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Super vague and generic. A bit of a waste of time.

Hot bath is help for pain at list for cople of day without having any medication.

Thank you! Great presentation… I’m 59 and have suffered with extreme spine pain since I was 29. I herniated 2 lumbar discs during a vehicle extrication call (I was firefighter and experienced failure of our “jaws of life”). After surgery, pain continued and then SI joint pain started up. The “pain management” doc at our local hospital just kept prescribing pain meds and was not an advocate of PT. (Dr. Xxxxxxxxx” from St. Barnabas in NJ). btw - he just disappeared during the early Covid days and left patients hanging w/o medication access! After years of the progression of pain, deformity began (the typical kyphosis you see when Googling “AS”), I finally went to HSS in NYC after getting increasingly worse. The orthopedic doc saw me for 10 seconds and said “I want to see imaging”, but I’m 99% certain you have something called Ankylosing…” he was dead on correct. That was 10 years ago. It was AS and PSA. (I’m HLA B27 negative) The visible deformity and degeneration, along with incredible pain has RAPIDLY progressed in those years. I now have intense pain 24x7 (screaming pain) and. I’ve gone through Humira / Remicade / Cosentyx / Simponi / Taltz / and 3 others I can’t recall. No help! I had bariatric surgery years ago, after gaining weight after decreasing activity. So, now I cannot take oral NSAIDs. I now require a cane or walker to walk around the house, stairs are nearly impossible and the kyphosis is so bad that I cannot see anything other than the ground at my feet. My spine is fused from cervical to lower lumbar and have “bamboo spine”. Without using a cane or walker or something to hold onto, I fall right over. My neck and shoulders are so brutally painful to move that everyone in the room can hear the loud “cracking” whenever I move at all. My hips are brutal, knees are heavily involved and my when inflamed IF I can even get them on. I lost all of my teeth, either due to a meds or AS? On top of everything else, now it’s extremely difficult (nearly impossible and a 2+ hour drive every 30 days) to get pain meds prescribed because of the “opiod crisis”. Without the pain meds, life is impossible. But the government seems to care not a bit as they restrict more and more. But fentanyl comes pouring in over the open borders with no actions taken. 😠

Luv him in X-Men seems like a great person

I also have AS, used to limp around for about a week because of my SI joint or two whenever I would get a flare-up. Lately it hasn't been too bad but currently going through a bit of a flare-up. My lower ribs are quite tender to pressure and sometimes I have a sharp stinging pain in my lower back when I do certain postures. I'm 40 , been going through this since my late teens of back pain. I was diagnosed at 37, they suspected it in 2018 but i dismissed it because the pain doesn't change in the morning or evening, it's there whenever I take on certain postures etc. I felt nsaids helped reduce the pain but it was still there in certain areas of my body when I would try to get out of bed for example. I try to manage it with exercise in calisthenics and gymnastics with strength training on the rings etc. I also have a bit of scoliosis and try to do a bit of mobility

Totally Trueee 😢😢😢

Thank you!

"Tender Points are stupid." That was hilarious! And I totally agree! The first doctor who "tested" me for fibro - i.e poked me in a bunch of spots with her finger, one of which I said felt good and asked if she could rub a knot out for me - said, "Well, no I guess it's not Fibromyalgia. Maybe it's time for you to accept this as your life and get a rocking chair." I was 32. My husband at the time wanted to punch her in the face. Some doctors don't realize, understand, or care that things that they say hold a lot of weight and can stick with you...there's a reason I still think about that. I was depressed for weeks after that appointment.

Around the 7 minute mark you begin speaking about the subject of Central Sensitization in a way. Anyone with chronic pain would do well for themselves researching that subject. I recommend the channel PAINWeek, and Dr. Forest Tennant. A video titled something like 'chronic pain: a disease of the mind ' is a good one. Quick description is chronic for so long, the well established neural pathway gets used in other ways, resulting in physical pain from stresses and emotional pains. Interesting treatments involved using mirrors and positive talk about treatments and healing.

Can you explain what that is? World online conference? Where? When?

What if its mechanical and inflammatory?

Promo SM 😜

TL;DR: These family of diseases are usually treatable but currently not curable. Managing stress helps psychologically. I think it's always good to remind people that exercising (for these illnesses specifically) reduce illness activity for chemical reasons. I think most people when they hear "exercising helps" or "this task is empowering" they get numbed down by the typical recommendations. Being crude about exercising in this context I think is important, at the risk of being impolite (because most people, me included, are lazy) It's really really important to tell people that exercising is not just a guideline to be healthy, in this context it really reduces pain almost immediately if done correctly. Especially moving around in a swimming pool if the flare up is too strong to bear exercising.

You lost me at 6 minutes. Are these presentations made for clinicians, scientists or for patients? if it is for the latter, then I am saddened to inform you that they are not working. Chemical codes, medical conditions and terminology such as "Anti-CCP", "bDMARDs", "DAS28-ESR≲3.2" "EDIP", "RMD" "Multivariable Models" (to name just a few) means absolutely NOTHING to the average sufferer. As someone who is involved in creating presentations and messaging for public consumption, it pains me (genuinely) to say that this is failing. My guess is that the paucity of comments in most of your videos is testament to that, as most viewers are totally lost! And as someone who not only suffers badly from AS and who also has dietary constraints due to. being on blood thinners, I was particularly enthusiastic to see the title of this piece, and then very disappointed to give it up, as it made no sense to a sufferer, and was primarily an academic presentation - as s the case with most of your videos. PLEASE: Whilst I do appreciate your efforts to disseminate information to sufferers, the overall presentation of your videos is failing somewhat badly. I would be happy to help, if you are open to it..

38:14 Numbness below knees and feet is also possible in Juvenile Ankylosing spondylitis?

I wouldn’t even trust anything that’s just come out or is coming out.

I am too hopefully for curein future 😢😢

Great video ladies,I've been diagnosed with Osteoarthritis many years ago,since then I've been told I suffer with Chronic pain syndrome also. I also suffer with depression and anxiety. What I really wanted to say is,I saw a new Physiotherapist just yesterday. I had so many things regarding pain,I wanted to tell her about. I never got the chance to,she was massaging my neck,because my posture is quite bad,and that's all she spoke about none stop. I didn't get the chance really,and when I was going to interrupt her to tell her,I'd forgotten most of the things I really wanted too go over with her,I get brain fog & that's exactly what happened,I'd completely forgotten the points regarding Chronic pain,I wanted to mention. So when I got home & everything I wanted to go over,was there clear in my mind,anyways I broke down at home and cried,because of this. Know I can't get out of my mind,that's she is just going to think,well I thought he had Chronic pain,he didn't mention it,and I'm knot going to be believed. Would you have any advice,of how to go about things like,getting it across too,I believe I will be seeing her again. Because it was private medical care,it was our NHS Which there is wonderful Doctors and Nurses etc work there,if you have any advice it would be much appreciated. Thank-you also a lot of symptoms I suffer also,sound very much like Spondylitis. Thank-you ❤

I love this rheumatologist and this interview.She is so professional, clear , committed to her work and to her medical speciality! This video is so educational and important for both us ,as AS patients ,and doctors! I wish she was my rheumatologist! I can't wait to listen to more videos from her .Please we need more from your vast knowledge about AS.

Notretmentbutcontrol😅itisincreasingsideeffectsseveralcausesexinternetradiatiosTowersMobiesonecase😅

MotreatmemtsmomedicinestillsinworlbutinIndiaAyurvedmedicinesandmeditations/pranyaminpatanjaliHaridawaryogoHospitialbyyogoguruRamdevmuchremainsincontralcuresspondalytiesinAyurvedically😅

It is a real problem. So much pain and suffering goes undiagnosed. Most doctors don't/won't even diagnose it as a major problem. I also had to find out on my own. Thank you for creating a much needed platform to get the ball rolling. Bringing awareness is a great start. Bravo, 👏👏👏

Good institution

Fantastically helpful, thank you!

Such an interesting talk.The doctor is so honest,professional and clear in her presentation.It's obvious she is a very good rheumatologist and she masters everything related to AS.Unfortunately there are still so many misteries around our disease....I wish my rheumatologist were so professional and committed to her patients as this doctor seems to be

This was very helpful! I am a RN and was recently diagnosed with AS. I have also had Chiari decompression surgery and the theory is that head trauma caused AS. I am still in the process of my workup for the B27 marker, but I was the one who brought AS up to my Rheumatologists. In my research, this video has given me most of the information I needed and clarified a lot for me. I am one of those patients who is seronegative, it was an incidental finding after reviewing medical records and looking for signs after several other autoimmune disorders were ruled out. I wish I could have caught this live, I have so many questions.

Thank you so much for this very informative video of Dr Lee.

When I had my first serious spine flare up I was accused of being mentally ill they took my kids provided no mri or relief I was in a year of hell rejected from mental institutions and arrested trying to get in bcos they had me convinced I was insane. They traumatized my kids Delayed treatment roughed me up just hell on earth I went it alone no due process short version got my kids back got an MRI got simponi and a rheumatologist im telling u after 3 births the pain doesn't touch the spine. The relentless constant pure hell. So I should have had the right to say the lack of sleep the pain the stress made me feel suicidal that does not make me insane nor should it have made me a target or my children targets. They destroyed us. I lost everything. Fortunately I made it thru but how many are caught in a web. Terrifying. It's just brutal trying to explain how much pain you're in and people telling you that you're insane people who are not qualified people who are in the social services setting are not qualified to determine anybody's mental status if they have a pain condition it's important to me that there are probably single moms stuck in mental institutions who have been told that they're mental and they're not not mental at all but when you're dealing with little children especially kids what special needs and you are not getting child support and you are in the most agonizing pain you can possibly be in social services worker should not trump medical and that was what happened in my case I literally went in one day all they would do for me is give me a toradol shot I wasn't even asking for an narcotics just help me please I said this pain makes me want to kill myself then they send the police after me twist my arms behind my back right after I've had a shot to relieve the pain in my spine and trying to put me in a mental institution of course the people at the mental institution are like this woman's not mental you don't just suddenly go mental overnight at 50 thank you anyway for your presentation they're absolutely needs to be more education in the social services area of how badly chronic pain can affect people's lives you don't just get up in the morning and you're ready to go feels like you have your hips nailed to the bed and your spine nail to the bed and then you're carrying a bag of wet cement from your tailbone and you're trying to raise children in a system that just doesn't care about you all they want to do is lock you up in an institution call you insane and take your children off you take everything you've got your home your car your possessions

Remove ALL processed foods and sugar!!!!!

Best diet for autoimmune disease is ketovore!!!!! I was diagnosed with HLA-B27 2 yrs ago im 62 and woke up daily in severe pain. Please do your own research! The doctors don't know you like you do. Keto and carnivore changed my life!!!! Check out Dr Lustig and others who know so much more than a standard American diet nutritionist. Not trying to put her down but PLEASE do your own research. ❤

i dont understand your information, All the people children and adults I know which is about 12 All have severe medical problems now, are debilitated have auto immune disease's and heart conditions... 2 have died, one person 1 week after vaccinated, and another, a month. This is so sick... screw covid and the vaccines and the Doctors that think they are helping people doing this to peoples children... Nothings normal this is terrible.

I want to Physiotherapy for spondylities

What resources are there for being alone with nonfamily or social network

As someone who has spodylitis I learned so much from this. Thank you!

What about LDN low dose naltrexone? Anyone have any experience using is for AS?

Very informative...

I don't have the protein B27 but I definitely have spondyloarthritis. It's so horrible this disease and really there is no cure, it'll ruin your body sooner or later. Doctors always said exercise to me, it was the worst thing ever, whenever I've done any exercise I've got another problem and now they still say it, all my joints are in pain, how can I exercise??? Madness

I always find it mad when doctors say I should exercise. okay, how is that possible

What a humble and generous doctor! This is such a rare thing today!❤

Oh please where can i find this Doctor. We are trying to find a diagnosis for my daughter she has a history of JIA, and she has not had any symptoms for years but now i think some kind of form of Jspa is what she has. All her symptoms are in her back , knees , thigh , ankles and feet. Please i need help. DR. Weiss seems wonderful and very knowledgeable.

I would love to hear a follow up from this man since it’s been three years. A lot of good thought provoking info.

This is so outdated.

I was diagnosed with AS last week. I am 39. Been dealing with severe back pain for 5 years. I am disabled.

Promo`SM 😏

thanks a lot

Thank you so much dr. Rosenbaum! I so much appreciate your work towards understanding the condition I also live with. Thank you, thank you!!

Thank you for making this information available

Although it’s been years since this was posted, I really appreciate that it exists. Thank you so much

It would have been helpful if you demonstrated this exercise on land vs. in the water. I can't tell what you are doing.