Im a massage therapist and although it can be tough at times I find that it helps me to keep up with muscle tone tremendously. I am trying to not let videos like this discourage me from what I want to do in life. Being in pain was a birthright so I hope I can continue doing what I do for years to come.

I uhh, i can do it backwards

I can do that and even more further !

Why is it that the rheumatologist put me down as having hypermobility, but not EDS? Im in such pain I've been referred to the chronic oain management team. And, should I press for a diagnosis?

I can With both of my hands

Mera thum ka midle joint bend hota he😂😂

I thought it was more about flexibility

I was just diagnosised 2 days ago, it came about as I has issues with blockages with both my kidney and hip, meaning loss of blood supply and parts of them dying, I'm waiting to see if I can get a hip replacement but with thie vEDs disgnosis. I don't know whats going to happen. I'm also worried since I'm 39 and everything I read up on says life expectancy is up to 50 years old. its alittle overwhelming if I'm honest

hEDS appears to be linked to inflammation from mast cell activation in connective tissue from Mast cell disorders such as Mast Cell Activation Syndrome (MCAS), Hereditary alpha-tryptasemia syndrome (HαTS) and Mastocytosis. hEDS is very common among those with ME/CFS. A Swedish study of 234 ME/CFS patients meeting the Canadian Consensus Criteria found that 49% of patients had hypermobility and 20% met the criteria for hEDS.

The short awnser is yes, the long awnser is yeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeees

My doctor suggested that I may have EDS after I visited him after sudden leg pain after he noticed my fingertips going fully backwards while pressing my face. What am I supposed to do if I have this and I don't see a specialist for months.....

I also thought that it meant you had double joints but I am autistic so kinda the name set me up for it haha. Can also cross the fingers like that, do it a lot when bored

What did you think double jointed meant when you first heard the term?

I found keto did help me lose weight, but it wasnt sustainable. Carnivore is much more helpful, as it gives me a lot of energy. At 76, its great!

Yes because I am double jointed

Coolest thing ever is that you do the scripting for the convo This is so needed by me I’ve been thru this and haven’t had luck yet But I struggle with phone calls and dr appts as a nurse esp and I am neurodivergent as many of us with hypermobility are ❤️

I’m a lab technician with multiple chronic illnesses and with reasonable accommodations that works well for me

Please don’t reinforce double jointed as medical terminology. It’s a poor misnomer for hyper mobility. To be double jointed that would require additional joints. Love your content otherwise.

Yes... I think my daughter might! She had bilateral subluxation of her hips and had major surgery on both at the age of 3. It's been quite a challenge for her and as a mom I feel helpless to help her. 🙏🏼

I have EDS, dx at 41, I’m now 51. It explained soooooo much of my childhood and childbearing years !! I’m 5 weeks post spinal fusion surgery and hoping it’s going to, eventually, help with some of my back issues. But in true EDS style my skin is playing up and one of the two incisions keeps popping open 🙄. This happened when I had c sections, years ago but obviously didn’t know I had EDS then. My skin can cause me so many issues, and I have HUGE stretch marks from pregnancy, big wide keloid scarring, that is paper thin but didn’t know then I had EDS, plus each of my 4 babies became more prem in order, until my final lil girl, 3 months early weighed 3lb, my womb, ligaments etc couldn’t support the weight of babies, they were all tough pregnancies x

I had my annual with my PCP and was trying to communicate my list of things (I try every couple years hoping for some answerss), and he just made it seem like maybe I was depressed. I just said, “I guess I’m a hypochondriac.” He smiled awkwardly, and I cried the drive home. A few days later I start seeing all of these hypermobility and EDS posts. I’m so thankful they did an EDS awareness month! Otherwise, I don’t think this would’ve ever been brought to my attention… A week after my PCP appointment, I met with my orthopedic, and I asked him about hypermobility. He asked me to do the things on the scoring list, and he agreed that I’m hypermobile and that my joints are very unstable. I still don’t have an official diagnosis, but I’m finally hopeful. Chronic pain, fatigue, dizziness when standing up from bending over or sitting, IBS, Raynaulds, and headaches along with potential mast cell activation syndrome could finally make sense even though they didn’t seem related until now.

Has any research been carried out into a potential link between low stomach acid, EDS, MCAS, and all the related symptoms? I only heard about EDS and MCAS late last year, at age 62, having suffered symptoms for as long as I can remember. In the absence of any meaningful help from a long list of medical practitioners, I figured out, after much research, self education, trial and error that I had a problem breaking down proteins and extracting other nutrients resulting in a deficiency of collegen, resulting in a leaky gut, a wide range of soft tissue problems and a multitude of autoimmune issues, including chronic diarrhoea which was significantly depleting my electrolytes, causing many more symptoms. My solution was to take Betaine HCL to help break down proteins and to supplement electrolytes, especially potassium and magnesium, to help my central nervous system to function better. I also added slow release vitamin C, zinc, Vitamin D3 and K2 to help boost my immune system and reduce inflammation. Since adopting these strategies, my symptoms have significantly diminished. More recently, I have discovered a link between MCAS, histamine intolerance, and my symptoms. I switched to a reduced histamine diet, and my chronic diarrhoea resolved in a few days. I'm now experimenting to try to establish what my histamine tolerance level is. It transpires that, in my efforts to eat a healthy diet and improve my gut microbiome, I was overdosing on high histamine foods, including oranges, bananas, and fermented foods. The symptoms of low stomach acid include acid reflux and an inability to break down proteins into the constituent nutrients, including the amino acids necessary for our bodies to produce collegen. Without the necessary nutrients to produce collagen, we are more likely to suffer leaky gut. If we don’t break down proteins properly in our stomachs, they can leak through the gut and cause a multitude of autoimmune issues and increase the likelihood of MCAS episodes, both of which can become chronic. The antacids that most medical practitioners have traditionally prescribed for acid reflux make the problems worse for a significant proportion of patients, leading to nutrient deficiencies, gall stones, and a range of other serious side effects. Antacids are sometimes necessary but are massively over-prescribed / over-used. Do your own research and/or talk to your medical practitioner before changing any treatments you have been prescribed. There are lots of videos on RU-vid discussing the pros and cons of using Betaine HCL and how to establish what dosage, if any, is appropriate and safe. Maybe my combination of symptoms is unusual, or maybe, after decades of trial and error, I have stumbled upon a treatment regime that might benefit others with EDS?

I only went low-carb for about three months, but found my eating became disordered, like I wouldn't eat, because I didn't have the energy to cook meat. I used to boil some pasta and add a bunch of veggies when I felt like that. And thendiet i was trying also avoided beans, pitted fruits, melons. Like all the fruits i adore the most ....

My friend can do that...

This was exactly what I needed! Going through a tough transition in that I’m 29, years into my career and I need flexibility that seems not to be an option. So hard… Great ideas!

I never knew what POTS was, but I was treated for it. In my late teens, I would get up and become light headed with my vision going out with grey static like patterns. It would last for maybe 15 to 30 seconds and slowly clear up. However, on two occasions it led to a full fainting spell where I woke up on the floor. The first time triggered my parents to take me to urgent care where I was eventually hooked up to a EKG for 24 hours. It was these probes glued to my scalp and was painful when they removed it. The past week has been mind blowing, I was never diagnosed with hEDS, but all of the common symptoms line up with my medical history. Still to this day I can put both my feet behind by neck and I am 35. I also have zero wrinkles on my face. I ran through the diagnostic criteria and comfortably meet the requirements. It is so freeing finally having an answer for the various day to day challenges. Knowing I am not crazy and the daily pain I feel is not simply in my head. It is also bittersweet, I was criticized growing up for things that I now know were outside my control. My lack of hand eye coordination that my dad would scream “Keep your eye on the ball”, when I couldn’t catch or hit a ball for my life. The fact that I had little to no endurance when trying to do Cross Country Running, no matter how much I trained for it. The fact that holding a pencil would cause sharp pain, holding a phone to my head would cause shooting pain in my shoulder and wrist. Fingers and toes turning white when shoveling snow, then pulsing in pain as I warmed them up. Having constant GI issues with nothing ever showing up in Colonoscopies or Endoscopies. Feeling tired all the time and having to push myself to not take a day off from work. Having lower back pain when walking for more than 500ft. My knees feeling stiff and requiring me to twist until they pop multiple times a day. Walking and randomly my ankle sprains causing me to fall down. Overcast days causing pulsating pain in my eyes due to light sensitivity. Waking up with random bruises on my arms and legs. When everything points to hEDS as the possible culprit, the massive web of issues begins to make sense. For most my life I felt like a hypochondriac, now I feel validation for the first time.

Have you tried going full carnivore for a while?

Been keto for 3 years, huge reduction in joint pain!

Have you tried going low-carb or any type of diet to improve your health? How has it affected you?

I feel special again

I have two

what name song

Can you have hEDS without passing the beighton test? I have HSD and also meet the rest of the hEDS criteria but I only score 3/9 on the beighton scale because my other hypermobile joints aren’t included in that test

Yes

I’m 28 & just sent my spit test off yesterday! Pretty spot on with the stats😅

I haven’t watched all this yet but what did he mean about the hip trick he used to do?

Great vid. Thanks. Any tips as you how to not focus on your illness when you don't yet have a diagnosis?

Yes

Very informative. Thank you!

Both of mine do.

My friend Shannon has aEDS, and she is trying to take care of her son who has Gillian Barre syndrome.

I have Classical-like Ehlers Danlos Syndrome. Was genetically diagnosed in January, however I was diagnosed to have EDS over 30 years ago using the Beighton scale measurement.

Me with the dream of being an agroecologist and farmer 🫠💀

No I don't

I've been struggling for 20 years to figure out what was going on. I've been "dx" with so many other things bc they couldn't figure out what was going on. This checks all the boxes!

Yas

Yes I am a 48 yr old male with Arthochalisa Ehlers Danlos. How ever I am the only person in our family from either Mother's or Father's side that has it. My brother whom is in U.S. Military doesn't have it or any symptoms of it. Thank u again for making these videos. Stephen Blonder from Middle Tennessee

Do you or anyone you know have aEDS? How and when were you diagnosed?

I have an HSD diagnosis and it was incredibly difficult to get. When i finally got to meet with a geneticist, he told me that most of them don't even bother accepting appointments for HSD because there's so little that they can do. He told me, and I'll remember this quote for the rest of my life, "unfortunately, the only answer anyone really has right now is hurry up and suffer." I've been fighting myself for years about it but now I'm at the point where I'm going to start looking into disability. Even after a year of working with Physical Therapy, one or two missed appointments, and I'm locked to the bed or just aching all day. I'm 24 and i feep like I'm in my 70's.

I was just diagnosed with hypermobile EDS about a month ago and the more I learn about EDS, the more convinced I am that I have the vascular type. I did read its rare but u may have more than one type if both parents pass on a mutation. But I am still new to all of this. My doctor did order more testing but didnt mention any genetic testing. I am very hypermobile, especially in my small joints and have very translucent skin that show my veins everywhere. My hands look very old snd my veins literally bulge like a 90 yr old yet I am only 39. I hemorrhaged when I had my daughter at 22 and lost half the blood in my body. And last year was diagnosed with endometriosis due to a mass(likely endometrioma) rupturing. I presented to the ER with severe pelvic heaviness and pain. Thought I had an impacted bowel as I have terrible GI symptoms every single day. But after abnormal blood work, a ct scan anf then ultrasound was ordered. Was told by the ER dr that I had a mass on my left ovary which is prob what was on the right side and had ruptured, creatinf a large collection of free fluid in my pelvis. Also noted I may have pelvic congestion syndrome due to enlarged bilateral ovarian veins. I bleed and bruise very easy. And always have a very low platelet count along with high mean platelet volume. All which are indicated in vascular eds. How do I ask my dr for genetic testing to see if its vEDS without offending her??? I assume she looked my chart over and seen the amount of things that may indicate the more serious type... And I keep reading how EDS is so rare in and of itself, vut I know two girls I went to high school with, one of which was a very close friend, who now as adults have been diagnosed with EDS. So its hard to believe some of the stuff I have read. I believe it is common, just rarely diagnosed. Any thoughts??