The people who accuse EDS patients, are themselves faking the ability to use reasoning and critical thinking skills. They believe that if they can't see it, then it doesn't exist.
What is the treatment for CCI? I apologize if this sounds too negative, but I am tired of being told PT and epidueral, because it doesn't help me with any of my issues. I have cervical kyphosis, with complete reversal of the natural curve. It makes radiculopathy (nerve root pain) worse, it makes stenosis worse, and it makes aethritis worse. I dont know if it is the cause of the extreme burning I get in my spine, but I now have an on and off issue with head drop. I want to do cryotherapy, but since I'm on Medi-cal, I can't.
I am sorry to hear that. Yes, our kinds of neck/spine pain are some of the hardest to treat and we really need more research/options! :( I'll make a video on this soon
I been having horrible neck pain for a couple months now, along with constant pain, gut issues, dizziness, nerve pain, muscle cramping and a bunch of other things. My gp is lost and dosent know what to do, I believe I have this condition based on my own research. What are some things that helped you deal with this?
I feel you my back is very hyoermoble but I didn't dislocat to much when I was a child did gymnastics from 10 on big mistake bits really a condom that got no attention
I agree with the long comment from @/manoo. Also, You don't need to prove anything to uneducated, asinine, ableist people. But well said.💙💙 I just found your page, & it has helped me feel so much less alone today. Your video about family being judgemental really hit home, because no one is there for, at no fault of my mine. I've been watching all of your videos. Your content matters; more importantly, you do. Your suffering is valid, & it's perfectly acceptable to talk about it & whatever else you're going through. Wishing you lesser pain days.💙🧡
I'm sorry to hear that. It's really terrible and we shouldn't have to go through this without adequate support at the end of the tunnel. :( Please reach out if you want to be interviewed for my upcoming audio podcast.
I Did Try To Post A Comment Underneath Of Your Very First Video By Saying I Have Been In That 'Situation' Many Times In The Past To Do With Being 'Bullied' And 'Tormented'. 😔. And I Just Subscribed To You. 😃👍.
I believe you and l believe in you Factitious disorder? I had to ask android what that was.. We make sense of the world with the information we have.. Being told that we are deceptive is unhelpful when we are being honest Skin elasticity can vary with diet/ hydration ,BP, temp, age, etc Dentition has already settled.🎉 Great to see you not using support, although the neck wrap looked comfortable and you made it a lovely fashion accessory Please enjoy fresh vegetables and fruit when possible Warrior spirit detected
You're 100% spot on. Thank you for raising awareness that all forms of EDS and/or associated comorbidities can be fatal and this is seldom, if ever, talked about amongst the medical community. The stress from having 10+ doctors, living in poverty and little support may be fatal in and of itself. ❤
frustratingly there are huge barriers for anyone with significant financial limits to partake in effective treatment measures that actually bring improvements, beyond superficial drugs which backfire and cause damage. we need change.
@@dreamerqueennotunderthemachine what treatment measures bring improvements? My doctor said there is no test for hypermobile EDS. But later I heard that all of the types have hypermobility. I am getting no treatment at all. I have medical insurance.
You’ve always been my rockstar and my hero. Don’t give up my dearest, keep going, keep fighting. Just keep holding on (as much as I have been with my suffering). Faith, hope and love these three remain forever, the greatest being love. Your old fan of Girl Outside, Leanna (“Leo”)
The ombudsman said my work injury couldn't had been that bad as I continued to work for 4wks after. I kept working b/c my family dr refused to sign off on my injury so I could stop working. I did b/c what choice did I have.
You're so sweet Rose to talk bout this. The injuried workers and injuried vets are treated so badly in Canada. The drs twists dx so everything is pre-existing. Or they just refuse to investigate. My ex BIL was injuried at work but also had undx cancer. He was dx so late that a fairly easy to treat cancer when caught early turned into a life threatening event. So many injuried workers scans are manipulated. 5yrs later and I'm still waiting for a dx on my arm. Finally, after I found a file, that I wrote I had symptoms within a wk, she's sending me to a new dr.
I find many drs just going along with the system. There seems to be a real fear of them losing their license if they don't. Many won't stand up to organizations such as WC. They tend to not go against their own so getting a second opinion can be very hard in Canada. Most are not brave.
It’s like your in my thoughts- I was just talking about this with my wife- I think I have may CCI but it’s almost impossible to get diagnosed and drs put it back on you that it may be related to mental health- thank you for your videos and thoughts- it’s appreciated
Yes, so true. It was hard to get my surgery in 2007 as I had a preexisting c2 lesion. I felt so discriminated against for being less than a ideal candidate for surgery. Even tho I had done very well when I had previous surgeries. I lived with mild cord compression for over 10yr before my surgery. They only did my surgery when the compression was severe.
Thank you Rose. You're very knowable and I love learning from you. I'm in Canada also. I had a pretty bad whiplash injury at the end of 2017 so I now worry about CCI. In 2007 I have a two level fused neck c-6 to c-4 so the head/whiplash injury was hard on my brainstem/hindbrain. Yes, the healthcare is not good. Better than nothing but still not good. And medical gaslighting is so bad in Canada. They gaslight and deny the disabled, the injuried workers and now the vAx injuried. So sick and corrupt here.
From the bottom of my heart, I want to thank you for sharing your story and spreading awareness on this platform, in spite of the haters. I'm a fellow sufferer, struggling to find answers. I'm waiting for my test results for EDS. In the meantime, I have symptoms of CCI and have been tentatively diagnosed with CCI in a broad scope. I am on a waitlist to see Dr Bolognese, So that I get a second opinion and more accurate identification on what type of CCI I have. One thing that has helped my quality of life is pursuing NUCCA styled Chiropractic. After the first month of getting adjusted twice a week, I have felt sensations in my limbs that I haven't felt in 3 years.... I forgot what it was like to have control of my limbs, because I spent so long working with impaired functionality and strength. I've had strange issues by entire life, but my life sunk for the worst after my accident in 2019 where I hit my head pretty good on the ground going 25mph. Best of which is on your journey, keep speaking out! Maybe I will also speak out
Thank you so much for sharing your experience. I am so lucky and glad i found your videos. For the last 3 months i've been experiencing dizziness/major brain fog/neck stiffness. I've had 3 major traumatic neck injuries and funny enough 2 months before my symptoms had began was when my 3rd neck injury happened. All neck injuries happened on the same side(left). I have crappy insurance and have told my Primary care doctor that i know it's my neck but all the ctscans have shown are moderate degeneration of 2 discs. I've been put on ambien to help sleep otherwise my brain keeps waking me up every 45 minutes after nodding off. May i ask how high your heart rate got when standing before the beta-blockers? Also do you experience brain fog as well? I can feel stiffness not only where the neck meets the skull but also right above the base of the skull which is very concering. My whole life is now revolved around my condition it sucks so much. Anyway thanks for reading this hope you are doing better friend.
Well done. I’m 61 w EDS. You are beautiful and well spoken and doing a great service explaining well the challenges of EDS. I’m so happy I found you this morning!🙏🏻💫
Have you gotten surgery yet? I’m currently getting Prp but need my upper cervical stabilized with it and am trying to become a patient at centenoschultz. My symptoms are very severe though because my brain stem is severely compressed
@@umars7425 Oh dear, I'm so sorry to hear that - it's so hard. It sounds like you need to find a good neurosurgeon. However, there is the cost factor. It shouldn't be like this! As you know, I am stuck too :( Please connect with me if you would like to share your story, I'm starting a communal blog/podcast soon.
@@dreamerqueennotunderthemachine I’m afraid so but I will exhaust all my options and I am lucky to have financial support through all this. Awesome I will keep you in mind and would love to share my story once I am fully healed as I am in alot of pain and hopefully we can find solutions to this horrible illness. On a side note You might be very right about me needing surgery my symptoms seem to be 10x more severe than the average case but I am still hesitant about it. Your videos gave me a good insight about this and I appreciate them very much and I hope u get the treatment you need 👍
Thanks for making this video. Yes to ending medical gaslighting! ✊✊✊ My doc thought I had CCI and ordered an upright X-ray and a CT where my head was turned side to side. The CT was abnormal but the X-ray was read as normal, and she said I don’t have CCI based on the radiology report, but I am fully bedridden with pain. Do any of these specialists you mentioned look at images without you being a patient?
Hi Rebecca:) This is the first time I've even been asked this question and it's really refreshing, because we with CCI endure so much lack of support, minimization, even disbelief that it is traumatic and breaks us down. First of all, being concerned to learn how to truly support your friend makes you such a good friend for caring! First of all, believing your friend and their experience alone means a lot to them. Supporting them when they are (likely repeatedly) faced with disbelief and medical gaslighting, via emotionally and logically. Learning what you can about CCI will help you to understand their limits and debility and pain they suffer. Finding ways to do things that are minimally exerting but still fun, like watching a movie with them, or if you drive and they're up to it taking them for a short outing to go sit at a beach and watch the sunset, asking them what they feel up to doing and like to do. Thanks for asking <3
Thank you for explaining this! My son’s abilities change from day to day and sometimes from hour to hour. It can really throw people off when they see him in a wheelchair and then he gets up and starts walking! They can’t see his joint pain or his joint subluxations. They can’t see his extreme fatigue or his fluctuating blood pressure. They just see a kid who “looks healthy” using a wheelchair for “no apparent reason”!
My three adult children are all mostly healthy. They have each dealt with anxiety and some depression and I have never ever doubted that they struggle with that. Sadly, my youngest son has multiple invisible disabilities, including hEDS, CCI, Tethered Cord, Dysautonomia, etc., and none of his older siblings support him or even believe him. They have said that he is manipulating people to get what he wants, which is ridiculous, and they have even accused me of faking his diagnoses and using him as a ploy for attention! It is so disheartening and sickening to me, that they won’t look at his medical records or consider the idea that they might be wrong! He is suffering so much, and his older siblings really don’t seem to care. 😢
I am so sorry that's happening to you guys .. that is so incredibly hurtful!! It's cognitive dissonance .. there is some psychology behind it but that does NOT excuse that behavior in fact it could be usd to confront them with a logical reason for their poor behavior. Yeah so not cool. I'm so sorry. Also, sorry I haven't responded to all you comments yet, I have been really ill. I will in time read and respond to all of them <3 Are you on facebook?
and ps. I only hearted it to show emapthy .. not because I like what is happening to you guys .. that pisses me off to no end in the face of how much your son is suffering. I get the suffering and it is beyond rough .. and when people treat us like that in spite, it is beyond cruel.
It's called education and awareness, people are suffering very badly with this, even doing assisted suicide, with a huge lack of help and treatment. It needs to change. However, I think I am wasting my time explaining that to you... you're clearly a low empathy troll who doesn't give a rats ass about much. I wish people like you would have to go through hardships in life and be forced to walk in the shoes of those you turn your nose up at and mock. Gross.
Thank you for describing Cervical Medullary Syndrome. My son’s neurosurgeon said he has this but didn’t explain anything or what to do about it. He said to find a pediatric neurosurgeon because my son is 14. He also diagnosed him with hEDS, OTCS, and CCI. He also has Dysautonomia and other diagnoses.
PS. After advocating for my youngest son for almost 5 years and seeing multiple doctors and specialists, we have multiple diagnoses… but… my own adult children refuse to look at the medical records or talk to the doctors, and have accused me of making it all up… but not before they accused my youngest son of making it all up. It’s really sickening and heartbreaking when your own family members don’t believe what you are going through or support your efforts to get the necessary treatments. Medical gaslighting is a major problem! Gaslighting in general is a horrible thing to do to someone, especially when their problems are so debilitating.
@@jenniferyork7804 Jennifer I hope you found someone who can help your son. I'm currently going through the samething at the moment. It's so heartbreaking to know this illness/disability is so hard to diagnose.
As somebody with Ehler-Danlos in America that's homeless and disabled and "too young and well looking" to receive disabbilities, I'm jealous of her options It's inhumane, it's necessary I wish I could move there, but they already locked down tourism for in those regards Please god let us have our assisted
I am an American and I got disability. It does not go by what you look like. There is a portion where they ask you how you are affected. Don't downplay your symptoms. Tell them what is hard for you. The social security office helped me put the form in. I got it without a lawyer. A lawyer will help you get disability. You do not need to pay them up front. They take a portion of what you are awarded.
You should go on Viva Frei channel and leave a comment. Or send him a message. He was a Canadian lawyer before he went to Florida. He's did a story today on MAID. The company Simons did a commercial on this woman before her assisted death. Sad how MAID is being pushed and almost glorified. She had EDS. I agree also we just want care. Anyways, I thought of you. I had found your channel yrs ago after I had a head/whiplash injury in late 2017. I had a fused neck 10yrs but able to work. WC and it's dr screwed me over. btw, my one dr had to fight back in 2007 to get my surgery as the neurosurgeon believed it was MS. even tho my spine was compressed.
I'm In America Rosie Hi my Friend , and I Did get My Diagnosis for : ( H.E.D.S. / Hypermobile Elhers Danlos Syndrome ) , I'm part of the Community now too. ❤️
I have Type two Classical EDS. And yes, there’s things that can be dangerous with my type of EDS. I can have POTS, Dysautonomia and other complications. I can have problems with my 💜, and other things. Collagen is found all throughout my body, and with it being bad , it can cause other complications. Please people do your research and get educated before making any Assumptions! I can turn my head around like a 🦉, even though I try to refrain from doing that.
Thanks for making this. I think I 120% have this. I had my Chiari decompression surgery 12 yrs ago after my stroke and ever since I’ve felt like a bobble head. My pain management doc I’ve had for 10 years got me on the correct meds finally. Had my life back but then I moved and this new doc took me off of EVERYTHING😢because he says I’m too young. Ugh. So now starting all over again. The pain is unbearable. But I am meeting a new doctor in 2 weeks cause the other one doesn’t believe anything!
You're welcome. sorry I didn't read this earlier, I've been having a rough time myself. I'm sorry you're going through that. It is brutal, I know:( *hugs to you*
You tell’em! That’s so disrespectful and rude of them! They ought to be made to walk in our shoes for a year and then they’ll learn to watch what they say! I have it on paper that I have EDS and I have Epilepsy. BOTH are a chronic illness! So go sit down and hush up rude and disrespectful brat!
I have EDS and I have experience this first handed and yes I burn out very easily ! And I probably get dehydrated easy because I am constantly drinking my water or soda .
Hate is very powerful energy for change. You are very brave for exposing yourself here in RU-vid. Only you can live your life, only you know, and in my own experience is so easy to get addicted to being right, and disconnect. But in my case I walk a long time of decades of self rejection to myself but now not all the times but some times I can feel and say that I respect myself sometimes even I love myself. If I cannot do it how else!!! And fuck the rest of people and their responsibilities and beliefs projected up on us. It is ok to HATE, way better than shame ourselves again. Thanks for the video!!!
