Missed Signs of My EDS, POTS, MALS
2019 ж. 22 Қаз.
18 179 Рет қаралды
Looking back, I can see all the missed signs that pointed to Ehlers-Danlos Syndrome, POTS, MALS, and more. In this video, I share the things I remember that would have led to an earlier diagnosis had they not been ignored, minimized, disbelieved, and misdiagnosed. My hope is that this will help others from going 35 years without a diagnosis. Please let me know in the comments if you found this video helpful! Thanks for watching!
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Talking to other Zebras is amazing. I find that the imposter syndrom feelings seem to be a common thread for almost everyone I've met. It's awful to feel like you're crazy.
It sure is. 😔 I'm glad you've found the zebra community. We're here for you! ❤️ 🦓 ❤️
Thanks for sharing your story. Nobody ever fought for me, either. I have no contact with my family. I wasn’t diagnosed with EDS and POTS until I fought for myself at age 50. Nobody else truly understands.
This happens mostly with females, they immediately believe it’s in our minds.
Yep. :(
I'm a male, and they thought my hEDS was all in my head, too. :(
@@Dulcimerist I do think it might be worse for males. Men are expected to buck up and deal, and many choose to, or are even forced to in order to socially fit. I’m female and I can state (because I did this myself)- this is a bad way of going about things because they will see you as being fine when really all that time you were putting forth a maximum effort and barely eking by. When it gets too much, and you are in a horrific state, they will then expect you to ‘’buck up’’ because they see you as if nothings going on. They will not understand or believe how bad it is for you because you weren’t forthcoming with vulnerable honesty. I abhor telling people how sick I feel because of the connotation of ‘’lazy, boring, weak, worthless’- take-your-pick label. (It’s also terrifying to be vulnerable physically among a crowd) I’m female doing this. I imagine it’s MUCH worse for men.
Not really. When my husband was young he got sick and even got a fever and YET doctor said he is simmulating. How can you simulate a really high fever for over 2 months i dont even know. He got a crohns and lucky him that an old surgion checked his stuff and right in that moment be was hospitalised for an emergency operation!
patients and doctors need to join in a class action against insurance companies. its been a very long time since doctors were allowed to treat patients as they see fit and the statistics are reflective of it’s time for us to all stop sitting back and saying “it’s too big of a problem for little old me” and join forces.
This is so sad because I have all of these issues and I’ve been told constantly that I’m “milking it” or that it’s “all in my head” or that I have a “low pain tolerance” I’ve been to several doctors and they just take tests and they come back “normal” or slightly off and they pass them on. Later to find out that they actually found something but didn’t tell me. This is so frustrating I’m about at the point of giving up and just living with it
I'm so sorry you're going through this, but don't give up! There are doctors out there who are knowledgeable in these rare diseases (well, POTS and EDS are actually not rare). You just have to keep looking until you find them. The various Facebook groups are super helpful for finding recommended physicians.
It's so re assuring to hear that others are having the same issues with drs and getting diagnosis, even tho it does not help us all with getting drs to listen but its reassuring none the less to know. Best of luck to u.
20yo male here. Had intense leg cramps even since I was little, we always thought it was "growing pains." Fast forward to 2020, I've been diagnosed with h-EDS and can barely digest food anymore, regularly dislocate my shoulders, get tunnel vision when I stand up, and have constant joint pain. Your story, especially the uncooperative nature of doctors, is really helping me feel a little less alone during this time. My parents always told me the joint pain was because I didn't exercise enough, but I would never exercise because of the pain so I got quite chubby. I went from 200lbs to 145lbs in less than a year. I get a lot of compliments now, but it's not all good feels since I didn't choose to lose this weight, and I'm still getting lighter. Even though I look like I'm in the best shape I've ever been in, this is probably my lowest point yet as far as my health goes. I'm not sure what happens next. We still have to start looking into treatment/management independently, but the doctors have been very insistent about there being no treatment or cure and basically just told me to deal with it and don't put too much stress on my joints. They gave me my 11 minutes in the exam room, took some x-rays, said there were no fractures, and sent me home. We weren't looking for fractures... obviously. I take ibuprofen to manage the joint pain, but ibuprofen now exacerbates the digestive tract issues, so I'm stuck between the joint pain, or the abdominal pain, sometimes both no matter what I take. Our symptoms aren't exactly the same since EDS manifests differently, but I was just wondering if you have any tips for me to help manage the symptoms/lessen the damage I'm doing to my joints. It's gotten exponentially worse this year, as if 2020 wasn't already hard enough. I barely have the energy to get out of bed because of the pain, so I'm willing to try just about anything at this point.
I totally felt the comments about doctors sending you home telling you your fine because one test came back negative 😑
It's because of people who are open about their disabilities and conditions like this that I decided to try to see a doctor again. I started trying when I was like 13 or 14 and was just repeatedly told similar things to what you were. I grew up in a tiny town with pretty useless doctors (there were 2 and one of them literally didn't believe my friend that his arm was broken - it was). I moved out a year ago to a bigger area and have since found out I'm autistic, which put a life-changing answer to so much of my life. Now, I'm looking for the answer to my body. My symptoms are almost uncanny in resemblance to EDS, although I have no diagnosis of any kind yet (because I spent my whole life being told to just exercise and lose weight, even though losing 35kg didn't help AT ALL). Finally found the doctor I'm seeing currently. I had a list of my main symptoms that I experience day-to-day and one of the very first things she mentioned was EDS, which was incredibly impressive to me. She's testing me for the testable conditions that it could possibly be, though - just to be sure, and will then go down the list ruling out everything to find the condition that fits the most (which I feel will in fact be EDS). I'm very excited to get a diagnosis. I've had previous doctors who would have (and previously have) accused me of wanting diagnosis because I WANT to be sick or think it's cool or want attention. But the right one understands I'm excited because it's validation for symptoms I've lived with my whole life. I had more to add to this but now I'm really tired and forgot what I was saying. But thanks. These videos mean a lot to me. I wouldn't know anything about myself without people sharing their stories.
I'm so glad my video was able to help you. I hope you find the answers you're looking for. ❤️❤️❤️
wow, I could not have expressed it better, I'm 66 and not yet disgnosed and falling through every crack in our broken healthcare system. Thank you for this video. God bless
I too grew up with a lot of "weird stuff" that my parents dismissed. I can count on 1 hand how many time I was taken to a doctor...and my parents always made a big deal about the hassle, and time, and money. And those times were for legit obvious things like pink eye. I'm 41 now so my childhood was a long time ago...before cell phones and barely internet in high school, so I had no other people to talk to but my parents. My pain? Just normal growing pains. Fatigue? Naw I'm a normal lazy kid. Many of the things you said in the video I very much relate to. I am still fighting for diagnoses.
In tears. Your story is my story. Thank you so much for sharing ❤️
I'm so glad you found the video encouraging. That's why I make them; so those of us in the chronic illness community don't feel so alone.
I needed to hear this. I stopped going to the doctor in my 20s . I am now 36.
I wish my doctor would say that to me one day, I am 42. been disabled for 12 years, but starting to realise I was sick my whole life, what a shocker, I had no idea. How many times have I said oh when .......happens n it is like....., and nobody knows what I am talking about. Bigest slowest face palm in the world
I just got diagnosed with POTS, Dysautonomia and HEDS. I’ve been feeling super similar symptoms (minus MALS) for YEARS and I never knew what was wrong with me. My parents would always tell me it’s because I don’t exercise and that I should exercise more. But when I would exercise the pain would always get worse and I’d sprain SOMETHING every single time. I’ve gone to the ER so many times thinking I broke something when it was only a sprain. And now even after my diagnosis I’m still told “you’re making yourself feel this way and the pain worse on purpose” and “you’re being dramatic, stop being so dramatic”. It’s so disheartening and hurtful bc ppl have no clue what I’m going through. I’m so glad I have an answer now, and I just subscribed to you too! Thank you so much for sharing your story. 💛
We must all be vocal about this terrible discrimination against us by the doctors and people in power around us. You have been through so many more years of suffering and attempted murder than I have, and people NEED to KNOW.
I have EDS, hypermobility type, and it’s extremely validating watching this. So many doctors told me I was making up the pain or that it was growing pains or all in my head somehow. I even had one doctor tell me to read The Secret, which is now my least favorite book ever, still makes me so angry to this day like 15 years later. My mom was always more determined than I was to figure out what was going on, which was helpful because I really think I would’ve given up before I finally found a doctor who was willing to say “I don’t know enough about this, go talk to a specialist.” And when that specialist ran out of tests to run, he sent me to another specialist. This specialist was at Cornell and was finally determined to figure it out, definitely put in the most time eliminating other possibilities, but it was the geneticist she referred me to who finally diagnosed me with EDS. Mind you, I had watched a news special about a guy with EDS and started crying hysterically YEARS before the doctors figured it out. I even remember telling my chiropractor at the time, who was a great guy and did really help a lot as opposed to other chiropractors who royally screwed me, and his response was, “Well, let’s not go self-diagnosing ourself now...” Oh, yeah, then I might actually have answers. Right? Because it’s not even like my diagnosis meant I found the cure, either, no. I was referred to pain management, which I turned down. Long story extremely shortened, I’m five years in recovery now so that clearly didn’t last, but alas... The moral of the story is that doctors suck and you need to be your own advocate. Also, the EDS community needs to unify so big pharma can actually start working on some treatments. Let’s smarten up, guys.
Angie, my heart goes to you. As a healthcare provider myself, that has just been diagnosed with EDS, POTS and MACS, I feel part of pain...the aweful feeling of being misdiagnosed and mistreated for depression and anxiety (if I was a man it would be a different story), but luckily, I had very supportive parents growing up...Your story hit me because I just can't imagine having parents like yours. You should write a book and lecture during PTA meetings....your video should punch a lot of people in the guts... specially doctors in this country who barely look you in the eyes. I had my one angel doctor who also said it wasn't in my head ... The one doctor at the ED who touched my hands and told me to find a POTS specialist, after more than a dozen failed from 911, to ED, to hospital stay. When my second psychiatrist told me to drop all of my meds and look into rare diseases, I knew it was time to seek various opinions....and boom...EDS, POTS, and possibly more. Your🙏💓 suffering will not be wasted. I am really sorry for your aweful parents and lack of support at school.😌🥺
I would tell my mother, “it feels like my hip is popping out of the socket!!!” since I knew the words, which was quite young as I have ASD and a large vocabulary. She didn’t listen- ever, not once. I spent way too much time in a jolly jumper which is absolutely horrible for hyper mobile peeps. Bouncing was such a rewarding stim though!
Thank you. I'm 36, and just realizing that a lot of things I thought were normal, are actually not normal and are actually symptoms. Especially joints popping out of place. It happens to both my mom and my sister, so its always been our normal. I didnt realize that not everyone's joints pop and dislocate from doing regular everyday things.
I'm so sorry that you're going through this, too, but thankful you're getting answers! ❤️
EDS is a dominant gene(s), my kids both show signs of it already. I have POTs and 'probable' hEDS still going thru the diagnostic process but my cardiologist is convinced, as is my physio and podiatrist. It has taken me til 31 to get answers but thankfully those answers will help my kids
THANK YOU! I had a feeling I was remembering it incorrectly. 😊 I hope you get complete answers soon! ❤️
@@AngelaHepp as long as it helps my kids itll be all good
@@AngelaHepp There are a couple of the rarer types of EDS that are recessive, so that might be why you wondered if you were remembering incorrectly. Hypermobile type is dominant.
I have a completely different condition, nowhere near the risks, but with enough constant pain to completely ruin my life. (And the fact I can't tilt my head to the side should have been a pretty obvious sign). ....but my father spent years telling me it was nothing. He's actually one of the outwardly nicest people you will ever meet, but he preferred to pretend nothing was wrong and watch me beg and suffer than to stress himself with helping me get to a doctor. If anyone ever minimizes this stuff, you need to never forget it. I ended up studying psychology later, and I'm confident the man is a covert narcissist....which really just stems from my father having an incredible (and pathological) aversion to anything that could even slightly perturb his self-worth. ...and while I do forgive him for it, my dad will never get to know his grandchildren because of how he handled it. I don't care if it's because he was purposely cruel or just too scared to confront it, I don't want my kids to pick up on that trait. I won't even risk it.
I'm so sorry you know this pain, too.
Thank you for sharing. It's so amazing to hear other stories like mine. We have so much in common, including being told we are lying/crazy/lazy. These videos make me feel less alone
Girl the quality is great!!! 🤪☺️
Oh. My. Goodness. Your story sounds exactly like mine! The pain up under the rib cage when running, jumping, and horseback riding, suffering in silence because of hurtful shameful accusations...Thank you for sharing this and for raising your voice for those who can't 💖🦓🥄
I'm so sorry you've had to go through this, too. 😔💔
Wow 😮. Pain under the ribs 😞. Heart issues since I was a kid. Horrible leg pains. Sprained ankles ,sprained wrists, sick all the time.
Im convinced my “anxiety” is more than just anxiety... I see my doctor today with a very long list of symptoms I hope she believes me..
Do you have EDS? If so, look up the webinar "When is Anxiety Not Anxiety: Psychiatric Misdiagnoses in EDS" by Dr. Alan Pocinki. He is one of the leading EDS and dysautonomia researchers, and is affiliated with George Washington University.
kzhead.info/sun/gM6oZ9aceKhro6s/bejne.htmlsi=-qkVSOK0RxhoA8wg
Your parents sound as terrible as mine were with health issues. I got beaten once because I passed out at school in 2nd grade but when my mom came to pick me up I was fine. She told my dad when he got home from work that I faked being sick to be sent home and he yanked me up and spanked me over and over and over again. I was always so scared to call home from school with my stomach pain and such.
this is n encouraging vid. I just got diagnosed with MALS this week and looking for answers
Thank you for sharing! My personal experience living with eds is very similar to yours, except my Mum is a nurse. I'm still healing from the trauma caused, so I don't feel I could be so well spoken especially on video. Thank you again!!
I'm so sorry for you
I am so sorry you went through all of that! I have been through very similar experiences. I was sick for a long time and didn't even realize it because no one else acknowledged my symptoms. Turns out that I have porphyria and dystonia. Also looking into MCAS/EDS/POTS and maybe MALS. Also asthma that went undiagnosed for so long it caused me to have COPD. Family and teachers overlooked a lot of my health problems growing up but really I fault the medical system for not being more proactive. I inherited everything I have and I can see how my family members have suffered too. Doctors have been so negligent and disrespectful and allowed me to fall into disability while telling me my tests are all normal. I totally agree they should listen more to the patient and physically examine you instead of just running tests. Doctors love to blame any unexplained symptoms on anxiety. In school I got labelled with depression or anorexia. I always felt judged for being too weak and tried to push my body really hard to prove myself. I was never really able to work full time and I had to push myself hard just to work a part time job. Now I cannot work at all. One doctor told me my problems were caused by "deep seated anxiety" and accused me of trying to commit disability fraud. Most doctors do not have enough medical knowledge to evaluate genetic disorders or anatomical abnormalities. They want evidence but they don't run the right tests or they misinterpret test results. Genetic testing can be very flawed. Some conditions like porphyria and MCAS are very hard to get evidence of in lab tests. The medical system operates like a prosecutor trying to prove the patient's guilt by ruling out conditions, instead of ruling in what makes the most sense based on your clinical presentation. They would rather let us suffer until we need major intervention like surgery or cancer treatment. I figured out my porphyria years ago and tried to just avoid the medical system altogether. I wish I could go back to working and just manage my own attacks like I did before and stay away from doctors. The pain can be horrific but it is worse to experience gaslighting and character assasination from doctors.
I identify with so much of your story. I am still searching for answers. I only recently heard about EDS and it fits so many of my problems. I have been fighting to figure out whats going on with me for the last 3 years and have also been told, its in my head, its just anxiety, its just depression, your fine. I grew up being told to just "brush off" the pain I was fine. And I did that most of my life but these past few years have been so painful i have finally started searching for an answer because I'm not fine. Something is wrong.
I finished watching this in tears, thanks so much for sharing your story, I just saw my childhood in yours... I also remember the pain on the side of my ribs after excercising, and looking around and nobody else felt the pain I was feeling, and I just thought I was weak... I just got my EDS diagnosis, sometimes I feel pain after eating, and I am trying to figure out what it is, I went to about 5 gastro Drs, I also ha e mild gastritis, they always says its just gastritis, but the pain are diferent, I can tell is in a different spot too... So now I have a diretion to go, thanks so much! 🙏🏻
I'm so sorry you've gone through this, too. It's heartbreaking.
I started having symptoms a few years ago. So many to even count, I feel like I would have a new one so often and some would stick all the time. It started getting worse and I was fatigued all the time, brain fog, head pressure random pains, headaches nausea, dizziness, lightheadedness, cold hands and feet, random rashes usually on my hands, arms, legs and chest, I also have chest pain and pressure within this year. There's soo many more symptoms. Every doctor I've been to said that it's just anxiety. I knew I had anxiety since I was little but I knew it was something else. I feel like they didn't believe me. So after 6 years or more I finally got diagnosed a few days ago with pots. I brought it up to the doctor who did my stress test and he said I do have it. I did my own research and knew I had this immediately. So many doctors don't know about it which baffles me. Makes you feel so horrible when they tell you it's nothing.
I relate so much to your struggles with doctors and not knowing your symptoms aren't normal. And people not listening. I've been struggling for a diagnosis for 15 years now. I wasn't taken seriously and gave up on doctors for a while. The best they could come up with was appendicitis, growing pains, and anemia (even though my iron levels where fine and taking supplements didn't help). I've recently discovered dysautonomia and after lots of research and some at home testing I think I have pots, chronic migraine, fibro (still need to rule out other possibilities), and CFS, and some other more minor types of dysautonomia. I'm surprised no doctor in all my tests and symptoms have mentioned any of this. The only diagnosis I got was fainting spells when I was 8. Which are the least of my problems because I faint less than once per year, but that's what they focused on cause it was visible. And now that I think about it they didn't even look at me or listen. Just walked in and said we'll you fainted so you must have fainting spells. Any way I'm ready to start trying for a diagnosis again and am collecting information and making a symptom journal to show my doctor. Sorry for the long post, it just seems like doctors aren't prepared to handle complex chronic cases. It's awful the number of people who have been let down by the medical system. I'm glad people like you are on KZhead spreading awareness because I might have never learned about pots and as a result dysautonomia otherwise. So Thank you for making videos like this:)
Oooh the horse riding thing! I could ONLY sit the trot! Every time I tried to post it felt like my knees were going to dislocate and I would get berated for "dropping" and getting out of rhythm. Bendy bodies are so weird! These days my thumbs are the worst. 😒
Your not alone. As a kid I was told I couldn't do this or that because "you break to easy" per my uncle. My brothers would play with action figures, I would not. Even at 8 my thumbs would start hurting very quick. I have never been diagnosed with anything. I tried years ago but gave up. I had joint degenerative disease by time I was 20. Arthritis in every point but my elbows. My right hip and left knee needs to be replaced at 33 years old. I feel your pain.
I have POTs and gastroparesis, they think my fatigue is ridiculous that I can’t actually be that tired or sleep that much. That it’s being lazy and wasting my life away. I wish I could make them understand, what I go through for just a second. Similar experience no eds but life in terms of pain is been on the upswing. Especially with my hips, ankles. I often wonder if the carpal tunnel and cubits tunnel isn’t also somehow Eds. I am so tired of going to doctors but I want to know why I am 30 and my body is getting more painful. I used to be a gymnast, rode my bike everywhere. Now I can’t even hold my dogs leash walk him as he is strong and my hands are very weak. I want to know did I really have a stroke all those years ago. Most of all I really want to know I am not being ridiculous, I am not crazy, that there is a real reason for the pain weakness, everything. I have been thinking about a wheel chair to help with mobility and symptoms when I go out and about. I thought maybe it could help my quality of life. Be able to be more present and enjoy outings more. I am embarrassed and afraid to ask. I really don’t want the judgment from my parents. I am super close to them but there words can really hurt, make me feel, like I’m being ridiculous, or over dramatic, and invalidate anything in a second. I love them to pieces but they can make me feel pathetic. They don’t get it. Therapist says it’s from a place of anxiety. I don’t how to navigate chronic illness with all of the emotions that come with it and the responses from the ones you love most. Being Less of support and more of a suck it up. I don’t how in the world to have a life, the life I have dreamed for myself with chronic illness. It feels like always gets in the way. Has anyone figured that out? If you have, let me know.
Have they tried you on Mestinon to treat your POTS, gastroparesis, and fatigue? EDS researchers have repurposed this older medication to treat EDS, since it can treat multiple EDS issues with a single medication. It's been a miracle drug to treat several of my EDS issues.
Thank you so much!
I have a small tricupsid regurgitation, PoTs, chiari, expiratory tachycardia, heart arrhythmias, MALS (brand new diagnosis), many spinal issues, scoliosis, and I am suspecting EDS now. I grew up very similar! My mother couldn’t understand why I was sleeping so often, I wouldn’t play with the other kids when I was younger, etc. Her, as well as 13 different doctors told me I was depressed and started meds for depression at 13. I was hospitalized for “appendicitis” as well. Twice.... haha. I didn’t have appendicitis of course. I was able to break the cycle of my upbringing, and went to college and graduated as a nurse (having to drop out three times from my sicknesses but STILL graduated with honors!). Unfortunately I believe everything happens for a reason, and now I have filed for disability but without the knowledge that I accrued for ten years in the healthcare field, I can’t imagine where I’d be. Both of my parents coped with drugs and alcohol and my father succumbed to his addiction, which is probably where I would’ve ended up as well. I’m glad I advocated for myself so hard like you have. I am 25. I see the vascular surgeon on the 4th! We are very very similar my love. Thank you for sharing this♥️ I’d love to hear more from you! The more advice I could get, the better. And you are like my identical zebra phenotype 😃
Yes same as me. My pain started off as rib pain I was told it’s gall bladder attack had scan gall bladder is healthy. Liver healthy kidneys healthy!! They checked my lungs. Healthy. They gave up on me. Last year I saw a doctor who listened to me. She has hypermobility EDS and recognised my symptoms I finally got diagnosed with hypermobility eds and seeing a rheumatologist soon. I must add I suffer migraines, ibs, dislocated knees, bladder condition and anxiety and depression and back pain urgh it’s horrible but told it’s related to hypermobility EDS
Great video! I'm 53 with Pots/dysautanomia. My Dr also thinks EDS but testing is expensive. I remember all the symptoms as a child and my Mother would say ur fine. I learned to push myself hard and ignore the pain....well until I couldnt anymore. I dont advise that. Probably made me worse. I'm glad so many people are talking about it. Raising awareness 😊
I'm so sorry. 😔 I still battle those instincts to hide how I feel and just push through, and my health and especially emotional/mental health has suffered so much because of it.
Testing for the most common type of EDS (hypermobile type) doesn't cost anything, since no genetic test exists for it. It's diagnosed by going through this diagnostic checklist: www.ehlers-danlos.com/heds-diagnostic-checklist/ Have your doctors run you through that test yet?
@@Dulcimerist well, my Dr wants to do genetic testing because my uterus ruptured during childbirth. How would someone know what type they have without genetic testing?
I relate so much !!!
Thank you so much! I'm emailing this video to my doctor who does exactly what you describe.
I'm so glad you enjoyed the video. I hope it helps you get more answers! ❤️
*** I did find your video so helpful! :) Thank you Beautiful! I am awaiting diagnosis. I highly suspect EDS & POTS. I could pretty much finish your sentences, lol.....Thank you for sharing.
I'm so sorry you're going through this, too, but glad you're finding answers. Thanks for watching!
❤️❤️❤️ Can’t put into words how helpful and relatable this was. I’m so glad you had that experience with the doctor who said the medical system failed you. Failed us. Continues to do so. Plus the violin example is straight out of my childhood and I never realized since my EDS diagnosis!
I'm so glad you enjoyed the video and found it helpful. I'm sorry you're suffering from this too, but I'm glad you've found the online zebra community. We're here to support eachother!
Thank you so much for posting this video! You communicate very clear and effectively! I am newly diagnosed with MALS. Not sure if anything else is evident. I was told since childhood that I too had a “ heart murmur” that has vanished!
Thanks for watching! Glad you enjoyed the video. 😊
Thanks to videos like yours, I was able to be diagnosed at 25 with hEDS only 6 months after truly researching into my disorder. I also had many health "issues" early on in life and am so happy to finally be at a diagnosis point so early on. Hopefully I can prevent further damage with this information and even improve my current status. Thank you again!
You're welcome! I'm so glad you found answers earlier than many of us. 😊 Spreading awareness works! ❤️ Thanks for the encouragement!
@@AngelaHepp your message of persistence and CONFIDENCE in the knowledge of your own body was really important to a quick diagnosis. I was in and out of therapy and on prescriptions as a child. That led me to realizing I had to be my strongest advocate above just one doctor's word. They're only human like us, and they need pushback in order to improve the science.
Yes, I've been using CBD and MMJ for a long time. I haven't found much of any benefit from the MMJ, but the CBD does definitely help keep my pain somewhat more manageable. I have a video on it (used to have two, but KZhead deleted one because they're in bed with Big Pharma): kzhead.info/sun/YNOxqtCqkKaboKc/bejne.html
I hate how you basically hear this kind of stuff from everyone who has a chronic illness. It's also weird how similar our experiences are xD I also couldn't run and gave up playing the violin. I'm 19, almost 20 and only now fighting for a diagnosis because I'm too disabled to keep up with other people. Most of the time I can't even leave my house and I haven't been able to work for the past 7 months (so I was living off of my savings that were meant for more fun things than staying alive, lol) Thankfully I think I finally have doctors who want to help me. Fingers crossed though
I am very sorry to hear that you suffered a very painful childhood and indeed young adult life. I think that you are being very positive, in trying to use your experince to help others. I have found your videos on eyesight improvement very helpful and even though previously had been advised about Bates eye exercises, I had not practised and had just gone to the opticians. So I would like to say thank you for your explaination, as it got me to improve my eyesight. Thanks.
Thank you for watching, and I'm so happy to hear you found my videos helpful!
@@AngelaHepp Beacause of your videos I found about EndMyopia blog and Jake Steiner, And now I'm aware much more about my eyesight and how to get back to 20/20. Thank you so much Angie😊.
Agree with every word that you said & will never ignore any type of pain of my & people around me. Importantly if the doc says you are fine & the pain still last long then I will take charge & try to dig the internet , figuring out Is it normal?... Will try to find correct answer for such questions. I loved your spirit & the way you are fighting the situations. Keep it up 👍 These bad situations will fade away one day , just wait for it. Praying for your health & happyness. We all love you and please take care.
Thank you for watching! I'm glad you enjoyed the video. 😊
Thank you Angie for putting this video up there for us and people who have these symptoms. God Bless you💞👈
You're most welcome. I just hope it helps someone and maybe answers some questions.
@@AngelaHepp You did an amazing job. Hope there will someone who connects the dots and find out about what going through. I pray for you and courageous prople like you👉💕💕💕💕💕💕💕💕💕💕💕
Thank you so much. That is my hope!
I have multiple sclerosis since 2003 now I was just diagnosed with pots syndrome 3 weeks ago unbelievable..
I have been diagnosed with EDS and P..O.T.S. I was ALWAYS sick when I was a little girl. But, I got worse 15 years ago. Your life sounds alot like mine. I live day by day. But, still hoping I'll get better...im at the point to where I can not do anything I have always loved to do. Thank you for sharing your story 🙏🏼
I'm so sorry you're experiencing this, too. 😢 I'm thankful for this community where we can support eachother and at least know that we're not alone. ❤️
@@AngelaHepp I thank you so much. I did one video on this but, I didn't explain everything as well as you did. Just told what I go through and what it's like living with this. Bless you and I hope more people see your videos. No medicine has helped me except Medical CBD oil 🙏🏼💙
I’ve got Eds... took them 17 years to diagnose it. I was taken to the doctors for pain in all my joints from the age of 2. I was told “nothing wrong” “could be something like arthritis” and they didn’t think to check if I was hyper mobile. I went to a private physio for pain and she took one look and me and was like your hyper mobile. She did all the tests and I scored 9/9. I alway had bladder issues as well as a kid where they put it down to having a strong bladder which meant that all the tests weren’t done until 3 years ago where it showed my bladder could comfortable hold 1.5 litres. They’ve continued tests and I’m now bound to a catheter for life and can barely walk but the only thing that helps is collagen supplements. If I didn’t have them I’d be in a wheelchair
I teared up at the end. About a month ago my symptoms just worsened and I had to rush to the hospital twice this year now bc my heart was 180bpm, I was about to faint, I got red eyed but everything else was normal, my EKG and blood pressure so they just sent me home after giving me a sedative... I'm trying to get a diagnosis since I was 13 and the doctors just said it was going to pass "it's an age thing, it will go away" I'm 23 now and it's always the same. I'm hoping that the next doctor appointment I have this month will be successful and the doc may listen to me bc the worst thing is my own family tell me is all in my head and I'm anxious or depressed, I want attention like I'm having fun being sick all the time. I've lost count how many times I've been called lazy or weak. I gave up so many things I liked doing, like University 2 years ago bc I couldn't stay awake in class, there was no way I tried to stay up taking notes but I failed and slept while I was writing and I would almost instantly wake up and everything was all unreadable...I couldn't take the bus bc the heat would make me sick and I ended up sleeping... like playing guitar cuz I sublocated my elbow so many times and my wrists and the worst was when my fingers sublocated or paralysed and I couldn't move one or two fingers... I can't even play videogames now cuz I can't sit for more than 20min without feeling like my ribs are squeezing me and I can't hold the controller cuz it's too heavy... Your story hit me in a very personal level, mainly childhood, like in my birthday when I was 5 I was trying to play football with my friends and I almost fainted and everybody started screaming my name I sat down and we ended up playing videogame bc I couldn't stand up... So this rambling could keep going, but I really just wanna say thank you for sharing your story, it's important to have someone that believes you, it's very unfair and unfortunate when not even your family believes you, it's just sad.
It sure is. I just had major surgery and had no family (besides my husband) to be there with me or help with recovery. We're on our own. And yet I know that my mom watches my KZhead channel and knows what I'm going through. So sad and selfish.
Hi Angie, I'm here via EndMyopia although as a homeschool mum I have an interest in some of your other topics as well. Thanks for your excellent videos! You came to mind yesterday as I was watching one of my favourite KZhead channels, Aussie pastor Mark Hemans of Encounter Ministries. He ministered in Perth recently and prayed for a young lady who had POTS. His prayer for her and her subsequent healing testimony are recorded. I thought you may like to watch it (Highlights Perth, Australia) and some of his other videos while you are recovering in hospital. They are tremendously faith building. Mark is holding miracle meetings in six US states March through May this year - California, Arizona, Nashville, Kansas, Indiana and Ohio. His website, Encounter Ministries, has the details. I can personally recommend having been immediately and completely healed of a damaged lung (10 years of weakness, infections, coughing fits, sleep deprivation) after he prayed for me in August last year, praise Jesus. Blessings to you and your lovely family. Penny
Thank you for thinking of me.
Your story is similar to Mikhaila Peterson’s, look her up, she had a total hip and ankle replacement by age 17, was arthritic since age 3. She also dealt with depression and anxiety and was on meds up until the end of college. Eventually she found she can not tolerate plant foods, sounds extreme but she no longer has any pain or depression and doesn’t have to be on meds.
I have all your symptoms started when I was 10 years old until today I am 52 years old I have severe pain when I lay down on bed the pain like heart problem , left arm , shoulder and back , shortness of breath, when I sit the pain gradually disappears. all doctors said same things nothing, I am fine, seeking attention. Now I am getting close to 60 years old without having one night of deep sleeping, a night without pain. I was desperate and take sleeping pills, the pain forced me and awake. Now MALS one of the things they are found , hope this is it. But I am not thin !
Thanks for this. I have fought for my daughter for over a decade. Finally we're getting a gastroparesis, pots, dysautonomia and hyper mobility diagnosis. It's a lot to take in. I've got a lot of anger over the parade of doctors I took her to. Now to investigate mals
I'm SO glad to hear you're finally getting answers! 🙌🙌🙌
Sorry you went through that. I experienced similar issues, and probably wouldn't be alive today if my mom hadn't fought for me.
Thank you so much for sharing. My story is so similar but never had the right investigations. I've been diagnosed with FND when my Dr wanted to look for ms.. I don't have ms symptoms, I have eds symptoms but because my MRI came back as not having ms they diagnosed me with FND that lists every symptom known to man as functional. But I have 8 other health conditions and autoimmune disorder. 😑 Still fighting after being told it was all caused by childhood truama even though all the way through from birth I've had the same symptoms.
I do not have a diagnosis yet. Going to the doctor tomorrow and I'm so worried she won't listen to me. Please wish me luck.
I hope you get answers. 💜💜💜
@@AngelaHepp She said that EDS people don't get dizziness and all-over pain and diagnosed me with fibromyalgia. Thoughts?
she also wants me to take cymbalta for fibromyalgia.
I can't comment on whether or not you have fibromyalgia, as it is common for people with EDS to also have fibromyalgia. However, it is absolutely NOT TRUE that EDS does not cause all-over pain. And dysautonomia/POTS is a VERY common comorbidity with EDS, and that absolutely causes dizziness. Did she do the 2017 Ehlers Danlos Diagnostic Criteria checklist with you? If not, find a different doctor. You can google "2017 Ehlers Danlos diagnostic criteria" and print out the pdf checklist to take to your next appointment. If you meet the qualifications per that checklist, you have EDS. Period. People without EDS will not meet the requirements of that checklist.
Firstly I’m sorry you have to go through all this. I too have Chronic issues. But when I go to DR’S to see if I have Gastroparesis, as soon as they hear I get anxiety they say the head and gut works together. I know it does with my anxiety but my symptoms go beyond the anxiety. I also have CFS, Chronic daily migraines/headaches, definitely Orthostatic Intolerance but we have said POTS (not formally) but firstly I struggle to drink enough fluids but if I stand after sitting for a while my bp may drop to 80/48 for example then my heart rate jumps up to 140 plus. Standing up for too long or in the one place in a shopping cue I can feel the symptoms come in. I start getting breathless like you do before you pass out and have to start swaying or shifting weight from one side to the other. The frustrating thing with DR’S is a lot of them have a hard time listening, like actually listening to their patients. I’ve dealt with so many arrogant Dr’s. We/us know ourselves best. We know when something is not right. I feel sick most of the time and over the years of having issues, tests for things that come back normal for other stuff not mentioned above and it’s frustrating that my husband thinks I’m lazy physically and mentally and I’m not trying to help myself. It’s so upsetting because I often can’t go hang the washing out because I struggle to stand for too long and summer, my gosh, I don’t sweat and I simply can’t handle the heat. I live in Australia but where I live temperature wise would be any hotter than areas in the US. Anyway there’s my little rant. I’ve only just found you on here so I will be watching all your videos. Your a beautiful woman too. Thanks for telling everyone your story through these videos.
Very interesting video
Thank you for this video 😭 I was just diagnosed a month ago after two years of searching for answers. I have always had trouble with playing ukulele (the only stringed instrument I can afford) because of my hypermobile fingers. I have a friend who plays guitar, and he, along with others, would always repeat to me that I just need to push through and practice. But playing was painful!! I'm not crazy!!! It's not my fault! Thank you so much!!! This also gives me hope, as I now know through research that there exist EDS musicians who play with splints, specific hand PT exercises, and the like. Maybe I can finally play my ukulele the proper way, and not like the kid in "August Rush" (on his lap, like a piano you pluck and press) 😭❤
I'm so sorry you're experiencing what was my life until very recently. In fact, I was on palliative care and about to go on hospice last June. But now I'm completely healed and no longer identify with any of my diagnoses. I'm off the TPN and IV fluids, I no longer need a wheelchair or mobility aids, my port was removed, and I have a better quality of life than I've ever had. I share a lot more about it on my Instagram, instagram.com/_havenhomestead_, if you want to learn more. I'm not selling anything, just FYI. 😉 I just want more people to learn about what healed me so they can heal, too. And so many are, every single day. 😊
Well done! Very informative. You're beautiful.
Thank you, my Love.
Going to see my dermatologist on the 31st of March to get my collagen tested and to test for all other forms of EDS. My rheumatologist refered me to see him because i passed hypermoblility criteria and I have dysautonomia symptoms and gastric dismotility.
I hope you find the answers you need! ❤️ ❤️ ❤️
EDS, MCAS, POTs and finally found the culprit May Thurner - these doctors have no idea how common compression syndromes are in Zebras.
Yep. 🫤 I ended up with 100% occlusion of the left renal vein and had a kidney auto-transplant in 2021.
I'm really loving your channel! I've been trying to find a reason why myself and one of my daughters is always ill. Drs had accused me of being pregnant as a 14yo virgin because there's no way I could be that tired without being pregnant, they dismissed my daughter's dislocated thumb (it was in a constant state of dislocation with no movement from the dislocation for 8 years), she always complained and cried from her knees hurting and always talks about how tired she is. Oh yeah, she also has acute asthma and has had a collapsed lung and almost 10 pneumonia infections and she's just a preteen. I never knew that pain under ribs and in center of chest was something other than a symptom of running. I'm now wondering if there's something more than gastroparesis going on with me as I have that same pain you're describing. My echo came back normal 2 months ago but I also have a heart murmur. I was so defeated after the normal echo results. I can't tell you how many times I've been injured from rolling my ankles. I was holding a 2-lb weight in my hand2 days ago and just moved my arm to my hip. I now can't move my arm at all and the pain I was in was so severe I was in tears (I don't cry much. Didn't even cry when my Achilles' tendon ruptured.) That's how I found your channel - I was looking for info on kratom - a friend with hEDS and 75 other related illnesses gave me some but I don't know much about it. So thankful I found your channel. I'm on the (slow) road to a diagnosis, now 39yo. Only been diagnosed with gastroparesis and IBS. Trying to get POTS and hEDS diagnosed but my Dr is less than interested. Just says my issues are low BP related but it raises upon standing, along with my HR. Trying to learn a lot before going in to a geneticist. I'm so tired of wasting money on failed Dr appointments. My mom did pay attention and kept taking me in, but she was threatened with getting reported for maunchousen by proxy (I probably spelled that wrong) so she stopped searching for answers for me. She's super supportive and helping me look into family history but it's hard. Seems it's from her side of the family as they have mitral valve prolapse, degenerative disc disease, and what appears to be undiagnosed POTS with a ton of us. Hypermobility and autism also run in the family but no EDS diagnoses. Long road. I just want answers.
Wow. What a story. I'm so sorry you and your daughter have had to go through that for so long. With every video like this, and every post on social media, more awareness is being raised for these issues, so hopefully more doctors will become aware and people won't go their whole lives searching for diagnoses and being dismissed and abused. In so glad you've continued to search. Have you joined any of the EDS or MALS Facebook groups? That's a good way to find knowledgeable physician recommendations.
@@AngelaHepp No, I haven't joined those but I did join one for POTS. Someone there gave me a chart to do a poor man's TTT at home, which I did several times and at different times during different days - it shows I fit the criteria for POTS with each test. I'm also very symptomatic and have nearly every symptom I've heard comes with POTS. I'm still trying to figure out about the hEDS. My friend with it is certain I have it because of my dislocations and pain and easily being injured. But I have doubts that it may just be HSD. I sure hope they find the hEDS gene soon!
@@Laundrey1 I just sent my blood off to the HEDGE project last week - they're gathering DNA from over 1000 people who have hEDS, and will hopefully find the gene or genes. Have they run you through the hEDS checklist to diagnose you with that yet? www.ehlers-danlos.com/heds-diagnostic-checklist/ Also, have they tried you on Mestinon to treat both your POTS and gastroparesis?
Pretty sure I have pots, possibly other for co-morbidities. Been doing poor man tilt tests all day and my heart rate nearly doubled. Have a appointment on Tuesday to get a referral for a cardiologist or a neurologist. Here’s hoping they can help me with proper treatment now. I’m 31 and been trying to figure this out my entire life. They thought I was hypoglycemic and had anxiety but I knew it was more because of all the chest and leg pains
You are really beautiful, also your energy is beautiful!
Thank you so much! ❤️
My dad was the fun dad and never knew anything about our health & my Mom has always been about Tough Love. I remember 1 time after being kicked 1" above my knee cap by a horse and she said "Well your not bleeding so your fine"!! No crutches & no trip to the doctor. I struggled with my weight and when I graduated HS I was so happy cuz I finally weighed 100lbs. I was, well actually still am, a majorly clutz and got called "Skinny Jinny". Playing Volleyball was the worst cuz when the ball would hit my forearms it felt like someone took a giant rubber band to my arms and I would cry. I actually Just got diagnosed with hEDS & cEDS and I am 43 y/o. My Mom refused to tell me anything about her health or my grandparents so I had to get the info from her brother, my uncle. Come to find out there are many of us in our family who have possible EDS & my grandmother (my moms mom) and I have almost identical symptoms. Anyway I also have MCAS and possibly POTS. Thank you for your vlog. I am finding it to be very informative feeling not so alone!!! God Bless you!!
I'm so sorry you had to go so long before you found answers. I have no contact with my family, so I have no idea who all has EDS, but I highly suspect my mom and grandmother had it. But what's important is that I know now, so I can know better how to watch for it in my kids and protect them as much as possible. 😊
I was diagnosed with pots but now I'm wondering if something else is going on too. I have felt like when I eat I get punched in the gut, but I thought it was just my pots til now, thank you, it is something I'm going to bring up with my doctor next time I go to see them
I hope you get answers! ❤️❤️❤️
Do you have gastroparesis or other digestive dysmotility issues? I have that and POTS from my EDS. My doctor put me on Mestinon to treat both the POTS and digestive issues, and it works really well for me. Hoping you get some answers so you can feel better soon!
I was 37 before I was diagnosed
I’m 19 and I haven’t had any surgeries yet but I think you just explained my life. For me though it was dancing and theatre not horses. But childhood to today this is what I am struggling with. I am going to a new doctor soon bc I believe I have been misdiagnosed. I have many conditions that all seem to not be connected. My doctor recently just diagnosed me with fibromyalgia but soemthing isn’t adding up and ye more research I do on EDS the more it makes sense. I also have a high heart rate and palpitations and we’re looking into seeing if I have POTs. I started having palpitations as a child and they put me on XANAX. AS A 12 YR OLD For “panic disorder”. I’m not having it. I also get the awful “side stitch” and I’m the clumsiest person I know. I have to use a wheel chair and braces for dislocations and still haven’t been diagnosed with soemthing that makes sense. Today I’m having an awful pain day and my ankle popped out again and I’m just sitting on my floor crying watching these videos praying that someone believes me and tests me and figures something out so I can go back to college.
I'm so sorry you're suffering from these awful diseases. I pray you find some things to help ease your symptoms.
Xanax can act as a muscle relaxant and increase the risk of subluxations and dislocations in people who have EDS. Sorry you've had to go through this. I had similar experiences during my EDS journey. Hopefully you can find a doctor who can treat your apparent POTS with the proper medications - such as a beta blocker, Clonidine, Guanfacine, Ivabradine, or Mestinon. Each one works in a different way, and it might take some time to find what works best for you.
I've been struggling since my sons pregnant/birth. My plecenta abducted, c section. I live with chronic pain. I'm bed ridden. My Drs say my tests are good, I'm "okay". I started to doubt myself. I don't feel okay. I feel LIFELESS.
I'm so sorry. 😢 💔 I understand the feeling of hopelessness. I pray you get answers soon. Keep fighting! 💪❤️
So sorry you're going through this. Do you have EDS? EDS symptoms often worsen during and after pregnancy, since some of the pregnancy hormones exacerbate the stretchiness of collagen in the body and worsen joint instability.
I have clEDS that caused a spontaneous CSF leak and last year I contracted bacterial meningitis and it caused compartment syndrome and rhabdomyolysis repeatedly and they refused to perform an LP on me for 6 months and then of course it looked normal and they wrote all kinds of horrible things about me in my chart that "she thinks her body is special and does things others don't do " "she attributes not dying from meningitis in two weeks to her EDS "(I actually suggested it was because the leak was acting like an LP lowering the bacterial load and they just stared at me like morons. I told them that was ok, I'd rather die than be treated by this group of people that trained monkeys could do a better job than. Now all my joints and bones are infected and the tissue around them.. idk where these people learned "that everyone dies in two weeks or your body just kicks it out" but that's exactly what the neurologist told me. And they thought I sounded crazy. I began experiencing loss of consciousness due to the dysautonomia last year and they kept me in the cardiac unit for 5 days and tried taking me off of the medications that took me and my Drs 20 years to get right and they kept asking me if I wanted to be in the hospital and they did absolutely nothing for the 5 days except confirm the dysphagia and other things I already knew. They don't understand and they don't care to.
I'm so sorry you've experienced such awful medical trauma. Sadly, most of us have. So much so that we avoid seeking care when we really should. So many hundreds of hours I chose to suffer tremendous agony rather than subject myself to the abuse of the medical system.
grrrrrrr - so sorry dealing with same issues in my family....doctors are falling behind
Unfortunately this often runs in families, so they probably repeated a lot of what was either said to them or they heard said. So you're just over doing it, that was said to me so much. I was falling into my teens, I used to trip on nothing. My parents were trying to help, they just didn't know what to do. I had the SR of a 60 year old woman when I was 12/13 years old. But I grew up in canada, so the whole costing us money thing wasn't an issue. I used to have a ton of nausea any time I ate, and pain, especially even when I drank water. I'll have to do some research about what MALS is, I'm curious now. I've learned to do my own research and how to read and make sense of medical study reports. I did yard work for a few hours a little over a week ago, it took me almost a whole week to recover from it. The pain attack I had after just raking my yard was horrific. All my usual pain relief options failed completely. Nothing worked. The next day I was just a potato all day.
❤
Now I know what It’s going on with me all my life. Always sitting at the school, always tired, always trying to save some energy, insomnia because of the pain. And also quit guitar because of the pain and because of the pain over my skin pressing the strings (I don’t know the name of that in English). Now I know why I didn’t use to kick the ball playing soccer, the ball use to kick me (that’s kind of funny. Better now laught then cry) because I was soo wick and my feet joint was so lose to kick the ball really strong and straight. And I also use to run just for 45 minutes, I thought it was breathing problems or heart problems, but I didn’t have any energy to going on playing. My friends use to run for 90 minutes and start to get tired in the second half of the soccer game. I use to get tired in 15 minutes but I always have been a fighter and use to go to the very end of the first half (that’s so funny, I want to cry so much, so I’m laughting a lot to remember to be a fighter to hang just 45 minutes hahahah, ou my God haahah!). Thank you so much because it was hard to fig it out if I really got EDS because I also have a stretch skin, hands, fingers and etc. I also have a lot of pain in my back, my shoulders lose then self all the time, and I have been working out for 18 years in pain. Now I know how that helped me, because I can do many things as take a lot of weight in the market and anything, but it cause a lot of pain and still causing a lot of pain. But I fell happy because maybe that make me walk til this days... finishing: thank you again for everything! You salve my life, the Lord showed me the way thru Jesus thru your life! Thank you!
I'm so sorry you're suffering, too, but thankful you're finding some answers. Yes, same here, the strings hurt my fingers so bad, and I never could develop callouses like everyone else did! I also wondered why/how people kicked balls, because it always felt like all my toes were being broken, even with shoes on! I always just thought I was weak.
Angie Hepp exactly! Callouses were impossible for me too because of the soft skin and because of the pain. They never last or get strong enough... well, I’m happy to share that, also happy because finally somebody answered and happy to find out why I’m passing by all this. The true set us free! Thank you again and God bless you and your family!
Angie Hepp another thing that I just remember: when I start to work out I use to lift like 16 kilos in cheast press. My friends use to do double and we had same age, almost the same weight. Now, after 18 years I can lift a lot of weight in pain with a lot of fight because work out always was my happiness (but my heart start to do the same as yours when you get up when I take this weights). So I gave my best for it. But, I’m in pain because of the gym and thinking about how to leave my pain without lose my gains... again: thank you! Hope we can win this everyday!
I hope you adress your possible deficincies too such as : magnesium,zinc, selenium etf. I was deficient severly in iodine n magnesium. I myself suffer from a nephro ptosis(wondering kindey) that could cause quite a fatigue. I do go to a stractuaral integration therapy and when my kidney drops down therapiest is able to reset that connective tissue back. But i cant run, lift heavy weight,bending over should be very controled. I also had a back pain that probably was because of that kidney issue and magnesium,iodone dificiencies, my body burns so much thrue minerals. I try to eat my minerals via food, i buy oysters in capsules for zinc and other minerals, i take mussels for a joint's pain, salmon oil for a vit D and inflamation rediction. Im still quite in pain on rainy days probably due to mold, and oxolates growing. I dont an EDS but my MTFKR is mutated and deficiencies did ruin my life! Doctors are useless!
Yes, I did all of that for over a decade before I was diagnosed. Nothing I have is lifestyle/diet-related. Just genetics.
@@AngelaHepp i know you cant change it. I myself live in Pennsylvania and during winter suffer due to SAD. But i have incorporated more magnesium, and other things and I feel much better, but sadly im still not good on rainy days and solar flares days because we are so close to the North Pole. Also look into solar flares because they so much affect me, i get more pain in my body,i have headacches and i feel nausua, my digestion isnt that great. I get even a REM sleeping disorder on this days. My heartbeat is irregular too.
My pain management doctor has been my condition worse with diazepam. It has exaggerated all the symptoms I already had with the chronic pain the crushing in my back and legs. Now I can't absorb any food. I used to be a 175 lb on my first back surgery in 18. Second back surgery in 22. I was 150. Now I'm 122 lb. In my heart's going crazy because of the diazepam. Please don't let any of them put you on antidepressants. I might have lived another 10 years I won't survive this.
Even when I was on palliative care and about to go on hospice for end-of-life comfort care, I never let them put me on those awful poisons. Thankfully I'm healed now and living my best life!
So I would roll my ankles and the would get sprained all the time just walking on flat surfaces. I would be called clumsy. I would have to wrap them or get casts because sometimes it would happen till where bones had issues (later diagnosed osteopenia). Well I ended up needing full reconstructive surgery (had no ligaments left) and had 2 yrs recovery to learn how to walk again when I was in my 20s. I have many other diagnoses and other symptoms not diagnosed. I recently learned of EDS. When reading I was like I can check of all these symptoms. Now I just need to find a doctor who cares enough to get to the bottoms of this for a diagnosis. Preferably a specialist as my regular MD won’t do anything.
It sounds like you need to get a new primary doctor. That's what I had to do in order to get proper medical care. You have the power to fire your doctor for nonperformance and hire a new one who will do their job.
I was just dx with POTS and EDS at 41. How do you get past all the anger of lifetime of being told its in your head
First, I would just like to say that I'm sorry you had to hear all of those invalidations for so many years. That wasn't fair to you and was downright disrespectful. Second, I want to say that when I saw this video, I knew that I should watch it. I have been experiencing symptoms of so many different diseases since forever and my family and the doctors are no help at all. At some point, I just decided that suffering in pain was better than hearing my guardian tell me that I'm faking it. But then things started getting worse and I knew it was time to speak up. Turns out, I have ulcerative colitis which is why I can't eat anything and have colon pain. Now if only I could get my doctors to take my joint pain, fatigue, sluggish digestive system, and many other symptoms seriously. Anyway, seeing this video tells me that I shouldn't give up and should keep searching for answers because I'm the one who has to deal with the pain, not other people. They can't tell me what I am or am not feeling and I won't let them shut me down anymore.
Thank you so much for watching and I truly hope you find more answers and start getting some relief. Hugs! ❤️
Very similar to my experience. I'm 47 and just in the last 2 months I was diagnosed w autism, then incidentally a month later my new doc suspected hEDs, but he only ordered an mri on my back and neck to check for any changes to my arthritis. A week ago I went and they sent me to the ER. Turns out I have a 9mm chiari malformation and 13mm syrinx. Now have to consult with neurosurgeon next week for decompression surgery. I suffered a great deal because it's like being inadvertently gaslit your whole life. Whatever natural depressive nature I may have had was compounded by being called a liar. I've never forgotten at age 7 I developed what turned out to be a severe uti. I had to be taken by ambulance. The dr said it was because I must be holding it because I didn't want to stop playing, but like you I was more of a watcher/sitter usually alone and no prob going when I felt like I had to and I tild him I didn't feel like I had to go. He turned to my Mom and straight up said "She's lying. She just wants to play." No, interoception issues and enlarge bladder, for which a nurse scolded me when hospitalized w hyperemesis during pregnancy and they were measuring urine between each go, so I'd ring for them. I was on an IV and woke from a nap. Overflowed that hat measure they put to catch it. I dig the nurse and she yells at me "We keep saying between every single urination and you even overflowed it!" I'm like "that's only 1 go" 😆 She was shocked and said I must have a huge bladder. This is in 1991. I wonder if that would make more drs the eds these days? 2021 for reference. Anyways I've thought over a lot I probably could have avoided in my life, like have 2 rounds of 3 times a week for 12 weeks for "treatment" of my "severe recurrent refractory major depression". Doubt electric shock is good for week collagen, but they had good intent. They didn't treat me like norhing was wrong physically. And actually one shrink was taken by a pain management doc to the board trying to take his license for trying to help my pain when med drs acted like I was an addict because pain meds don't work on me. Son calls me Anti-Narcotic Girl and says it's a super power lol. I've decided to let go of remembering things like that. Misunderstandings that caused me physical and enotional pain and hurt that I took out on myself through self injury and multiple nearly successful suicide attempts until as an agnostic at best, nightmare antagonist against Chritians more often, I cried out for the truth even if it was Jesus to help me stop trying to die at 28, but that's another story. Point beibg even through I don't hold grudges, I've held hurt in me for being misunderstood or being needy, or hyperbolic. But those folks didn't call me a liar or weren't dismissive, all that hurt dissolves away. The ones who called me liar or were dismissive I held in a slightly different categoy cause I've always hated lies and loved truth, not to say I've never lied but I try to be honest, to my hurt often. They didn't hurt me because of ignorance or musunderstanding, they falsely accused me of being a liar and often their treatments or lack there of was a result of that. Still no grudge but against them I feel vindicated, so whatever resentment that may have been lurking meling away. 40 yrs later still telling the uti doc story 😆.
@tamara holloway Thank you so much for sharing. Your story is very important and helpful.
Girl I have been saying I feel like I got punched in the stomach for years and am now being checked out for MALS
I hope you get answers soon! ❤️
What doctor did you go to? I finally got a diagnosis this past couple of months of hEDS and dysautonomia (and heart murmur and TIAs, but now I wonder if it actually is a heart murmur) and the doctor I saw also sat me down and said that it was real, not all in my head and he was sad and sorry that so many doctors missed everything for years. His name is Dr. Hasan Abdallah at Children's Heart Institute in Herndon, VA.
That's so encouraging isn't it? To finally be validated. I've seen dozens of doctors, was there a particular one you were asking about?
Thanks Angie. I have 3 children. My youngest son has autism and clearly has hypermobility as his bones flex in unusual ways. My other son has joint and muscle pains.. and my daughter has had unexplained internal pains for years in her abdomen. I am starting to think it could be EDS. I also have joint pains and problems that come and go..always been told it was anxiety. Do you know the genetics side of things.
Hi Debra! Check out my first video on my genetic disorder. I go through more of the diagnostic criteria there, so you might find it helpful for yourself and your kids. I hope you find answers! ❤️
@@AngelaHepp thank you. I will have a look
How did you get on with the whole hip healing thing? Mine are shot and also have cam morphology and dysplasia. Don't know what I'm going to do.
I ended up with a total hip replacement. My hip is fine now.
I was called lazy and faking when I was a girl by my mom and my first husband. At 56 with long covid they found the MALS and I wonder if I never got long covid covid brain and copd stage three also with heart arrhythmia that’s all from covid but if they ever would have found the MALS it was found because they thought it was my heart on ct scan by accident but it is severe
Please help me i have EDS and POTS and I run away from my family 12 years ago because they didn't belive me
I was wondering if your heart mumur has been cleared yet??!!
Unfortunately, no. 😔 The doctors can't seem to agree on what it even is. Some say it's a bruit from the MALS compression, others say it's a PFO or PDA, and nothing has showed up on echos or MRIs so far. My cardiologist is reluctant to do a bubble study, because "I don't want to give you a stroke." But he did say "that is a significant murmur and can't be ignored." I am going back next month for a dozen more tests. My vascular surgeon is still looking at imaging to determine if the MALS compression is significant enough for surgery, and if so, and I end up having the surgery and the "murmur" goes away, then we will know it was a bruit all along.
‘’Get up! GET UP! YOU'RE JUST LAZY!” 😥 Do they even realize, the psychiatric damage they do when they assume like that?
So, so sad. 😔 I'm still having to unlearn the negative self-talk from their emotional abuse.
@@AngelaHepp I can believe it. Being chronically ill has its trial in and of itself. But the isolation from others is often the hardest part. We look to others for compassion, help and understanding that our limits are not self imposed or due to character flaw. The way others treat us, view us, (as in anyone, sick or not) tends to seep in, even with a firm resolve..doubts creep in. There are psychological tests that demonstrate people almost 100% of the time will go against their own perceptions and thoughts and adhere to a collective’s perspective instead. I can’t wait for the day that patients lay in some scanner and a computer will accurately diagnose a person. I think then will people start realizing just how many people are truly struggling and will get the help they need. There will be no blaming the victim. You seem to be doing great. Thank you for the informative videos♥️👍🏻
My 10 year old daughter always says her body hurts when running or playing. She says she can’t play tag at recess, hates gym class, complained her feet hurt after every softball game, has continuous knee pain. Was diagnosed with an innocent heart mummer at age 2. Had severe hip pain which triggered bloodwork that showed she was positive for Lyme. Another person posted dark under eyes & she is always dark under eyes. She is very thin. Never wanted to eat much. Has been taken off gluten & dairy due to food testing sensitivity. Please help! Where do I go from here? We live in between Baltimore , DC & Hershey. I am thinking John Hopkins ... she already sees a GI Dr there.
The first thing I would recommend that doesn't cost a dime is to Google the 2017 Ehlers Danlos Diagnostic Criteria and go through the checklist. If you're not sure what some of the items are (like atrophic scarring, piezogenic papules, etc), you can do a search on Google images to see if you have those characteristics. If you meet the majority of the criteria, and feel there's good evidence that you may have EDS, then definitely print out the checklist and take it to your next doctor's appointment. Any physician can make a clinical diagnosis of hEDS (hypermobility type), but you would need a geneticist if you want to rule out other types. I hope you find answers!
Yes, I have heard of Dr. Francomano. Did your daughter's doctor complete the 2017 EDS Diagnostic Checklist with her? Geneticists are very expensive and have long wait times, so getting a basic clinical diagnosis based on the criteria seems like an easy place to start. If she's positive based on the criteria, then genetic testing is worthwhile to rule out the more dangerous types. But if she doesn't meet the criteria, then you can save a ton of time and money by not going down the genetic testing road. (Unless you have reason to suspect another genetic disorder, in which case that might still be a good idea.) Again, I'm not a doctor, just sharing my personal opinion and what I would PERSONALLY do in that situation. :)
Exactly same for me everyone thought I was overthinking shit in fact they still do I explain everything scientifically and assholes don't even understand or even take time to listen to me
I'm sorry. 😢 💔 Living with this condition, as well as other rare diseases, is not easy.
Angie Hepp thank u Angie u are amazing and beautiful
My heart goes out to you. I have had POTS 4 times over the past 30 years and my daughter has now had it for close to seven years and we have both been disregarded. My pots has been triggered by child birth, toxic mold or Epstein bar and for the latest round it has been se off by Covid. I’m still suffering from it. My daughters has been triggered by mycoplasma pneumonia and Epstein-Barr, and chronic stress. My daughter has disassociated herself from her father because he doesn’t believe her and is unsupportive. I have always thought it looks like he has Marfan’s syndrome because he has a pigeon chest. My daughter and I know what it feels like to be dismissed and we both were suggested to take antidepressants over and over and over again as if that’s the magical panacea for all illness, structural abnormalities or hereditary conditions! Decades of needless suffering and disrespect. I ended up in the emergency room right before Christmas last year with blood pressure 200/135 and a heart rate of 163 that lasted for hours upon hours and the smug doctor told me I really need to get my anxiety under control. What had happened was I was having histamine intolerance from a mast cell attack. He didn’t notice my face and eyes were were beat red with hives all over my chest. I had uncontrollable shaking and gasping for air. They did absolutely nothing and they would not test my histamine levels, and I begged. They told me that was not in their scope. They wanted to believe that was all in my head and that I could fabricate blood pressure and a heart rate like that. As if I had nothing better to do during Christmas season than rot in the emergency room for three days. It’s bad enough to have your family and friends not believe you but when you find out what’s wrong before any medical community does and then it takes years to be validated, that’s pretty pathetic.
I'm so sorry. It's truly despicable that we have to go through so much just to try to have some minimal quality of life. 💔😭
What's is sinus tachycardia
It's when the heart beat speeds up way too much.
No one ever believed I was sick too and sent me home.
I'm so sorry. 😢 💔
what did the dr do to test you with pots?
Several things. Mainly blood pressures and pulses lying and standing. He still has more tests he wants to do to determine the actual type of POTS, but at the moment he suspects hyperadrenergic POTS.
@@AngelaHepp That's the type of POTS I have, which is why I've responded well to Clonidine.
Do you have TOS?
Yep, but it was mild and healed on its own after my kidney auto-transplant for Nutcracker Syndrome.