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 haven't feel for years. So I stopped doing it, and slowly the symptoms came back. Two months later, full symptoms back. So I want again, 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.
@Hello-gf2og21 сағат бұрын
4:41 so me hahaha
@veronicamz123Күн бұрын
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 😂❤
@jabarikellamКүн бұрын
Youre very attractive
@jabarikellamКүн бұрын
I disnt knownit was this commin inalso have gastro paresis
@seasonedglue9178Күн бұрын
the “im not sure if it actually helps or if i just think its helping” is so real😭✋
@blytheangelpsychicmedium7458Күн бұрын
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
@kawag6356Күн бұрын
Thank you for this! I just don’t even know what to say to the doctor
@blytheangelpsychicmedium7458Күн бұрын
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?
@marimarxuach7180Күн бұрын
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
@tamarashake93892 күн бұрын
Thank you for this
@Fuphyter2 күн бұрын
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.
@lexusgodina22964 күн бұрын
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 💡
@izzy_0084 күн бұрын
I don’t have the walker or steinberg because I have stupidly short fingers
@strawberryme085 күн бұрын
Darn hpa axis issues (adrenal) and mitochondria issues it’s all mineral rooted but that’s another long conversation. Tissue analysis is very telling
@PinkFlowers3655 күн бұрын
ty
@Crrly6 күн бұрын
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...
@Crrly6 күн бұрын
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!
@JenniferMarin-r4b6 күн бұрын
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.
@JenniferMarin-r4b6 күн бұрын
Hey Izzy I really hope you see this cause I am in the same position and extremely desperate to find some answers. Can you give us an update on this please? I can't find any other videos that follow up on how you managed to solve your wrist issue or what it was exactly. I would really really appreciate more info on that. BTW your channel is amazing and thank you for sharing your experiences with us all.
@sirisongbird6 күн бұрын
I LOVE LOVE sushi!! Unagi. My gastroenteritis (self-diagnosis so far) can't thank you enough. It's not fun limiting foods i swear i eat like a bird. Im not ALONE👏🏾👏🏾
@sirisongbird6 күн бұрын
Invisible disability ughhh 😅 I realize that most people are dealing with health issues at some point in their lives but chronic illness is a BUMMERRR
@sirisongbird6 күн бұрын
The more I watch the better this gets. I'm so glad I found this.
@sirisongbird6 күн бұрын
Excellent video!!! Thanks for jumping right in 👍🏽
@Xirdnehynnej8 күн бұрын
I’m late to this…I’m 41 and I’m just NOW being sent to UC Davis for genetic testing. 20 years ago I had retinal detachment in my right eye and had a scleral buckle surgery. I’m half blind in my right eye. 2 years later I had my second born due to a spontaneous uterine rupture at 26 weeks gestation. I had vaginal birth with my daughter the year before with hypertension but no complications. My son was 2.3 lbs and had to have a heart surgery at Standford. 2 years ago I had duodenal loop surgery and my stomach ruptured during surgery. I have severe allergies also to metals so no staples and as they were pulling the last stitch through the stomach tore. What was supposed to be a routine 3 hr surgery turned into 6 hrs. I had to have total knee replacement in my left knee and rough insurance for a ceramic knee because of proved metal allergies. I had to have a total hysterectomy this last may due to being on the border of them calling it cancer. They took it all out minus the ovaries. I was born with severe asthma, anaphylaxis to peanuts (now more added to that list), always hyper mobile but didn’t know that meant anything, and I’ve had organ ruptures. My dermatologist recently is connecting the dots. We need more awareness! Thank you for sharing this video! I can see fibromyalgia at the time when I was 16 fit the suit but down to attached ears and facial features? And my weird human party tricks? Wishing all the best and thank you for doing what you’re doing ♥️♥️♥️ Edit: also this guy in the video looks just like my son. I’m so weirded out but also thank you 🙏🏻
@playlistaccount8 күн бұрын
Golly gosh you are lengers
@DuckiDrawzzStuff8 күн бұрын
I HAVE NEVER BEEN DIAGNOSED WITH ANYTHING LIKE THIS BUT I FAN TOUCH MY THUMB TO MY WRISTS I CAN BEND MY ELBOWS AND KNEES SORTA FUNNY AND I CAN PUT MY PALMS ON THE FLOOR I AM HYPERMOBILE but anyways, I hope everyone is getting the help they need ❤❤ (I also have the little balls of fat in my heels)
@ashleynoelle74299 күн бұрын
I’m sorry it’s so hard for you. Carnivore helps me so much with this. I hope you feel better soon.
@adriennegiffen9 күн бұрын
Hi, Izzy! Have you guys noticed elevated anti-carP levels in people with Heds without any other RA indicators?
@colleenlysen296910 күн бұрын
The Turnto app has EDS/lc me/cfs for more information
@colleenlysen296910 күн бұрын
The Turnto app is also a great resource for pots
@4wayStopEnforcement11 күн бұрын
One of my frustrations with the criteria is that it still doesn’t include many details about smaller joints. And also, my knees don’t hyperextend, but my patellas slide and dislocate LATERALLY, which doesn’t “count” towards the score. That always seemed strange to me, because the test is supposed to measure for hypermobility in general…not simply for hyperextension of the major joints. I barely passed even though I meet so many of the diagnostic criteria, simply because my elbows and knees don’t hyperextend. Never mind that I had bilateral knee surgeries at age 14 because I could no longer walk without extreme pain and dislocations. I know the criteria will never be perfect, but these are a couple of major flaws that I think need to be addressed. For what it’s worth, I really think that future research will show that HSD and EDS are one and the same - but with different manifestations.
@Zingzangzongzil11 күн бұрын
How come Heds is most common among all eds and theres not a gene still identified for that?
@SwevenIthe12 күн бұрын
Otras hwelpiaþ on heora holum þe hīe under trēowum dulfon nēah ēam. Æfter ānum mōnaþ mæġ sē otorhwelp þæt hol forlǣtan, and æfter twām mōnaþum hē mæġ swimman.
@ashleynoelle742913 күн бұрын
Carnivore and fasting really helps abdominal distention.
@jannetteperedalumley525714 күн бұрын
Lying down : 50 Standing up :106 A couple weeks ago it would go to 120 But I’m 14 idk if it’s pots or normal
@GoingGreenMom14 күн бұрын
I was in your description section before you got into the video, is there a link between gastroparesis and EDS? Ive been diagnosed with hypermobile for almost 30 years.
@NesInDoubt16 күн бұрын
thank you so much for posting this
@ronpost58716 күн бұрын
I have the same issue and found Sigvaris 970 Dynaven Series Men's Closed Toe Knee Highs 20-30 mmHg - 922C work great for me. Reasonably priced and last a long time. I'm sure there is a similar option for women.
@The__Outlaw16 күн бұрын
Thank you..... glad I found this video.
@trashwaterthe7th57017 күн бұрын
Years later I still come here to see you and jaq having a blast ❤😢
@kayleeweatherspoon652617 күн бұрын
when did you get to a point where you could kneel on soft surfaces? I had the same surgery 2.5 months ago!
@xxcobu18 күн бұрын
I just did my test and got a 5/9 but I didn't understand the thumb one, and I can completely fold down one of them so I guess I'm actually a 6. The ones I always knew I could do was palms to the floor and the pinkies and then I discovered my other wonky joints also were abnormal. 🥲 I wasn't diagnosed with EDS though, he just put hypermobility. My facial skin is also really stretchy and I had no idea it wasn't normal. 😂
@peanutnelly0118 күн бұрын
Did you have any stabbing chest pains when young? I was told I had costochondritis and asthma (I didn't and still don't have those things). Did you have "growing pains"?
@firstanama457319 күн бұрын
I’ve tried many brands of collagen and haven’t noticed any difference with pain from Eds. I have noticed my hair grows faster and my nails . My hair texture feels a lot better. I still bruise easily and it hasn’t helped my skin as far as I can see. I continue to take it for my hair and nails and it also has 10g of protein that I add Into my shake after workouts. It definitely fell short on helping pain for me.
@mariaager192419 күн бұрын
Yes Gas-x definitely helps
@corisanto868519 күн бұрын
I had an older Army vet in my jrotc classes help me somewhat. He reminded me to tilt my head from side to side before i actually get up from a sitting position , he thought my fainting spells were my equilbrium being off. Took me 30 years later to realize it was POTS and i was uber dehydrated. So i drink celtic salt with my water, the cardiologist suggested salt tablets but i wasnt happy with the side effects. Thabk you for sharing your journey, i havent tried compression atockings yet although they were also suggested.
@GreeneyedAngel7619 күн бұрын
I cannot do broccoli at all it makes me sick. I can't do anything with seeds either. I love love sushi one of my safe foods along with Avocado and fish chicken and turkey. Can't touch red meat or pork at all
@MarkieMcG.19 күн бұрын
I stop drinking milk. My GP went away completely... I instantly gained 15 lbs. Try eliminating dairy as a step to healing Y'all.
Пікірлер
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 haven't feel for years. So I stopped doing it, and slowly the symptoms came back. Two months later, full symptoms back. So I want again, 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
ty
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.
Hey Izzy I really hope you see this cause I am in the same position and extremely desperate to find some answers. Can you give us an update on this please? I can't find any other videos that follow up on how you managed to solve your wrist issue or what it was exactly. I would really really appreciate more info on that. BTW your channel is amazing and thank you for sharing your experiences with us all.
I LOVE LOVE sushi!! Unagi. My gastroenteritis (self-diagnosis so far) can't thank you enough. It's not fun limiting foods i swear i eat like a bird. Im not ALONE👏🏾👏🏾
Invisible disability ughhh 😅 I realize that most people are dealing with health issues at some point in their lives but chronic illness is a BUMMERRR
The more I watch the better this gets. I'm so glad I found this.
Excellent video!!! Thanks for jumping right in 👍🏽
I’m late to this…I’m 41 and I’m just NOW being sent to UC Davis for genetic testing. 20 years ago I had retinal detachment in my right eye and had a scleral buckle surgery. I’m half blind in my right eye. 2 years later I had my second born due to a spontaneous uterine rupture at 26 weeks gestation. I had vaginal birth with my daughter the year before with hypertension but no complications. My son was 2.3 lbs and had to have a heart surgery at Standford. 2 years ago I had duodenal loop surgery and my stomach ruptured during surgery. I have severe allergies also to metals so no staples and as they were pulling the last stitch through the stomach tore. What was supposed to be a routine 3 hr surgery turned into 6 hrs. I had to have total knee replacement in my left knee and rough insurance for a ceramic knee because of proved metal allergies. I had to have a total hysterectomy this last may due to being on the border of them calling it cancer. They took it all out minus the ovaries. I was born with severe asthma, anaphylaxis to peanuts (now more added to that list), always hyper mobile but didn’t know that meant anything, and I’ve had organ ruptures. My dermatologist recently is connecting the dots. We need more awareness! Thank you for sharing this video! I can see fibromyalgia at the time when I was 16 fit the suit but down to attached ears and facial features? And my weird human party tricks? Wishing all the best and thank you for doing what you’re doing ♥️♥️♥️ Edit: also this guy in the video looks just like my son. I’m so weirded out but also thank you 🙏🏻
Golly gosh you are lengers
I HAVE NEVER BEEN DIAGNOSED WITH ANYTHING LIKE THIS BUT I FAN TOUCH MY THUMB TO MY WRISTS I CAN BEND MY ELBOWS AND KNEES SORTA FUNNY AND I CAN PUT MY PALMS ON THE FLOOR I AM HYPERMOBILE but anyways, I hope everyone is getting the help they need ❤❤ (I also have the little balls of fat in my heels)
I’m sorry it’s so hard for you. Carnivore helps me so much with this. I hope you feel better soon.
Hi, Izzy! Have you guys noticed elevated anti-carP levels in people with Heds without any other RA indicators?
The Turnto app has EDS/lc me/cfs for more information
The Turnto app is also a great resource for pots
One of my frustrations with the criteria is that it still doesn’t include many details about smaller joints. And also, my knees don’t hyperextend, but my patellas slide and dislocate LATERALLY, which doesn’t “count” towards the score. That always seemed strange to me, because the test is supposed to measure for hypermobility in general…not simply for hyperextension of the major joints. I barely passed even though I meet so many of the diagnostic criteria, simply because my elbows and knees don’t hyperextend. Never mind that I had bilateral knee surgeries at age 14 because I could no longer walk without extreme pain and dislocations. I know the criteria will never be perfect, but these are a couple of major flaws that I think need to be addressed. For what it’s worth, I really think that future research will show that HSD and EDS are one and the same - but with different manifestations.
How come Heds is most common among all eds and theres not a gene still identified for that?
Otras hwelpiaþ on heora holum þe hīe under trēowum dulfon nēah ēam. Æfter ānum mōnaþ mæġ sē otorhwelp þæt hol forlǣtan, and æfter twām mōnaþum hē mæġ swimman.
Carnivore and fasting really helps abdominal distention.
Lying down : 50 Standing up :106 A couple weeks ago it would go to 120 But I’m 14 idk if it’s pots or normal
I was in your description section before you got into the video, is there a link between gastroparesis and EDS? Ive been diagnosed with hypermobile for almost 30 years.
thank you so much for posting this
I have the same issue and found Sigvaris 970 Dynaven Series Men's Closed Toe Knee Highs 20-30 mmHg - 922C work great for me. Reasonably priced and last a long time. I'm sure there is a similar option for women.
Thank you..... glad I found this video.
Years later I still come here to see you and jaq having a blast ❤😢
when did you get to a point where you could kneel on soft surfaces? I had the same surgery 2.5 months ago!
I just did my test and got a 5/9 but I didn't understand the thumb one, and I can completely fold down one of them so I guess I'm actually a 6. The ones I always knew I could do was palms to the floor and the pinkies and then I discovered my other wonky joints also were abnormal. 🥲 I wasn't diagnosed with EDS though, he just put hypermobility. My facial skin is also really stretchy and I had no idea it wasn't normal. 😂
Did you have any stabbing chest pains when young? I was told I had costochondritis and asthma (I didn't and still don't have those things). Did you have "growing pains"?
I’ve tried many brands of collagen and haven’t noticed any difference with pain from Eds. I have noticed my hair grows faster and my nails . My hair texture feels a lot better. I still bruise easily and it hasn’t helped my skin as far as I can see. I continue to take it for my hair and nails and it also has 10g of protein that I add Into my shake after workouts. It definitely fell short on helping pain for me.
Yes Gas-x definitely helps
I had an older Army vet in my jrotc classes help me somewhat. He reminded me to tilt my head from side to side before i actually get up from a sitting position , he thought my fainting spells were my equilbrium being off. Took me 30 years later to realize it was POTS and i was uber dehydrated. So i drink celtic salt with my water, the cardiologist suggested salt tablets but i wasnt happy with the side effects. Thabk you for sharing your journey, i havent tried compression atockings yet although they were also suggested.
I cannot do broccoli at all it makes me sick. I can't do anything with seeds either. I love love sushi one of my safe foods along with Avocado and fish chicken and turkey. Can't touch red meat or pork at all
I stop drinking milk. My GP went away completely... I instantly gained 15 lbs. Try eliminating dairy as a step to healing Y'all.