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Is there a form of eds that is not hypermobile?

I'm 3wks post mpfl. It's definitely trying, but I am super glad I got it.

Do you have pressure point pain? That’s my main symptom. I often wonder if I was misdiagnosed.

omg I've been cracking constantly since I was 25, I'm 49 now

I have the knees, elbows, and fingers at 90 degree, I'm double jointed but not flexible. I could never touch my toes in my life

I use collagen powder for protein and it seems to help with certain things like helping me meet my amino acid requirements but it does not help my EDS at all lol

Your opening statement is complete BS. I work extremely hard every single day probably do 15 to 17,000 steps and my pots is out of control. Has nothing to do with inactivity.

Can Beta Blockers be used if someone with POTS has low BP?

Almost 60 and when I was a kid I used to watch TV with my legs over my shoulders just I don't know because? I have an insane amount of these and why no one has ever noticed when I literally complain about half of them... My nephew just got diagnosed now we know my mother my grandmother my nephew and no doubt me I'll have it.. I'm looking for a doctor who knows what they're doing with it so I can get the proper diagnosis

11:56 I found it was the easiest for me to pass despite my tight hamstrings and calves wich probably says something about my body but who knows.

I was finally diagnosed at 67!!! I had health issues my whole life. I scored a 5. The geneticist said it would have been higher but my spurs and arthritis made it hard. Pinkie at 90, thumb to wrist my whole life lol

I'm 34, never been diagnosed and scored 9/9. I've been curious about ever since I went to see a PT for my wrist, and the first thing he said to me was, "Oh, you have EDS."

Ahhh just a month or two before we were advised of the COVID presence. 💐💐💓💐💐

Does anyone know new name of Madi's Instagram? The one in description doesn't work.

I did not know about the heels and I DO have it and am shocked. I mean I have a 9/9 so I’m not surprised I have it but also I just didn’t know there was another item.

Ecchymosis is just the medical term for bruising. On the Hospital Del Mar criteria, I hit all of them, but the elbow hyperextension. I’ve been trying to find someone to diagnose me with hEDS and there’s no one in my tri-state area that can do it from what I can find. 😩

The carotid baroreceptors are being compromised across the majority of the population with forward head posture and sedentary lifestyle. Add possible thyroid inflammation and a connective tissue disorder in the area of the "barometer" that dictates our heart rate and we're getting somewhere 🤓 (I'm no doctor, just an autistic hypermobile yogi)😜

My own husband has a diagnosed vascular version of EDS. This has resulted in hernias, dislocated joints and heart stents also detached retina problems. Our middle son whose IQ is in the gifted range suffers from high functioning autism. Our youngest grandson also gifted is on the autistic spectrum. I'd put money on a genetic developmental link between the conditions.

5mg of Midodrain gave me sever anxiety and heart rate 55 while sitting down. I had to stop the medication

I’ve been diagnosed with POTS and Fibromyalgia, recently found out that my echocardiogram showed me developing a “leaky heart” in which my one of my hear valves has stopped closes properly. (Wasn’t there back in 2017 when I had my last echo) I’ve always have been super flexible, so are a few of the women in my family, we can twist our legs around and bend my legs so my feet face backwards. I could also put my foot flat against my face since elementary. Walking down the stairs is uncomfortable at best and at worst I’m stuck in bed. About a year ago, I got hurt on the job and the area around my gallbladder messed up and never healed. They (PC Doc) told me it must’ve been a damaged muscle, but I insisted on getting my gallbladder tested (it runs in the family), HIDA scan came back normal, but they’re wanting me to get an organ removed regardless of this. Two of my co-workers brought up EDS to me, and I always shrugged it off till I saw it pop up as a possible cause for my new little heart defect. Then I think about how my knees often pop out of place for a few days at a time, how my ankles often roll, and how I have to fix my jaw back into place after the bones start rubbing together or just don’t feel right. My PC is so dismissive, and I really don’t want to get a whole organ (a helpful seemly healthy one at that) to be removed when I already have had GI issues practically my whole life. I just want a name for what’s going on. And frankly my fiancé’s insistence to work out in the gym to have the pain go away is kind of… very annoying. I can’t even walk down the stairs without feeling like I may fall. Yet I can’t get my landlord to add in a staircase bar to help prevent any falls. It’s ridiculous, and I know having a name to my issues would help press its importance. I don’t know if I have EDS, but this whole process of clearing the confusion is such an expensive and time consuming thing. All while being pressured to make rent despite no jobs hiring for people who can’t drive, work full time, or be in hot locations without risking a fall. I’ve passed out multiple times within this year alone, and when I was working my last job (part-time) I was still getting close to passing out almost daily even with additional hydration w/electrolytes. It’s such a headache. 😓

Why is it some say they have healed there pots and others not?

1: passed 2 a 8 ☑️ b no (hyper mobility though) c 3/3 3: passed Yup, EDS. Better see a doctor.

This was so helpful: what type of Dr should I seek o it? Is there anything that can be done? I can’t exercise anymore

Once youre in horrible pain, what do you take to take the pain away?

Just seeing this. You all did your a great job ❤

I have e.d.s

I don't know did i got this or hsd. The doctor sayed that i don't have eds because of some of the critares of it. Also she sayed that i have slight scoliosis. It's interesting that what separests hsd and eds, because i also have gastrointestial pain (that can be pretty severe) and ortostatic hypertension (i don't know how close it's to pots, but sometime i get very dizzy). I already have adhd and dyslexia. Now the joint pain have gone worse and worse. Also i don't know sometime what is from what condition at somepoint. I am native english speaker so my english can be pretty bad. Dyslexia makes my text kind of what it is also.

One thing I have never seen mentioned is the problem with tooth decay, the inability of the gums to hold tight to the teeth allows decay resulting in loss of teeth very early. Hearing problems because the inner ear is very reliant on tiny filaments I lost most of my hearing during the birth of my first child. I also lost my sense of smell after falling and landing on my nose breaking out the tissue responsible for smell. My daughter became paralysed during her 4 th month of pregnancy because her hips stretched so much regained at birth of child

Peppermints & Kosher Pickles helps the most with my nausea. Also, Promethazine tablets work way better than zofran.

A bit young for gastropareses

I have it badly I feel like I’m dying

For those suffering from this, something that really helps me and keeps my symptoms completely gone is acupuncture. I tried everything, prescriptions that do not helps and sometimes make it even worse, HCL and Enzymes, which help reducing the time I feel bloated, but don't bring a complete solution. I tried different types of pre and probiotics, which also help, cause the food not processed correctly ends up in the intestine and it starts creating other sort of imbalances. Tried Matcha teas, different stress control pills. Everything seems to help a bit, but nothing cures it. Until I tried Chinese acupuncture (Chinese, not korean, not japanese, the techniques differ). I was skeptical at first, but tried so much shit that why not try this also? The day following my first session I felt like a balloon just popped. I was gassing out, farting like crazy. That continued for like three days. Next week, another session, I started feeling that my lower esophageal sphincter was now closing better, so reflux was getting better, and less inflammation. I did four session. After the 4th session I was like new. I mean it, I felt like I hadn't' felt for years. So I stopped doing it, and slowly the symptoms came back. Two months later, full symptoms back. So I went again and had two sessions, and feeling almost 100% again. I am planning on doing one session every other week to keep me going. All I can say is that whatever nerves terminal those little needles stimulate, it works.

4:41 so me hahaha

I love my Matt, I got it today. It’s not as bad as people say, I was able to stay on it for 40 minutes my first time 😂❤

Youre very attractive

I disnt knownit was this commin inalso have gastro paresis

the “im not sure if it actually helps or if i just think its helping” is so real😭✋

Ironically my mother has hEDS and my father has EDS TYPE II. I’m an identical twin who scored 9 out of 9 but outside of the scoring we both present very differently with EDS the finger and thumb can be done virtually without any assistance by using any of my other body parts. I was diagnosed at 29yrs old due to having severe shoulder dislocations (that can dislocate by sneezing and my ball joint goes behind my shoulder blade) that led me to Emergency Room and I was referred to Genetics as the Resident on duty measured me and my man size hands and 36” inside leg, long arms etc and assumed I had Marfans. Dislocations are so unbearably painful…every time). At 50yrs old I can still put both legs together, feet together and hands flat on the floor, and all the others. I had a stroke at 16yrs (cause unknown at the time until I was diagnosed at 29yrs old with EDS and eventually the Consultants had a cause for the left brain stem stroke which has left me with deep muscle wastage down my complete right side). We both suffer from severe post partum haemorrhage during giving birth, which gets worse with each child (my daughter had complete placental abruption and the cord snapped during the emergency cesarian) with her 2nd child. I also have SLE, We can trace this back on both sides of the family 5 generations and I haveAsperger’s & ADHD but my Monozygotic Identical Twin doesn’t. Again the AUTISM, ADHD, TOURETTES ETC can be traced back to 5 generations. Strong meds such as morphine fentanyl etc have absolutely NO effect (as in the effect they’re meant to have), also Local anaesthetic has absolutely no effect and I’m allergic to almost all antibiotics - I had severe sepsis, multiple organ failure and septic shock and required 2 emergency life saving ops so I guess it was during the Ops and then during ICU for so long, being peg fed that they found this out. I have so many more symptoms

Thank you for this! I just don’t even know what to say to the doctor

So weird, I’m on pain meds for many of the conditions you and other ppl have mentioned, they’re opioids and for some reason they’re my equivalent of stimulants, that just take the edge off the chronic pain but for CFS I couldn’t open my eyes for any length of time if but for opioids. Does anyone have the same?

I don’t have this. I can do a split and I am flexible because of ballet. But I can’t do anything that these people are doing. I am not double jointed. And my skin is not stretchy. And I don’t have stretch marks. This is helpful. Prayers for all of you

Thank you for this

I had a teleconference with an EDS geneticist. Upon physical exam, I have hypermobile EDS. I tested 5. Finally, a diagnosis at 67! I'm having genetic testing done to check for other EDS issues.

Just realizing my elbows hyper extend and it’s another thing that makes it look like I have lunch lady arms that don’t match the rest of my body. ( I assume the excess skin could be a part of it as well but the more u know 💡

I don’t have the walker or steinberg because I have stupidly short fingers

Darn hpa axis issues (adrenal) and mitochondria issues it’s all mineral rooted but that’s another long conversation. Tissue analysis is very telling

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For me, the fatigue is worse than the pain. I can manage my pain somewhat acceptable with meds, but there's nothing that helps with the fatigue. Nothing. It's cruel. I spend 90% of my life in bed nowadays. It's not living, it's existing...

I had to stand for 15 minutes, a freaking nightmare for my EDS-body! 😅 ( my life before EDS hit me like a truck was basically standing front row at concerts, my biggest passion - it's been 10 years since I attended a live concert 😢). And yes, POTS was confirmed. I'm taking beta blockers and drink lots of water. Salt capsules is essential in summer. I rarely faint, but the pre-syncope is scary, basically going blind and deaf. I quickly get on the floor. It's so much more to POTS than that, but most of us here is aware of that I guess. And you're explaining it very well, Izzy!

Hey Izzy I am sorry to have to be that intense person but I was wondering, can you give us an update on what happened to your wrist please? (the video from 5yrs ago) I can't find any other videos that follows up on how you managed to solve your wrist issue or what it was exactly. I would really really appreciate more info on that as I am in the sane situation and its been two months of pain now and no doctor has been able to really help me. BTW your channel is amazing and thank you for sharing your experiences with us all.