Good information but I’m disappointed that the Zebra Club with Jeannie di Bon wasn’t mentioned as a great resource for online pain therapy and the best world wide community available.

*Episode 97,* a helpful intro for medical clinicians.

Very helpful, as a writer I needed tips and infos. Your help me to help my body and my art ;) Thank you!

I agree! In my last 18 year long relationship I was told I was "responsible" for all my symptoms which come under HSD. I was diagnosed one year ago and it explains just about every health problem I've had throughout my life. He is in the medical profession however will not accept my HSD symptoms. So sad.

so what helps with the brain fog?

Excellent podcast. So important to word it so patients don't feel gaslit! This sounds like a mix between Dr Robert Melillo's Melillo method/Brain Balance abd Dr Howard Schubiners Unlearn your pain. I fought this for a while because it feels like we're being blamed & gaslit...because too many doctors have...but it makes perfect sense & the route I'm taking. ❤ Calming down the nervous system then rewiring the brain is a long term commitment and hard work, especially when you're already exhausted, so its hard to hear, but this was also so validating & encouraging. ❤

Thanks a lot for all the effort put in this Podcast. I learned so much and it has been incredibly helpful.

Great Podcast. Very informative and full of good hacks 😊 thanks! I have been taking Omeprazole for the last 5 years, prescribed by a NHS gastroenterologist! I will try to get off of it now !

Thank you so much for this podcast! It helps so much to hear other people reiterate the same things I say to myself and discuss the same experiences with day-to-day life and medical gaslighting. Here's to the next 100 episodes!!

Congratulations ❤️ And I'm seeing that people who struggle with the evil triad are more likely neurodivergent as well!

Thank you so much. I didn’t think about going to the bendybodies website to look up topics. It’s a much easier streamlined way of getting to that information which I may have heard but wanted to review again.

Loved this! Thank you 💗

❤❤❤

Thank you so much for doing this interview!

It was a great privilege to know Dr Abiola on KZbin, he cure me permanently from Herpes with his herbal medicine #drabiola ☺️❤…😊😊

It was a great privilege to know Dr Abiola on KZbin, he cure me permanently from Herpes with his herbal medicine #drabiola ☺️❤…😊😊

Linda, I don't see the diagnosis paper linked in the description. I know you linked your other episodes ...where you might have linked it....but since the 'bandwidth' of ppl with mcas..gives them a certain attention span...being able to see the paper's direct link would be really helpful. If others are like me who go off on other tangents or down rabbit holes....not knowing how or why I got where I ended up....ensures they miss the answer to their main question...like diagnosis criteria paper by Bluestein and Demsey. I also didnt see the Moulderings and Dempsey paper link about learned perceptions that she recommended that ppl read. You mentioned you would link in description. I could have missed them. Is there another place you are putting the references? Someone on another channel used the community tab in YT for the research article references, contact info of guests, etc...instead of leading ppl to fb or a different webpage. Just a thought.

What about a treatment of high dose NAC that is discussed on other channels? Is this a general good overall 'therapy' that would be good in general (like LDN)....but because NAC is OTC until someone finds a prescribing dr.

Meat used to trigger me but I read the treatment by Dr Leonard Weinstock (in his paper), zrtrec antihistimine taken at the same time as Zantac (h1 & h2 blocker) taken at the same time at least 15 minutes before eating....I had no reaction. I've tried the treatment after eating ...after getting the reaction...and the treatment helped to calm the reaction BUT it is way better if I plan ahead and just take the treatment before eating. (Others on other channels have mentioned getting reactions from zrtec or other parts of the stated treatment...so they think they can't take the treatment.....Weinstock says y a differet antihstamine. The very first time I tried the treatment, I used allegra's main ingredient and got a bad reaction. (So at first I thought I couldn't do the treatment, but soon realized that I hadn't taken zrtec. (The researchers suggested the med that works the best for most people....but if any of the antihistamines give a reaction, try a different one.) When I triee the zrtec and zantac, no reaction. Also the fillers can be a problem in any one pill...unfortunately it's a trial n error.

Thank you 💜 This was helpful and informative

Thank you 🙏🏼, this was very helpful.

So fascinating. I have hypermobility. I am being tested for neurodiversity and MCAS! They are all connected. I also just got diagnosed with gastritis. I also may have H. Pylori. H. Pylori can cause gastritis & cause the mast cells to activate, causing hypermobility to be worse. This is where I am. Like you said correlation, not necessarily causation but H. Pylori could be another link! I'm interested in your thoughts on this. Thanks for your podcast ❤

Great video I wish I could see him but I live too far and it’s hard for me to travel with my illness

Hello! Fellow hEDS'er here. You may have already seen this medical presentation regarding sleep by Dr. Alan Pocinki but it was very enlightening to me! It starts 7 minutes in. How I discovered this presentation is I recently had a sleep study and the doctor knew (a little) about Ehlers-Danlos Syndrome and sleep. I was so surprised that EDS could affect sleep so, in doing my own personal research came across this presentation. I received permission to email this link to my sleep doctor and I have a followup appointment in 1 week. I've only implemented the suggestions regarding pain and benedryl 4 days ago and am already feeling calmer, more focused and a bit more energy. Also started with a cpap, but that has been a struggle getting right. Would you like me to keep you posted on how it's going? Perhaps you could forward the link to Cortney Gensemer? I'm also in South Carolina. kzbin.info/www/bejne/rpKVYWujaamohtksi=G26QYIRt8urJ4LDa

Thank you! Was so informative! ❤

What would be a good example of brain fog that describes those symptoms?

I don’t want to be a candle. I can work on it. I don’t understand where where my body is supposed be. It’s most comfortable in awkward positions.

That is a perfect description of what I have been experiencing. I always feel silly describing brain fog to a doctor and saying brain fog is like trying to think through a literal fog. How do you tell someone who doesn't know you from Adam that you're usually MUCH more articulate?

Wonderful, informative video on an important subject. Thank you.

FYI: There are two hypermobility literate Chiropractic drs in Madison, Wisconsin. Two are within one of the largest Chiro groups, Dr Quale and Dr. Kelly Andrews. (Others in the same group have very strict philosophies with regard to hypermobile patients (as in they won't touch them. So the two I have found are vast hypermobile experience.) Other chiro groups may have other literacies, I just dont have experience with them.

This comment doesn't necessarily go with this video but it is about bracing and supports in general...which was the vid title. (Other vids were specific to body part...so couldn't find the 'right' place for comment. With regard to your amazon products page: The problem with listing 'like' bracing that nobody has direct experience with...is that maybe they are knock-off braces and don't actually provide the support needed. It would be great if Corinne could do a follow-up video comparing the cmc braces that amazon shows as well as the cmc braces that Braceability website shows and tells us if the braces actually do what they are supposed to do. Also other brace/support websites list other braces that are supposed to do similar functions (ie they are labeled cmc joint brace) but they look completely different. Some braces seem to also provide support for the first knuckle on the thumb called the MP joint....is this one that characteristically gives hypermobile folks issues? Like if the cmc is irritated then does the MP get irritated too? (Getting irritated might not be the correct terminology...but I don't know what is for when the cmc hurts when writing. Does it shift out of place, does it hyper-extend somehow...what is the correct terminology for why it hurts so much?) So I found quite a comprehensive website with regarding bracing and supports ...havent seen bracelab's wristibility brace but they have the bracelab push metagrip brace, same price as on bracelab website (cheaper than amazon). Rehab-store website. I'm wondering if product would provide the same stability for the cmc joint as well as wrist? www.rehab-store.com/p-aryse-alphawrap-wrist-thumb-and-wrist-wrap.html any idea? Also the foot lady...if she could do a product comparison of typical braces found online for ankle support as well as orthotics. I know this involves purchasing from those sites...but you guys could say something like...we are doing a product comparison on our channel...giving the virtues/cons of each brace and will list your website as part of the vid if you would volunteer to send us the brace (or loan the brace for the sake of the video). I was trying to figure out if there was a support for the ankle that also had arch support built in? On uneven ground, like my backyard...ankle is always rolling to one side or other...though most of the time inappropriate footwear (slides) is the problem...but somehow I do not have a pair of shoes that I can reliably wear where my feet do not start aching within 10 min of wearing them..except for the slides (no arch supports). I havent understood this dynamic and it's been going on for over 8 yrs. Fallen arches, narrow feet and have absolutely no idea if any joints in foot are hypermobile. (It's not like every joint in the body is hypermobile ...just because you have HSD...is it?) As part of the foot lady's vid, I got to realize that the tennis shoes that were just delivered...are probably not good because they bend too much in the toe. Since I have scent intolerances, actually going to the stores is not something I can do. Buying shoes online without trying them on first or even handling them first...is difficult but better than getting triggered by a very scented sales person or other customer. On your amazon product page, you list biofreeze as a good product. For someone who can't tolerate very scented products...Biofreeze having a menthol scent will trigger someone. I have had good experience with US product Walgreens brand Glucosamine Cream with MSM and Arnica....but it does have a light fragrance. Until the cream is thoroughly absorbed by the skin, I have to make sure my hands are as far away from my nose as possible. I've used it on the thumb and cmc joints when extremely sore and the soreness goes away. This video does explain though why PT hasn't often worked for me. Worse yet is doing exercises at home and doing them incorrectly and coming back in unable to move...way less than before. I tend to get gun shy about doing PT exercises at home and then become the bad patient who doesn't get better because she doesn't do her exercises. Kind of a catch 22.... Does anyone have any experience with this SI compression brace www.braceability.com/products/sacroiliac-si-joint-brace?variant=7676729163829 I do not understand what happens biomechanically but when lifting potted plants or carrying heavier objects...something happens in the lumbar and SI areas such that the lower back completely hurts. Normally I get that area adjusted by the chiropractor but this happens so frequently...daily basis...that I can get relief by bending over on my back a 55 gal barrel lying on its side....so I lower myself down to the ground, put my back on the barrel and slide my body over the barrel so that my head is hanging over the other side and my hands are hitting the ground. You can do it on an exercise ball as well. (My ball lost too much air so it's easier to go outside and use the barrel. ) The barrel was to be used as a rain barrel to collect rain water to use in summer for veggie garden. I didn't end up using that particular barrel so it sits in my yard. My cat likes to sit on it when it is upright on it's circular base. I can get a few pops like the chiropractor gets when they adjust...when I bend over the barrel and the back feels better. I don't think it's a full adjustment...but because I pay cash $50 for each 'maintenance' chiropractor appt...it would add up if I had to go daily for whatever thing I did to get the back to hurt. Not sure if the SI brace would help. I was sold an SI rubber-like squishy belt but I could never get it to stay in place. If I bent over which is apparently what you are supposed to use it for...it always moved up my waist and never stayed on my hips.

Thank you so much for this! Love the detail shared of each possible injury. Super helpful!

I’ve never been diagnosed with joint hypermobility, but in the last 3 years, I had a trepeziectomy, and later 4 corner surgery on my right hand. I’ve always been flexible and may have other hypermobility characteristics. Should I pursue a diagnosis for EDS, and if so, what type of specialist should I contact for help?

Mcas seems to have given me ADHD symptoms. All ADHD friends see the characteristics yet the psychiatrist says I dont meet diagnostic criteria as I didnt have as a child. My short term memory has turned to mush. I read things incorrectly and only realize it when I ask a question. My speech has been affected, either wording finding issues or I say things in the wrong order or in ways that it means something completely. I sometimes switch the first letters of the first two words in a sentence....and don't realize it till after it comes out of the mouth. Sometimes in a multi step project, I do things in the wrong order and dont realize it until after I've done it. Almost like putting the putting the horse before the cart and only then realizing that it is wrong. I never had these problems before. My executive functions have been wrong...whereas before Mcas started the immune system go wacky...everything worked in tip top shape.

Way too many ads now. You can save the ads before and after the video so that the content flows from start to finish with no interruptions. It is very distracting having an ad break in every 20 minutes. MCAS gives me short term memory issues...so you break for an ad and by the time the content starts again...I have already forgotten what the subject was before the ad. One channel host explains the ads in beginning and at end so the middle flows completely uninterrupted. He also mentions that he uses the small YT funding just for his administrative costs. I can find the vid host so you can see how he does it and contact him to find out the how to...if you need.

Pls interview Dr Lawrence Afrin and Dr Thorharis Theoharides to do presentations...rather than doing interview style. Concentrating on most comm😅n treatments as well as new upcomming treatments for mcas.

Every breath in pulls my right back ribs and I have pain in every breath.

The anxiety came when my mom started to fail and require much more care from me. Also realized I'm AuDHD. Looking like MCAS as well. Fibromyalgia since 2000 and can't get a doc to pay attention to my issues.

So bendy as a child. Growing pains kept me up at night.

I have a really hard time knowing what is within normal range of motion vs what is out of range? Drs always say...dont go out of range...but I never knew how it what is normal vs not. Has there been a video that an show this? With measurements and angles...so we can actually see what is normal in a non-hypermobile person. Every hypermobile person might have a different ranges but knowing what out of bounds and why it is bad to be out of range.

If medical equipment" not cove under health insurance in US, you can keep all your expenses and receipts and put into the medical expenses deduction portion of your income tax return. Keep track of all co-insurance and the rx costs. All can be deducted through you itemized deductions. (You may just want to take the standard deduction...but others might be able to put it in the taxes. Another option is to try to bill the insurance directly using diagnosis codes the medical folks give.)

I wish you were more specific about Tai Chi. There are lots of different types of tai chi and like yoga, bendy bodies can still get hurt. I practice Qi Gong which is where Tai chi originated from and some of the movements especially the twisting got me into severe pain. It wasn't until I say a movement specialist that I found out what I should and should not do. Most yoga, tai chi and and qi gong teachers don't know how to teach bendies so you need to do the work to figure it out on your own or find a specialist. Please think about having Dr. Mamak Shakib from Irvine Spine & Wellness Center on your podcast.

I disagree with the fish oil. Most know by now it's filled with heavy metals. If you were to do fish oil krill oil is the best option but there are other ways. I like Pureformula.

"Promosm"

I am having a lot of foot and ankle pain, and my podiatrist recommended a stabilizing ankle brace-could you recommend some relatively inexpensive (under $40) brands that are also relatively Comfortable. Tall order! Trying a McDavid brace but found it may be too rigid-or does one need to break it in?

Years before I was diagnosed with hyper mobility, I studied the Alexander Technique, which has been invaluable in teaching proper alignment.

Differences that I found at least with my experience with working with a PT & an OT: my PT tends to be very focused on the least mobility aids possible where my OT has always asked me from a what do you thin you need & why and lets go from there... Best example: i have issues with my hips & knees, but the worst part of my issues is nerve damage cause by a mix of an extra bone in the arch of each foot making it feel like im walking on legos even when sitting. When i said to my PT i was in so much pain i used my cane to push my office chair to the printer at work, i think i need a wheelchair, his response was "why dont we try a walker first?" ... My OT? Yeah that seems like a reasonable thing to look at, lets see pros & cons.

I had no idea I was hyperextending when writing 😮.

Cutting harder vegetables sometimes makes my thumb feel like it's going to snap right out

I have hands like that too and my feet are the same!