This man is a hero! It feels someone finally speaks out what I'm experiencing for the last decade. Nobody seems to take me seriously, I constantly hit the brick wall. 7 nerve blocks, several rehab programs I've experienced, 15 hospitals and 25 therapists I've seen the last 5 years. I'll take this presentation to my GP and medical team. Thank you for posting! Is there a handout available?
Hello Dr. Chopra , I was diagnosed a couple yrs ago with severe EDS, MCAS, Adhesive arachnoiditis cervical and lumbar (also one of the most painful disease known to mankind) , dystonia, Bilateral Ménière’s disease , and approx. 100 Tarlov cysts which only develop on spinal nerve roots. Many of my nerve roots have multiple TC’s on them. With Tarlov cysts ones nerves run through the walls of the cyst while the cysts fill with CSF. Several people in my support group for TC’s also have EDS . Had emergency ACDF surgery in 2018. Woke up at 3 am to my C7 disc herniated flattening the front of my cord I hadn’t had any neck issues prior to the herniation happening. I also have scoliosis and approximately five CSF leaks. 🦓 I am a mega Zebra. 🦓 May God lessen the pain and suffering of many having to go through such difficulties .
Thank you. This great information. I wish my pain doctors would stop thinking that my pain symptoms are in my head or whatever they think, I don't understand why none of them even care to educate themselves about this genetic misserable exsistsnce we must endure. IMPO They clearly are VERY real and 100% linked as you show in this presentation . What I have to cope with is so many physicians saying to me "I'm sorry, I fail to see ANY connection with the spine and gut." If I had a nickle for everytime I have had a dr say that to me I'd be wealthy. Clearly I am not crazy and I can't get ANY pain dr to recoginize the connections. BEYOND FRUSTRATING. Sorry for repeating myself but it feels so wrong that they make me feel like Im waisting my time trying to get them to investigate these issues that confirm to me the connections are clearly related. Finding a doctor that helps and desires to be informed themselves about EDS is nearly impossible. They absolutly don't want to be educated by my knowlege at all in fact they get angry because they are so superior to me because they have a medical degree and I don't. So in their eyes I'm making it all up and seeking out drugs. Nothing could be further from the truth. I an so greatful for the research that is done. I feel so lost. I've able to put my entire life of symtoms and diagnoses into the bottle labeled EDS. Thanks for listening.
About 9. But a Dr didn't even ever suggest it until I was about 57 yrs old. My gut was always bad sensitive. My sensitivities to odors foods everything really starting super young. I was hospitalized at the age 9 for 2 weeks of testing. My Dr due to know what else to consider and told my parents the worst case senerio. Not wise the Dr freaked my poor parents about they thought I was gonnz die and wouldn't leave my side at the hospital. Then 12 then 15 then 17 then 20 back surgery. etc....Hyterecesctomy in my early 30's. thought had leukemia. I was severely enemic. Nutrition wasn't happening. Despite eating. I had duodenal and peptic ulcers. Probably the GERD and gastritis I now have but they didn't know of them then. The issues just kept traveling throughout my body. Honestly about every two years. It was like it went from my stomach to my ovaries to muscles and skin my back. I've always been hypermobile but I do not have sublexes or dislocations. So I obviousdly do not have HDS. That seems to be the only type that Drs seem to know about. Beyond frusting. I now have tripple prolspses etc. Dental issues. Everyone a genetic clarification. Scares me that will give them the excuse to say we can't do that surgury on you because of your gentic results. So my fear its a double edged sword you want the diagnoses what if getting it is worse medically? HUGE FEAR LATERLY! We think its hard now. But what if that occors? What then we live with no help? I'm starting to think I should stop thinking about it and I just must get these dam surgeries. Even if I have to go to different Drs and not give them current records that speak of the search to figure it out. Many Drs go over the fact that my medical records say EDS and never even bring it up So its not like I'd be lying I'd just not be thinking it's the most important thing to figure out. Has anyone else felt they should perhaps do that? I need to get these things fixed. Then maybe get tested? This.is beyond frustrating. Dr after Dr many being worse than the last. I can't get out of the repairs regardless and they have only worsened while trying to sort this out and making it all much progressed and harder for everyone especially me. I'm certain my Drs aren't happy either. It's gonna hurt. The sooner the better not getting younger. I am really starting to feel like it the best solution.
I hv been suffering almost my entire life with a Connective Tissue Disease and you are the first doctor to really understand what l am experiencing. All other doctors l have been to just treat the pain and treat me like an addiction, not fully taking the time to address the root cause of the problem
Very well done! I'm loving the shorter videos. I think they will increase the number of people who watch them when we share. This doctor is hilarious, and so very thorough! I think every single one of us that are looking for connections with symptoms should watch this!
Oh my goodness... He explains it better than I even could myself! The pain is horrific some days, it's mind blowing! None of my doctors really specialize in this, and I think they're learning about it as I do. Somewhat understandable as it's not super common! I had a complex aortic dissection a few years ago and I've been mostly focused on recovering from that. It's been TOUGH. And after now 3+ years, I'm beginning to realize that without the connective tissue disorder, I probably would be back to normal by now! Instead, I feel like my body is crumbling! It feels like it's falling apart a little more each day. But no one else I know has this condition. I have no idea what's is normal and what is not. Videos like this, that talk about it, are the most helpful thing!!! Truly thank you for posting ❤️❤️
My muscle and joint pain are so severe now at age 41 that I'm contemplating ending my life. I used to be super active, working out 5x per week. Now I can barely walk in the morning and I can no longer put on my socks, roll over in bed or get out of the car without severe pain and ROM difficulty. I'm almost done. Sure, opioids relieve pain but who wants to get addicted to them? Not me!
considering changing your diet. Gut health is number one in fixing everything. But you may also want to try an antagonist drug called Low Dose Naltrexone. Like you, being in pain everyday is horrible and you wonder how long will you be able to tolerate the pain. I am almost 61 and have had days that I think of euthanasia but LDN has really saved my life.
I have been suffering from EDS since I was 14. I am now 58 and it hasn't gotten any easier. I take oxycontin and morphine because the combination takes away the anger effect of the oxy. I have been able to get a hold of CBD wax 91% full spectrum and it has helped a lot with the pain. I can cut down on my opiods. instead of three of each 40mg oxy and 30 mg morphine I only take 1 of each a day and I take the CBD wax every couple of hours. I have also had feeling of ending it but Jesus is my answer. Trust in Him especially when the pain is the most severe. He has never left or forsaken me. I can not sleep through the night the pain is too sever but I struggle on. you just do what you have to do to get by. My son is now 14 and he is also suffering with EDS. I dread when he turns 18 and it hits him like a wall but I am here to help him through it. cannabis is a product you need to use. look for a strain that is for chronic pain. a few years ago a friend bought me a small amount and it was the first time I didn't have pain in my body since I was 14. I balled like a baby for hours. it lasted for a few days and then the pain came roaring back with a vengance. I am in a country in asia so I can't use this stuff only the CBD but when I move I will be looking for the wonderful strain that took my pain away and once I find it I will grow it till the Lord returns and enjoy pain free days until then. there are answers out there, you just have to look for them and find them. I had to go through the its all in your head days until I was 29, then the doctors in UBC genetics outpatients clinic in Vancouver BC Canada found out that I had hypermobility EDS didn't exist then as a diagnosis for what I had till many years later. at last now I could tell a doctor to give me pain meds I didn't have to ask for them. it has gotten bad lately but in this asian country the doctors tell me I need oxy and morphine so I am doing OK it only takes the edge off and the price is up to 800usd a month but the Lord has blessed and like I said, I am not wanting to end it all anymore. besides I have to be there for my son now who is going to go through what I did and he wont be going through that alone. you need to start using deca durabolin and human growth hormone to counteract the mess that genetics has done in our bodies. I have had an accident in 2017 that almost killed me and ruined my chest and left knee so I am still recovering from that. I will be doing the growth and deca to see is I can begin working out again. one thing you have to do is not say I can't you have to say I will you must work through the pain believe me if anyone knows it is hard I do but you can do it, you can.
Please don’t give up. I have had the same thoughts. I’d say we all have. Pain is so depressing. Years ago I went on the HCG diet and felt the best I ever have, but it’s so limited and restrictive. But. Worth it. I am beginning it this summer again as most of it is organic vegetables, minimal fruit and one serving of lean protein. Best I ever felt in all this. Life changing. Getting away from sugar and preservatives, processed foods helps so much
This is a fantastic presentation/video! I haven't been diagnosed yet but my rheumatologist has deduced that I have some form of a connective tissue disorder. This video describes the majority of my pain/symptoms/experiences for the past 3 and a half years that my doctors don't always seem to understand. Thank you for this, it has helped me feel validated.
@@BobbyJonesCSF Thank you so much for the info! I will definitely make use of that! I've had such a hard time with particularly pain in the neck/shoulder/thoracic areas, and it's a nightmare finding decent treatment. You explained it so well while still being concise, that's a really impressive skill to have! Thank you again for all of the info, and for making this content available to learn from for free! :)
@@kellyasp52 you need to stop any opioid pain meds at least two weeks before you start low dose Naltrexone.the only side effect I have had is it keeping me awake initially but as you begin to use it your sleep will be so deep. Some people have really vivid dreams but I didn't really have that. But I have insomnia so I really appreciate the deeper sleep! LDN is an antagonist which helps your body to become a balanced again.
19:00 My symptoms reflect your theory about the arm movement resulting in back pain. I've been trying to observe conditions to what may cause it since being diagnosed and recently observed that the smallest arm movements seem to trigger it.
What about for the visceral pain to . This is what is becoming the worst over the other causing mental instability to cope as react to pain meds so have to use the mind but am exhausted.. visceral they think is from my Nurcracker left renal vein compression however this is from head to toe and upper back and adbomen is thr worst Constant feeling of pressure and twisting affecting breathing so co tributes to severe anxiety
I have visceral pain , suspected NC-MALS … upper back pain epigastric, pancreas and liver issues … it’s the worst. Even tho I can no longer have a walk or move my neck the visceral pain makes me bedridden 24/6. I get what your saying 😢
Anyone recommend a good Rhumatologist in UK 🇬🇧 im struggling very much , just awaiting to be diagnosed with Ankylosing Spondylitis as hla b27 and have all symptoms and sacral pain. But just looked on medical patient summary report and says Muskoskeletal Connective Tissue Disease in 2014. I was never told nor referred.
I have symptoms of hypermobility hypermobility I have a every join pain for last 1 year and crackling sound comes to my joints. I am not able to stand for 1 hour so what to do.
Can I have this from open heart surgery. My sternum is under constant pressure. Feels like vice tightening on my sternum. Been almost 4 years since open heart surgery. None of my doctors can give me any help or answers.
This man is a hero! It feels someone finally speaks out what I'm experiencing for the last decade. Nobody seems to take me seriously, I constantly hit the brick wall. 7 nerve blocks, several rehab programs I've experienced, 15 hospitals and 25 therapists I've seen the last 5 years. I'll take this presentation to my GP and medical team. Thank you for posting! Is there a handout available?
Hello Dr. Chopra , I was diagnosed a couple yrs ago with severe EDS, MCAS, Adhesive arachnoiditis cervical and lumbar (also one of the most painful disease known to mankind) , dystonia, Bilateral Ménière’s disease , and approx. 100 Tarlov cysts which only develop on spinal nerve roots. Many of my nerve roots have multiple TC’s on them. With Tarlov cysts ones nerves run through the walls of the cyst while the cysts fill with CSF. Several people in my support group for TC’s also have EDS . Had emergency ACDF surgery in 2018. Woke up at 3 am to my C7 disc herniated flattening the front of my cord I hadn’t had any neck issues prior to the herniation happening. I also have scoliosis and approximately five CSF leaks. 🦓 I am a mega Zebra. 🦓 May God lessen the pain and suffering of many having to go through such difficulties .
Thank you. This great information. I wish my pain doctors would stop thinking that my pain symptoms are in my head or whatever they think, I don't understand why none of them even care to educate themselves about this genetic misserable exsistsnce we must endure. IMPO They clearly are VERY real and 100% linked as you show in this presentation . What I have to cope with is so many physicians saying to me "I'm sorry, I fail to see ANY connection with the spine and gut." If I had a nickle for everytime I have had a dr say that to me I'd be wealthy. Clearly I am not crazy and I can't get ANY pain dr to recoginize the connections. BEYOND FRUSTRATING. Sorry for repeating myself but it feels so wrong that they make me feel like Im waisting my time trying to get them to investigate these issues that confirm to me the connections are clearly related. Finding a doctor that helps and desires to be informed themselves about EDS is nearly impossible. They absolutly don't want to be educated by my knowlege at all in fact they get angry because they are so superior to me because they have a medical degree and I don't. So in their eyes I'm making it all up and seeking out drugs. Nothing could be further from the truth. I an so greatful for the research that is done. I feel so lost. I've able to put my entire life of symtoms and diagnoses into the bottle labeled EDS. Thanks for listening.
At what age did most of your symptoms appear?
About 9. But a Dr didn't even ever suggest it until I was about 57 yrs old.
My gut was always bad sensitive. My sensitivities to odors foods everything really starting super young. I was hospitalized at the age 9 for 2 weeks of testing. My Dr due to know what else to consider and told my parents the worst case senerio. Not wise the Dr freaked my poor parents about they thought I was gonnz die and wouldn't leave my side at the hospital.
Then 12 then 15 then 17 then 20 back surgery. etc....Hyterecesctomy in my early 30's. thought had leukemia. I was severely enemic. Nutrition wasn't happening. Despite eating. I had duodenal and peptic ulcers. Probably the GERD and gastritis I now have but they didn't know of them then.
The issues just kept traveling throughout my body. Honestly about every two years. It was like it went from my stomach to my ovaries to muscles and skin my back. I've always been hypermobile but I do not have sublexes or dislocations. So I obviousdly do not have HDS. That seems to be the only type that Drs seem to know about. Beyond frusting. I now have tripple prolspses etc. Dental issues. Everyone a genetic clarification. Scares me that will give them the excuse to say we can't do that surgury on you because of your gentic results. So my fear its a double edged sword you want the diagnoses what if getting it is worse medically? HUGE FEAR LATERLY!
We think its hard now. But what if that occors? What then we live with no help?
I'm starting to think I should stop thinking about it and I just must get these dam surgeries. Even if I have to go to different Drs and not give them current records that speak of the search to figure it out. Many Drs go over the fact that my medical records say EDS and never even bring it up So its not like I'd be lying I'd just not be thinking it's the most important thing to figure out.
Has anyone else felt they should perhaps do that? I need to get these things fixed. Then maybe get tested? This.is beyond frustrating. Dr after Dr many being worse than the last. I can't get out of the repairs regardless and they have only worsened while trying to sort this out and making it all much progressed and harder for everyone especially me. I'm certain my Drs aren't happy either.
It's gonna hurt. The sooner the better not getting younger. I am really starting to feel like it the best solution.
I hv been suffering almost my entire life with a Connective Tissue Disease and you are the first doctor to really understand what l am experiencing. All other doctors l have been to just treat the pain and treat me like an addiction, not fully taking the time to address the root cause of the problem
Very well done! I'm loving the shorter videos. I think they will increase the number of people who watch them when we share.
This doctor is hilarious, and so very thorough! I think every single one of us that are looking for connections with symptoms should watch this!
He jokes he has EDS... He has no fucking idea the amount of pain and misery it causes.
Oh my goodness... He explains it better than I even could myself! The pain is horrific some days, it's mind blowing! None of my doctors really specialize in this, and I think they're learning about it as I do. Somewhat understandable as it's not super common!
I had a complex aortic dissection a few years ago and I've been mostly focused on recovering from that. It's been TOUGH. And after now 3+ years, I'm beginning to realize that without the connective tissue disorder, I probably would be back to normal by now! Instead, I feel like my body is crumbling! It feels like it's falling apart a little more each day.
But no one else I know has this condition. I have no idea what's is normal and what is not.
Videos like this, that talk about it, are the most helpful thing!!! Truly thank you for posting ❤️❤️
I need someone like this to dig into my problems, as I've been told my symptoms are way too complex to figure out.
My muscle and joint pain are so severe now at age 41 that I'm contemplating ending my life. I used to be super active, working out 5x per week. Now I can barely walk in the morning and I can no longer put on my socks, roll over in bed or get out of the car without severe pain and ROM difficulty. I'm almost done. Sure, opioids relieve pain but who wants to get addicted to them? Not me!
considering changing your diet. Gut health is number one in fixing everything. But you may also want to try an antagonist drug called Low Dose Naltrexone. Like you, being in pain everyday is horrible and you wonder how long will you be able to tolerate the pain. I am almost 61 and have had days that I think of euthanasia but LDN has really saved my life.
I have been suffering from EDS since I was 14. I am now 58 and it hasn't gotten any easier. I take oxycontin and morphine because the combination takes away the anger effect of the oxy. I have been able to get a hold of CBD wax 91% full spectrum and it has helped a lot with the pain. I can cut down on my opiods. instead of three of each 40mg oxy and 30 mg morphine I only take 1 of each a day and I take the CBD wax every couple of hours. I have also had feeling of ending it but Jesus is my answer. Trust in Him especially when the pain is the most severe. He has never left or forsaken me. I can not sleep through the night the pain is too sever but I struggle on. you just do what you have to do to get by. My son is now 14 and he is also suffering with EDS. I dread when he turns 18 and it hits him like a wall but I am here to help him through it. cannabis is a product you need to use. look for a strain that is for chronic pain. a few years ago a friend bought me a small amount and it was the first time I didn't have pain in my body since I was 14. I balled like a baby for hours. it lasted for a few days and then the pain came roaring back with a vengance. I am in a country in asia so I can't use this stuff only the CBD but when I move I will be looking for the wonderful strain that took my pain away and once I find it I will grow it till the Lord returns and enjoy pain free days until then. there are answers out there, you just have to look for them and find them. I had to go through the its all in your head days until I was 29, then the doctors in UBC genetics outpatients clinic in Vancouver BC Canada found out that I had hypermobility EDS didn't exist then as a diagnosis for what I had till many years later. at last now I could tell a doctor to give me pain meds I didn't have to ask for them. it has gotten bad lately but in this asian country the doctors tell me I need oxy and morphine so I am doing OK it only takes the edge off and the price is up to 800usd a month but the Lord has blessed and like I said, I am not wanting to end it all anymore. besides I have to be there for my son now who is going to go through what I did and he wont be going through that alone.
you need to start using deca durabolin and human growth hormone to counteract the mess that genetics has done in our bodies. I have had an accident in 2017 that almost killed me and ruined my chest and left knee so I am still recovering from that. I will be doing the growth and deca to see is I can begin working out again. one thing you have to do is not say I can't you have to say I will you must work through the pain believe me if anyone knows it is hard I do but you can do it, you can.
@@kusnezoff8705 what strain and how do u get hgh
You don't have to be addicted to opioids. Some people really need them. I hope you're okay.
Please don’t give up. I have had the same thoughts. I’d say we all have. Pain is so depressing. Years ago I went on the HCG diet and felt the best I ever have, but it’s so limited and restrictive. But. Worth it. I am beginning it this summer again as most of it is organic vegetables, minimal fruit and one serving of lean protein. Best I ever felt in all this. Life changing.
Getting away from sugar and preservatives, processed foods helps so much
This is a fantastic presentation/video! I haven't been diagnosed yet but my rheumatologist has deduced that I have some form of a connective tissue disorder. This video describes the majority of my pain/symptoms/experiences for the past 3 and a half years that my doctors don't always seem to understand. Thank you for this, it has helped me feel validated.
There need to be more doctors like him
I wish I could make all of my doctors watch this!
Refer them to our page or website! bobbyjonescsf.org :)
@@BobbyJonesCSF Thank you so much for the info! I will definitely make use of that! I've had such a hard time with particularly pain in the neck/shoulder/thoracic areas, and it's a nightmare finding decent treatment. You explained it so well while still being concise, that's a really impressive skill to have! Thank you again for all of the info, and for making this content available to learn from for free! :)
I have been on low dose Naltrexone for one month for my autoimmune diseases and it is helping immensely.
What are the side effects?
@@kellyasp52 you need to stop any opioid pain meds at least two weeks before you start low dose Naltrexone.the only side effect I have had is it keeping me awake initially but as you begin to use it your sleep will be so deep. Some people have really vivid dreams but I didn't really have that. But I have insomnia so I really appreciate the deeper sleep! LDN is an antagonist which helps your body to become a balanced again.
Thank you for posting. Also look at RCCS Gene Theory.
19:00 My symptoms reflect your theory about the arm movement resulting in back pain. I've been trying to observe conditions to what may cause it since being diagnosed and recently observed that the smallest arm movements seem to trigger it.
I need you as my doctor!
What about for the visceral pain to . This is what is becoming the worst over the other causing mental instability to cope as react to pain meds so have to use the mind but am exhausted.. visceral they think is from my Nurcracker left renal vein compression however this is from head to toe and upper back and adbomen is thr worst
Constant feeling of pressure and twisting affecting breathing so co tributes to severe anxiety
I have visceral pain , suspected NC-MALS … upper back pain epigastric, pancreas and liver issues … it’s the worst. Even tho I can no longer have a walk or move my neck the visceral pain makes me bedridden 24/6. I get what your saying 😢
Anyone recommend a good Rhumatologist in UK 🇬🇧 im struggling very much , just awaiting to be diagnosed with Ankylosing Spondylitis as hla b27 and have all symptoms and sacral pain. But just looked on medical patient summary report and says Muskoskeletal Connective Tissue Disease in 2014. I was never told nor referred.
I have symptoms of hypermobility hypermobility I have a every join pain for last 1 year and crackling sound comes to my joints. I am not able to stand for 1 hour so what to do.
Can I have this from open heart surgery. My sternum is under constant pressure. Feels like vice tightening on my sternum. Been almost 4 years since open heart surgery. None of my doctors can give me any help or answers.
Hello, can you please referral an EDS doctor and physical therapist in tampa FL??
Aaron L. Mattes. You will not regret it.
I hate to sound like jan brady but all I ever see or hear are EDS EDS never ever sticklers syndrome which i live with daily