Відео

My POTS doctor has no interest in what is causing my POTS. I told her that I could have EDS according to a geneticist. She said that it didn't matter because POTS is treated the same way whether someone has EDS or not.

Thank you so much for this 💙💙💙 My circumstances are a little different, but very frequent and long history of infection

i was diagnosed HSD, and until i saw a pain dr who specialised in EDS and got hEDS diagnose finally.... he said "HSD and EDS under the microscope are identical" so you have EDS, based on everything im seeing and what you told me. I didnt have a perfect 2017 B score, but did show hypermobility in every limb.

In 2019, when someone I knew online read a post I made about my chronic health issues and suggested I might have EDS, I went to UA-cam and found Annie. They are a great resource for EDS and the co-occurring issues, and made me feel so much less afraid. I know you don't know me, Annie, but I am grateful that you're my parasocial friend.

Has the study Dr. Sobey mentioned been published? Thank you for this helpful information!!

How about a pride booth with water misters, zero gravity chairs, and electrolyte mocktails 😂 with on-call golf cart shuttle service to the booth. A boi can dream

Just diagnosed in April. I'm 58 now. I have 58 years worth of s***. 12 years of intractable pain to fail back surgeries. Now I find this out too late. And now I'm in the middle of Diazepam withdrawal /poisoning due to my idiot pain management doctor. 'd sure like to know how I'm going to have a conversation with this first rheumatologist. After all these years. I'm in so much pain. trip alone loan is going to kill me.

Great information.

How often does the relief of symptoms coincide with fluid sounds being heard by the patient?

Thankyou for addressing these…much needed

I guess I was 14 when my mother had to get her leaky heart valve surgery. The doctor told her she must have had rheumatic fever when she was a child - not much was known back then, that was 35 years ago now.

Avoid them entirely if possible.

I went to the allergy doctor and got a pinprick test. I was allergic to nothing. He said I was allergic to anything that put out enough pollen. If enough pollen was in the air I would be allergic no matter what type of pollen it was. Would this be due to mast cells?

Thanks for all of the content you share. I was recently diagnosed with benign hypermobility syndrome,willis eckbom and also dysautonomia. Ive hurt and not felt well probably most of my life and im now 57. The diagnosis explains a lot. I hope to gain a lot of insight watching the videos. I also enjoy your fb page.

Hi.. i live in Oshkosh, wi and a 48....falling apart and know noone and hae been fighting fir over 30 years. Would love to meet you.

I've definitely experienced fatigue, but now it doesn't last very long when it hits me. When I was younger the fatigue would appear and last much longer. Roughly ten years ago I went to a really interesting kinesiology person who told me "your amalgam fillings are making you ill" (I'd been feeling ill since I was 9). The dentist who took my fillings out and replaced them with composites, told me that all of his patients who had chronic fatigue syndrome felt much better when they had their mercury fillings taken out. I know that EDS is a different illness but just wondering if these awful fillings could be making individuals with EDS feel worse. I've got my own set of problems (Autism, PTSD which has luckily reduced, and very low folate and ferritin), and I currently do Qigong exercises, particularly ones for the liver and the blood. (An acupuncturist I know told me that the liver is the "boss", so I favour exercises to boost the liver.) I run away from medication because it's never worked for me. I haven't yet researched EDS but I hope this helps some of you.

They don't have the POTS exercise program where I live so I ordered some exercise pedals that I put in front of a chair so I can exercise sitting down.

I was not properly diagnosed until I was 60 after pushing thru pneumothorax’s, placenta abruptia, polyneuropathy , insane headaches caused by brain sag at 10cm… burning pain in spine, trigeminal neuralgia… gastro issues beyond severe… The worst part, the gaslighting by doctors because of their own ignorance… My half sister died from Chiari at 43… My mother had scoliosis and many of the symptoms I had… As Yankees we touched out far too much.. She died when a lead tore her artery … My daughter too has this.. Bottom line, had I known I would Never had had a child knowing what I could pass on to her… European studies were far ahead of anything I found in New England… An awful, terrible, way to become totally disabled..

Prevention to me is just not moving. My hip goes out when I put on clothes get out of my car even walking

Love this doctor.

I was first in the mental health system. I was diagnosed with BPD (EUPD) and many other mental health disorders. Most of them wrong. I got diagnosed with autism at age 47. It was from autism videos that I figured out that I had POTS and probably EDS. I got diagnosed with POTS but the geneticist refused to diagnose me with EDS because he said that I probably had it but there was no treatment. He said that I could pay $1000 for a genetic test but I don't have $1000. I am on disability. So I am still undiagnosed with EDS.

How do you talk to a doctor about actual diagnosis when she said there's no tests for it but gave me a script for pt that says possibility of eds. Now Im researching and finding there's only one type they can't test for so maybe it's more important than she thinks?

After a colonoscopy would they tell you if you have evacuation problems in your bowel?

Lack of sleep and hot baths are the only triggers that I have figured out.

What if men can carry the gene but don't show EDS symptoms as much as women?

I discovered it when I was 38 years old and I discovered my son's life when he was 9 years old and it changed mine and my son's life ❤ it would be cool to share this experience! Edilson Greghi @james kustow

Thank you for your story. My 22-year-old daughter has autism, a rare chromosome disorder 13;14. here in the last year her shoulder just started dislocating unexpected. I just had a hearing, and it blew my mind that I got a decision from disability saying unfavorable and I've appealed it. I just recently found out about Ehler-Danlos syndrome and I'm going to get a proper diagnosis. I still am unsure if I will win. I just don't understand how social security think she can be independent without help.

antidepressants has not much effect to relive depression. sleeping pills are not helping to get real sleep. painkillers are not relieving pains... in this situation, what shall i do?

My period life was hell in a hand basket. Malabsorption all my life. Up to age 23 I had undigested food in my BM’s …..TMI sorry……since using digestive aids with betaine hcl it helps. Plus my stomach can’t hold a lot of. If I eat too much I bloat and takes forever to feel better .

My occipital moves …..it moved once caused severe nausea….found out the vagus nerve runs through that and if it moves you can get nausea because the nerve runs past your stomach…..my chiropractor put it back in came home and vomited. 🤮 It helped the adjustment but it was the release that made me vomit twice…..felt hugely better afterwards. I only recently had a dr told me I may have EDS…..makes sense as my mother has been chronically ill her 73 years on earth, chronic hernia repairs, grew up as a child seeing both parents in hospital on off wondering if I would be an orphan from a small child. I have been chronically sick almost my 40 years on earth. Chronic digestive problems, my mom has organs out of place, retroverted Uterus, her gallbladder was out of place, I need digestive aids with betaine hcl and gallbladder support. I vomited often as a child and have to be very careful with food. Food allergies etc……nothing has added up till my newest dr mentioned EDS.

I didn't know there was a such thing as inattentive ADHD. I thought I couldn't have ADHD because I'm not hyperactive. I now suspect otherwise.

This is very informative and helpful! Is there perhaps a pdf available of the slides? I'm particularly interested in the flow chart connecting everything.

Appalling lack of true understanding of severe pain. Alternatives to opiods? Expensive therapies that many can't afford? Opiods have been proven time and again over hundreds years to reduce pain and restore quality of life. Shameful lack of compassion shown here.

Best one you have done yet🎉 Many thanks

I noticed with the EDS topics, there is no talk about seniors with EDS that have been living with this syndrome all their lives every test and every talk about my symptoms l always was told your bloodwork is fine or maybe you are anxious and sent me to a counselor or psychiatrist now it is coming out about EDS still only few know about this my doctor said to me “ where did you get this information from ? I told him the internet and l didn’t get to tell him my story when he walked out the door!

Could I say I am stunned into focus as I encounter your story which mirrors mine-as one who has great difficulty verbally communicating I do believe I can confidently share this to give voice to my story with such similarities 😮❤😊 Bless you

🦓 it was six decades for me to get diagnosed. Thank you for all you do.

What about stalking and harassment of people suffering Ehlers-Danlos, please ?

This video is an excellent resource and pre appointment education for both patients and Dr's and other services and I will be requiring all interactions and appointments to familiarise themselves and their colleagues and inadequate often abusive systems, with the contents until there is complete coherent and sensitive retraining of all Dr's and services and within society, of the complex traumatic consequences of continuing to fail eds patients on an intergenerational level. Thank you so much for this video, please keep pushing for this to be a part of all medical services training to prevent further harm.

Sir❤Thank you-the videos I have watched over the last 3 years have taken me off the floor and into life by applying the knowledge 🎉Bless you and those who fight for us😅

❤

Is this still a valid diagnostic path if the symptoms aren't constant? Some days there's little to almost none while other days the person can have tachycardic episodes even fully at rest?

I tried looking up the QoliFy company but couldn't find it.

Thank you for this lecture. Very informative

Can you share the app you recommended for mindfulness? Or any other resources??

Are there any effective pro kinetics that don’t interfere with serotonin receptors? What do you think of natural alternatives such as ginger?

Great video. Thank you. Low Dose Naltrexone stopped my Hyperadrenergic PoTS same day. I am off it now with continued improvement and am on Xolair for the food allergies and intolerances (14 ER visits). Been diagnosed with Long Covid. Diagnosed with Ehlers Danlos 35 years ago. Also have Alpha Tryptasemia, A2-B3 and Central Heterochromia. Basically a mutant. 😂 Hope this helps someone.

When Tara said it feels like her brain is drowning I thought YES!!! What a perfect description. I say it's a sleepiness that feels like it comes from my brain but her description is much better and I think easier to understand. ❤

I believe that diversity makes us stronger as a community and as a nation.

It is hard to know for me as a white person when is the right time to talk and when is the right time to shut up. Being autistic also complicates things.