by the fire just isn’t the same. Please make more videos as you learn!!! ❤
My eyes have EDS, I have dry eyes due to my EDS- Classical type. I have my eyes going blurred on me even though I’m wearing my glasses. My Neurologist’s thinking I have Dysautonomia especially POTS, but I don’t know what the plan is to test me for that. I’m hoping they will do something. It took me 48 years to get my diagnosis. You don’t need negative people in your life. If they can’t handle you in your worst times then they don’t deserve you in your best times!
@@kaitgardner I hope so, too! And yes, it is disgusting that it takes that long! I tried to find a doctor that is in my area that is familiar with EDS but I couldn’t find any. Ugh! I live around “ Music City “ and I can’t find any primary care physicians that are familiar with EDS. I would want to change my doctor to one that is very familiar with it.
I have been doing a MCAS protocol but feel that I don’t have it. I’ve had SIBO for years and have been dealing with bilateral si joint dysfunction for 7 years. Recently 19 months of long covid. Mainly dysautonomia . Was wondering if you have done or considered any brain retraining programs? I’m so sceptical but I don’t know what else to do. I am starting to get depression mainly because of my brain fog and fatigue. My functional doctor recommended it The Gupta Program. I don’t know if it’s for me. I started LDN 6 weeks ago. I started at 0.25mg because I was scared! Thank you for sharing. I cried when you cried. I have had back pain since I was 29. It’s been 7 long years. I am praying the LDN works for me! It’s only been 6 weeks and I’m on 1.5mg. Sorry this comment is all over the place I was just excited we have been through so many similar things! I’ve had countless rounds of prp and prolo but it never helped at all. Watching from Australia x
Stick with LDN as long as you can. It almost entirely eliminated my chronic fatigue and it reduces my pain to a more manageable level. I started in august 2022 at .25mg and just TODAY I finally got to my final dose of 4.5mg! Takes a long time to build up but it’s worth it. But if you don’t have side effects then you can increase more quickly!
My long Covid Dr also recommended the Gupta program. It costs several hundred dollars. Instead I go on YT and listen to Tony Robbins, or Abraham Hicks, two motivational gurus. Two new podcasts I listen to (I have HEDS) are Jay Shetty and Ed Mylett. I'm also a musician, so playing piano and going to rehearsals help my brain. And finding a PT who knows the Muldowney method. I live in Minnesota, btw.
🌷I have hyponatrimia low sodium in blood. Many trips to ER with either low or high blood pressure, or finding no pulse, or fainting, before getting proper diagnosis. Daily now I rely on at least half teaspoon sea salt mixed with scoop of Dr Berg Electrolyte powder -- or I'd go into kidney failure. So yes minerals are so important but rarely are we educated by our doctors on this. Frustrating. I'm glad you're finally getting the right help.🌷
lol… I found your video at 420 likes. I agree with you about cannabis. I have a medical card where I live and it helps my mood, muscle stiffness and pain. Also agree with you about cutting all forms of toxicity and stress as it does a number on our dysautonomia. I’m three years into my diagnosis and just turned 50. I’d like to add that Hormone Replacement Therapy was started 4 months ago for me and also helping as I had terrible flares right before my menstrual cycle. I think declining estrogen is a big factor as women and it exacerbates EDS, Dysautonomia & MCAS. My gastroenterologist found my MCAS in my small intestine through a biopsy during an early colonoscopy a couple years ago.
Love my weed too! I consider it my “medication “, lol! Glad you have been able to find better ways of managing/coping w/chronic disease. I’m in constant pain most days, but I just push through. I have found the cannabis/cbd does help and much more affordable than medical care. I have terrible insurance through my employer so testing and investigating a potential problem is out of my price range. I like your channel, you say what’s on your mind w/out pause-but in a respectable manner, refreshing! 👏🏻👏🏻👏🏻💄❤️💄❤️
this community is great , there just not enough ppl be talking abt it.i am 18 and has a family history of this but no one knew what eds is and just thought it was bad genetic,which is true lol
I kept getting dismissed before I finally was told I have heds, fibro and dysautanomia. Went thru so much testing. Pt made it worse then once I knew I had heds I found a pt specialist that knew about the condition so it’s helping a little now. But for a while drs just said they didn’t know what was wrong with me but didn’t want to try to figure it out neither. After getting dysautanomia I did not feel free anymore. It took over my whole life for a while and not being able to walk like I use to has made me pretty depressed
thank you for sharing this❤. Have you checked your iron and ferritin levels? I have the same symptoms as you and my ferritin was low but building it up with iron supplements has helped my pots symptoms a lot.
Fantastic presentation. Thank you for sharing. I have noticed that autism has comorbidity with much of what you describe. Older adult females are very underdiagnosed. Masking or camouflaging wears out with some, and symptoms become more evident. I am saying this in case there are undiagnosed autists in your audience who have not ever been evaluated. Thank you again for sharing such valuable information and your experiences.
I'm discussing an autism diagnosis with my therapist but am honestly not sure if I want to know. I've heard there are pros and cons to knowing. Thank you for suggesting this in a polite, respectful way. I've gotten comments like, "You're just autistic" that are super mean and I really appreciate that you took the time to be thoughtful.
@tomsale5142 you ask a very astute question. How collagens and various collegen conditions relate to the brain and its functioning and in relation to what is termed, "the autism spectrum" are great intersecting considerations . Thank you for your comment. It is appreciated.
@@americatruecrime thankyou it's the Asperger's I need to understand the complexity and reason of this.Also the atlas seams to play a huge part with the hypomobility pain and CCI As a child itused to crack and pain used to run over my head my mum used to hear it Dr said growing pains!.I if course has sod without knowing Have you found anything what helps your pain.I also ponder how much pain is the Asperger's itself larger fight or flight response with weaker frontal cortex and the reason for OCD.
Thank you for sharing your story. Have you found Lyme to be a factor for you? I was diagnosed with fibromyalgia first, then PFD, then Lyme, then hEDS, POTS, CFIDS, and more. I have cUTI (embedded UTI) too. I have been sick since I was 6 and did not receive the Lyme and EDS diagnoses until my 30’s.
All of my doctors have said I don't have any reason to consider Lyme's but it's on my list to look into if my hEDs/POTS/dysautonomia treatments don't work. My partner's Dad has Lyme's right now and I don't think it's a factor for me.
I was diagnosed at 30 with depression then had hay fever then diagnosed with asthma then 10 years ago diagnosed properly with allergies to pet dander pollen etc - allergic rhinitis then not long after lost my taste n smell then diagnosed with nasal polyps. Then outta nowhere late last year a stressful event occurred n I started experiencing dyspena - hospitalised they just said it’s anxiety or copd… not sure how this can happen all of a sudden. So after much gaslighting from drs n specialists I researched n found that I most likely have mcas with histamine intolerance, I also get hives from pulling if the skin ie waxing. Now I’m getting asthma when I have a sauna, hot bath or shower!!! But the reactions to gluten, caffeine, chocolate, soy n alcohol have been a lot. I been on herbs n supplements along with low histamine diet for 2 months, no massive improvement. See my naturopath soon for follow up. Also have methane sibo. I’m sure I’ve forgotten other things I have but yeah it’s not fun at all. Very distressing n lonely.
I just got off the phone with the Stanford hospital to get my EDS testing 😢I had sibo and I have Ibs you name it 😢 my 21 year old son has pots I don’t know who to turn too 😢😢😢i been waiting for ucsf hospital for two months now they tell me they don’t really treat pots and Stanford hops tola doesn’t take our insurance 😢😢😢
I live in cape cod …great healthcare right? No it’s all nurses for your Gen Pc. Now I LOVE and respect nurses but when they’re given 15 min per patient, as a general pc? ? They don’t care!! I had one say to me: “maybe stop looking for something to be wrong with you”….ive actually given up. I need certain tests done post cancer and sleep issues and I said to my new pc ( no better ) that I want a six month to one year break of no tests!! I’m just so tired of going to drs ( I know I need something more than whom they’re sending me to ) going to drs to find out nothing. It’s my anxiety after all!!
From your first video what happened with the nodule on your thyroid? I have very similar symptoms to you and I also have the nodule on my thyroid. I have been told it’s hormonal related but I’m not convinced. Thanks
Hey Kait, how are you doing now? Still doing well with the LDN? Can you explain how you were misdiagnosed with MCAS? Just been put on mast cell stabilisers because I had high tryptase levels. Weary of all diagnoses at this point but it seems i shouldnt be about this one. Thanks!
LDN is life-changing! The initial diagnoses I got were just based on a clinical exam so they weren't official diagnoses. When I saw specialists, my allergist noticed I had dysautonomia, not mcas. I don't have typical mcas symptoms, it was more gut problems.
hEDS definitely does cause insomnia, my doctor confirmed. I take 3mg of melatonin every night, sleep with a white noise machine and black out shades, don't use any screen devices an hour before bed, and most importantly - I go to bed and wake up at the same time every single day, even on weekends. Also, weed really helps me.
Oregano is amazing for menstrual cramps, my house is full of it, just be careful cause its abortive and you'll bleed a lot. I use it for my scalp (I have seb derm) but also for muscular pain, and is a mosquito repellent, i had being treating my hand pain with it, it does make you smell like a salad, but it does work! I'm still hoping to find a nice geneticist, my cardiologist are a bit not anti meds but more towards the mechanical approach of being better, which I kind of agree with but gets harder and harder when you have a lot of chronic pain, fatigue and adhd brain shit.
Don't get any more tattoos. The ink ends up in the lymphatic system. You don't need any more health issues. Mel Thompson was covered in tattoos and had EDS & POTS and she passed away a few years ago. Learn fr her. Don't tattoo!!
I was in PT for 5 years and it did virtually nothing for my pain. My pain is not affected by cupping, massage, acupuncture, PT, etc. Some people find that helpful but I didn't. I do exercise though, building strength is important for EDS and cardio is important for POTS.
All of these things you are doing are bandades and not treating the root cause. I spent my entire life In the symptom management mode... Only to get much worse because of it you leave infections and vitamin deficiencies untreated for long enough While you manage symptoms you are bound to get worse later and it's a whole new ball game when you are severely disabled unable to Walk yourself to the bathroom.
@@kaitgardner you are the same as me except I have seborrheic and mast cell. I went 53 years before diagnosed 58 before actually got help.. my heart goes out to all. My children have it my daughter is far worse than my sons. Nobody doctors know anything about it. Do you tear muscles and joints pop out?
@@kaitgardner kait I do same as you and I am free also. You are exact same as I was. I destroyed myself physically. I also have diabetes and neuropathy.
LDN it’s for heds or the others? I suspect I have elder danlos. I already went a bunch to he doctor didn’t find anything. I had tear labrum left hip last year and now I have pain at my right hip. Please where I can find a doctor can help me diagnosis and treatment ? I don’t know and didn’t understand much ehler danlos.
Thanks for sharing, once again relate to a lot of this. LDN has been great for me too! I started a few months ago. Agreed on the alcohol not just on the positives of cutting it out but was also a pretty heavy partier. I’ve been off it for almost a full year. I think we especially have an affinity for alcohol because it’s a nervous system depressant and with dysautonomia the system is out of wack! Like there’s a physiological reason you were enjoying a drink every day. For anyone coming here who also has Long Covid, Triple Anticoagulant Therapy has been working for me too, I highly recommend looking into it. Your little energy dancing video made me laugh, after starting LDN I listen to music and sing and dance in the shower now to activate my vagus nerve and I swear I’ve busted those same moves hahah. so glad you’ve made progress, thanks for raising awareness about what’s working for you ❤️🩹❤️🩹
Wow, that totally makes sense about alcohol! I had never heard of that and had always wondered why I felt the need to have a drink every day. It's easy for me to stop after 1 but I ALWAYS crave that 1. Now that alcohol is no longer part of my daily routine, I don't miss it at all, but for years it was a big crutch for me. My parents also used to be alcoholics so it was a normal part of my 'culture.' Sending you gentle hugs!
Yes! We need Validation NOT toxic posivity!
I feel this so hard
💯 %!!!!!!
I want to thank you for your videos. I am 54 years old and I was diagnosed at 25 when i was pregnant with my daughter. Which was disastrous. I have yet to find a doctor to help me. Your videos actually made me realize that all my self diagnosed ideas were spot on. The problem is actually getting diagnosed by a doctor. Then getting treatment. I was finally diagnosed with hyperparathyriodism after 8 years of being stuck on a couch and put on antidepressants because I’m a woman it must just be depression. Now because of inactivity for so many years the EDS has just destroyed me. I also crushed c3,4,5,6 in my neck and compounded discs in my back in a car accident so being diagnosed with depression instead of hyperparathyriodism has caused so much damage to my body. I am a prisoner in my own home. Your videos have given me hope. I know i have POTTS, MCAS,a nodule on my adrenal gland, and labrum tears in both hips. Getting diagnosed seems to be just a dream at this point but your videos have given me the fight back. Thank you
I'm so sorry you have yet to find providers that will listen to you and provide the best care. Have you tried looking at the provider section of the EDS Society website? You can search by location. I travel quite far to get the best care I can. There's also an EDS clinic in maryland (I live in CA) and they're able to treat me remotely.
I have pots and think I probably have mcas. I have a labrial tear in one hip and see a few people mention that here. How is that related?
@@lovetolearn881 I don't think it's related to POTS or MCAS, but it is related to EDS
I’m 50 and just started hormone replacement therapy. It’s helped a lot of my joint issues as declining estrogen seems to be connected to my MCAS flares and joint laxity. Not a cure, but definitely helping my hip issues and lower back pain. I have many cervical disc issues too. Even without EDS, estrogen is linked to joint issues and histamine intolerance.
I’m sooo curious why there is so much of this going around with WOMEN?? 🧐 yes maybe we’re finally having more diagnosis? But no something feels off!? Like what’s going on with us? What’s causing this?! It’s wild
Rock on girl! It took emergency open heart surgery for my daughter, at age 46, with an aortic dissection, and genetic testing to find the cause. Consequently, I was diagnosed at age 68. I so relate with you, and have held my pain in my whole life. Now that I’m diagnosed, and do express pain, people think I’m worse now, but it’s only because I never complained before. Thanks for doing what you do! Your information is extremely helpful, and you express how we feel so well.
Thank you! Sending you lost of love
I have hEDS, POTS, and MCAS. I was recently diagnosed after 26 years of suffering with it. The doctor search is exhausting and once I find one that knows what they are talking about it’s always “POTS just sucks” or I just have to live with the pain. I had surgery in January on my hip because it tore due to my EDS. They ended up losing my blood pressure and pulse on the table and couldn’t complete it. Now they say I just have to live with a torn hip 😩 (im 26 years old). So frustrating, but im so glad you are talking about this online!
I’m so sorry. I had two torn hips and had surgery on the right side at 29! Luckily it was successful. But one time when I was getting a steroid injection in my lower back for pain, they refused to sedate me even though I warned them I would pass out. What do you think happened? My blood pressure dropped so badly on the table that they couldn’t go through with it. All because they didn’t listen to me. Absolutely infuriating!
I can’t wait to watch all of this. Your last video on this channel actually brought me to tears because I related to just about everything you said. It’s so hard to find balance when you’re working full time out of necessity and dealing with chronic illness. So many people - doctors included - don’t understand how much chronic illness affects every aspect of your life. Thank you for sharing your journey and helping me feel less isolated and alone 💗💗
Absolutely! Doctors are the worst at empathizing, it’s maddening. Sending you love ❤️
You’re absolutely right! My husband claims to know, but he doesn’t, and tells others he has compassion and empathy, but he doesn’t 😂. Mine has been really severe for over a decade now and I tried to talk to him a while back about how it had gotten even worse in the last few months, in intensity as well as in new ways. His response was I know, but there’s no way he could without me telling him. It just made me realize, if he has that little interest, there’s no wonder why doctors show so little interest.
Thank you for saying what you did in the grief section. I have cried over my POTS diagnosis and countless gastro symptoms too many times. I need to be more patient with myself. This journey is not over but being patient to ourselves is key.
Yep. And it's ok to feel what we feel - grief and healing are not linear. Sending you love.
Kait, I really relate when you talk about your childhood and your issues not being taken seriously and coaches even treating you poorly due to their ignorance. I tried to play soccer for a time and actually loved it, BUT every day at practice when we had to run laps, on about the 3rd lap I’d get really lightheaded then pass out and throw up. I’d come-to to my coach yelling at me in his heavy accent that I drank too much alcohol and mocking me saying I “got drunky on the alky and can’t do practice”, etc. I kept telling him I didn’t drink, much less get drunk and I don’t know why that happens. It was extremely embarrassing and he made it even more so. After that I didn’t even try to play any sports, even recreationally with friends.
I was told growing up that I was just weak, the runt of the litter, had a low pain tolerance, and many other things until I believed them. Most memorably it was from the person that gave birth to me. So now getting validation that, for example, when I walked across the room in home economics and my knee dislocated up to my thigh wasn’t just weakness, it’s actually quite emotional.
But even as an adult, my husband told me my periods were no worse than any other woman, I just had a low pain tolerance. Actually, I suffered with endometriosis for years before someone finally cared enough to do exploratory surgery and found that it was tied around several areas of my stomach so I couldn’t even cough without serious pain.
Anyway, I wanted to thank you for sharing your story and the information you’ve learned on your journey. You’ve helped me a lot just with not feeling so alone, and I’ve already learned things about EDS that I hadn’t come across yet in my own research and bc I don’t have access to doctors in my state that are knowledgeable about these conditions. There are things you’ve shared about ‘connecting the dots’ between symptoms and EDS and comorbidities, that I knew nothing about but they FINALLY make sense thanks to you! ❤❤ (I have VEDS, MCAS and POTS)
New subscriber here. I just found your channel(s) last night when I couldn't sleep due to the new moon (Is there anyone else with that issue?). You've brought back so many memories, especially of those most difficult days pre-diagnosis. I remember being told as a very little kid: "Pull yourself up by your bootstraps", "It's not possible to hurt everywhere", and the very skeptical " Yesterday, you said it was the other leg that hurt". That led to two decades of hiding my pain and trying to pretend to be normal. I'd blame my falls on tripping instead of being able to explain that my joints pulled apart, and I got the reputation of being clumsy. It's a lonely place, trying to fit in while knowing something is seriously wrong.
I was finally diagnosed in my late twenties after not healing as expected from a car accident. That was in the late 1980's, however, and there was so very little information available. In a time before Google searches and TH-cam videos, I went to a medical school library to do my own research. Even there, the lack of information was disheartening. Eventually, I found the EDS Society. They were able to mail me a couple of very basic pamphlets that I could share with family and friends. So much was not known then, but I finally felt seen.
In the decades since, my symptoms have progressed dramatically. In my mid-sixties now, I have a few pieces of advice: Do as much as you can while you can, especially things that will leave you with wonderful memories, while at the same time taking care not to strain your joints. Be open to accepting a motorized scooter, or even a wheelchair, before the day comes when you absolutely need one. They are just tools to aid your mobility. I wasted too many years trying to not look disabled, while watching opportunities pass by and my world get smaller. Surround yourself with caring, empathetic people. It's so destructive to do otherwise. And finally, get therapy if you need help dealing with the pain, grief and anger that comes along with disability. It has allowed me to dwell in a place mostly filled with peace and gratitude despite being essentially bedridden these days.
One more note regarding the KT tape... For years, it was of tremendous help to stabilize my knees, shoulders, etc., but now it's too harsh. It seems my skin has gotten even more delicate with age. Now when I gently pull the tape off, it removes the top layer of skin. Any suggestions would be appreciated.
Thank you so much for your postings. Wishing you less pain and more energy. Peace.
I was diagnosed last Sept with multiple sclerosis, and really related to your last video about how it changes your life, feeling like parts of your life are over (travel, etc). I have also been taking LDN for a few months after doing a lot of research on it. I am now at 4.5mg for a few weeks. I am so glad you’re sharing about it! By the way, Skip’s pharmacy in Florida has the cheapest prices. A 60-day supply of LDN for me is $70. And I also live in CA, my neurologist suggested Skip’s because I was paying too much at a local compounding pharmacy. They’re amazing.
I have wondered also about EDS lately. It was actually a tiktok of someone showing how they could touch their thumb to their arm (my party trick for many years) and splay all their fingers out backwards. I also had my hair dresser comment on how my scalp was really thin, as in she would brush the hair and the skin would lift up so easily with it. A lot of random things like that over the years. And lots of chronic pain too, but I always just blamed my weight.
I was the opposite of you with my MS diagnosis. I didn’t want a diagnosis. But it was pretty unavoidable since my first attack was so severe. I lost sensation from the waist down, could barely walk or stand in place without falling, so much pain, and lots of other stuff. But basically I didn’t even accept my diagnosis for months. And delayed treatment because of it. Which is dangerous with MS. But, as you are finding out, there are many reasons to be skeptical of conventional healthcare and the real root-cause help usually comes with a hefty out-of-pocket expense.
Unfortunately I can’t afford most of the testing and medical care that would be helpful for my condition, so I do much of my own research and apply what I discover. One big component I feel to all of these chronic conditions, is trauma. So I’m trying to work on that.
As you mentioned, it does give one a sense of what really matters in life. And the permission to rest, set boundaries, and go easy on yourself. I am learning not to hate my diagnosis. And I have finally started treatment (a disease modifying therapy for MS), along with diet changes and supplements.
The deeper you go, the weirder it gets, when you start learning how viruses and heavy metals work in the body. This all culminates in the gut, and depending on genetics, can display differently for different people.
Finally, I am around your age, though a little older, turning 35 in a few months. And I haven’t had children yet. I feel like it’s an especially niche feeling, the fear that happens in this space, the intersection of chronic illness and family planning after 30. But I know that if I or you are meant to be mothers, we will be. And I pray that our future babies are full of health because we chose to heal ourselves. 💕
I am so happy for you that LDN is providing such relief, and that your perspective is being refined. God bless you, and take care. 💕
Sending you gentle hugs ❤️
My.mum.has severe ms surely heds as my grandfather surely had I have heds diagnosed Asperger's diagnosed late I have fybromyalgia CFS before ldn.not working for pain but maybe fatigue.stress brought in my mum's ms after grandmother funeral no medication worked
the toxic positivity - this brought up AlOT- you are right on track there- hell yeah we should be able to grieve!!
great video all around❤️
Boooooo to toxic positivity! Yaaayyyyy to vulnerability!
@@kaitgardner for months and months I have had stress and pressure around putting on that attitude of positivity KNOWING what they will greet me with if I don’t. I finally just had to make the right choice… fuck THAT feel it up. and keep the gratitude in my life flowing 🌸
I just came from your first video and wanted to give an update! Since being diagnosed (still only working diagnosis for POTS) I've had several specialist visits schedule, saw a gastroenterologist and was put down for a colonoscopy later this year. I've gotten compression socks (I hate the feeling too) and they kinda help but mostly just make blood pool in my knees and thighs instead which doesn't help the pain there. I'm currently shopping for mobility aids, trying to get a second hand cane from a family friend to start with. I've also done a lot of grieving. The more I open up to my friends and loved ones about everything going on and how my life is going to be changing, the more I realize just how much I've lost, am losing, or have never had. I'm taking one day at a time, but it's been so incredibly hard. My symptoms have gotten to the point this year that I've been out of work for months and don't know when/if I'll be able to get a job suitable for my condition. I just wanted to say thank you, not only for that first video that I found back in February after I first got my diagnosis, but for continuing to post REAL content. It can feel so isolating living with chronic pain and illness, especially at a young age when no one else around you can truly get it. I hope you have an amazing day, and I'm so glad you had a great time at Coachella!!! I'm hoping to go to another anime convention this year, but with medications, preparation, and mobility aids ready before hand. Tons of love from the east coast ❣️
Thank you for the love, I really hope you find relief this year. I’m super lucky that my conditions have never impacted me to the point where it can’t work - I just had to change industries to be able to work from home. I’m sure that must be so frustrating. I’m so glad you got your diagnosis, and I’m sure you’ll find more tools and meds that help. It took a lot of trial and error for me and I’m still just in the process of initial tests and treatments. I might start beta blockers for POTS soon but my POTS specialist can’t see me until freaking December
@@kaitgardner Oh trust me I know 😭 They can't even give me a time frame for when I'm going to be doing the tilt table test. Just on a waiting list with no further instruction.
Kait! This is so helpful. I'm still grieving about my ADHD and depression!!!!! And I hate hate hate it when people tell me to "get a planner" and "use timers" to help me cope. So annoying. Also happy that you've found treatments that help you!!!
Totally. I’ve heard people tell me to “try yoga” and my head almost exploded
One of the reasons that higher compression garments are recommended is that individuals can also struggle with blood pooling in the pelvis, or in the abdomen particularly after eating. Consider looking into postprandial hypotension. Some folks find that wearing high waisted compression shorts, like Spanx help, or a postpartum abdominal binder. Try and not think about it all or nothing. I find it is still helpful to wear stiffer athletic leggings when doing activities with prolonged standing, running errands, ect, or if I have other triggers working against me, like eating, heat, impending period, ect, and wear down a size if I want some extra compression. I hate feeling squished, so I take them off as soon as I am going to be sitting or resting again. I don't feel noticeably different wearing them, but do typically have more stamina, and a little less fatigue when I do. Think situational.
Between me and son we have all the symptoms that you have 😢I am so glad I came across your channel yesterday ❤❤❤
Thank you for this video, I can relate to much of this. I miss my previous life and am so frustrated with myself and others for not understanding, but I’m mostly frustrated with the medical profession and their lack of knowledge on these conditions. Their only solution is anti-depressants. My doctor once told me “all I can do for you is give you a prescription or an operation, and you don’t need either.” Great. 🤗
UGH that is so frustrating. Sounds like you need a different doctor! I won’t give a doctor the time of day when they give me that response. Sending you gentle hugs
Thank you for sharing! My oldest child was diagnosed with POTS at age 12 (now 22), likely triggered by a virus and has learned to manage symptoms quite well. My youngest was just diagnosed with POTS in December, 3 years after having mono. I knew POTS, or at least thought I did, but my youngest has slightly different symptoms and may also have EDS, which is a whole new thing! It's really helpful to hear your experience!
I have grown up with so much shame and a shaming family, that just blow off how I feel. Its been challenging to say the least. I was doing the best I have for years and boom! Feeling the grief, disappointment, AND how its time to prioritize what feels good and allow myself to let go of the fear about money, time, etc. Its requiring me to drop into DEEPER trust in something beyond me.
I got emotional alongside you when you were giving your pain update ❤ I’m so glad you found something that is helping!
Awwww thank you! What’s your first name by the way? I always appreciate your comments but I only know you as meepmoopmeep! 😂
@@kaitgardner lol! My name is Sarah. I made my account so long ago and I’ve just never changed the name
@@meepmoopmeep1 Hey Sarah! haha
Fantastic. We've been on this road with two of our kids. Never easy. I sent your first video to my 16 year old. She's struggling with the non empathetic friends. Heds is from me. I was so mild didn't know I had it. They are not a mild expression .
Awesome video about zebras! This is the first video of yours that I’ve seen and I’m totally subscribing.
Thanks for being here! If you haven't seen the first video in this series, it's on my makeup channel but it's super helpful context: th-cam.com/video/Csj3bDtRbCA/w-d-xo.html
LDN has been a game changer for me too! I take so many supplements daily but this one was THE biggest wow I feel better why didn’t I know about this sooner. It was me researching finding it and trying to find someone to prescribe it as no doctor will or gets the purpose of it in low doses.
I had a serious reaction when I started taking it too but my functional doctor did a Detoxi Genomic test and the results in a nutshell were I don’t detox properly at all and have a VERY strong reaction to medications. Therefore had to start very low dose and tweek it like you did very slowly. I really wanted to see if I could get it to work for me. Soooo glad I did !! Be patient, listen to YOUR body ,do what works for you!
I also couldn’t tolerate it at night so I take first thing in morning. I’m 47 and I felt like an energy of a much younger person. I cried too as I’m like this what feels like to not tired and have energy! Wow 😊
Ageless RX online is an option too for people who don’t have compound pharmacy nearby for LDN.
As for food I cut out gluten and alcohol for 2 years until got my body to a more calm state and now it’s a treat to have a drink. It does suck sometimes , but to feel ok and have a decent day it’s worth not to have alcohol. I do miss gluten sometimes but I’ve been gluten free for over a decade and so there are many options now.
Lastly positivity is fantabulous and needed in our lives ….but grief with illness is a must and totally agree we all need to process and share our feelings. We need to feel validated and heard too. Cut out the BS in life and those toxic people too! It helps .. a lot!
I ended up going to therapy as it also helped with my grief and being able to process this very lonely journey that’s been 47 years.. still looking for official diagnosis ..as I’ve been my own advocate. This is hard as hell!
Thank you so much again for sharing your story ..keep inspiring and helping ❤
I’m super frustrated, my LDN stopped working and now I’ve been in a really bad pain flare up for the first time since I started taking it. Has that happened to you?
And I agree on gluten and alcohol. I very rarely consume those now, and I truly don’t miss it!
Hi Kait
Wow, you're dealing with a lot. While I don't have any of your chronic illnesses, I sure can sympathize with chronic pain. I have osteoarthritis in my hands, knees, and back. As we know this is also degenerative, so it has been an adjustment; going from serious equestrian pursuits, to mellow daily walks with my dogs.. Ive had 2 full knee replacements, plus spinal decompression surgery to fix a pinched nerve that resulted in severe sciatic pain. Following months and months of rehab, I can say I am doing much better. All this to say you're not alone. I'm so glad you got diagnosed and are finding therapies to help you manage and get stronger. Thank you for sharing your story. I wish you well.
Sending you gentle hugs
Thank you, thank you, THANK YOU for putting this out to the world! Keep sharing your story & info. I needed this information SO much. You may have saved me & just know that.
When I have medical appointments, doctors have started asking me if I'm in the medical field. Because I've had to learn SO MUCH on my own that now I sound like them, haha. The fact that it's called heath"care" is a joke. We're looking at moving to Europe because my EDS is going to only need more management and the U.S. refuses to try. The amount of doctors who shrug at me and say "you should just expect a lot of pain" is infuriating. And, just a quick word of warning: the EDS website doctors are always versed in EDS. The only doctor near me who was on that website only mentioned it once in a medical paper (the paper was actually about something else) and that somehow qualified him for the site. He barely knew enough to diagnose me. So, it's a great resource, but not a guarantee. And I totally agree about alcohol. Cutting that out is a major game changer!
So frustrating you have to move because our healthcare system here sucks. But I hope you have a great experience!
Totally, some of the doctors on that site have been disappointing but it’s a good starting point.
@@kaitgardner 100%
Yes, you get enough "hangovers" without consuming any alcohol at all. That's how I described my first pregnancy. (Before I had ever heard of EDS)
so great you are feeling better on LDN and in general! ❤❤❤
It’s LIFE changing
Thanks for your voice! I love that you are sharing your experiences.
I'm 69 and finally got a doctor who has hEDS and he saw my history he has referred me to a whole team to help me with my daily life!!!
That's amazing, good luck!!!
Omg Kait what an incredibly encouraging and helpful video ❤ thank you so much for taking the time to help others
Of course, always want to help if I can ❤️
Hi Kait,
I watched Part 1 on your other channel and came here to watch Part 2. Thank you for sharing your experience, and I'm so sorry that you have struggled and suffered so much! I can relate SO MUCH to doctors not taking you seriously. I've been horribly ill with SOMETHING for almost 3 years now, and no one seems very interested in trying to find out what is causing my bizarre and debilitating symptoms.
My symptoms are different than yours, but my suspicion is that I have some type of autoimmune condition (and maybe several other conditions alongside it). I have had to resort to trying to figure this out on my own by doing deep research, and then going to my doctor to ask for certain lab tests. He has begrudgingly agreed to a few of the tests, and he did refer me to a neurologist.
The problem with referrals through insurance is that everything takes so painfully long, and my appointments/tests are literally months and months apart. And I can't even get a referral to a rheumatologist, so I am going to have to pay thousands of dollars to see one outside my insurance.
Here's the real kicker in all of this: my primary care doctor wants to refer me to mental health, because of my "anxiety" and "depression" (which I never told him I was struggling with!). If I have anxiety and depression, it's because I'm very physically ill, and NO ONE is trying to help me! The feeling I get with him is that he thinks all of this is "in my head", and I just need some psychotherapy and I'll be fine. What an A**hole!
UGH. Sounds like you need different doctors, I totally relate. When doctors did that to me, I moved on to different doctors who would listen. It is NOT worth wasting your time on doctors who gaslight you. You can find doctors who will listen and care, it's like dating - you have to shop around and it's worth traveling farther away to get the best care (that's what I do.) I'm so sorry you're dealing with this.
I think I have medicalised PTSD from the gaslighting doctors. I want "anxiety" removed from mine and daughter's medical history.
EDS and POTS (and MCAS) groups on Facebook are really helpful by the way.
Can you please comment on the dysautonomia piece? What are you doing for that? Thank you for sharing your journey Kait. It means a lot to be seen and heard.
Kait, so glad you shared such detailed info and that you’ve found some relief. As a fellow autoimmune sufferer, I know the daily ups and downs!❤️
Sending gentle hugs!
Thank you for your honesty. Yeah, 54 when I got my diagnosis hEDS. I've been there. So many years of trying to be OK! Also, more recently I've gotten potentially fatal blood clots twice, assumed to be brought about by taking HRT once for 2 months. Thinking you could drop dead withing 2 minutes of every moment is a serious mindf*ck. I can't pretend I'm fine anymore.
May I ask what kind of dr did you find? My drs are clueless here when I tell them hey something is wrong with me I have seven out of these 15 symptoms ? For ex…they just look at me
A rheumatologist
Thanks so much for your videos, you give such helpful tips. I just got diagnosed with hEDS, dysautonomia and Mcas, so every i formation already helps so much!
Feel free to ask any questions, I'm here to help! Check out my video called "How to Cope." It's all about coming to terms with a chronic health diagnosis, it might be helpful for you. xoxo
Thank you so much for sharing more of your journey with us. I have some similar diagnosis as you, but not all. I definitely have some things to bring up at my next Dr appt. I'm in the process of going to a pain clinic to get off some of some of this hefty medication I'm on. I also found out that I need major surgery on my neck. I'm really scared, but it has to be done. I've been suffering for over 16 yrs. Praying this will give me some relief!
I'm so grateful for you Kait! Thank you for everything!
Neck surgery sounds scary but hopefully it will give you the relief you need! Just make sure you like your surgeon - being comfortable and trusting them will be important to manage your anxiety. Talk to them about how scared you are and tell them you need reassurance.
Girl I was in the hospital for 2 days no answers could not speak or walk and shortness of breath from chronic fatigue syndrome and fibromyalgia. I had to crawl in my house because I couldn’t walk without getting syncope. The LdN stopped that witching 2 weeks of taking . I flare and have a base of symptoms daily but I can at least get out of bed!! So happy you are doing better!!
You have a refreshing attitude!! Looking for treatment for my son ❤️
I'm new here, and on your other channel (which led me here), and not big on commenting, but I just have to. I always appreciate when "youtubers" share about chronic "invisible" stuff so it can be more known to more people. I put invisible in ".." because I always feel that when people want to see/notice, they can.
I myself have fibromyalgia, dysautonomia and some other fun buddies with less impact and I can relate so much to everything you express here and in the 1st video, especially being "functional" and not feeling in place in either community and the mental load..
Being in Belgium I sometimes feel like we're 10 steps behind (to put it mildly 😂), I have asked about LDN here and they refuse to even think about it because they claim there aren't enough studies about it.. But I think they just don't really know about it.. I've been hopping from specialist to specialist, making people think/comment that I can't accept my diagnoses.. But I feel like there are things that aren't being checked and want to go to the bottom of it all.. I'm fat (partially because of 1 of my diagnoses, insulin resistance that raw beauty kristi also has), so that's what doctors and people see and they limit themselves to that.. It's exhausting..
Anyway, sorry for this book of a comment 😅 Thank you so much for raising awareness and being so honest and open about the experience. 💜
I’m SO sorry that the medical community doesn’t take you seriously and that they’re so fat behind. You deserve to be heard and respected. Sending you hugs
Sorry you're going thru all this :( I cant even imagine ......but thank you for posting as it just helps me be a better person when I cant see the pain or hurt people have. So easy to dismiss....Really opened my eyes
Thank you for watching ❤️
I'm glad i found your videos. Ive been trying to self diagnose for over 10 years and it wasnt until the last year when I met some people who have helped guide me. My next step is finding a doc who can diagnose me. I doubt I will find it in the small town I live in.
I had to travel to diagnosed, most of us do. Check out the EDS Society website for your closest provider
Blood can pool anywhere below the heart. My blood pools in my abdomen, at the backs of my arms above my elbow and knees. Only in the summer does it pool in my feet.
I am 70 and just learning this 😮
Thank you so much for your videos about your conditions.
I think my daughter (with POTS) will get an EDS and maybe MCAS this month. She really struggles to eat enough. I really hope the doctor doesn't ask her to cut out food. I also want to caution people before cutting out food groups as it can trigger an eating disorder. Please don't cut out so much that your body goes into energy deficit!
You should always work with a nutritionist when managing food!
Thank you so much for putting out this good information! I’ve had health issues for many many years and I’m just starting to put all the pieces together and am of strong belief that I have EDS. I have been diagnosed around 10 years ago with a blood pressure disorder, where the blood doesn’t come back up from my lower legs. I have at certain times of my life had fainting spells. I can press my thumb to my wrist. I have Raynauds. Had to have hips replaced around age 50. My stomach gate stopped working and I had major stomach surgery in 2010. There was also a hernia that they repaired. Had to have some other surgeries that I won’t go into here that have to do with very likely things relating to a tissue problem!
I brought it to my doctors attention that I think I might have EDS. I don’t think he knew very much about it though he’s a decent family medicine doctor that I see at the VA. ( I’m a veteran).
I have very severe chronic pain that sometimes lands me in bed all day. But much of the time I can do most things. It’s just that I do most things with an immense amount of pain.
My doctor says he’s gonna have to justify me seeing a geneticist and he can only do that if I first prove again that I have a heart murmur so I’m getting tested for that on Tuesday at the VA. I was diagnosed many years ago with a mild heart murmur. I’m really really hoping I can have some improvement in my life and in my body. I am 59 now. I am very scared about my future. I hope they don’t deny me getting genetically tested at least! I will ask about the low-dose naproxen! Thank you!! You look so healthy in this video, btw! Most people don’t believe me when I say that I’ve been diagnosed with fibromyalgia. They can’t see it on me so they don’t believe it. I would like to have a diagnosis of something that explains the pain.
I meant * Naltrexone
I now have mild scoliosis as well and arthritis.
Compression socks annoy me, but I do have size 18 feet and that might be a factor. I wear the compression calf sleeves like the marathon runners wear to prevent shin splints. They're tight enough to help manage my POTS a bit, and also come in some really fun colors. I also get saline infusions from time to time, when things flare during hot months.
There are several different types of medications that can manage POTS, but unfortunately a lot of them aren't even on doctors' radars to treat POTS. A combo of Adcirca and Guanfacine manages my POTS, but what works for one POTS patient might not work for another POTS patient.
I have hypermobile type Ehlers Danlos syndrome.
Hi Kait - these two videos have been SO helpful to me. I have cried watching them both. I appreciate these deep dives into your conditions so much and I know it must be strange to share it with the world but I am so grateful you have, I am learning even more than I already have through you. I also watched your video on the BBL lasers for rosacea, as I struggle with that too but now I am wondering if it's not POTS? POTS also causes flushing - I'm not sure it would matter but curious if you've discussed this with any of your doctors? Thanks heaps again for putting this out there
Oh Kait, again you are a wealth of knowledge and are helping to educate us all with and without EDS. I still get so upset at that Uber driver and how he treated you. Since hEDS does not yet have a genetic test yet in your opinion does it make sense to go to a geneticist? (I recently had a Rheumatologist refuse to see me and referred me to a geneticist but didn't refer me to anyone) Also thank you for the resources you sent me.
If you think you have hEDS, nope. No genetic test for it, you can only be diagnosed via a clinical test where a physician asks you a million questions and bends your body in certain ways. You need to find a physician that can do that, which is why I included the EDS Society website. Providers there are familiar with rare diseases beyond EDS too
@@kaitgardner I did have an orthopedist do all that and said she felt I had hEDS due to her findings and my family history that was about 2016. I think my primary now doesn't know what to do with me and the Rheumatologist doesn't want to deal with me or knows he can't help. So thank YOU for your resources.
Hello Kait,
Thank you so much for sharing. You are a very well informed lady! I am impressed with all you have to share. My daughter is struggling with EDS and the many, many symptoms that come along. She is nearing 40 and the symptoms are becoming far more intense. We have been to of course many MD's over the years. I am very interested in finding out more about a specific physician with EDS that you mentioned in your talk, that sees patient once a year (?) with EDS (and she had EDS). Thank you so much for your time, and keep at it, you are an amazing person. I will keep wathing for your update shares.
I listed resources in the description box 😊
Kait! It’s been a while since you posted this, so I have to ask - how’s the tattoo doing? I’ve read/heard/been told we can’t get tattoos because they “don’t take” on our skin; that they would cause a reaction, or cause weird scarring, or basically the ink would be rejected by our skin. I’ve wanted to get one, but bc of all of the sources I’ve heard that from, I figured it would just be a waste of money and ugly ink blob, at best, and an ER visit at worst LOL.
Hi Kait, Thanks a zillion.
Your courage is amazing.
You give me courage by hearing this.
My liver enzymes are not good I don’t drink but the Drs look at my ggt n say it would help if you gave up drinking.
Is this perhaps a common thing with Eds
I'm not sure but I'm so proud of you for feeling the courage to look into it further! Sending you hugs
Would love a "What I Eat in A Day" video.. I should be eating a paleo diet due to SIBO and I literally can't give up all my favorite foods (like you I'm picky!)
That could be fun!
I definitely would like to see a video about the financial impacts. Thank you! Hope you are feeling well these days.
Lorrrrrd I could talk about that all day. Had $12k in medical bills in September alone
Thank you for making this part two!!!!! You give so much helpful information. I appreciate you. I wonder if u have ever been tested for Mold in your body? I just ordered the book “Breaking the Mold” (haven’t read it yet😜). I have SIBO, MCAS & guessing I have EDS (i have enough to pass the test-but not diagnosed by a Dr). I am hearing that Mold can cause SIBO & other issues (especially constipation & exhaustion,, which I deal with). Thank you for all the helpful tips. I too love alcohol & it was painful to quit 😘😜 Sitting by the fire just isn’t the same. Please make more videos as you learn!!! ❤
My eyes have EDS, I have dry eyes due to my EDS- Classical type. I have my eyes going blurred on me even though I’m wearing my glasses. My Neurologist’s thinking I have Dysautonomia especially POTS, but I don’t know what the plan is to test me for that. I’m hoping they will do something. It took me 48 years to get my diagnosis. You don’t need negative people in your life. If they can’t handle you in your worst times then they don’t deserve you in your best times!
It’s disgusting that it takes that long to get a diagnosis. I hope that public awareness is changing!
@@kaitgardner I hope so, too! And yes, it is disgusting that it takes that long! I tried to find a doctor that is in my area that is familiar with EDS but I couldn’t find any. Ugh! I live around “ Music City “ and I can’t find any primary care physicians that are familiar with EDS. I would want to change my doctor to one that is very familiar with it.
@@shannongreenwell1278 highly recommend looking at my list
Ha I like to joke with my friends that I prefer to hike at ZERO elevations! 😅but it’s true! I find little spots by watering holes for my “hikes”
I have been doing a MCAS protocol but feel that I don’t have it.
I’ve had SIBO for years and have been dealing with bilateral si joint dysfunction for 7 years.
Recently 19 months of long covid. Mainly dysautonomia .
Was wondering if you have done or considered any brain retraining programs? I’m so sceptical but I don’t know what else to do. I am starting to get depression mainly because of my brain fog and fatigue.
My functional doctor recommended it The Gupta Program. I don’t know if it’s for me.
I started LDN 6 weeks ago. I started at 0.25mg because I was scared!
Thank you for sharing. I cried when you cried. I have had back pain since I was 29. It’s been 7 long years. I am praying the LDN works for me! It’s only been 6 weeks and I’m on 1.5mg. Sorry this comment is all over the place I was just excited we have been through so many similar things! I’ve had countless rounds of prp and prolo but it never helped at all.
Watching from Australia x
Stick with LDN as long as you can. It almost entirely eliminated my chronic fatigue and it reduces my pain to a more manageable level. I started in august 2022 at .25mg and just TODAY I finally got to my final dose of 4.5mg! Takes a long time to build up but it’s worth it. But if you don’t have side effects then you can increase more quickly!
My long Covid Dr also recommended the Gupta program. It costs several hundred dollars. Instead I go on YT and listen to Tony Robbins, or Abraham Hicks, two motivational gurus. Two new podcasts I listen to (I have HEDS) are Jay Shetty and Ed Mylett. I'm also a musician, so playing piano and going to rehearsals help my brain. And finding a PT who knows the Muldowney method. I live in Minnesota, btw.
🌷I have hyponatrimia low sodium in blood. Many trips to ER with either low or high blood pressure, or finding no pulse, or fainting, before getting proper diagnosis.
Daily now I rely on at least half teaspoon sea salt mixed with scoop of Dr Berg Electrolyte powder -- or I'd go into kidney failure.
So yes minerals are so important but rarely are we educated by our doctors on this. Frustrating.
I'm glad you're finally getting the right help.🌷
lol… I found your video at 420 likes. I agree with you about cannabis. I have a medical card where I live and it helps my mood, muscle stiffness and pain. Also agree with you about cutting all forms of toxicity and stress as it does a number on our dysautonomia. I’m three years into my diagnosis and just turned 50. I’d like to add that Hormone Replacement Therapy was started 4 months ago for me and also helping as I had terrible flares right before my menstrual cycle. I think declining estrogen is a big factor as women and it exacerbates EDS, Dysautonomia & MCAS. My gastroenterologist found my MCAS in my small intestine through a biopsy during an early colonoscopy a couple years ago.
Love my weed too! I consider it my “medication “, lol! Glad you have been able to find better ways of managing/coping w/chronic disease. I’m in constant pain most days, but I just push through. I have found the cannabis/cbd does help and much more affordable than medical care. I have terrible insurance through my employer so testing and investigating a potential problem is out of my price range. I like your channel, you say what’s on your mind w/out pause-but in a respectable manner, refreshing! 👏🏻👏🏻👏🏻💄❤️💄❤️
Thanks, Lisa!
this community is great , there just not enough ppl be talking abt it.i am 18 and has a family history of this but no one knew what eds is and just thought it was bad genetic,which is true lol
You have a beautiful voice. Thank you for sharing that. I know that you mentioned how hard it was to share that part with even your partner.
Awwww thanks, my editor put that clip in 🙈
Yes thanks for all updates and information 💃💃💃💃
Thank you! THANK YOU!!❤❤❤❤
Diet and naltrexone is my life line!!!!!!! 3 years in this for my fibromyalgia and chronic fatigue syndrome. And b12 shots and lots of supplements
learn how to live within your own limit!
Knowing your limit is the main fact to lead a good life
I kept getting dismissed before I finally was told I have heds, fibro and dysautanomia. Went thru so much testing. Pt made it worse then once I knew I had heds I found a pt specialist that knew about the condition so it’s helping a little now. But for a while drs just said they didn’t know what was wrong with me but didn’t want to try to figure it out neither. After getting dysautanomia I did not feel free anymore. It took over my whole life for a while and not being able to walk like I use to has made me pretty depressed
I have to be careful because I can push myself
Thank you for posting this. I got a lot of great information that I’ve been searching for. Im in Sacramento. Are you close to me?
Thanks....
thank you for sharing this❤. Have you checked your iron and ferritin levels? I have the same symptoms as you and my ferritin was low but building it up with iron supplements has helped my pots symptoms a lot.
I have! I actually had enormously high iron levels from eating too much spinach lol
Fantastic presentation. Thank you for sharing.
I have noticed that autism has comorbidity with much of what you describe. Older adult females are very underdiagnosed. Masking or camouflaging wears out with some, and symptoms become more evident. I am saying this in case there are undiagnosed autists in your audience who have not ever been evaluated. Thank you again for sharing such valuable information and your experiences.
I'm discussing an autism diagnosis with my therapist but am honestly not sure if I want to know. I've heard there are pros and cons to knowing. Thank you for suggesting this in a polite, respectful way. I've gotten comments like, "You're just autistic" that are super mean and I really appreciate that you took the time to be thoughtful.
@@kaitgardner I appreciate your insights. I look forward to your discussions.
@@americatruecrime ime older adult male at 43 diagnosed seams the collegen effects the brain what causes the Asperger's have you got fybromyalgia?
@tomsale5142 you ask a very astute question. How collagens and various collegen conditions relate to the brain and its functioning and in relation to what is termed, "the autism spectrum" are great intersecting considerations . Thank you for your comment. It is appreciated.
@@americatruecrime thankyou it's the Asperger's I need to understand the complexity and reason of this.Also the atlas seams to play a huge part with the hypomobility pain and CCI As a child itused to crack and pain used to run over my head my mum used to hear it Dr said growing pains!.I if course has sod without knowing
Have you found anything what helps your pain.I also ponder how much pain is the Asperger's itself larger fight or flight response with weaker frontal cortex and the reason for OCD.
Thank you for sharing your story. Have you found Lyme to be a factor for you? I was diagnosed with fibromyalgia first, then PFD, then Lyme, then hEDS, POTS, CFIDS, and more. I have cUTI (embedded UTI) too. I have been sick since I was 6 and did not receive the Lyme and EDS diagnoses until my 30’s.
All of my doctors have said I don't have any reason to consider Lyme's but it's on my list to look into if my hEDs/POTS/dysautonomia treatments don't work. My partner's Dad has Lyme's right now and I don't think it's a factor for me.
Please can you Activate subtitles? I’m Italian and I don’t understand everything 100%
I was diagnosed at 30 with depression then had hay fever then diagnosed with asthma then 10 years ago diagnosed properly with allergies to pet dander pollen etc - allergic rhinitis then not long after lost my taste n smell then diagnosed with nasal polyps. Then outta nowhere late last year a stressful event occurred n I started experiencing dyspena - hospitalised they just said it’s anxiety or copd… not sure how this can happen all of a sudden. So after much gaslighting from drs n specialists I researched n found that I most likely have mcas with histamine intolerance, I also get hives from pulling if the skin ie waxing. Now I’m getting asthma when I have a sauna, hot bath or shower!!! But the reactions to gluten, caffeine, chocolate, soy n alcohol have been a lot. I been on herbs n supplements along with low histamine diet for 2 months, no massive improvement. See my naturopath soon for follow up. Also have methane sibo. I’m sure I’ve forgotten other things I have but yeah it’s not fun at all. Very distressing n lonely.
I’m now 52. Just for some perspective
Oh n insomnia big time!
I take every morning also!! I take melatonin for my sleep
I just got off the phone with the Stanford hospital to get my EDS testing 😢I had sibo and I have Ibs you name it 😢 my 21 year old son has pots I don’t know who to turn too 😢😢😢i been waiting for ucsf hospital for two months now they tell me they don’t really treat pots and Stanford hops tola doesn’t take our insurance 😢😢😢
I live in cape cod …great healthcare right? No it’s all nurses for your Gen Pc. Now I LOVE and respect nurses but when they’re given 15 min per patient, as a general pc? ? They don’t care!! I had one say to me: “maybe stop looking for something to be wrong with you”….ive actually given up. I need certain tests done post cancer and sleep issues and I said to my new pc ( no better ) that I want a six month to one year break of no tests!! I’m just so tired of going to drs ( I know I need something more than whom they’re sending me to ) going to drs to find out nothing. It’s my anxiety after all!!
From your first video what happened with the nodule on your thyroid? I have very similar symptoms to you and I also have the nodule on my thyroid. I have been told it’s hormonal related but I’m not convinced. Thanks
Same here!! :( just got a thyroid biopsy and everything and also have hEDS and suspected MCAS and POTS.
Hey Kait, how are you doing now? Still doing well with the LDN? Can you explain how you were misdiagnosed with MCAS? Just been put on mast cell stabilisers because I had high tryptase levels. Weary of all diagnoses at this point but it seems i shouldnt be about this one. Thanks!
LDN is life-changing! The initial diagnoses I got were just based on a clinical exam so they weren't official diagnoses. When I saw specialists, my allergist noticed I had dysautonomia, not mcas. I don't have typical mcas symptoms, it was more gut problems.
I’m in 4.5mg I get 3 months for 50 dollars!!! I use a Pharmacy in NY and they ship it!
I'm very jealous
@@kaitgardner maybe look into it ? I get my through a nurse practitioner in my state who has access to that pharmacy. I use to pay 50 a month
My son said the leggings and the compression socks doesn’t work for him so he doesn’t wear them anymore
Ugh why rice ?? How is rice bad ? I wanted to go to a vegan ish diet, lots of rice and beans for balanced protein
💝💝💝
Am having trouble sleeping due to my heds and pots. 😢 Any tips?
hEDS definitely does cause insomnia, my doctor confirmed. I take 3mg of melatonin every night, sleep with a white noise machine and black out shades, don't use any screen devices an hour before bed, and most importantly - I go to bed and wake up at the same time every single day, even on weekends. Also, weed really helps me.
Gluten alcohol and fermented food are all things I choose not to consume because I choose to feel healthy
Have many had any luck with atlas adjustments
Oregano is amazing for menstrual cramps, my house is full of it, just be careful cause its abortive and you'll bleed a lot. I use it for my scalp (I have seb derm) but also for muscular pain, and is a mosquito repellent, i had being treating my hand pain with it, it does make you smell like a salad, but it does work! I'm still hoping to find a nice geneticist, my cardiologist are a bit not anti meds but more towards the mechanical approach of being better, which I kind of agree with but gets harder and harder when you have a lot of chronic pain, fatigue and adhd brain shit.
Does your sibo cause you chronic constipation? Cause I cant bowel in a week now
Not for me but I'm sure everyone is different
Omg I live in Northern California too 😂
Don't get any more tattoos. The ink ends up in the lymphatic system. You don't need any more health issues. Mel Thompson was covered in tattoos and had EDS & POTS and she passed away a few years ago. Learn fr her. Don't tattoo!!
I was 51. What a waste. It was a random Facebook comment by a stranger that I read & it just clicked.
Good for you dear let go of the people that gives you bullshit 😂❤
i thought you would mention also some kind of physiotherapy??? why not? wasnt any helpful at all ?
I was in PT for 5 years and it did virtually nothing for my pain. My pain is not affected by cupping, massage, acupuncture, PT, etc. Some people find that helpful but I didn't. I do exercise though, building strength is important for EDS and cardio is important for POTS.
I've had 8 years of on and off physio and it's been useless. They won't even accept my referral anymore 🤣 (UK).
All of these things you are doing are bandades and not treating the root cause.
I spent my entire life In the symptom management mode... Only to get much worse because of it you leave infections and vitamin deficiencies untreated for long enough While you manage symptoms you are bound to get worse later and it's a whole new ball game when you are severely disabled unable to Walk yourself to the bathroom.
Life expectancy for EDS is 48, do you think that factors into your decision of having children as well?
That’s for vascular EDS, I have hypermobile EDS, which has a normal lifespan
Wonderful!!!
@@kaitgardner you are the same as me except I have seborrheic and mast cell. I went 53 years before diagnosed 58 before actually got help.. my heart goes out to all. My children have it my daughter is far worse than my sons. Nobody doctors know anything about it. Do you tear muscles and joints pop out?
@@kaitgardner kait I do same as you and I am free also. You are exact same as I was. I destroyed myself physically. I also have diabetes and neuropathy.
LDN it’s for heds or the others? I suspect I have elder danlos. I already went a bunch to he doctor didn’t find anything. I had tear labrum left hip last year and now I have pain at my right hip. Please where I can find a doctor can help me diagnosis and treatment ? I don’t know and didn’t understand much ehler danlos.
Thanks for sharing, once again relate to a lot of this. LDN has been great for me too! I started a few months ago. Agreed on the alcohol not just on the positives of cutting it out but was also a pretty heavy partier. I’ve been off it for almost a full year. I think we especially have an affinity for alcohol because it’s a nervous system depressant and with dysautonomia the system is out of wack! Like there’s a physiological reason you were enjoying a drink every day. For anyone coming here who also has Long Covid, Triple Anticoagulant Therapy has been working for me too, I highly recommend looking into it. Your little energy dancing video made me laugh, after starting LDN I listen to music and sing and dance in the shower now to activate my vagus nerve and I swear I’ve busted those same moves hahah. so glad you’ve made progress, thanks for raising awareness about what’s working for you ❤️🩹❤️🩹
Wow, that totally makes sense about alcohol! I had never heard of that and had always wondered why I felt the need to have a drink every day. It's easy for me to stop after 1 but I ALWAYS crave that 1. Now that alcohol is no longer part of my daily routine, I don't miss it at all, but for years it was a big crutch for me. My parents also used to be alcoholics so it was a normal part of my 'culture.'
Sending you gentle hugs!