Chronic Pain Partners/EDS Awareness, a US-based non-profit 501(c)(3) organization, was created in 2011 to support people with Ehlers-Danlos syndromes. It is an online resource for the Ehlers-Danlos Syndrome community, their caregivers, medical professionals, and everyone interested in learning more about the genetic connective tissue disorder.
Chronic Pain Partners helps create independent, local EDS Support groups, hosts live webinars to help educate our members, caregivers and healthcare providers, and launched a CME program for physicians and another one for nurses, and lately, we have developed towards becoming a multimedia online magazine for people with varying chronic pain conditions, producing high-quality video content and documentary films as well as a monthly newsletter with original content only found on our website!
Website: www.chronicpainpartners.com
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Didn’t mention things like Vascular Compressions and Visceroptosis which are two majorly under-diagnosed GI problems with EDS!
And Biocidin? To remove biofilms?
Dr Tennant is a brilliant, kind, honourable man who never forgot that the responsibility of a true Doctor is to relieve pain. Bless him.
At 7:00 in the presentation it states no new patients, email, etc 💖
Has Dr. Pocinki worked with Ketamine?
I would avoid Cymbalta if you can. I am very sensitive to many meds and Cymbalta put me on the couch for weeks. Plus, trying to get off of them gave me brain shivers - such a strange problem. I felt like I was next to myself and had severe reaction. I was going off of them very slowly but not slowly enough. It was way back in 2006 so I'm fuzzy on doses. I do know that after I was down to taking 1/4 of the lowest dose, I had to start counting the particles in that and just reducing it by a few weekly. I was on Welbutrin later and it was just as bad to get over. Cymbalta also caused odd reactions in my nose pores and I ended up getting skin cancer in one pore. The pores were not better for 7 years when I had sepsis and was taking masses of antibiotics for that. So odd. I knew people with severe neuropathy that it worked wonders for, but for an antidepressant, not so much.
I’m seeing that new doctors are being taught that EDS is “psychosomatic” which is terribly disheartening. I hope we can get the right training out there for doctors!
kzread.info/dash/bejne/ooKF1a1ygLSyY8Y.html
After watching a few of Dr. Pocinki’s videos, I’ve realized I wasn’t just burned out by working too much, I’m also dealing with dysautonomia. He mentioned in another video that spikes in adrenaline set off migraine in younger women. That plus these vagal gut attacks (chills, cramps, diarrhea) all describe me pretty well. I’m also understanding now why electrolyte drinks like LiquidIV help me so much.
Dr. Burkholder is incredible!
17:57 muscle issues from TMJ 19:09 migraine-type and migraine causes from TMJ 20:30 eyes convergence issue from TMJ re: trigeminal nerve. can cause headache around entire head. 22:15 imaging
In CA
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I need more help on this. I need doctors. Real f****** doctors will look at my diagnosis of ello's downloads correctly without looking at me like my drug addict because how thin I look. I hate being sterile type as a drug addict. When i'm just genetically made like this with e d s
It’s sad I read this comment section for doctors bashing tenant as a quack. They claim he was a pill mill quack. They clearly didn’t listen to his advice
how do laser relieve muscle pain in EDS?
Trude, rather pondering and boring. Lots of people will click off.
Finding even one gene that accounts for some hEDS patients is still super helpful!
Thank you for posting this! This makes a lot of sense. While I was a somewhat anxious child (undiagnosed autism and some dysfunctional home life), often I would not feel well and would have physical symptoms seemingly unconnected to being upset over a transition or trying something new. I had a lot of stomach issues, feeling dizzy or otherwise sick, and would get headaches and vision changes. Adrenaline dumps were a regular occurrence for me. Now, after years of being told I was just anxious, I was just depressed, I was this or that thing and of trying anxiety and depression medication and therapy with very little improvement, I'm finally diagnosed autistic and I'm working towards figuring out whether my lifelong symptoms are hEDS and POTs. Because I can count on one hand the number of times I had panic attacks that were actually about something that I knew of. All the rest of these anxiety/panic attacks mirror POTs symptoms or other dysautonomia type symptoms. And yes, I'm hypermobile and was told I was clumsy and was constantly injuring myself doing nothing. I still do now in my 30's. It all makes sense now!
"Bridezilla." So hilarious! LOL Who can't love her?
Just found this. Can never get enough of Mandy's magnificent musical gift to humanity.
In CA
I have it to. i need a good Dr im not geting help i need 😢
❤ loves😢
This man is an absolute monster. He’s a liar and have ruined my life I’m praying I can get my life back
Thank you for maintaining this posting. It’s as relative today in Nov 2023 as it was in Jun 2016! #MCAS #MCD #Ehlers #EDS #Chronic
Thank you 😢❤
Diane O'Leary is a well informed and very intelligent bioethicist and philosopher who isn't afraid to say it like it is. She basically helped save my sanity from an erroneous diagnosis of psycogenic Conversion Disorder/Functional Neurological Disorder where I was able to prevail long enough to find a very experienced neurologist who changed this diagnosis from functional to organic Paroxysmal Kinesigenic Dyskinesia/Choreoathetosis with parkinsonism and started me on levodopa/carbidoba which is helping me immensely with some of my parkinsonian symptoms. Thank you professor O'Leary, you are an angel!
Wow that is amazing to hear! So happy for you gaining your sanity back and feeling better!! It is so "crazy" being labeled crazy by a dr who you are asking help from... 97% i cant believe that but wow that makes me feel less alone for sure. How dare drs label us with zero grounds to do so. They are all non believers of their own ability to heal.
My Neurologist is the one who diagnosed me with Classical EDS. It shares the same genetic mutation with Osteogenesis which my mom had , however EDS runs in my family also. My niece is also being diagnosed with EDS, she has a genetic appointment next month to confirm what type it is. Her Pediatrician is the one that noticed it in her. He had me go get bloodwork done and I know that it was in 2021 of January that I learned about it. He had the test done and then a while later I had to go back to see him and that’s when I saw it on my paperwork.
Any help for folks that don't have any insurance or support? In Henderson Kentucky??
This information is extremely disturbing because it applies to me in virtually every way, yet I have only chanced upon it, with no medical professional having given me a nudge in this direction. What do I do?
Great video. Dr. Ericson preformed my surgeries back in the early 2000s.
We love Caitlin. She’s an amazing OT and an incredible person. Proud to know that she and I rep the same disorders ❤
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.
About 7-8 minutes into the video Dr. Wolf talks about patients being dismissed. If you are watching this video and feel frustrated because you have experienced this, just know you are not the only one. I was diagnosed with EDS during the 2020 chaos. Basically, the only helpful people were the people at the genetics lab. I have amazing insurance and still ended up spending about $15,000 on various Drs and tests, only to leave with almost zero answers. It can be frustrating, but try and hang in there and remember most of the Drs are just as confused as you are when it comes to EDS and other conditions like it. I am from Massachusetts and was unaware of Dr. Wolf, so I'm happy i stumbled on this video. Thank you for posting it!
Is this current or from 2015. Thank you either way. Well done
Amazing work well done! this is an amazing initiative that should be modeled worldwide for every disease
The only thing that's been able to effectively treat my EDS-related gastroparesis and intestinal dysmotility is Mestinon (Pyridostigmine). No more cramping, bloating, or any of the other stuff now. Thankfully researchers are repurposing older medications like these to help with other issues. This medication has been a miracle for me!
We were allergic to mestinon. If one of us is allergic, we all are usually allergic to a medication including my husband. It’s really weird. I seriously went through a period of time and thought I married my long lost cousin or something. I didn’t of course. The bad genes just lined up.
@@aspenenglish4976 That's too bad that you're among the few people who are allergic to Mestinon. Do either of you have Mast Cell Activation Syndrome (MCAS) as well?
I became interested in EDS when my whole family came down with gastroparesis. My daughter just had her 9th neurosurgery. She’s had so many problems. I wish someone would study our family.
If you ever find a dr or team willing to do a family study please include our family too. Hugs and strength to you.
@@meredithdannelley202 I will! This has become my battle I will fight!
"Just do more Yoga!" - Yeah, I've heard that at least half a dozen times. Also, low-impact aerobics, water aerobics, recumbent bike, isometrics, etc. I literally rolled my eyes when he said, "Yoga".
Absolutely great info you could have been talking about me 😮thank you
I feel heard...
The potential implications of this is so amazing and wonderful! Sign me up!! Thank you to these wonderful scientist that are working on this.
Neuroplasticity and the exercises to use it, is one of the things I used to end MCAS and no longer present as someone who is hyper mobile for 3 years now. It helped end 17 years of fentanyl and morphine for EDS/AS/TC/SM and neuropathy, osteoporosis etc. and now after cannabis medicine has me mostly pain, and pharmaceutical free.
This is so wonderful and a reason for others to have hope!
Thankyou !🙏
Has anyone researched Thoracic Outlet Syndrome (blood vessel being compressed in thoracic region, by various causes). YT channel, TOS MRI has many educational videos about TOS which has been a controversial diagnosis for last 10 yrs. It has lots of symptoms similar to orthostatic intolerance, headaches, painful use of arms and legs. I just discovered the syndrome which does have treatment. They say after treatment, far less pain and many ppl regain function of their limbs again. Please see if it fits anything with you or anyone you know. There is no research literature linking EDS and TOS...I assume because everyone has a hellish time getting diagnosis of either disease.
Has anyone considered blood vessel entrapment in thoracic region (Thoracic Outlet Syndrome) and in lumbar/SI region for the several pain when ppl try to use their limbs? Thoracic Outlet Syndrome is another condition that was controversial for years. Presentations through TOS MRI channel indicate high incidence of TOS in ppl with EDS/HSD...of ones that have been diagnosed with TOS. (Especially if ppl have been clinically diagnosed with nerve entrapments but EMG (nerve tests) were normal. See educational videos on topic.)
Thanks for sharing! I relate a lot to everything in the video. I'm a male with EDS, and I wonder if males are less likely to talk about their experiences and issues with EDS, which is why they almost never appear in videos like these.
There are a lot fewer males diagnosed with EDS than females. This is also pretty common in autoimmune disorders as well that more women get them than men. I have a theory that since women have more frail tissues in general due to the effects of estrogen and less testosterone that the threshold of having issues is reached sooner in women with EDS. Perhaps the genetics of women makes them predisposed too? But yes I would also surmise that males afflicted (although fewer of them have it), would also be more hesitant to talk about it. I also would be curious to know if Marfan's syndrome occurs equally in males and females...it has so many similarities to EDS and is also a genetic connective tissue disorder?
I can relate to this story a lot. Thanks for sharing this! Hopefully you'll have at least one male in this EDS series, since the male perspective of EDS is underrepresented. Males have the exact same genetic chances to get EDS, although they're able to mask or compensate for some of the effects of EDS and are less likely to be diagnosed.
Yes very uncommon journey of being diagnosed so fast