Dr Neilson discusses EDS Hypermobility and what is needed to change the perception of this condition

PRESENTER: Dr. Derek Neilson MD - Assistant Professor of Human Genetics and Pediatrics at the Cincinnati Children’s Hospital Medical Center. Learn More www.chronicpainpartners.com/ed...

[@mamadusty1111]

I’m newly self diagnosed with EDS I’ve only been researching for a few days…. But everything I’m hearing about the pain associated with EDS is because they thing it’s centralized whatever- desensitization basically from repeated pain or use of pain medication. But has no one considered that it’s related to a disfunction of the type A & B nerves - because the myelin is screwy? Myelin is made from collagen stuff basically. And there are studies showing TNX deficiency in mice caused heightened responses from the A & B type of nerves. I’m putting 2 & 2 together and saying that my nerves are improperly insulated and therefore misfiring. Just some thoughts. Also I haven’t listened to much of this yet- but I was watching the one from children’s hospital and had this pop into my mind. It wouldn’t allow comments so I came here.

[@melloyellow5598]

Thank you to all involved for this and for caring. We DESPERATELY NEED more care.

[@romanloeb5804]

Thanks for the info it helped me a lot I have eds and thanks for awareness

[@justinbrents3110]

have been suffering since 8 years old with depression massive body pain and now I'm 34 years old and finally got diagnosed with EDS can barely walk my insurance is cheap you're not helping for knee and back pain hip ankle elbows and fingers top back

[@holly23tm]

I have hsd. Can an extracorporeal shock wave help me or do it harm me? There are no eds or hsd experts in Korea. Please help. Thank you.

[@PrayItForwardAGAPE]

Thank you Dr Neilson What a great webinar! I learned so much and I dont feel so alone a feeling like a freak!

[@shannongreenwell1278]

From one zebra 🦓 to another one, You’re NOT a Freak! And shame on those people who make you feel like that! Tell them to walk a mile in your joints and then see how they feel! I bet they’ll shut their mouth up!

[@Tcheera]

I have seen nothing but positive results personally and with my cohort in Wisconsin with prolotherapy where the prolotherapy is integrated into the health care system (treated at the medical school, coordinated with PT, doctors sharing notes, etc). I think most setbacks have to do with poor coordination of care rather than the method used -- every patient I know here who has gotten dextrose prolo has experienced nothing but gains. People I know in other states face problems with ignorance, splintered care, PTs and chiropractors giving them misinformation or doing things that are injurious to their joints that increase the hypermobility, doctors prescribing contraindicated medications (NSAIDS) or giving them contraindicated injections (steroids), and just a general lack of support that makes them unable to complete treatment. For an EDS patient we've also found here that the prolotherapy really needs to be done comprehensively. Because we have instability throughout the body, we need stability throughout the body. Tightening just one "really bad" joint inevitably results in failure because laxity elsewhere will either cause the bad joint to be reinjured or will cause the problems to move elsewhere. It's not until the laxity is treated in multiple areas comprehensively that people with EDS typically find relief. When they are not comprehensively treated, they end up in a cycle of failure that ends up being costly to them and frustrating. If more clinics had an approach like Wisconsin where care was integrated and where knowledge of EDS were disseminated to the doctors doing the treatments to help ensure the best outcomes (which let's be honest, this would help with any procedure), I think we would see prolotherapy as not just a great alternative for people with EDS, but it would end up being one of the best practices in care for many. Unfortunately the misconceptions about the procedure and unwillingness for doctors to even try to learn about it or coordinate the care or support it keeps it from being successful -- a self-fulfilling prophecy. I find that unfortunate. As far as the research though, there is more than enough research to show that prolotherapy is highly effective for laxity - better than PT for sure, and far better than things like cortisone which in some places are far too readily given - but as long as doctors and the FDA continue to ignore and disregard the many randomized controlled trials and areas of level I and II research and continue to spread the misinformation to patients that the research doesn't exist, I don't think that this procedure will have a chance of gaining ground. More research is needed with EDS in particular to be sure -- however, that is true of everything medical with relation to EDS, as nothing really has adequate studies for the EDS population as this doctor well knows. I hope these doctors will consider looking more deeply into prolotherapy and PRP rather than just writing them off -- especially since they're willing to recommend such invasive surgeries with surgical screws. Those can be disabling and can never be undone. I would think that for patients who are that desperate, that at the very least prolotherapy -- a far safer and far less invasive procedure -- would be something to consider.

[@cynthiabushey6872]

Where in Wisconsin did you get treatment? My daughter lives there and I could travel if I can't find that in MI. I see this is 4 years ago but I am still interested

[@saludny]

Dr. Neilson... love your explanations and insights on autonomic nerve regulation on the background of connective tissue disorder. looking to tie in contributions of immune cell dysregulation as well.

[@shannongreenwell1278]

I got my Diagnosis in January of this year, I got tested back in 2018-2019 and I have Classical EDS Type two. I have read through Doing my research that exerts are starting to link Epilepsy to EDS, could that be possible? I have both, EDS and Epilepsy. Awesome, there’s a support group here in TN. I would like to get in touch with them! I feel so alone in my battle against this . I have “ blood pooling “ in both of my legs, I don’t look like I have Ankles but “ Cankles” instead.

[@edwardfeeney1258]

Will a EDS program be available in Ct soon I have a severe case EDS with elasticity of the joints Enlarged heart mim muscle mass easy brusing constant pain I go to pain manage

[@shannongreenwell1278]

Ouch! And that’s coming from another person who has EDS!

[@mrsarcade]

Could someone help me please. I just see purple streaks and not the text.

[@b_uppy]

Same thing append with Crohns disease.

[@cesardelcarpionavarro2346]

Dr nelsor or any people that work with he , I have enherls danlos suptipe 3, and my questión is : enherls danlos have a cure with a genétic therapy??, thanks because , my tratment is abrir stem cells and factor rich of plasma, i fgthing with osteoporosis and arthrosis

[@mamadusty1111]

Is it possible for medical school graduates to be so stupid as to NOT expect loose joints, joints moving farther than they should over & over daily, alone could cause most of the co-morbidities? It’s not only bcuz of the collagen it’s stretch signaling that stresses the immune system. It’s extra stretchy blood vessels that cause low blood pressure that then kicks us into adrenaline surges. That then can cause GI paralysis (no “Rest & digest when you’re in fight or flight), urinary bladder issues (adrenaline can cause urgency)…. The pain, daily frequent small joint extension or subluxation pain can (and often does) lead to hyperalgesia (fibromyalgia, CRPS), as it depletes the patient of endorphins, burning thru more than the body produces, leaving the patient with no endorphins left for mental pain or stress relief/mood stability. This video was posted 9 years ago so I hope science has connected more of the dots on this stuff. I am currently trying to get an appointment in the only pediatric genetics department that I’ve found who handles EDS but they require a written referral from a doctor BUT MY DAUGHTERS DRS mistakenly referred her to the rheumatology department (even tho they should be able to diagnose hEDS at least) and they don’t handle pediatric EDS, and now that rheumatologist (Dr. Nakita Goswamy) says she won’t refer my daughter bcuz she didn’t think my daughter was hyper mobile! Well that’s cool, based on not examining her, and since Hypermobile EDS doesn’t even have a genetic diagnosis yet, so thanks for that, but also not all Ehlers Danlos patients have hypermobile joints, that’s why they do the genetic testing!!!! Her mother has a diagnosis of classic like EDS which does have a genetic diagnosis and here’s something Dr. Nakita might not understand: THE KID WOULD HAVE THE SAME KIND AS THEIR PARENT so it’s probable that she would have clEDS and that’s not just something that you guess about…. It’s so annoying. That rheumatologist pulled her own skin up on her hand and said that bcuz hers pulled up a lot that meant my daughter didn’t have abnormally stretchy skin…. And she laughed and said she’s more flexible than my daughter so it’s not EDS! Someone maybe should tell Dr. Nikita Goswamy that she has it! I am so tired of being treated like I’m the idiot when dealing with medical professionals. I have read more studies, and understood more about the human body than most of them put together. Bcuz I have a broken body and plenty of time. And I’m motivated by the desire to help my kids suffer less than I have, than I do with this syndrome. It effects the whole body system.

[@gaylecheung3087]

When you’re dislocating all your joints and when you wake up in the morning you got a reset every single joint and these poor people suffer so much and you’re saying it is where we’re talking their birthday hi Wes ones not the flexible ones

[@shannongreenwell1278]

Too bad you can’t come to TN. And go to my church and talk to people about it, or to the bowling alley. I work at one. Can people who have EDS go bowling 🎳? I really enjoy water aerobics and it helps my EDS pain and makes my joints less stiff.

[@cesardelcarpionavarro2346]

Dr nelsor or any people that work with he , I have enherls danlos suptipe 3, and my questión is : enherls danlos have a cure with a genétic therapy??, thanks because , my tratment is abrir stem cells and factor rich of plasma, i fgthing with osteoporosis and arthrosis