Greetings from South Africa. We have exactly the same situation. I have been diagnosed with 7 illnesses. I think they have 5 correct. Not so sure about 2. They keep on doing the same tests, even though I tell them that I want them to look at other options, they simply ignore my requests, because I'm not a doctor. Obviously that means I can't read or do any research of my own. I have several degrees, one of which is a masters in research methodology. My IQ is 148, which is probably higher than most of the "specialists" who ignore all of my input. I'm not bragging. I'm sharing this to make a point. Every week I spend in hospital, it's the same routine in a perpetual cycle. Telling a doctor that they need to take my input into consideration because I have done research for several companies in the financial sector, followed up with corrective measures in logistics, procedural changes in workflow, marketing and rating guidelines that has never failed to drastically improve turnover, profit and solvency margins for every company I consulted with.... and their IQ's are probably 20+ points lower than mine, is not exactly the way to build rapport with physicians who might end up handing me the referral that could very well be to the doctor who finally has the answers.
We all struggle and most of the time we stumble our way through life as we pretend to be an expert of some kind. Anyone who says they plan every aspect of their life and career, and everything is going according to plan, is on time and meticulous and they have it figured out... anyone who says that is full of it and I guarantee they are falling apart inside. When nothing you do is working and you feel like a failure, it means you are a human being. The only failure is quitting. You are stil here, so you haven't failed. Unfortunately for us there's no Greg House on the planet. I'm not a total moron and what I have figured out is that nobody has it figured out. You haven't closed in on the root of the problem. All that means is that it's back to the drawing board. There are plenty of illnesses that I have been able to rule out. You are in the same situation. Both of us have been at this for years, so we have crossed a lot of stuff off our lists. There's a word for that, you know... progress. Now finish your pitty party for the day, there is more work that has to be done tomorrow. Pain hasn't stopped us from making progress yet. I don't know about you, but I intend to progress until I win.
Are you on X? RUclips deletes 90% of my comments. Do they have restrictions on health related comments or did I say something you were not happy with? I'm also unsubscribed now.
I think sometimes ppl with chronic illness can be the most judgmental of others with chronic illness. I’m so sick of people telling us to be positive, etc. I really like your channel and YOU ARE DOING A GREAT JOB. ❤
Anyone with chronic illness should know its impossible to be strong, positive and inspiring all the damn time. Please dont feel pressure from dumb comments to cater to those few. Obviously there are a ton of people who relate and follow you because you're honesty is encouraging.
Omg Aimee that comment at ~12 minutes is absolutely ridiculous… the whole point of your channel is to connect with others who are suffering like you, of COURSE you’re going to talk about your illnesses, and I’m so GRATEFUL you do. You are not whiny or self-pitying at all, you have the most beautiful positive attitude and strength through all of it. Whoever commented that has probably been told to shove down their feelings and not talk about their illness- that is coming from a place of fear and everything they said about you comes from their own insecurities. You are absolutely amazing and I for one SO appreciate your vulnerability about your health. It helps me so much. Love you girl 😘
The larger your channel gets the worse the comments will become. Find a way to filter the bad ones. It’s also important to remember they don’t know you and they don’t feel your pain. It’s really important to insulate yourself. I have had to do this because we are already sick. We have very little reserves. ❤❤
The community you started for us is so important. You have no idea how much you’ve helped me in my journey and so many others too. You have critics, yes, but you have soooo much love and support too. I truly care for you and you care for us and that’s why we keep pushing through fighting these illnesses together. RUclips has its time and place but your community is where all the real love is at. We would’ve never had it without RUclips though.
I like the way you have designed this channel. Trying to remain positive, but also showing that positivity doesn't fix everything, and that bad days still happen and are okay. It's true that chronic illness isn't only who we are, but it is a major part of our lives, and affects how we think and the decisions we make. And denying any of that is 1. toxic positivity and 2. a lie. To ourselves, more than anything.
Hi Aimee! I was the subscriber who left the comment mentioned around the 6:11 mark of this video. I completely understand the frustration of having so many doctors tell you so many different things and being at a loss with what to do in terms of treatment. That is basically where I am at myself currently. I am very sorry if my previous comment came across the wrong way at all - I was just sharing my personal experience with a holistic doctor and didn't know your history with holistic doctors, so I am sorry if that was triggering at all.
Thank you for sharing your thoughts in such a kind way! I really appreciate that! :) I honestly didn't feel you were rude at all. You don't need to apologize for "triggering" me. I find that when I am already insecure about something then I a comment (in person or online) hurts more. That is my job to deal with. It's not your job to dance around my feelings. You are trying to help and I truly do appreciate that. I hope my response didn't come off rude back to you. I just wanted to clarify :)
This is an honest portrayal of what people with chronic, systemic illnesses go through. This isn't unusual at all. I'm sorry people don't understand that.
Trust yourself. No one will ever understand until they are affected by chronic illnesses. They will never understand the depth of your tiredness and will only be able to compare it to their own level of energy. I appreciate any advice and help you can offer those of us who are energy challenged for wherever the reason may be. Living life as a spectator will never be totally satisfying.
You are doing great. It is horrible how people judge/talk to others online. I was told by someone in a FB group that I don’t have CFS and it made me feel ill and I left that supportive group because of it. You are doing so much good and we need to learn to rise above it somehow
Aimee, I really appreciate you and all the time and energy you put into these videos. You have your tribe here. Chronic illness is brutal to live and navigate through for most us of. I send you so much love and always have hope for you!
Aimee, I am right there with you sister. You’re not alone. You’re not a hypochondriac. You’re valid. Praying for you and sitting in solidarity with you! I have EDS, POTS, IST, Lyme, EBV, fibro…. All real. All part of our lives. Not because we WANT it to be. Sending love!
Also, Lyme was my first REAL CLEAR diagnosis (we literally test positive, people, it’s not just a guess😅) and I was literally dying. I was down to 98lbs and unable to eat or pick up my phone or sleep, etc…. Lyme treatment saved my life! Antibiotics AND buhner herbal protocol made a huge difference for me. I was in remission for a long time before I got really sick again and found out I have more… BUT that doesn’t make Lyme less real!! It’s still there and still needs treatment when I have flares. And Lyme can literally cause several other Illnesses! Dysautonomia, fibro (fibro is usually Lyme or EDS), etc…
You do you! I also struggle with many symptoms and undiagnosed illness. One can not be positive all the time...and that is a fact! So if your viewers can not give you grace for it and want to unsubscribe - so be it! This is your channel and you present your struggles under the light YOU want! Positive or negative, you do you and people should be able to give you grace and be patient. Even if you are hypochondriac...this is YOUR JOURNEY!!! the ones who want to join you in this journey can do it the others can go away. My only advice for you, is to be strong, develop ticker skin, keep being kind and don't let the social media toxicity to get to your soul.... AND keep going. You dont need to explain yourself all the time. You are doing a great job and many of us appreciate your work and your vulnerability. So, be blessed and please keep moving forward.
I absolutely understand everything you're saying. I'm also on my chronic illness journey too. The suffering is difficult to deal with. You are one of the only people on YT that is relatable in dealing with chronic illness. I hope one day you will find healing.The answers are out there somewhere 😊 Sending positive vibes your way! 🎉🎉❤
Not sure if you’ll read this, but I’m 100% you. Searching, never giving up, trying everything to get better. I’ve been diagnosed with everything. Been sick for 6 years plus. many people say doing brain retraining, but I’m just not 100% buying it that it works. I’ve been working on my nervous system for over a year and I’m still sick. Maybe I need to keep going. Who knows? I’m so frustrated and so sick of it all, but never want to give up. Just want to feel better. ❤ sending you so much love. I feel everything you said. It’s so, so hard. The only way I keep going is through my relationship with Christ. ❤
I'm amazed at you Aimee that dispite your fatigue you are so alert and articulate, but I can see your energy is ebbing as you conclude, you are so much more than your illness, you definitely gave your best shot❤.
I’m a fairly new sub. I started watching because I totally get your frustration and pain. I’ve come to realize that I will forever just be someone who has something that no one knows what it is or how to treat. So I just live. How ever that looks each day. I too just want to feel better. Some days are torture. And then the very next day I’m a bit better. Who knows why. Keep posting you. I like hearing that there’s people Out there like me, just trying and trying their best….❤️❤️❤️❤️
Please just be you. You are the person that gets so many of us through the day. You are the person that inspires me to hope for better. You are the person that validates what I feel. We need YOU! Simply YOU! On the night of Mother's Day, right after my child fell asleep, I ended up in the ER with a prolapse & told I will need a hysterectomy. I kid you not, you are the first thought that came to my mind. I instantly remembered you talking about this. That gave me such comfort. I also remember watching your video when you said you were taking a break from RUclips. As a grown person, I actually had a meltdown, feeling like I was losing my only friend. Thank you for being here, & for being YOU! and also, thank you to your husband for being so supportive of you. Not all of us have supportive or understanding spouses or partners. It makes every day so much more painful. I am truly sorry for all you endure, & I'm sure it's no consolation, but thank you for being honest & open & here for us. Please know that you are helping so many families! Thank You!
I feel that for sure! I am in the same boat. I have a mystery thing and have been dealing with it for years. Invisible disabilities are so difficult because no one else can understand what we are going through because they aren't living our experience. It is isolating sometimes because you feel like no one gets you, and everyone thinks they know better than you about your own health. I hope you figure out what's going on. I will be seeing a complex neuro specialist in a couple months, and I am hoping they will have some answers for me. Anyway, you aren't alone. There are more of us out here that get it. And who have experienced the same things. It's unfortunate that the medical field is so money oriented and it's true that lots of doctors have a hard time understanding people who have chronic illnesses/invisible disabilities because they can't see it or feel it. And they just want to brush it off as your issue (it's all in your head, or you are faking, or you just want attention... etc). Anyway. You aren't alone. Keep going. And know that not everyone out here is criticizing you for trying to figure out what's going on with you and how to get better!
I got told last week by a benefits councillor that I'd juat spent an hour talking about my illness. 4 years Long Covid. He asked "so is that your identity now?". To be honest, yes it is. Can't do much. Can't go to everywhere i would like to go. My life changed 4 years ago. Thanks to Covid-19. And now Fibromyalgia and Costochondritis. And my walking is affected. Fatigue. And can only do simple things.
The confusion can be all encompassing and just eat at you. I enjoy your channel a lot because it brings in people with many different illnesses and has such a great commenting community. You definitely are not over reacting about your situation, I’ve been trying to explain to people online how serious one illness I have can be for people and they refuse to acknowledge it. Your channel won’t be for everyone, but it’s an amazing channel for many. If I feel like I need to stay away from more negative videos on RUclips I do, if that’s what I need to feel less alone I watch it, it’s okay to want to feel understood and less alone in the struggle. I know I’ve mentioned it to you before so I just wanted to tell you I finally got into a therapist yesterday and it was amazing! It felt good to have my mental health struggles acknowledged professionally. It felt good to hear that I actually have depression and anxiety and that I’m not going to snap or go insane. I feel like I’m finally getting the mental help I’ve needed for over 3 years, and I just feel a big sigh of relief!😮💨 Your videos help me find ways to explain to my doctors how I feel so thank you for sharing. I’m going to remember what you said that you have hope and are going to hang on to it, even if it’s just a little bit, that hit my heart.❤
Aimee, I'm sorry to hear your so confused and tired, because of a lot of negative subscribers. I want to remind you of something very wise you said not so long ago. That was this: "I started to notice that what they are saying and what my brain thinks that means..." I belueve there are really negative subscribers, but maybe not as many as you feel like there are. Big hug from me.
I had a very similar experience with naturalpathy. Spent thousands and thousands of money on her and her treatments not counting vitamins. You are absolutely right. I have pretty much withdrawn from society due to their lack of understanding.
thankyou for this video, because i all ways felt you seemed to self diagnosed. but after watching this video i feel you are just trying to understand what is going on with your health. i hope you get your answers when you get your test for EDS.
Hi Aimee, this is the first time I have ever commented on a youtube video, but your latest video just made me want to HUG you! You are amazing and doing an incredible job. I am so pleased to see that people are leaving positive comments of support for you here too. You have helped me so much and I wish I had reached out to tell you this earlier, but your videos help me feel less alone and I completely relate to what you talk about. It's so hard to not mention your chronic illness because it does effect everything. I end up distancing and isolating myself from others, because I don't feel I can mention anything to do with my chronic illness, because people won't and don't understand. You're so brave doing what you do on youtube, in your community and in your day to day life. I believe people want a place where they can speak and listen freely about what is real about chronic illness, but also have hope and I think you strike this balance perfectly. Keep going, I know it's hard, but for every negative comment and person who doesn't agree or understand and is just plain judgmental there are a 100 people you're helping and I am one of them. You inspired me to have courage and try for a family despite my chronic illness and we are now expecting our first child! You are changing lives :) and each time I watch your videos, you give me hope and a feeling of friendship that I often miss out on. I hope that these positive comments help uplift you today. I know how overwhelming things can get and understand how confusing Lyme and EDS can feel as they are still not fully understood, you're just doing your best and that's all we can do. Love, light and hugs x
Dear Aimee, I have been suffering from chronic pain and chronic fatigue for a little bit more than two years now and as you said, there is no actual break from it. No matter how hard you try, you can not escape from a body that is suffering all the time, and you can not escape from a mind that is constantly doing its best to survive in a life that sometimes feels like a burden. But life, no matter what, remains a miracle, and you embody that truth with so much strength and grace. I have discovered your channel a few months ago and following you has made a huge difference in my life. I have never felt pity for you; I have always felt compassion, tenderness and gratitude. What a pure, brave and beautiful woman I thought, and what a precious gift she is giving to humanity by sharing her story. We have good days and bad days, and good moments and bad moments every day as well, so it is indeed hard to find stability. And yes, sometimes we have deep moments of connexion with the divine and we feel blessed for our journey, our so hard but also full of light, journey. And other times, we feel overwhelmed by pain and frustration, and fatigue. What am I doing wrong ? What do I don't understand ? What is God expecting from me ? Why can I not be healed ? And what good can I bring to this world when all of my energy goes into a survival mode... We have so many questions and not so many answers. But, the simple fact of being here and being true to ourselves is enough. You are a pure and very courageous soul that brings so much light, so much love, so much kindness and so much hope to this earth that deeply needs it. Thank you for not giving up, Thank you for being vulnerable and honest, Thank you for being so humble and inspiring. I can not imagine what you're going trough, but I can see and feel the good that you bring to this world. Keep doing your best, keep following your instinct and keep listening your heart. I send you my prayers 🌟🌟🌟 With all my love, Zôé.
Of all of the diagnoses that doctors have placed on you, only Ehlers Danlos can explain your prolapses and stretchy skin. That's the lead you'll want to follow, and seeing a doctor who specializes in EDS will give you the empowerment you need. That specialist can give you the second opinion to confirm your EDS, and can sort through your health issues to tell you what the EDS is responsible for. The problem with not seeing a doctor who specializes in EDS is that the majority of doctors aren't familiar enough with the 13 different types of EDS, and most have only seem medical journals with case studies documenting the most extreme cases with most exaggerated symptoms. Then these less educated doctors are mistakenly led to believe that all EDS patients need to present like the extreme cases. The doctors who don't understand EDS will often write off an EDS patient's symptoms with a diagnosis that doesn't quite fit or explain everything, such as fibromyalgia, Lyme's disease, or psychological. The bottom line is that you're not currently being empowered by the healthcare system, and you're feeling uncertain with differing opinions between doctors. I've been there, and it wasted decades of my life. Definitely see an EDS specialist. If you do have it, they will provide you with the knowledge and support to empower you as a patient. If you don't have EDS, the EDS specialist will not try to sell you herbal supplements, and will not want to see a non-EDS patient because they have their hands full with actual EDS patients.
Hey Aimee, I have just joined your group and you’re helping me so much. Please don’t let these people get to you. You’ve been doing this a long time you’re amazing to reach out and try to help others, by sharing your story. I would think other people with chronic illness would surely be more understanding. I feel we know our own body better than anyone else. If you are feeling even a little healing, it’s worth giving it a try if it’s not too expensive and you can do it. Thank you for all you do!! You make a big impact and difference for a lot of us!!
This breaks my heart Aimee. You know how you feel. We who are all in your community are here for you and believe in you! No one else should be putting these comments up, why do people have to put these comments on here. Aimee your amazing and the content that you put on RUclips is too 💕
Some comments wll hurt for sure. Even the most popular on the internet will read 100 great things and 1 bad yet the bad takes all the attention and ruminating. You are doing a wonderful job, always authentic, always kind and you are right, your content wont be for everyone and that is totally fine. Those that stay have gotta take the full package, the laughs, postivity, rants and anxiety. The human experience. I love jamela jamil podcast as she lets it all out while also continuously seeking out messages of hope for the world. Sending you so much love from Cork, Ireland. You help me be a better friend to my friends with sicknesses and back when I had sibo. Thank you. Stand strong in your truth, you are a fucking goddess, a warrior and a beautiful imperfect human like those around you ♥️♥️♥️♥️
For whatever it's worth, ticks in Wyoming don't carry Lyme disease. Lyme disease is most common in the Northeast and upper Midwest of the United States, with about 95% of cases occurring in 14 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin.
Just: you are a freaking good, brave person! As someone diagnosed with chronic depression I know all of the feelings you‘ve just mentioned❤️ pls feel hugged from a distance ❤
Dear Aimee, I'm so sorry you're having to cope with negativity from other people on top of all your other hardships. I hope one day you do get better as our knowledge of medicine advances. Sometimes doctors and other kinds of medical/alternative practitioners act as though they already have all the answers that could possibly exist, but of course we know from history that this isn't true. You are not a hypochondriac, you are suffering from very real, severe symptoms and you remember the point at which they started - it may not be clear why they started but it's interesting that you had an 'event' (food poisoning) that seemed to trigger everything off - this seems to be a common experience in the chronic illness community. Just cos the docs don't understand the mechanisms at work, doesn't mean the illness ain't real! I have found comfort in many of your videos as you look so hard for positives and bring the rest of us hope with your resilience, whilst also being real about how hard it really is to live with chronic illness. You are allowed to have times when you cannot be grateful, cannot be endlessly positive. It doesn't make you any less of a good person and it doesn't diminish the helpfulness of your channel to others. Solidarity 💪
Mast Cell Activation Syndrome (MCAS) can even react to foods such as Monosodium Glutamate (MSG), alcohol, shellfish, artificial food dyes and flavorings, food preservatives, pineapples, tomatoes & tomato based products, and chocolate. Sometimes a MCAS food reaction can even mimic food poisoning in less severe cases.
I'll be heading to your community shortly. I wanted to consume as much of your story as my painful broken brain would allow. A few things... What is your blood type? What do you eat? I've had Lymes since 1974. Which led into endometriosis, etc... Rheumatoid arthritis. Depression. Struggles with alcohol, other addictions. I'm happy to see the end of all that... Have you come across Mikayla Peterson? The Lion Diet? It's helped me tremendously. Please do a food sensitivity test, not an allergen test. It might make a difference. Wishing you all the best.
That final comment is ableist and an example of toxic positivity. That’s all their own judgement and self-judgement. Delete and block! I totally understand the confusion when doctors tell you different things. I’ve been gaslit by some holistic practitioners (eg. when I had stage 4 endometriosis, an acupuncturist told me I didn’t need surgery, I just needed to do a lot of acupuncture. The surgery was a huge success). So holistic doctors definitely have their own biases as well. Hang in there. ❤
People are constantly trying to “fix” me. People don’t understand. Doctors don’t understand. I live in chronic pain and fatigue and mine is different than yours I’m sure. Please don’t let negativity from everyone bring you down. You are an encouragement.
Aimee being you were told by that Dr. Is that why you said you don’t have fibromyalgia. I do have fibromyalgia and would love to know if that’s why. Keep doing your channel because the things I hear hurt but somehow well you can’t get mad at your family and I don’t want too they just don’t understand it’s not because of my age I’m 74 and was diagnosed 10 years ago take care Aimee and hang in there 💜
Believe in yourself as at the end of the day only you can celebrate your pain being one less or your fatigue being two less. Take them small victories for however long they last. Only you know your body and how you feel as your in it every minute of every day. So don’t let anyone take that from you. You are not alone in how you feel. People feel there illnesses differently to everyone else and always will. Keep doing what you do as your amazing and I love how you keep it real and your the only Chantal I have felt so connected too. Thank you for that. Also happy you made another video. Keep strong the negative people will always try to pull you down because they will never be you and live what you do. Stay strong you have many of us behind you❤
My heart breaks for you! I’ve watched your channel & you helped me sooo much with the recommendation to try jobst compression socks & vitassium! I don’t agree with that persons comments, I don’t think your into the victim mindset thing. I also don’t know if my story could be helpful but thought I’d share in case it could! I had severe neurologic chronic Lyme disease. It was my first diagnosis, I woke up one morning like Id had a stroke, couldn’t move one side of my body, talk or walk. I tested positive for lyme & co infections on the western blot test. I went to one holistic doctor for lyme treatment and she did get my lyme in remission but struggled with the co-infections. I got to another holistic doctor who was sooo much better! She helped me get in remission of all the rest of the infections, 5 years of treatment in total. I am shocked this holistic doc said you’d feel better in lyme treatment, I felt horrible haha and that was expected by the docs because it was so hard on my body. I feel better after treatment though, just my POTs flares super bad after I finished treatment. I wish you could see the last doc I saw she was so great. I have a laundry list of conditions too, for me it’s POTS, most likely endo, Crohns, allergies & asthma. For my POTS I did find two neurologist doctors, Dr. Constantini & Dr. Derrick Lonsdale both now passed away, who used high doses of vitamin B1 for POTS. It is a bit complicated to do, because it needs to be done slowly and with lots of magnesium potassium, other b vitamins, CoQ10 etc. i felt pretty aweful the first month or so on the B1 but after a few months my POTS is 3/4 better!! I can function now most of the time & before I was nearly bedridden. I don’t know if you’ve heard of B1 (thiamine) for POTS but if you look up those two doctors names you’ll see lots of research they did! Dr Constantini wrote a book about it & the other doctor he co-wrote the book with, Dr. Chandler Marrs, is still alive & she does great interviews about thiamine for POTS. God bless you I so hope something helps you! Im also Catholic & knowing about redemptive suffering helps so much, just uniting my suffering to Our Lords suffering on the cross!
It’s a huge part of your experience, you shouldn’t be made feel guilty for that. I disagree so much with the comments about victimhood and identity, it just shows lack of insight how it really is to live this way. I have eds, dysautonomie, small fiber neuropathy and severe Food intolerances, I went from being to able do everything to nothing to right now some things, I’m very thankful for the things I can do, and sometimes very frustrated with the things I can’t do, it’s a lonely position to be in even if you have great people around you. I still think Eds is a very likely common denominator because, but I can imagine you’ve had enough of other peoples opinions 😅
please don't let others police you about your identity. you don't need others to remind you you are a person. it's them who are obnoxious with this behaviour. as an autistic, I fully relate to how something that defines every aspect of your being is your identity. people see autism as a disorder and stigmatise it because it's different. to me, it's just my neurotype, not a label. I decide about my identity, and so do you, and that youtube user can gladly decide about their own, and their own only. I absolutely believe your every single diagnosis you've got from a medical doctor, although I do not think you have Lyme. these things are correlated genetically, they come in multiple chains. that youtuber wanting to dictate your videos like they've entered a restaurant whereas your videos are just meant to honestly reflect your life... well, that person is just funny and a tad ridiculous.
What having chronic illnesses boils down to is this, what works for one person will not work for somebody else. Every person has to find their own path. A lot of the time, even when something works, it may not work forever. You can keep trying or you can give up. You are a great warrior, but even warriors get tired and frustrated. Chronic illness sucks, but it's reality. You are not your illness, but it affects every aspect of your life. I have not become my illness, but I can't make a single decision without considering it. If you are wallowing in self pity, it's probably because you need a release. What I do when I start wallowing, is to lean right into it. I have learned if I let myself wallow, I get over it faster. Trying not to wallow when I get overwhelmed makes it worse, it brings on fatigue, it makes the pain worse. What you do, is give people a safe place to to know they're not alone. It's an important part of coping, knowing we're not alone. What you do is important. Thank you for doing it.
I actually like your channel more now that you show less forced positivity and real moments. I may be wrong and this might be controversial, but I feel like if someone’s chronic illness has not become their identity and all day struggle, then maybe it’s not affecting them as much as it is you or me. Like you, having a hobby is not really a good option. I do think that you have EDS because you have all that crazy skin stuff and that crazy pelvic floor situation. but I don’t know much about Lyme disease or parasites!
I know it's so hard Aimee because I completely understand that chronic illness or disability is something that you can't escape from that's exactly what I would tell people when they say "that's all you talk about now" or "that's all you focus on" but here's what I got to say to them... FIRST OF ALL yes we hate this and are suffering and did not ever want something like this BUT it is the current reality and it is (like you said) in every part of our lives so it is impossible to not talk about it and SECOND OF ALL... it gives us a voice and a hope to talk about it and to research and share on the internet! My parents would actually yell at me and tell me to stop searching on the internet and they told me i was a hypochondriac BUT GUESS WHAT i had to find out what was wrong with my dogonne self bc Drs were not taking me seriously I only had God and myself AND my prayers were answered i found the Drs who are helping me the most bc i kept researching and looking for answers! I think you are kinda like me in the aspect of we keep searching because we want to get better... BUT what if we take a break and make smaller goals... because one thing that i learned from all this is that it helps the most to take things day by day and it is easier to train yourself to think positive when you start small and realistically like for example I'm not trying to be negative or crush your hope but what if we don't ever get completely better? It breaks my heart the thought that i may never dance again and live the way i want to BUT i have to try my best to not think about that and to be thankful for what i am able to do right now day by day. And yes it is very hard not to think about the future but it is possible to escape the trap of chronic illness A LITTLE BIT at a time we cannot fully escape it but we don't have to let it win. And i can tell that you, like i was at one point, are very very exhausted by everything and that's very possibly making your symptoms worse. My suggestion is to literally take a break and focusing on YOU healing you and not the doctors. If something is helping you then yes still go to your appointments like your UCC and please pray about the other ones. I personally think EDS and associated cervical instability is something in the right direction to pursue in your case and not the lymes... but i would pray about it and pick one and then stop going to drs for a while and maybe even stop making videos for a while? Is there anything you can do now that you really enjoy and is calming for you? Try doing that instead even if physically you can only do it for a few minutes. If you think it is helping you to make your videos then keep doing it. I do not think this is "all in your head" as i have also been told over n over lol so since you mentioned it I'm sure ppl have told you that too 😡 however our mind is a very powerful thing and can either help or hurt our healing. I think both of us should also do some kind of CBT or brain retrain i know those programs have helped a lot of ppl. I hope this helps you some you are in my prayers dear 🙏
I never comment on youtube but I wanted you to know that I completely understand what you are going through. I appreciate you giving a voice to those of us who are suffering from chronic illness. I have had lupus for 30 years and was diagnosed with secondary adrenal insufficiency last year. I suffered for so long and the doctors couldn't figure out what was wrong until I was on the verge of an adrenal crisis. Afterwards I was still suffering and the doctors couldn't figure out why I wasn't getting better. It was starting to cause serious cognitive problems and I was still exhausted. I finally went to the Amen Clinic and also saw a functional medicine doctor. The brain spect scan showed I had serious issues going on with my brain, and I flunked the cognitive test at the age of 48. It showed I was having signs of early dementia but they believed there was a cause of it, most likely from hormone problem due to the adrenal insufficiency and they werent wrong. After further testing it showed I wasn't making any DHEA which is not uncommon in someone with secondary adrenal insufficiency and my endocrinologist should have known that but he kept ignoring me and not even following standard protocol for my condition. I remember even asking him if he was sure he checked all my hormones because I thought there was something else going on with them. Lacking that one hormone caused me to have serious memory issues, unbelievable muscle weakness and pain, balance issues, fatigue, sleep issues, etc. My daughter also has EDS, fibromyalgia and chronic fatigue syndrome, she also was tested and does not make it either and since she has been on it for a short time now I've already noticed a difference with her. They also put her on a much smaller dose of cortisol than I take when her cortisol levels drop and that has also helped with her fatigue. This is not a standard hormone they check just like they don't check cortisol and ACTH the other two hormones I don't make with my adrenal insufficiency. They can check cortisol and DHEA by blood or saliva but ACTH needs to be blood. I know you get alot of people telling you alot of things and offering you alot of advice but I wanted you to know about me and my daughter and our diagnosis because we both know what you are going through and it is rare. Your symptoms sound so much like ours. You always hear about cortisol but the truth is doctors dont check for it and most people worry about it being too high because of stress, no one talks about what happens if its too low, they dont know how serious it is. I wish we could give you a big hug, sending you lots of love and support!
I'm glad you were able to find a good doctor who was able to give you the answers and empower you with the knowledge of your health issue, so that you could help your daughter as well! Hopefully you're both receiving good treatment to improve quality of life. On a side note, my doctors have regularly checked my ACTH whenever they've done routine endocrine blood panels on me. I've asked them about cortisol, but they mentioned that the most accurate test for that is a 24 hour urine collection.
Hi Marcy. I'm so sorry it took so long to find your adrenal deficiency. There are way to many drs who dismiss other symptoms as the affects of your previously diagnosed condition. I also have the less common tri factor your daughter has, it's so hard the compounding pain causes and fatigue is really hard to live with. I really feel for both of you. I hope that you're treatment is able to lessen the damage and keep your adrenal glands stable 💕
In the history of allopathic care no doctor has ever said anything worthwhile. Never listen to a patient. Why exactly never do that ? Why ever look at anyone's channel? Hey if yt has lead you down a primrose path. Doing something about it is fair game.
Hi Aimee. I watch a lot of content creators and I rarely comment on videos but as a fellow chronic illness suferer I'm with you when you say that you can't take a break from it, because we really can't. What helped me a little bit in my journey was learning to adapt and adjust my expectations - at least for me, the reality is that I'll never be able to live the life I want... but I can still live a life, do the best that I can to improve every day and even still, some days, I hate that my life has to be this way. But embrassing this idea has helped to «soften the blow» a bit... I wish you the best of luck in your journey and that you can heal to live your best life, even if it's not on your terms
Wow, I'm so sorry your receiving such negativity. I have been watching your journey for years now and actually self-identify without many of your symtoms. It is true that most basic insurance doctors tests don't catch Lyme disease. I had the generic test done with a positive antibody but low tider. A Western medicine(insurance) doctor told me I didn't have it. Than a naturopathic Dr. told me you have the antibody. You have Lyme, now theres more accurate tests out there for Lyme and various tick diseases that are paid cash through a naturopathic. So absolutely you probably have Lyme. The thing is Aimee you may have Lyme and Fibromyalgia which lyme is a huge trigger for and Pots and EDS why because I too have many of these different illnesses and thats ok. Whether or not this naturopathic can heal you isn't the point because what you've gained is another piece of the puzzle. Eradicating Lyme is not an easy task if you have to try another naturopath later you will. You keep trying, don't give up and don't ever apologize for your health journey or what or how you share it. These people don't know what they're talking about. Ticks aren't super common in Southern California or the High-Desert, yet my property and my mothers at one point were both infiltrated and got infested. I love that your real about it and if someone wants to unsubscribe, that's fine, you keep doing you. I'm chronically ill post-Covid and there has been no answers for me and no treatments and it is hard and we are warriors to keep trying our best each day. You offer hope, comfort and most importantly ypu make us feel like we're not alone in this journey. Sending you good vibes and a big hug🤗
I've noticed the safety algorithm becoming extremely sensitive after a certain event happened a week and a half ago. I know people who can't post anymore anywhere, and all they did was innocently use a key word in their comment that triggered the automated system to mistake it for a bad comment and automatically take action against them.
Hi Amiee. I hope your doing as well as possible. I just wanted to make a comment in regards to your h EDS possible diagnosis. I saw the video where you talked about your symptoms and went through the criteria. You did meet the criteria for hEDS and I also remembered the video about going through the criteria with your doctor and him agreeing that there is a very high possibility that you do have hEDS. I would see the genetasist that you have an appointment with to get their diagnosis as they are able to confirm the diagnosis. I wouldn't let a Dr who is not a specialist in connective tissue disorders tell you that you don't have it as it is not their speciality. It can be so overwhelming and confusing going through this. I have quite the list of diagnoses myself. I sometimes also gaslight myself into thinking that I may be exaggerating but I m not it's just very difficult to come to terms with having so many things going wrong that I think it can be the brains way of trying to cope with the situation. Your doing so well, I just wanted to encourage you to not give up on an EDS diagnosis. 🙂💕
First of all, you are right. When you live with an array of symptoms on a daily basis that prevent you from functioning as a "normal" human being, disabling you and leaving you with quality of life that is not the greatest, it most definitely 100% becomes a part of your identity. You are more than just your disabilities but your disabilities are definitely a part of you. Also, it is so incredibly frustrating to not have concrete answers. I find even with my diagnoses (which took years to get) of POTS, generalized hypermobility spectrum disorder and I was recently diagnosed with autism and ADHD, I will experience symptoms that throw me for a loop and I will want so much to figure out the "root cause" so that I can have a better understanding and implement the right treatments to feeling better again but I think a big problem is they don't actually talk about how disabling some of these things are when you get diagnosed. Like with POTS, how it's common to also have hypermobility or mast cell issues along with it...and if you look at ALL the symptoms POTS, hypermobility and mast cell causes, it's no wonder people with these conditions can barely function. They affect nearly every aspect of your bodily functions from acid reflux, indigestion, gastroparesis, rashes, hives, itching, swelling, anaphylaxis, tachycardia, low blood pressure, dizziness, fainting, diarrhea, severe constipation, prolapses, inability to regulate body temperature, joint pain, easy bruising, disabling fatigue, anxiety, sweating, dry mouth/eyes....it's overwhelming but I don't think it's adequately conveyed as being that disabling so we do mentally have a hard time wrapping our mind around how that could be the source of all we are feeling and going through. Also, there is wondering what the root cause is of it all. I have the hardest time because I had many issues in childhood but it wasn't until after I had kids that it really hit me hard and I look at my mom who struggled her entire life to get answers, she was called a hypochondriac by her family and doctors and experienced an array of disabiling symptoms. Her mental health was completely deteriorated. She was only diagnosed at the end of her life with an answer finally of mitochondrial disease and now the state has just dumped her off at some kind of "assisted living facility" that looks like it's straight out of a bad movie. The people running it I don't even think are nurses. They were drinking on the job. My mom was filthy and her hair wasn't washed in over 2 weeks, they literally just left her to die. It's out in the middle of nowhere and nobody was bringing her to doctors appointments. It is truly unfathomable, terrifying and disgusting how disabled people are viewed and treated by society. It is not just hypochondria, don’t ever let anyone make you think or feel that way. If it was them living with the same symptoms daily, best believe they’d be trying to figure it out too. Human beings are just ignorant to what they don’t know or can’t understand or haven’t experienced. Also, I really appreciate you are not on the “toxic positivity “ bad wagon 🙄 nothing is more depressing than feeling you have to mask in order to make people comfortable. You can usually tell people that are struggling internally by their toxic positivity mindset. I love that you are realistic and not afraid to share how you really feel and what you’re really going through. It helps people feel less alone, it’s relatable, it actually is inspiring. Thank you for being real.
I’m think you should just be you and be raw no matter what mood you are in. If someone wants just one side of you then they are not here for you just themselves and I personally feel like if you are a personal vlog then your viewers should expect to get all of you not just one side. I connect to all the things you share because I live this life like you do. Let’s put it this way. If you’re only positive people will start complaining about your toxic positivity. You literally can’t win just be who you are and share what you wanna share. I support all of that. ❤
Why tf do abelists always think we ENJOY this??? I really wanna know. Do they think we bankrupt ourselves and lose relationships/jobs/hobbies for the "pity"? That honestly makes my blood boil. you do not deserve that. we do not deserve that. Dont let the bastards get you down. Love you ❤
EXACTLY like I really LOVE that my RUclips channel where I posted my dance videos that I was so passionate about changed to me talking about and trying to figure out my sudden disability lol. It makes me sick to my stomach that people actually think we do this for attention and pity. Who in the world would want this??!! We just want answers and for people to understand us and to believe us
Why does someone feel the need to say those negative things to you? Anyone who suffers with like symptoms knows and understands you. If they don’t like what you say stop watching.
Chronic Illness??? Trust me as a FIBROWARRIOR, I'm at a point that i hardly talk to people on phone. This is becos my condition is so bad that even a basic conversation can trigger my symptoms. Should i talk about the forgetfulness, or the fatigue that refuses to leave? Or the way i cannot stop pretending as if nothing is wrong with me. Many of those i talk with dont even know how much strength it takes for me just to show up on them. Aimee.. Trust me i understand ur struggle. It's only in cases of CHRONIC ILLNESSES doctors sould ask u how u think they can help you, just to excuse their HELPLESSNESS over the conditions... What a life we live
Please don't let people shake you Aimee, like the one that started "I don't wanna offend you but.....". That just really means that you know what you've written isn't good, but if you write that like a disclaimer at the start, it makes it ok. No. How do you expect people to be positive, if you can't find it in yourself to be positive, commenter. They clearly don't know what it's like to live with things like that. That really isn't how you come across at all Aimee. You do so amazing with what you are living with, and what you share. You handled how you responded to that so well 💙💙💙🤗🤗🤗🤗 I understand where you're coming from here. I hope you feel better about it all soon 💙💙💙 but keep going, you're doing incredibly! Especially the times where you might not feel like you are!
It just sucks, really sorry you're going through this. It feels like we have to vet out dr's and naturopaths and it's just so exhausting, as if surviving chronic illness wasn't hard enough. The accuracy of tests from functional medicine is questionable on a bunch of tests and then dr's won't run any tests because on paper the basics are fine therefore you're fine. It's so frustrating and discouraging. Trusting your gut is important with every practitioner , usually if you feel something's off it probably is. The dr's and naturopaths who claim that they've never had "hard cases" and you're an exception are either very new to treating people or it's a massive red flag. The more you know about the body the more you realise how little we actually know , how we are biased we can get and need to keep that in mind when reviewing medical studies. I don't want to add more unsolicited advice, but finding a specialist for complex cases may be more helpful. ( Maybe look at the patreon UNRAVELED: Understanding Complex Illness with Drs. Kaufman and Ruhoy) Whatever you do you will get hate for being too positive and glamorising illness or being too negative etc. Wishing you all the best.
It's so frustrating when many of the symptoms tend to overlap with other illnesses. You are so valid in what you are feeling. ❤ Iwas in a similar position untill about 20yrs ago or so & it wasn't fun at all. I spent many of my waking hours trying to figure it all out. About 20yrs ago I stopped the meds (that were also making me sick & weak) & I decided to only focus on my diet & water intake (started purifying water for everything, ice too) to help my migraines. There were so many foods I was eating that I had no idea were hurting me. I still deal with chronic pain & fatigue & have since also broken my back in 3 places buuuuut my migraines are much better so that's the win I'll take. I now only have migraines or sinus headaches a few times per week YAY!! I stopped going to the doctors trying to figure all of the rest of it out. There came a point where me trying to wrap my head around everything was actually causing me more stress & anxiety which was contributing to the excessive amounts of migraine & sick days. When I stopped searching for the right diagnosis & focused on the migraines only I began feeling better with my mental health. I began consuming a lot of guided meditation videos while I slept & self help content while awake. Do I still hurt, yup. Do I still search for foods that reduce inflammation, of course. But I am no longer looking for that elusive diagnosis that I felt for so long would heal me. I now spend my days focused on spending time doing what brings me joy & fills my life with all the good feelings because I need my mental health to be in top shape a lot more than I need that diagnosis. I hope you are able to find peace. ❤
You have mold exposure, aka CIRS. 17 years of CFS and POTS here, trust me. Might not be the overnight cure you're hoping for, but it'll be a huge relief for you to address it.
I understand your frustration! I am also struggling with similar challenges. I have mitochondrial disease and I have other symptoms that are not explained by that illness and doctors cannot figure out what it is which is frustrating because how do you fight something you don't know what it is. It is also emotionally exhausting to have an illness that isn't very visible to people who don't know you very well. My doctor mixes western medicine with natural treatments as well. I'm sorry there are people who feel the need to share every contrary opinion they have. Please know that is not how I and several others feel! Your cleaning with chronic illness videos especially have been a game changer for me! If it helps that unnecessary negative comments is a common problem for RUclips content creators. I don't mean constructive comments that point out something that could be better but unhelpful ones that basically are that the channel is not for them or it's not their preference. I am often annoyed by those comments because they clog up the fun or interesting comments. The most ironic place this happens is on COMEDY channels! If it's not their type of humor they feel the need to write "not funny" or something like that. If a person doesn't get a certain joke or they prefer a different type of humor just go watch that. No one cares. I don't watch every video on any channel but I enjoy watching yours and some other channels when I have the time. Your health is your priority though so please don't feel obligated to push through if you're not feeling well but also know many people enjoy and benefit from your videos when you feel up to doing them 😊
Bingo. We can't escape. We may be distracted for short chunks of time but they're short lived. Reality hits hard, over and over and over. In addition to a horrifying list of illnesses I have chronic insomnia which nearly does me in. My tank is empty before my day begins. Like you, tears are a regular thing. I get my hopes up and they often crash. People have no idea how fortunate they are to sit, stand, swim, lie down normally, socialize, bend over, do stairs...without weighing pros and cons and analyzing whether tomorrow's pain will be worth it. My list of things I can do is shrinking and it's often all I can do to merely exist. When I think of my future, I sometimes panic. But moments of joy are extra sweet and gratitude is crucial. We moved continents to be where I can be immersed in nature and feel better mentally. Being away from family is awfully hard but I need to do this for my mental health. You're more encouraging to us than you know. God bless and keep you. I pray you will find answers so you can proceed and live life with continued grace.
Well, like you I also was confused as fuck but I'm going to the autoinmune route right now. At the beginning of the year I also had thought I had lyme disease because I tested positive but then I made a bigger study that actually searches for the bacteria in the blood (not only the antibiodies) and I didn't have any strand of more than 20 type of lyme bacteria. So I think it's a false positive. In the end I tested positive for alpha 1 and beta 2 adrenergic antibodies which 90% of POTs patients have so I think it's more of an autoinmune issue. Specially since my family also has sarcoidosis which is like the cousin disease to lupus. My current theory is that these antibodies reduce adrenaline and that maybe that is what causing allergies and skin issues. And the sarcoids from sarcoidosis are made of t-cells and macrophages. Singer Halsey who has pots said she has a t-cell disorder and has sent money to lupus and leukemia research? Doesn't there seem to be a link? And then in Germany they are curing people with t-cell teraphy. Sarcoidosis doesn't have any test right now but it ususally has high ACE receptors and covid bonds to ACE receptors. At the moment I want to see what they give me to treat the high adrenergic receptors and will comment here if something works. Theories keep changing don't worry. The world was flat in the past and now it's round😂
I feel this so much… I’ve felt skeptical about naturopath/functional practitioners I see too because they usually just focus on one thing and don’t look at the individual. And it does get expensive sometimes without much progress… but at the same time they have been better than regular doctors I’ve encountered so far. For Lyme/EDS there is some conversation about which causes which/which is a “root cause.” They are connected and often found together.It’s so hard because we do have to do so much research by ourselves. Keep on sharing… lots of us are on a similar journey. Sometimes these things help us put the puzzle pieces together. I was told to take Allimed for Lyme but it does make me sick too. My body doesn’t do well with detoxes.
Lyme and EDS are not connected at all, although they can present with similar symptoms and can be confused with one another. EDS is a genetic mutation acquired prenatally, causing the body to make weak or defective collagen. There are currently 13 different types of EDS, which affect various genes and can affect different areas of the body. Lyme disease is an infection caused by the Borrelia burgdorferi bacteria, caused by the bite of the black-legged tick, which is found primarily in the Northeast and upper Midwest of the United States, with about 95% of Lyme cases occurring in 14 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin.
@@Dulcimerist I understand where both come from… the connection I’m talking about is the amount of people who have been diagnosed with both… and I’ve seen those familiar with the conditions discussing whether the genetic component of EDS predisposes someone to getting a chronic Lyme infection (Lyme often targets connective tissue), or if the Lyme infection itself causes EDS symptoms to get much worse and noticeable. I have a nephew diagnosed with both, although he tested positive for Lyme first, then developed hypermobility issues.
@@tanglewoodhomestead EDS symptoms tend to get worse or aggravated with infections, surgeries, physical trauma, muscle atrophy, pregnancy, etc. Often it's one of those events which make the EDS signs and symptoms more pronounced or debilitating so that the EDS is finally detected and diagnosed.
Its hard anuf doctors not believing us so these people should know better i try to stay positive and do doctor joe dispenzer medications and healing and natural stuff where i can but no sorry we should support each other even if we talk and exspres our pain and frustrations in different ways we still need to not make someone els that does it different feel like crap just like when you walk out the doctors so sending you lots of love and healing from England bless ya heart you do Amazing with your kids your husband is a rare young man for support as well shows you love each other very much im 56 and not worked for last 3 years with fibro and rheumatoid arthritis and after nearly 39 years together find it hard ❤dont take it in just like those docs we have to shake off when they sneek into our minds more people appreciate you than not sweet heart ❤️ love to you and your family Xx
Oh girl, please don't go on your diet. I understand that you are tired of looking for a solution and that you believe until the last moment that what you are doing now is the right thing. You're focusing on the wrong things. You spend your energy in places where you don't have to. Don't try to find a name for what's wrong with you, because you've already put a lot of effort into it and the result is always the same. Please understand that it takes years to cure such a chronic disease. Don't believe that eating meat and literally drinking oil and butter will cure you. Common sense simply has to evaluate such an idea as wrong. The only thing that will happen is that you will only intensify your illness. You slow down your metabolism, and build your body from fat, which increases your stiffness, headaches, and takes you further from the path to health. I'm sorry for writing to you directly like this, I don't mean it badly. You are a very nice and good person :), but really already very hurt. Aimee, the only real, healing and sustainable diet is the HCLF diet or starch diet, which has millions of success stories, including mine. I won't lie to you, in your case it will already be a treatment, maybe even for a year or more.
Most often, people who have EDS are misdiagnosed with something else, since most doctors aren't familiar with EDS or have outdated information or misnomers about EDS. Since the EDS diagnostic criteria establish the presence of hypermobility and anomalies with connective tissue, someone who does get misdiagnosed with EDS would tend to have one of the rarer connective tissue disorders, such as Marfan or Loeys-Dietz.
@Dulcimerist do those two not show up on the genetic tests? I don't recall. And yeah I was just strictly speaking of being misdiagnosed WITH eds. I don't believe I've ever encountered that.
@@topaz2440 The most common type of EDS, hypermobile type, has not had its gene identified. 12 other types of EDS have had their genes identified, and there are genetic tests for those less common and rarer types. It's likely that hypermobile type will have multiple genes identified, splitting it into additional types of EDS. Hypermobile EDS is diagnosed with clinical observation with several sections of criteria, and there's a section in it to eliminate differential diagnoses which would present with similar signs and symptoms. Lyme disease doesn't have a genetic test, since it's an infection from a very specific species/strain of bacteria that's transmitted by a very specific species of tick that lives primarily in the region and states that I listed earlier. It's acquired at the time of a bite by an infected tick.
if you want to know why you have all this diseases, I recommend Jarred Younger. he talks about the genetic background, current research and clinical tests, and the immune mechanisms underlying the many symptoms of autoimmune diseases. sometimes there are no easy yes or no, this or that answers. I feel your frustration might come from the fact that you would like one, and who could blame you, with that much fatigue and so many symptoms. but there is hope: it's just crucial that you place it in the hands of people who follow evidence and understand the complexity of these illnesses. I can certify that daily magnesium, vit. D (check the levels), vit. B, 300 mg of vit. C, olive tea and good quality quercetine have made me feel better, and these are backed by science. I am also popping a dao pill before my last meal - not so much evidence for that one, but I can feel it reduces the itching. I have POTS and MCAS, just like you do. I feel that addressing your MCAS (which is very hard to understand and can have varied/diffuse symptoms) could improve how you feel. I've noticed you don't really talk much about it. while POTS is about physics, MCAS is about chemistry, and mast cells mediate inflammation in our body. I recommend reddit if you'd like to dig into it.
You may want to check with knowledgeable medical advisers that are Worldly on your topic matter. is it cool when i use them word like "um try get advice NON american" about lyme Aimee
Hey Aimee. My husband is also dealing with chronic illness and chronic pain. He's undiagnosed and has been dealing with it for nearly 20 years. Your thoughts in this video sound very familiar to me. The comment shared at 10:55 was incredibly frustrating to see/hear. Part of why I love your content is because it's real. It's not excessively cheery (nor should it be), but it's not doom and gloom. You are sharing your journey, and that's what we're here for. I hope that you get your diagnoses. I hope you find something that helps, even if it's not a cure. And I hope that it's soon and cheap! But until then, just keep doing your best. Thanks for the updates. 🫂
Please still comment on my videos! It helps my channel! :)
Greetings from South Africa. We have exactly the same situation. I have been diagnosed with 7 illnesses. I think they have 5 correct. Not so sure about 2. They keep on doing the same tests, even though I tell them that I want them to look at other options, they simply ignore my requests, because I'm not a doctor. Obviously that means I can't read or do any research of my own. I have several degrees, one of which is a masters in research methodology. My IQ is 148, which is probably higher than most of the "specialists" who ignore all of my input. I'm not bragging. I'm sharing this to make a point. Every week I spend in hospital, it's the same routine in a perpetual cycle. Telling a doctor that they need to take my input into consideration because I have done research for several companies in the financial sector, followed up with corrective measures in logistics, procedural changes in workflow, marketing and rating guidelines that has never failed to drastically improve turnover, profit and solvency margins for every company I consulted with.... and their IQ's are probably 20+ points lower than mine, is not exactly the way to build rapport with physicians who might end up handing me the referral that could very well be to the doctor who finally has the answers.
We all struggle and most of the time we stumble our way through life as we pretend to be an expert of some kind. Anyone who says they plan every aspect of their life and career, and everything is going according to plan, is on time and meticulous and they have it figured out... anyone who says that is full of it and I guarantee they are falling apart inside. When nothing you do is working and you feel like a failure, it means you are a human being. The only failure is quitting. You are stil here, so you haven't failed. Unfortunately for us there's no Greg House on the planet. I'm not a total moron and what I have figured out is that nobody has it figured out. You haven't closed in on the root of the problem. All that means is that it's back to the drawing board. There are plenty of illnesses that I have been able to rule out. You are in the same situation. Both of us have been at this for years, so we have crossed a lot of stuff off our lists. There's a word for that, you know... progress. Now finish your pitty party for the day, there is more work that has to be done tomorrow. Pain hasn't stopped us from making progress yet. I don't know about you, but I intend to progress until I win.
My comments vanished. I tried to bring you some motivation, but both comments are missing.
Are you on X? RUclips deletes 90% of my comments. Do they have restrictions on health related comments or did I say something you were not happy with? I'm also unsubscribed now.
@@Jacques.Smith_ that's so weird! I've heard this was happening with RUclips. I don't understand it!! I'll look into it though.
I think sometimes ppl with chronic illness can be the most judgmental of others with chronic illness. I’m so sick of people telling us to be positive, etc. I really like your channel and YOU ARE DOING A GREAT JOB. ❤
Anyone with chronic illness should know its impossible to be strong, positive and inspiring all the damn time. Please dont feel pressure from dumb comments to cater to those few. Obviously there are a ton of people who relate and follow you because you're honesty is encouraging.
Omg Aimee that comment at ~12 minutes is absolutely ridiculous… the whole point of your channel is to connect with others who are suffering like you, of COURSE you’re going to talk about your illnesses, and I’m so GRATEFUL you do. You are not whiny or self-pitying at all, you have the most beautiful positive attitude and strength through all of it. Whoever commented that has probably been told to shove down their feelings and not talk about their illness- that is coming from a place of fear and everything they said about you comes from their own insecurities. You are absolutely amazing and I for one SO appreciate your vulnerability about your health. It helps me so much. Love you girl 😘
this
The larger your channel gets the worse the comments will become. Find a way to filter the bad ones. It’s also important to remember they don’t know you and they don’t feel your pain. It’s really important to insulate yourself. I have had to do this because we are already sick. We have very little reserves. ❤❤
Troll filter ? Called unsubscribed.
Best advice ❤
The community you started for us is so important. You have no idea how much you’ve helped me in my journey and so many others too. You have critics, yes, but you have soooo much love and support too. I truly care for you and you care for us and that’s why we keep pushing through fighting these illnesses together. RUclips has its time and place but your community is where all the real love is at. We would’ve never had it without RUclips though.
I like the way you have designed this channel. Trying to remain positive, but also showing that positivity doesn't fix everything, and that bad days still happen and are okay. It's true that chronic illness isn't only who we are, but it is a major part of our lives, and affects how we think and the decisions we make. And denying any of that is 1. toxic positivity and 2. a lie. To ourselves, more than anything.
I think that you have a good balance between being positive and showing the hard reality of chronic illness.
Hi Aimee! I was the subscriber who left the comment mentioned around the 6:11 mark of this video. I completely understand the frustration of having so many doctors tell you so many different things and being at a loss with what to do in terms of treatment. That is basically where I am at myself currently. I am very sorry if my previous comment came across the wrong way at all - I was just sharing my personal experience with a holistic doctor and didn't know your history with holistic doctors, so I am sorry if that was triggering at all.
Thank you for sharing your thoughts in such a kind way! I really appreciate that! :) I honestly didn't feel you were rude at all. You don't need to apologize for "triggering" me. I find that when I am already insecure about something then I a comment (in person or online) hurts more. That is my job to deal with. It's not your job to dance around my feelings. You are trying to help and I truly do appreciate that. I hope my response didn't come off rude back to you. I just wanted to clarify :)
It was so kind of you to clarify!
This is an honest portrayal of what people with chronic, systemic illnesses go through. This isn't unusual at all. I'm sorry people don't understand that.
Trust yourself. No one will ever understand until they are affected by chronic illnesses. They will never understand the depth of your tiredness and will only be able to compare it to their own level of energy.
I appreciate any advice and help you can offer those of us who are energy challenged for wherever the reason may be. Living life as a spectator will never be totally satisfying.
You are doing great. It is horrible how people judge/talk to others online. I was told by someone in a FB group that I don’t have CFS and it made me feel ill and I left that supportive group because of it. You are doing so much good and we need to learn to rise above it somehow
Aimee, I really appreciate you and all the time and energy you put into these videos. You have your tribe here. Chronic illness is brutal to live and navigate through for most us of. I send you so much love and always have hope for you!
"Some days I play the victim and some days I play the hero." Well said.
Aimee, I am right there with you sister. You’re not alone. You’re not a hypochondriac. You’re valid. Praying for you and sitting in solidarity with you! I have EDS, POTS, IST, Lyme, EBV, fibro…. All real. All part of our lives. Not because we WANT it to be. Sending love!
Also, Lyme was my first REAL CLEAR diagnosis (we literally test positive, people, it’s not just a guess😅) and I was literally dying. I was down to 98lbs and unable to eat or pick up my phone or sleep, etc…. Lyme treatment saved my life! Antibiotics AND buhner herbal protocol made a huge difference for me. I was in remission for a long time before I got really sick again and found out I have more… BUT that doesn’t make Lyme less real!! It’s still there and still needs treatment when I have flares. And Lyme can literally cause several other Illnesses! Dysautonomia, fibro (fibro is usually Lyme or EDS), etc…
I am healthy, but you inspire me a lot. Do not listen to anybody. You are amazing.
You do you! I also struggle with many symptoms and undiagnosed illness. One can not be positive all the time...and that is a fact! So if your viewers can not give you grace for it and want to unsubscribe - so be it! This is your channel and you present your struggles under the light YOU want! Positive or negative, you do you and people should be able to give you grace and be patient. Even if you are hypochondriac...this is YOUR JOURNEY!!! the ones who want to join you in this journey can do it the others can go away. My only advice for you, is to be strong, develop ticker skin, keep being kind and don't let the social media toxicity to get to your soul.... AND keep going. You dont need to explain yourself all the time. You are doing a great job and many of us appreciate your work and your vulnerability. So, be blessed and please keep moving forward.
I feel like this too... I miss my life before all of this, before I became ill. Praying for you... I know how it is. I truly do.
I don't know much about lyme, but EDS is an all-encompassing condition affecting us head to toe.
I absolutely understand everything you're saying. I'm also on my chronic illness journey too. The suffering is difficult to deal with. You are one of the only people on YT that is relatable in dealing with chronic illness. I hope one day you will find healing.The answers are out there somewhere 😊 Sending positive vibes your way! 🎉🎉❤
Not sure if you’ll read this, but I’m 100% you. Searching, never giving up, trying everything to get better. I’ve been diagnosed with everything. Been sick for 6 years plus. many people say doing brain retraining, but I’m just not 100% buying it that it works. I’ve been working on my nervous system for over a year and I’m still sick. Maybe I need to keep going. Who knows? I’m so frustrated and so sick of it all, but never want to give up. Just want to feel better. ❤ sending you so much love. I feel everything you said. It’s so, so hard. The only way I keep going is through my relationship with Christ. ❤
I'm amazed at you Aimee that dispite your fatigue you are so alert and articulate, but I can see your energy is ebbing as you conclude, you are so much more than your illness, you definitely gave your best shot❤.
I love your channel Aimee. That person will find a different channel to watch. Keep going and keep doing what you are doing.
I’m a fairly new sub. I started watching because I totally get your frustration and pain. I’ve come to realize that I will forever just be someone who has something that no one knows what it is or how to treat. So I just live. How ever that looks each day. I too just want to feel better. Some days are torture. And then the very next day I’m a bit better. Who knows why. Keep posting you. I like hearing that there’s people
Out there like me, just trying and trying their best….❤️❤️❤️❤️
Please just be you. You are the person that gets so many of us through the day. You are the person that inspires me to hope for better. You are the person that validates what I feel. We need YOU! Simply YOU!
On the night of Mother's Day, right after my child fell asleep, I ended up in the ER with a prolapse & told I will need a hysterectomy. I kid you not, you are the first thought that came to my mind. I instantly remembered you talking about this. That gave me such comfort.
I also remember watching your video when you said you were taking a break from RUclips. As a grown person, I actually had a meltdown, feeling like I was losing my only friend. Thank you for being here, & for being YOU! and also, thank you to your husband for being so supportive of you. Not all of us have supportive or understanding spouses or partners. It makes every day so much more painful. I am truly sorry for all you endure, & I'm sure it's no consolation, but thank you for being honest & open & here for us. Please know that you are helping so many families! Thank You!
I feel that for sure! I am in the same boat. I have a mystery thing and have been dealing with it for years. Invisible disabilities are so difficult because no one else can understand what we are going through because they aren't living our experience. It is isolating sometimes because you feel like no one gets you, and everyone thinks they know better than you about your own health. I hope you figure out what's going on. I will be seeing a complex neuro specialist in a couple months, and I am hoping they will have some answers for me. Anyway, you aren't alone. There are more of us out here that get it. And who have experienced the same things. It's unfortunate that the medical field is so money oriented and it's true that lots of doctors have a hard time understanding people who have chronic illnesses/invisible disabilities because they can't see it or feel it. And they just want to brush it off as your issue (it's all in your head, or you are faking, or you just want attention... etc). Anyway. You aren't alone. Keep going. And know that not everyone out here is criticizing you for trying to figure out what's going on with you and how to get better!
I got told last week by a benefits councillor that I'd juat spent an hour talking about my illness. 4 years Long Covid. He asked "so is that your identity now?". To be honest, yes it is. Can't do much. Can't go to everywhere i would like to go. My life changed 4 years ago. Thanks to Covid-19. And now Fibromyalgia and Costochondritis. And my walking is affected. Fatigue. And can only do simple things.
The confusion can be all encompassing and just eat at you.
I enjoy your channel a lot because it brings in people with many different illnesses and has such a great commenting community.
You definitely are not over reacting about your situation, I’ve been trying to explain to people online how serious one illness I have can be for people and they refuse to acknowledge it.
Your channel won’t be for everyone, but it’s an amazing channel for many. If I feel like I need to stay away from more negative videos on RUclips I do, if that’s what I need to feel less alone I watch it, it’s okay to want to feel understood and less alone in the struggle.
I know I’ve mentioned it to you before so I just wanted to tell you I finally got into a therapist yesterday and it was amazing! It felt good to have my mental health struggles acknowledged professionally. It felt good to hear that I actually have depression and anxiety and that I’m not going to snap or go insane. I feel like I’m finally getting the mental help I’ve needed for over 3 years, and I just feel a big sigh of relief!😮💨
Your videos help me find ways to explain to my doctors how I feel so thank you for sharing.
I’m going to remember what you said that you have hope and are going to hang on to it, even if it’s just a little bit, that hit my heart.❤
Aimee, I'm sorry to hear your so confused and tired, because of a lot of negative subscribers.
I want to remind you of something very wise you said not so long ago.
That was this: "I started to notice that what they are saying and what my brain thinks that means..."
I belueve there are really negative subscribers, but maybe not as many as you feel like there are.
Big hug from me.
I had a very similar experience with naturalpathy. Spent thousands and thousands of money on her and her treatments not counting vitamins. You are absolutely right. I have pretty much withdrawn from society due to their lack of understanding.
thankyou for this video, because i all ways felt you seemed to self diagnosed. but after watching this video i feel you are just trying to understand what is going on with your health. i hope you get your answers when you get your test for EDS.
Hi Aimee, this is the first time I have ever commented on a youtube video, but your latest video just made me want to HUG you! You are amazing and doing an incredible job. I am so pleased to see that people are leaving positive comments of support for you here too. You have helped me so much and I wish I had reached out to tell you this earlier, but your videos help me feel less alone and I completely relate to what you talk about. It's so hard to not mention your chronic illness because it does effect everything. I end up distancing and isolating myself from others, because I don't feel I can mention anything to do with my chronic illness, because people won't and don't understand. You're so brave doing what you do on youtube, in your community and in your day to day life. I believe people want a place where they can speak and listen freely about what is real about chronic illness, but also have hope and I think you strike this balance perfectly. Keep going, I know it's hard, but for every negative comment and person who doesn't agree or understand and is just plain judgmental there are a 100 people you're helping and I am one of them. You inspired me to have courage and try for a family despite my chronic illness and we are now expecting our first child! You are changing lives :) and each time I watch your videos, you give me hope and a feeling of friendship that I often miss out on. I hope that these positive comments help uplift you today. I know how overwhelming things can get and understand how confusing Lyme and EDS can feel as they are still not fully understood, you're just doing your best and that's all we can do. Love, light and hugs x
@@sophieclarke9102 THANK YOUUUUU!!!!!! This comment made me 😭
@@Aimee_Esther Thank YOU! I hope they weren't sad tears? Big hugs. I hope you're having a better day today? x
Dear Aimee, I have been suffering from chronic pain and chronic fatigue for a little bit more than two years now and as you said, there is no actual break from it. No matter how hard you try, you can not escape from a body that is suffering all the time, and you can not escape from a mind that is constantly doing its best to survive in a life that sometimes feels like a burden. But life, no matter what, remains a miracle, and you embody that truth with so much strength and grace. I have discovered your channel a few months ago and following you has made a huge difference in my life. I have never felt pity for you; I have always felt compassion, tenderness and gratitude. What a pure, brave and beautiful woman I thought, and what a precious gift she is giving to humanity by sharing her story.
We have good days and bad days, and good moments and bad moments every day as well, so it is indeed hard to find stability. And yes, sometimes we have deep moments of connexion with the divine and we feel blessed for our journey, our so hard but also full of light, journey. And other times, we feel overwhelmed by pain and frustration, and fatigue. What am I doing wrong ? What do I don't understand ? What is God expecting from me ? Why can I not be healed ? And what good can I bring to this world when all of my energy goes into a survival mode... We have so many questions and not so many answers.
But, the simple fact of being here and being true to ourselves is enough. You are a pure and very courageous soul that brings so much light, so much love, so much kindness and so much hope to this earth that deeply needs it. Thank you for not giving up, Thank you for being vulnerable and honest, Thank you for being so humble and inspiring. I can not imagine what you're going trough, but I can see and feel the good that you bring to this world. Keep doing your best, keep following your instinct and keep listening your heart. I send you my prayers 🌟🌟🌟
With all my love, Zôé.
30% less fatigue is a start. This is your journey . Judge everything is a requirement. Making mistakes is amongst the best way to learn.
Of all of the diagnoses that doctors have placed on you, only Ehlers Danlos can explain your prolapses and stretchy skin. That's the lead you'll want to follow, and seeing a doctor who specializes in EDS will give you the empowerment you need. That specialist can give you the second opinion to confirm your EDS, and can sort through your health issues to tell you what the EDS is responsible for.
The problem with not seeing a doctor who specializes in EDS is that the majority of doctors aren't familiar enough with the 13 different types of EDS, and most have only seem medical journals with case studies documenting the most extreme cases with most exaggerated symptoms. Then these less educated doctors are mistakenly led to believe that all EDS patients need to present like the extreme cases. The doctors who don't understand EDS will often write off an EDS patient's symptoms with a diagnosis that doesn't quite fit or explain everything, such as fibromyalgia, Lyme's disease, or psychological.
The bottom line is that you're not currently being empowered by the healthcare system, and you're feeling uncertain with differing opinions between doctors. I've been there, and it wasted decades of my life. Definitely see an EDS specialist. If you do have it, they will provide you with the knowledge and support to empower you as a patient. If you don't have EDS, the EDS specialist will not try to sell you herbal supplements, and will not want to see a non-EDS patient because they have their hands full with actual EDS patients.
Yeah, EDS definitely makes sense to me too.
Small fiber neuropathy gets widely misdiagnosed as fibromyalgia that is a comorbidity of EDS
Hey Aimee, I have just joined your group and you’re helping me so much. Please don’t let these people get to you. You’ve been doing this a long time you’re amazing to reach out and try to help others, by sharing your story. I would think other people with chronic illness would surely be more understanding.
I feel we know our own body better than anyone else. If you are feeling even a little healing, it’s worth giving it a try if it’s not too expensive and you can do it.
Thank you for all you do!! You make a big impact and difference for a lot of us!!
“I want to take break”
The heartbreak 💔 in that is so evident.
This breaks my heart Aimee. You know how you feel. We who are all in your community are here for you and believe in you! No one else should be putting these comments up, why do people have to put these comments on here. Aimee your amazing and the content that you put on RUclips is too 💕
Some comments wll hurt for sure. Even the most popular on the internet will read 100 great things and 1 bad yet the bad takes all the attention and ruminating.
You are doing a wonderful job, always authentic, always kind and you are right, your content wont be for everyone and that is totally fine. Those that stay have gotta take the full package, the laughs, postivity, rants and anxiety. The human experience. I love jamela jamil podcast as she lets it all out while also continuously seeking out messages of hope for the world. Sending you so much love from Cork, Ireland. You help me be a better friend to my friends with sicknesses and back when I had sibo. Thank you. Stand strong in your truth, you are a fucking goddess, a warrior and a beautiful imperfect human like those around you ♥️♥️♥️♥️
I love Jamela Jamil! She's the most high-profile celebrity who has Ehlers Danlos syndrome and has been vocal about it!
You are so relatable!
See in the instance of your being a positive person. You are. Brave too don't be worse to yourself than FM is. You don't deserve it. Who would ?
For whatever it's worth, ticks in Wyoming don't carry Lyme disease. Lyme disease is most common in the Northeast and upper Midwest of the United States, with about 95% of cases occurring in 14 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin.
I appreciate your honesty and showing the reality of chronic illness. For whatever it’s worth…
General rule about fatigue. Once gone you can stop doing whatever you did to kick fatigue. Once gone it doesn't come back.
Just: you are a freaking good, brave person! As someone diagnosed with chronic depression I know all of the feelings you‘ve just mentioned❤️ pls feel hugged from a distance ❤
Dear Aimee, I'm so sorry you're having to cope with negativity from other people on top of all your other hardships. I hope one day you do get better as our knowledge of medicine advances. Sometimes doctors and other kinds of medical/alternative practitioners act as though they already have all the answers that could possibly exist, but of course we know from history that this isn't true. You are not a hypochondriac, you are suffering from very real, severe symptoms and you remember the point at which they started - it may not be clear why they started but it's interesting that you had an 'event' (food poisoning) that seemed to trigger everything off - this seems to be a common experience in the chronic illness community. Just cos the docs don't understand the mechanisms at work, doesn't mean the illness ain't real!
I have found comfort in many of your videos as you look so hard for positives and bring the rest of us hope with your resilience, whilst also being real about how hard it really is to live with chronic illness. You are allowed to have times when you cannot be grateful, cannot be endlessly positive. It doesn't make you any less of a good person and it doesn't diminish the helpfulness of your channel to others. Solidarity 💪
Mast Cell Activation Syndrome (MCAS) can even react to foods such as Monosodium Glutamate (MSG), alcohol, shellfish, artificial food dyes and flavorings, food preservatives, pineapples, tomatoes & tomato based products, and chocolate. Sometimes a MCAS food reaction can even mimic food poisoning in less severe cases.
I'll be heading to your community shortly. I wanted to consume as much of your story as my painful broken brain would allow.
A few things... What is your blood type? What do you eat?
I've had Lymes since 1974. Which led into endometriosis, etc... Rheumatoid arthritis. Depression. Struggles with alcohol, other addictions. I'm happy to see the end of all that... Have you come across Mikayla Peterson? The Lion Diet? It's helped me tremendously. Please do a food sensitivity test, not an allergen test. It might make a difference. Wishing you all the best.
That final comment is ableist and an example of toxic positivity. That’s all their own judgement and self-judgement. Delete and block!
I totally understand the confusion when doctors tell you different things. I’ve been gaslit by some holistic practitioners (eg. when I had stage 4 endometriosis, an acupuncturist told me I didn’t need surgery, I just needed to do a lot of acupuncture. The surgery was a huge success). So holistic doctors definitely have their own biases as well.
Hang in there. ❤
People are constantly trying to “fix” me. People don’t understand. Doctors don’t understand. I live in chronic pain and fatigue and mine is different than yours I’m sure. Please don’t let negativity from everyone bring you down. You are an encouragement.
Hopefully you at least have a diagnosis so you know why you have the fatigue and pain, even if that health condition is one that can never be "fixed."
Aimee being you were told by that Dr. Is that why you said you don’t have fibromyalgia. I do have fibromyalgia and would love to know if that’s why. Keep doing your channel because the things I hear hurt but somehow well you can’t get mad at your family and I don’t want too they just don’t understand it’s not because of my age I’m 74 and was diagnosed 10 years ago take care Aimee and hang in there 💜
Believe in yourself as at the end of the day only you can celebrate your pain being one less or your fatigue being two less. Take them small victories for however long they last. Only you know your body and how you feel as your in it every minute of every day. So don’t let anyone take that from you. You are not alone in how you feel. People feel there illnesses differently to everyone else and always will.
Keep doing what you do as your amazing and I love how you keep it real and your the only Chantal I have felt so connected too. Thank you for that. Also happy you made another video.
Keep strong the negative people will always try to pull you down because they will never be you and live what you do. Stay strong you have many of us behind you❤
Also, lots of people don't realize that some illnesses are very difficult for doctors to figure out.
My heart breaks for you! I’ve watched your channel & you helped me sooo much with the recommendation to try jobst compression socks & vitassium! I don’t agree with that persons comments, I don’t think your into the victim mindset thing. I also don’t know if my story could be helpful but thought I’d share in case it could! I had severe neurologic chronic Lyme disease. It was my first diagnosis, I woke up one morning like Id had a stroke, couldn’t move one side of my body, talk or walk. I tested positive for lyme & co infections on the western blot test. I went to one holistic doctor for lyme treatment and she did get my lyme in remission but struggled with the co-infections. I got to another holistic doctor who was sooo much better! She helped me get in remission of all the rest of the infections, 5 years of treatment in total. I am shocked this holistic doc said you’d feel better in lyme treatment, I felt horrible haha and that was expected by the docs because it was so hard on my body. I feel better after treatment though, just my POTs flares super bad after I finished treatment. I wish you could see the last doc I saw she was so great. I have a laundry list of conditions too, for me it’s POTS, most likely endo, Crohns, allergies & asthma. For my POTS I did find two neurologist doctors, Dr. Constantini &
Dr. Derrick Lonsdale both now passed away, who used high doses of vitamin B1 for POTS. It is a bit complicated to do, because it needs to be done slowly and with lots of magnesium potassium, other b vitamins, CoQ10 etc. i felt pretty aweful the first month or so on the B1 but after a few months my POTS is 3/4 better!! I can function now most of the time & before I was nearly bedridden. I don’t know if you’ve heard of B1 (thiamine) for POTS but if you look up those two doctors names you’ll see lots of research they did! Dr Constantini wrote a book about it & the other doctor he co-wrote the book with, Dr. Chandler Marrs, is still alive & she does great interviews about thiamine for POTS. God bless you I so hope something helps you! Im also Catholic & knowing about redemptive suffering helps so much, just uniting my suffering to Our Lords suffering on the cross!
It’s a huge part of your experience, you shouldn’t be made feel guilty for that. I disagree so much with the comments about victimhood and identity, it just shows lack of insight how it really is to live this way.
I have eds, dysautonomie, small fiber neuropathy and severe Food intolerances, I went from being to able do everything to nothing to right now some things, I’m very thankful for the things I can do, and sometimes very frustrated with the things I can’t do, it’s a lonely position to be in even if you have great people around you. I still think Eds is a very likely common denominator because, but I can imagine you’ve had enough of other peoples opinions 😅
please don't let others police you about your identity. you don't need others to remind you you are a person. it's them who are obnoxious with this behaviour. as an autistic, I fully relate to how something that defines every aspect of your being is your identity. people see autism as a disorder and stigmatise it because it's different. to me, it's just my neurotype, not a label. I decide about my identity, and so do you, and that youtube user can gladly decide about their own, and their own only. I absolutely believe your every single diagnosis you've got from a medical doctor, although I do not think you have Lyme. these things are correlated genetically, they come in multiple chains. that youtuber wanting to dictate your videos like they've entered a restaurant whereas your videos are just meant to honestly reflect your life... well, that person is just funny and a tad ridiculous.
What having chronic illnesses boils down to is this, what works for one person will not work for somebody else. Every person has to find their own path. A lot of the time, even when something works, it may not work forever. You can keep trying or you can give up. You are a great warrior, but even warriors get tired and frustrated.
Chronic illness sucks, but it's reality.
You are not your illness, but it affects every aspect of your life. I have not become my illness, but I can't make a single decision without considering it.
If you are wallowing in self pity, it's probably because you need a release. What I do when I start wallowing, is to lean right into it. I have learned if I let myself wallow, I get over it faster. Trying not to wallow when I get overwhelmed makes it worse, it brings on fatigue, it makes the pain worse.
What you do, is give people a safe place to to know they're not alone. It's an important part of coping, knowing we're not alone. What you do is important. Thank you for doing it.
I actually like your channel more now that you show less forced positivity and real moments. I may be wrong and this might be controversial, but I feel like if someone’s chronic illness has not become their identity and all day struggle, then maybe it’s not affecting them as much as it is you or me. Like you, having a hobby is not really a good option. I do think that you have EDS because you have all that crazy skin stuff and that crazy pelvic floor situation. but I don’t know much about Lyme disease or parasites!
thank you
You have helped me❤
Hi Aimee, just curious how you're going with your eating plan. Are you carnivore again? Did you consider lion diet?
I know it's so hard Aimee because I completely understand that chronic illness or disability is something that you can't escape from that's exactly what I would tell people when they say "that's all you talk about now" or "that's all you focus on" but here's what I got to say to them... FIRST OF ALL yes we hate this and are suffering and did not ever want something like this BUT it is the current reality and it is (like you said) in every part of our lives so it is impossible to not talk about it and SECOND OF ALL... it gives us a voice and a hope to talk about it and to research and share on the internet! My parents would actually yell at me and tell me to stop searching on the internet and they told me i was a hypochondriac BUT GUESS WHAT i had to find out what was wrong with my dogonne self bc Drs were not taking me seriously I only had God and myself AND my prayers were answered i found the Drs who are helping me the most bc i kept researching and looking for answers! I think you are kinda like me in the aspect of we keep searching because we want to get better... BUT what if we take a break and make smaller goals... because one thing that i learned from all this is that it helps the most to take things day by day and it is easier to train yourself to think positive when you start small and realistically like for example I'm not trying to be negative or crush your hope but what if we don't ever get completely better? It breaks my heart the thought that i may never dance again and live the way i want to BUT i have to try my best to not think about that and to be thankful for what i am able to do right now day by day. And yes it is very hard not to think about the future but it is possible to escape the trap of chronic illness A LITTLE BIT at a time we cannot fully escape it but we don't have to let it win. And i can tell that you, like i was at one point, are very very exhausted by everything and that's very possibly making your symptoms worse. My suggestion is to literally take a break and focusing on YOU healing you and not the doctors. If something is helping you then yes still go to your appointments like your UCC and please pray about the other ones. I personally think EDS and associated cervical instability is something in the right direction to pursue in your case and not the lymes... but i would pray about it and pick one and then stop going to drs for a while and maybe even stop making videos for a while? Is there anything you can do now that you really enjoy and is calming for you? Try doing that instead even if physically you can only do it for a few minutes. If you think it is helping you to make your videos then keep doing it. I do not think this is "all in your head" as i have also been told over n over lol so since you mentioned it I'm sure ppl have told you that too 😡 however our mind is a very powerful thing and can either help or hurt our healing. I think both of us should also do some kind of CBT or brain retrain i know those programs have helped a lot of ppl. I hope this helps you some you are in my prayers dear 🙏
I never comment on youtube but I wanted you to know that I completely understand what you are going through. I appreciate you giving a voice to those of us who are suffering from chronic illness. I have had lupus for 30 years and was diagnosed with secondary adrenal insufficiency last year. I suffered for so long and the doctors couldn't figure out what was wrong until I was on the verge of an adrenal crisis. Afterwards I was still suffering and the doctors couldn't figure out why I wasn't getting better. It was starting to cause serious cognitive problems and I was still exhausted. I finally went to the Amen Clinic and also saw a functional medicine doctor. The brain spect scan showed I had serious issues going on with my brain, and I flunked the cognitive test at the age of 48. It showed I was having signs of early dementia but they believed there was a cause of it, most likely from hormone problem due to the adrenal insufficiency and they werent wrong. After further testing it showed I wasn't making any DHEA which is not uncommon in someone with secondary adrenal insufficiency and my endocrinologist should have known that but he kept ignoring me and not even following standard protocol for my condition. I remember even asking him if he was sure he checked all my hormones because I thought there was something else going on with them. Lacking that one hormone caused me to have serious memory issues, unbelievable muscle weakness and pain, balance issues, fatigue, sleep issues, etc. My daughter also has EDS, fibromyalgia and chronic fatigue syndrome, she also was tested and does not make it either and since she has been on it for a short time now I've already noticed a difference with her. They also put her on a much smaller dose of cortisol than I take when her cortisol levels drop and that has also helped with her fatigue. This is not a standard hormone they check just like they don't check cortisol and ACTH the other two hormones I don't make with my adrenal insufficiency. They can check cortisol and DHEA by blood or saliva but ACTH needs to be blood. I know you get alot of people telling you alot of things and offering you alot of advice but I wanted you to know about me and my daughter and our diagnosis because we both know what you are going through and it is rare. Your symptoms sound so much like ours. You always hear about cortisol but the truth is doctors dont check for it and most people worry about it being too high because of stress, no one talks about what happens if its too low, they dont know how serious it is. I wish we could give you a big hug, sending you lots of love and support!
I'm glad you were able to find a good doctor who was able to give you the answers and empower you with the knowledge of your health issue, so that you could help your daughter as well! Hopefully you're both receiving good treatment to improve quality of life.
On a side note, my doctors have regularly checked my ACTH whenever they've done routine endocrine blood panels on me. I've asked them about cortisol, but they mentioned that the most accurate test for that is a 24 hour urine collection.
Hi Marcy. I'm so sorry it took so long to find your adrenal deficiency. There are way to many drs who dismiss other symptoms as the affects of your previously diagnosed condition. I also have the less common tri factor your daughter has, it's so hard the compounding pain causes and fatigue is really hard to live with. I really feel for both of you. I hope that you're treatment is able to lessen the damage and keep your adrenal glands stable 💕
In the history of allopathic care no doctor has ever said anything worthwhile. Never listen to a patient. Why exactly never do that ? Why ever look at anyone's channel? Hey if yt has lead you down a primrose path. Doing something about it is fair game.
You rock!
Hi Aimee. I watch a lot of content creators and I rarely comment on videos but as a fellow chronic illness suferer I'm with you when you say that you can't take a break from it, because we really can't. What helped me a little bit in my journey was learning to adapt and adjust my expectations - at least for me, the reality is that I'll never be able to live the life I want... but I can still live a life, do the best that I can to improve every day and even still, some days, I hate that my life has to be this way. But embrassing this idea has helped to «soften the blow» a bit... I wish you the best of luck in your journey and that you can heal to live your best life, even if it's not on your terms
Wow, I'm so sorry your receiving such negativity. I have been watching your journey for years now and actually self-identify without many of your symtoms. It is true that most basic insurance doctors tests don't catch Lyme disease. I had the generic test done with a positive antibody but low tider. A Western medicine(insurance) doctor told me I didn't have it. Than a naturopathic Dr. told me you have the antibody. You have Lyme, now theres more accurate tests out there for Lyme and various tick diseases that are paid cash through a naturopathic. So absolutely you probably have Lyme. The thing is Aimee you may have Lyme and Fibromyalgia which lyme is a huge trigger for and Pots and EDS why because I too have many of these different illnesses and thats ok. Whether or not this naturopathic can heal you isn't the point because what you've gained is another piece of the puzzle. Eradicating Lyme is not an easy task if you have to try another naturopath later you will. You keep trying, don't give up and don't ever apologize for your health journey or what or how you share it. These people don't know what they're talking about. Ticks aren't super common in Southern California or the High-Desert, yet my property and my mothers at one point were both infiltrated and got infested. I love that your real about it and if someone wants to unsubscribe, that's fine, you keep doing you. I'm chronically ill post-Covid and there has been no answers for me and no treatments and it is hard and we are warriors to keep trying our best each day. You offer hope, comfort and most importantly ypu make us feel like we're not alone in this journey. Sending you good vibes and a big hug🤗
Not everything you try, will work. But your trying everything to solve the problem. But something did change as you said 7 years ago.
Anyone else having comments deleted or getting unsubscribed?
I've heard other creators complaining about this! I don't know why RUclips is unsubscribing people and deleting comments... :/
@@Aimee_EstherI just wanted to make sure. It happens on other channels as well.
I've noticed the safety algorithm becoming extremely sensitive after a certain event happened a week and a half ago. I know people who can't post anymore anywhere, and all they did was innocently use a key word in their comment that triggered the automated system to mistake it for a bad comment and automatically take action against them.
Hi Amiee. I hope your doing as well as possible. I just wanted to make a comment in regards to your h EDS possible diagnosis. I saw the video where you talked about your symptoms and went through the criteria. You did meet the criteria for hEDS and I also remembered the video about going through the criteria with your doctor and him agreeing that there is a very high possibility that you do have hEDS. I would see the genetasist that you have an appointment with to get their diagnosis as they are able to confirm the diagnosis. I wouldn't let a Dr who is not a specialist in connective tissue disorders tell you that you don't have it as it is not their speciality. It can be so overwhelming and confusing going through this. I have quite the list of diagnoses myself. I sometimes also gaslight myself into thinking that I may be exaggerating but I m not it's just very difficult to come to terms with having so many things going wrong that I think it can be the brains way of trying to cope with the situation. Your doing so well, I just wanted to encourage you to not give up on an EDS diagnosis. 🙂💕
First of all, you are right. When you live with an array of symptoms on a daily basis that prevent you from functioning as a "normal" human being, disabling you and leaving you with quality of life that is not the greatest, it most definitely 100% becomes a part of your identity. You are more than just your disabilities but your disabilities are definitely a part of you. Also, it is so incredibly frustrating to not have concrete answers. I find even with my diagnoses (which took years to get) of POTS, generalized hypermobility spectrum disorder and I was recently diagnosed with autism and ADHD, I will experience symptoms that throw me for a loop and I will want so much to figure out the "root cause" so that I can have a better understanding and implement the right treatments to feeling better again but I think a big problem is they don't actually talk about how disabling some of these things are when you get diagnosed. Like with POTS, how it's common to also have hypermobility or mast cell issues along with it...and if you look at ALL the symptoms POTS, hypermobility and mast cell causes, it's no wonder people with these conditions can barely function. They affect nearly every aspect of your bodily functions from acid reflux, indigestion, gastroparesis, rashes, hives, itching, swelling, anaphylaxis, tachycardia, low blood pressure, dizziness, fainting, diarrhea, severe constipation, prolapses, inability to regulate body temperature, joint pain, easy bruising, disabling fatigue, anxiety, sweating, dry mouth/eyes....it's overwhelming but I don't think it's adequately conveyed as being that disabling so we do mentally have a hard time wrapping our mind around how that could be the source of all we are feeling and going through. Also, there is wondering what the root cause is of it all. I have the hardest time because I had many issues in childhood but it wasn't until after I had kids that it really hit me hard and I look at my mom who struggled her entire life to get answers, she was called a hypochondriac by her family and doctors and experienced an array of disabiling symptoms. Her mental health was completely deteriorated. She was only diagnosed at the end of her life with an answer finally of mitochondrial disease and now the state has just dumped her off at some kind of "assisted living facility" that looks like it's straight out of a bad movie. The people running it I don't even think are nurses. They were drinking on the job. My mom was filthy and her hair wasn't washed in over 2 weeks, they literally just left her to die. It's out in the middle of nowhere and nobody was bringing her to doctors appointments. It is truly unfathomable, terrifying and disgusting how disabled people are viewed and treated by society. It is not just hypochondria, don’t ever let anyone make you think or feel that way. If it was them living with the same symptoms daily, best believe they’d be trying to figure it out too. Human beings are just ignorant to what they don’t know or can’t understand or haven’t experienced. Also, I really appreciate you are not on the “toxic positivity “ bad wagon 🙄 nothing is more depressing than feeling you have to mask in order to make people comfortable. You can usually tell people that are struggling internally by their toxic positivity mindset. I love that you are realistic and not afraid to share how you really feel and what you’re really going through. It helps people feel less alone, it’s relatable, it actually is inspiring. Thank you for being real.
I’m think you should just be you and be raw no matter what mood you are in. If someone wants just one side of you then they are not here for you just themselves and I personally feel like if you are a personal vlog then your viewers should expect to get all of you not just one side. I connect to all the things you share because I live this life like you do. Let’s put it this way. If you’re only positive people will start complaining about your toxic positivity. You literally can’t win just be who you are and share what you wanna share. I support all of that. ❤
Why tf do abelists always think we ENJOY this??? I really wanna know. Do they think we bankrupt ourselves and lose relationships/jobs/hobbies for the "pity"? That honestly makes my blood boil. you do not deserve that. we do not deserve that. Dont let the bastards get you down. Love you ❤
EXACTLY like I really LOVE that my RUclips channel where I posted my dance videos that I was so passionate about changed to me talking about and trying to figure out my sudden disability lol. It makes me sick to my stomach that people actually think we do this for attention and pity. Who in the world would want this??!! We just want answers and for people to understand us and to believe us
From where you know you have lyme desease?. Which tests did you give
Why does someone feel the need to say those negative things to you? Anyone who suffers with like symptoms knows and understands you. If they don’t like what you say stop watching.
Chronic Illness??? Trust me as a FIBROWARRIOR, I'm at a point that i hardly talk to people on phone. This is becos my condition is so bad that even a basic conversation can trigger my symptoms. Should i talk about the forgetfulness, or the fatigue that refuses to leave? Or the way i cannot stop pretending as if nothing is wrong with me. Many of those i talk with dont even know how much strength it takes for me just to show up on them. Aimee.. Trust me i understand ur struggle. It's only in cases of CHRONIC ILLNESSES doctors sould ask u how u think they can help you, just to excuse their HELPLESSNESS over the conditions... What a life we live
I can only tell you that you're not alone. I've felt that way for 10 years.
Which illnesess do you have
Please don't let people shake you Aimee, like the one that started "I don't wanna offend you but.....". That just really means that you know what you've written isn't good, but if you write that like a disclaimer at the start, it makes it ok. No. How do you expect people to be positive, if you can't find it in yourself to be positive, commenter.
They clearly don't know what it's like to live with things like that. That really isn't how you come across at all Aimee. You do so amazing with what you are living with, and what you share. You handled how you responded to that so well 💙💙💙🤗🤗🤗🤗 I understand where you're coming from here.
I hope you feel better about it all soon 💙💙💙 but keep going, you're doing incredibly! Especially the times where you might not feel like you are!
It just sucks, really sorry you're going through this. It feels like we have to vet out dr's and naturopaths and it's just so exhausting, as if surviving chronic illness wasn't hard enough. The accuracy of tests from functional medicine is questionable on a bunch of tests and then dr's won't run any tests because on paper the basics are fine therefore you're fine. It's so frustrating and discouraging. Trusting your gut is important with every practitioner , usually if you feel something's off it probably is. The dr's and naturopaths who claim that they've never had "hard cases" and you're an exception are either very new to treating people or it's a massive red flag. The more you know about the body the more you realise how little we actually know , how we are biased we can get and need to keep that in mind when reviewing medical studies. I don't want to add more unsolicited advice, but finding a specialist for complex cases may be more helpful. ( Maybe look at the patreon UNRAVELED: Understanding Complex Illness with Drs. Kaufman and Ruhoy)
Whatever you do you will get hate for being too positive and glamorising illness or being too negative etc. Wishing you all the best.
No way can something as complicated as FM have a simple solution ? Wrong sorry its gotta be that way.
It's so frustrating when many of the symptoms tend to overlap with other illnesses. You are so valid in what you are feeling. ❤
Iwas in a similar position untill about 20yrs ago or so & it wasn't fun at all. I spent many of my waking hours trying to figure it all out.
About 20yrs ago I stopped the meds (that were also making me sick & weak) & I decided to only focus on my diet & water intake (started purifying water for everything, ice too) to help my migraines. There were so many foods I was eating that I had no idea were hurting me. I still deal with chronic pain & fatigue & have since also broken my back in 3 places buuuuut my migraines are much better so that's the win I'll take. I now only have migraines or sinus headaches a few times per week YAY!!
I stopped going to the doctors trying to figure all of the rest of it out. There came a point where me trying to wrap my head around everything was actually causing me more stress & anxiety which was contributing to the excessive amounts of migraine & sick days.
When I stopped searching for the right diagnosis & focused on the migraines only I began feeling better with my mental health. I began consuming a lot of guided meditation videos while I slept & self help content while awake. Do I still hurt, yup. Do I still search for foods that reduce inflammation, of course. But I am no longer looking for that elusive diagnosis that I felt for so long would heal me. I now spend my days focused on spending time doing what brings me joy & fills my life with all the good feelings because I need my mental health to be in top shape a lot more than I need that diagnosis.
I hope you are able to find peace. ❤
You have mold exposure, aka CIRS. 17 years of CFS and POTS here, trust me. Might not be the overnight cure you're hoping for, but it'll be a huge relief for you to address it.
I understand your frustration! I am also struggling with similar challenges. I have mitochondrial disease and I have other symptoms that are not explained by that illness and doctors cannot figure out what it is which is frustrating because how do you fight something you don't know what it is. It is also emotionally exhausting to have an illness that isn't very visible to people who don't know you very well. My doctor mixes western medicine with natural treatments as well. I'm sorry there are people who feel the need to share every contrary opinion they have. Please know that is not how I and several others feel! Your cleaning with chronic illness videos especially have been a game changer for me! If it helps that unnecessary negative comments is a common problem for RUclips content creators. I don't mean constructive comments that point out something that could be better but unhelpful ones that basically are that the channel is not for them or it's not their preference. I am often annoyed by those comments because they clog up the fun or interesting comments. The most ironic place this happens is on COMEDY channels! If it's not their type of humor they feel the need to write "not funny" or something like that. If a person doesn't get a certain joke or they prefer a different type of humor just go watch that. No one cares. I don't watch every video on any channel but I enjoy watching yours and some other channels when I have the time. Your health is your priority though so please don't feel obligated to push through if you're not feeling well but also know many people enjoy and benefit from your videos when you feel up to doing them 😊
I feel the same way. I was. 10000% able bodied growing up then hit 26 and my body went to crap with chronic illnesses
Bingo. We can't escape. We may be distracted for short chunks of time but they're short lived. Reality hits hard, over and over and over. In addition to a horrifying list of illnesses I have chronic insomnia which nearly does me in. My tank is empty before my day begins. Like you, tears are a regular thing. I get my hopes up and they often crash. People have no idea how fortunate they are to sit, stand, swim, lie down normally, socialize, bend over, do stairs...without weighing pros and cons and analyzing whether tomorrow's pain will be worth it. My list of things I can do is shrinking and it's often all I can do to merely exist. When I think of my future, I sometimes panic.
But moments of joy are extra sweet and gratitude is crucial. We moved continents to be where I can be immersed in nature and feel better mentally. Being away from family is awfully hard but I need to do this for my mental health.
You're more encouraging to us than you know. God bless and keep you. I pray you will find answers so you can proceed and live life with continued grace.
I think that it amazes me when I hear someone put their feelings into words and sentences. It’s not a skill that everyone has. 😀
Well, like you I also was confused as fuck but I'm going to the autoinmune route right now. At the beginning of the year I also had thought I had lyme disease because I tested positive but then I made a bigger study that actually searches for the bacteria in the blood (not only the antibiodies) and I didn't have any strand of more than 20 type of lyme bacteria. So I think it's a false positive. In the end I tested positive for alpha 1 and beta 2 adrenergic antibodies which 90% of POTs patients have so I think it's more of an autoinmune issue. Specially since my family also has sarcoidosis which is like the cousin disease to lupus. My current theory is that these antibodies reduce adrenaline and that maybe that is what causing allergies and skin issues. And the sarcoids from sarcoidosis are made of t-cells and macrophages. Singer Halsey who has pots said she has a t-cell disorder and has sent money to lupus and leukemia research? Doesn't there seem to be a link? And then in Germany they are curing people with t-cell teraphy. Sarcoidosis doesn't have any test right now but it ususally has high ACE receptors and covid bonds to ACE receptors. At the moment I want to see what they give me to treat the high adrenergic receptors and will comment here if something works. Theories keep changing don't worry. The world was flat in the past and now it's round😂
I feel this so much… I’ve felt skeptical about naturopath/functional practitioners I see too because they usually just focus on one thing and don’t look at the individual. And it does get expensive sometimes without much progress… but at the same time they have been better than regular doctors I’ve encountered so far. For Lyme/EDS there is some conversation about which causes which/which is a “root cause.” They are connected and often found together.It’s so hard because we do have to do so much research by ourselves. Keep on sharing… lots of us are on a similar journey. Sometimes these things help us put the puzzle pieces together. I was told to take Allimed for Lyme but it does make me sick too. My body doesn’t do well with detoxes.
Lyme and EDS are not connected at all, although they can present with similar symptoms and can be confused with one another.
EDS is a genetic mutation acquired prenatally, causing the body to make weak or defective collagen. There are currently 13 different types of EDS, which affect various genes and can affect different areas of the body.
Lyme disease is an infection caused by the Borrelia burgdorferi bacteria, caused by the bite of the black-legged tick, which is found primarily in the Northeast and upper Midwest of the United States, with about 95% of Lyme cases occurring in 14 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin.
@@Dulcimerist I understand where both come from… the connection I’m talking about is the amount of people who have been diagnosed with both… and I’ve seen those familiar with the conditions discussing whether the genetic component of EDS predisposes someone to getting a chronic Lyme infection (Lyme often targets connective tissue), or if the Lyme infection itself causes EDS symptoms to get much worse and noticeable. I have a nephew diagnosed with both, although he tested positive for Lyme first, then developed hypermobility issues.
@@tanglewoodhomestead EDS symptoms tend to get worse or aggravated with infections, surgeries, physical trauma, muscle atrophy, pregnancy, etc. Often it's one of those events which make the EDS signs and symptoms more pronounced or debilitating so that the EDS is finally detected and diagnosed.
Its hard anuf doctors not believing us so these people should know better i try to stay positive and do doctor joe dispenzer medications and healing and natural stuff where i can but no sorry we should support each other even if we talk and exspres our pain and frustrations in different ways we still need to not make someone els that does it different feel like crap just like when you walk out the doctors so sending you lots of love and healing from England bless ya heart you do Amazing with your kids your husband is a rare young man for support as well shows you love each other very much im 56 and not worked for last 3 years with fibro and rheumatoid arthritis and after nearly 39 years together find it hard ❤dont take it in just like those docs we have to shake off when they sneek into our minds more people appreciate you than not sweet heart ❤️ love to you and your family Xx
I'm struggling soon much right now, I'm dealing with bad depression I feel like I'm in a hole. Plus dealing with chronic issues
I like your videos
Oh girl, please don't go on your diet. I understand that you are tired of looking for a solution and that you believe until the last moment that what you are doing now is the right thing. You're focusing on the wrong things. You spend your energy in places where you don't have to. Don't try to find a name for what's wrong with you, because you've already put a lot of effort into it and the result is always the same. Please understand that it takes years to cure such a chronic disease.
Don't believe that eating meat and literally drinking oil and butter will cure you. Common sense simply has to evaluate such an idea as wrong. The only thing that will happen is that you will only intensify your illness. You slow down your metabolism, and build your body from fat, which increases your stiffness, headaches, and takes you further from the path to health.
I'm sorry for writing to you directly like this, I don't mean it badly. You are a very nice and good person :), but really already very hurt.
Aimee, the only real, healing and sustainable diet is the HCLF diet or starch diet, which has millions of success stories, including mine. I won't lie to you, in your case it will already be a treatment, maybe even for a year or more.
To Aimee or anyone that can answer...
Is EDS something "commonly" misdiagnosed? I guess I just mean... is that something seen enough to be a concern?
Most often, people who have EDS are misdiagnosed with something else, since most doctors aren't familiar with EDS or have outdated information or misnomers about EDS.
Since the EDS diagnostic criteria establish the presence of hypermobility and anomalies with connective tissue, someone who does get misdiagnosed with EDS would tend to have one of the rarer connective tissue disorders, such as Marfan or Loeys-Dietz.
@Dulcimerist do those two not show up on the genetic tests? I don't recall. And yeah I was just strictly speaking of being misdiagnosed WITH eds. I don't believe I've ever encountered that.
@@Dulcimerist but thank you
@@topaz2440 The most common type of EDS, hypermobile type, has not had its gene identified. 12 other types of EDS have had their genes identified, and there are genetic tests for those less common and rarer types. It's likely that hypermobile type will have multiple genes identified, splitting it into additional types of EDS.
Hypermobile EDS is diagnosed with clinical observation with several sections of criteria, and there's a section in it to eliminate differential diagnoses which would present with similar signs and symptoms.
Lyme disease doesn't have a genetic test, since it's an infection from a very specific species/strain of bacteria that's transmitted by a very specific species of tick that lives primarily in the region and states that I listed earlier. It's acquired at the time of a bite by an infected tick.
@Dulcimerist yes, I understand that about hEDS and Lyme disease. That wasn't my question, but I appreciate your thorough answer.
I can’t fix you….i can’t fix myself.
But you're refusing having a board certified nuerolgist locate Tarlov cyst who's treatment negates fibromyalgia symptoms totally without equivocation.
Doing dishes is doing us great harm.
if you want to know why you have all this diseases, I recommend Jarred Younger. he talks about the genetic background, current research and clinical tests, and the immune mechanisms underlying the many symptoms of autoimmune diseases. sometimes there are no easy yes or no, this or that answers. I feel your frustration might come from the fact that you would like one, and who could blame you, with that much fatigue and so many symptoms. but there is hope: it's just crucial that you place it in the hands of people who follow evidence and understand the complexity of these illnesses.
I can certify that daily magnesium, vit. D (check the levels), vit. B, 300 mg of vit. C, olive tea and good quality quercetine have made me feel better, and these are backed by science. I am also popping a dao pill before my last meal - not so much evidence for that one, but I can feel it reduces the itching. I have POTS and MCAS, just like you do. I feel that addressing your MCAS (which is very hard to understand and can have varied/diffuse symptoms) could improve how you feel. I've noticed you don't really talk much about it. while POTS is about physics, MCAS is about chemistry, and mast cells mediate inflammation in our body. I recommend reddit if you'd like to dig into it.
You may want to check with knowledgeable medical advisers that are Worldly on your topic matter. is it cool when i use them word like "um try get advice NON american" about lyme Aimee
Hey Aimee. My husband is also dealing with chronic illness and chronic pain. He's undiagnosed and has been dealing with it for nearly 20 years. Your thoughts in this video sound very familiar to me. The comment shared at 10:55 was incredibly frustrating to see/hear. Part of why I love your content is because it's real. It's not excessively cheery (nor should it be), but it's not doom and gloom. You are sharing your journey, and that's what we're here for. I hope that you get your diagnoses. I hope you find something that helps, even if it's not a cure. And I hope that it's soon and cheap! But until then, just keep doing your best. Thanks for the updates. 🫂