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@EmmaRitchie-ji6ih 10 күн бұрын
What was the knee symptoms like?
@amibaka7560 17 күн бұрын
👍👍🙏
@user-jw1fz1dn5t 25 күн бұрын
So much to relate to! It's wild how inflammation affects the whole body and that others with this condition share my comorbids. Really glad they recognised what was up! Just hoping that I can metabolise the biologic medicine well and that im going on the right one. Didnt realise until recently that there were different options.
@MG63 26 күн бұрын
I just followed this class with you guys and I feel such a relief in my body. I feel so relaxed and lighter. The tight muscle cramps in my back are often unbearable with AS. Thank you Ian. Much appreciated. Regards. 👍
@NASSCentral 21 күн бұрын
I'm so pleased to hear it was so helpful! I'll pass this on to Ian, as he'll be delighted. If you'd like to join any of his classes, there's more info on his website: www.ianyoungsomatics.com/
@MG63 21 күн бұрын
@@NASSCentral Thank you. Regards.
@joshspoole Ай бұрын
I have finally got round to watching this, and I am so glad I have! Exceptional work Dr. Roberts and the team. Not only for the level of research you're doing and contribution to the overall support for our patients/members, but also how brilliant you have presented this information for all to understand. Thank you
@NASSCentral Ай бұрын
So glad it was helpful! I'll pass this onto Matt and the team, thanks Josh! ~Zoë
@jeroenvanwesemael8556 Ай бұрын
Dear Zoë, thanks for this. Really helpfull. I still have a question: can overdoing sports trigger a flare as well? I'm building up my sports at the moment and have the feeling that I have more flareups due to the increased activity. If that is the case, pacing myself is probably the best solution?
@NASSCentral Ай бұрын
Hi, do you have access to a physiotherapist through your rheumatologist? I recommend speaking to them for personalised advice, as it will depend on the type of sport, as well as the intensity and frequency that you're doing it. In the meantime, this talk with a researcher has some good advice about finding that right amount of activity: kzbin.info/www/bejne/eIuwqo2Ljc6Ke5Ysi=sHxQkAyq4BDgIJtW I hope that's helpful ~Zoë
@jeroenvanwesemael8556 Ай бұрын
@NASSCentral thanks alot!! Just seen it and it is very interesting indeed. Gives good insights
@igotyoubeat Ай бұрын
Definitely inspiring
@ChangedBaby Ай бұрын
The 'show transcript' doesn't work for me. can you fix?
@NASSCentral Ай бұрын
Hi, I'm afraid we don't have a transcript available for this at the moment. In the meantime, are you able to use the closed captions on the video? ~Zoë
@AnneEdmonds-e1w 2 ай бұрын
Very interesting session. I have shared to my NASS branch members and to a couple of fb groups.
@NASSCentral Ай бұрын
That's wonderful, thanks so much for sharing! ~Zoë
@davidwalters8376 2 ай бұрын
A very interesting and informative session. Thank you very much indeed.
@Ankolysing_Spondylitis 2 ай бұрын
I totally agree with Dr Roberts. I got AS at 17, by 24 my spine had fused. I spent years on NSAIDS and opioids so I could work, it was hard work and I knew doing more than 4 hours a day would damage me, I was a very sick person and my hips were really bad. At 30 I got a dog for companionship and to get me walking. I gradually increased how far I walked every day and in 4 years I was able to jog and walk long distances. Also I was not taking drugs to get through the day. I felt like Forest Gump it was amazing. Now my dog is older and he can`t walk very far so I don`t walk as much, I am back to having bad hips and taking opioids to get by.
@NASSCentral 2 ай бұрын
Thanks so much for sharing, I'm so glad your dog helped you get more active and animals are so important for companionship, aren't they? <3 I always think bending down to feed my cat helps me keep track of my spine stiffness! ~Zoë
@jtfb7208 2 ай бұрын
Completely agree - if people listened earlier - it would save money for the nhs 👍👍👍
@Dale-11 2 ай бұрын
Great video guys! I've been diagnosed about a month now and they have given me some stronger anti-inflammatory tablets morning and night, definitely has helped but my pain in my Achilles is so tender so hard to jog had it for the last 3-4 years no rest or strengthen has helped it go.
@NASSCentral 2 ай бұрын
Hi, sorry to hear that. We have a video about foot and ankle pain that may be helpful: kzbin.info/www/bejne/hnjRm62ChdGqoJIsi=X0kFJ6oqgaDDkpXF If you haven't already, do mention this pain to your rheumatologist as they may be able to offer advice or change medication if it doesn't settle with the new anti-inflammatories. They may also be able to refer you to a rheumatology physiotherapist for personalised advice ~Zoë
@jules16el50 2 ай бұрын
Gary is a star
@Dale-11 2 ай бұрын
I'm 37 male with low score testosterone 8.1 low to high range is 8.8-30, I'm interested to see if I get my score up on trt then see if this helps my AS, I'll will let the comment know in the future if any benefits comes with it 👍
@Dale-11 2 ай бұрын
Great video, just been told I've got this last month, do you think low testosterone would make this worse?
@NASSCentral 2 ай бұрын
Hi, we're not aware of any research on this, but we'd recommend speaking to your GP or rheumatologist for personalised advice ~Zoë
@Dale-11 2 ай бұрын
@@NASSCentral I'll let you know when I start and if any changes 👍
@daviddawson4885 2 ай бұрын
A really big Thank you to Dr. Roberts, his team, the participants and NASS for this study. Very grateful for these studies.
@juliafarrow5234 2 ай бұрын
Really interesting and well presented 👍 I knew from NASS that exercise is very important but it was fascinating to learn the science behind it. I find that I feel better if I walk regularly but worse if I walk too much and now I know why ! Thank you to Matt and all the team for their research.
@asterixmush 2 ай бұрын
Thank you Matt and all your team at Loughborough. So much to take in here. 🙏
@asterixmush 2 ай бұрын
This is so good. Thank you Matt and the rest of the team at Loughborough for all you are doing for us with AS. 🙏
@matteostrobelt6034 2 ай бұрын
This is EXACTLY the kind of information I was looking for! Thank you so much.
@benjyadeola567 2 ай бұрын
I really admire and respect your efforts. I suffer from the same condition in addition to three other chronic conditions. In addution to constant fatique, i find it challenging to sit down for any length of time due to the excruciating pain. Consiquently, i tend to lie down most of the time as a means of managing the pain. Is there any suggestions?
@NASSCentral 2 ай бұрын
Hi, if you haven't already, I'd recommend speaking to your rheumatologist or physiotherapist for personalised advice. It may be that they can recommend something to control the inflammation that's causing your pain, to allow you to be more active. In the meantime, we have some great info on managing pain here: nass.co.uk/about-as/your-space/pain/ I hope that's helpful ~Zoë
@DazLarson 2 ай бұрын
Thank you so much for your tireless work, and for bringing it directly to us! Question: My job requires a lot of walking (approximately 12K steps in a 5-hour shift). I stretch my back a lot when required to bend over (as I cannot squat due to advanced knee arthritis). I rely on a heating pad on my back when I am not in motion at home. It is soothing, but is it actually doing anything helpful? Just wondering if I am doing further harm to my spine (many bone spurs throughout-“facet syndrome” and diagnosis axial spondyloarthritis) since I am doing more than the amount of walking your research shows is helpful.
@NASSCentral 2 ай бұрын
Hi, so sorry if I've misunderstood your question. Were you asking whether the heating pad is helpful? They can be really helpful for pain relief and relaxing muscles. As long as your skin is protected, they shouldn't do any harm. Also, doing more than the amount of walking the research showed was helpful shouldn't do any harm. But as Matt shared, it may be helpful to add in other activities outside of work, like gentle stretches, to help balance things out. I hope that's helpful ~Zoë
@MissMoToYou 2 ай бұрын
My blood sugers are all over the place, lowest 4.7-highest 11.2... It's very frustrating. Is this normal for someone with ankylosing spondylitis?
@MissMoToYou 2 ай бұрын
Walking is a problem for me as I fractured my T11 and it's a wedge fracture, pushing everything forward in my stomach, it's so bad it's affecting my stomach, bowels ect. I'm waiting to have an operation now as it's causing so many issues on top of everything else. What's your thoughts on this please?
@NASSCentral 2 ай бұрын
Hi, I recommend speaking to your healthcare professional about this. We're not aware of a link, but it's best to get personalised advice ~Zoë
@NASSCentral 2 ай бұрын
Hi, I'm afraid as a Research Scientist Matt wouldn't be able to advise on this. I recommend asking for a referral to physiotherapy, as they should be able to advise what activities are going to be helpful for you to do and safe while waiting for surgery ~Zoë
@MissMoToYou 2 ай бұрын
@@NASSCentral Thank you x
@MissMoToYou 2 ай бұрын
@@NASSCentral Thank you again for getting back to me x
@MG63 2 ай бұрын
Thank you guys for this interesting and informative live session. It was much appreciated. 👍
@NASSCentral 2 ай бұрын
So glad it was helpful! ~Zoë
@jacquesd5781 3 ай бұрын
Very helpful! Will buy a TENS machine to try this, my spondyloarthritis has plagued my life for almost 4 years now, and has severely affected my quality of life, physically and psychologically. I hope it will help, fingers crossed!
@NASSCentral 3 ай бұрын
Really glad the video was helpful and I hope the TENS machine helps. Sometimes a few small things like that can make a big difference. We also have these videos on managing pain and flares, which may be useful if you've not seen them before: nass.co.uk/about-as/your-space/ ~Zoë
@Razproductions 3 ай бұрын
Great video from Zoe as always. Sadly I’ve found that some rheumatologist are better than others. If you have one that understands and cares they will champion you. If you don’t, use PALS.
@cazicature 3 ай бұрын
I’ve never heard of this, or been offered it
@NASSCentral 3 ай бұрын
Hi. Yes, it's quite new but hopefully now if it comes up in an appointment you'll know more about it
@kirstm.2215 3 ай бұрын
I'm 41 had it for years but only recently diagnosed. Exercise makes it hurt more walking puts me in agony. Good add tho very funny
@billybatson22 3 ай бұрын
Just got diagnosed last week (FINALLY!) after years of pain and more. THANK YOU FOR POSTING THIS!
@hammycats6919 3 ай бұрын
I have axial and pheriphral ax spa. The pain is horrendous. Also gives me stomach issues and pelvic pain. I get it in the ribcage too. My legs also go numb, but up to now numbness lasts a few minutes at a time.
@alisalavine1052 3 ай бұрын
I would really like to see exercises and stretches that are tailored to people who have sustained a lot of damage over the years from AS. All the videos I find are for young people who have little damage.
@NASSCentral 3 ай бұрын
Hi, thanks so much for your feedback, we'll definitely include more of these. The Somatic Movement and Tai Chi taster classes in our exercise playlist may be suitable: kzbin.info/aero/PLnKgSfibFP6LCVpzAIFTW4ygQsr-3dr6R&si=uPmGOfxSc9LEGFqf For any exercises lying down, you can lie on a bed rather than a mat on the floor. If there are any particular types of classes you'd like us to run taster sessions on, please feel free to email me at [email protected] Thanks! ~Zoë
@alisalavine1052 3 ай бұрын
@@NASSCentral I took a quick peek at both videos. As I suspected, Tai Chi requires twisting and some rotation that involves the L-spine and pelvis. I'm sure I could modify the movement but I will have to play with the movements to find what works. As for the somatic movement video, lying on the stomach is a huge problem and quite painful in the lumbar spine. Lifting up the upper body puts tremendous strain and causes compression in the L-spine. With someone who has had multiple surgeries in the lumbar and sacral spine as well as decades of misdiagnosis, we tend to have osteoarthritis from repeated flare activity: bone spurs, scar tissue adhesion, ligament thickening, etc. Add active disease which includes bone marrow edema, nerve root compression and ankylosing, I'm sure you can imagine how difficult it is to find a whole routine of movements that don't aggravate my low back. (I have active pathology from T-12 to my hips) I will try altering the Tai Chi movements. Even if I can only add a few minutes of Tai Chi motion it's something new. I wish I had something to recommend for you to run a taster session with. I'm still trying to hobble together for myself by combining physical therapy and strength training exercises. Thank you, for responding to my comment.
@map8667 4 ай бұрын
Hi. I've got my first rheumatology referral coming up in 2 weeks for axial spondyloarthritis. I'm very early on in understanding this condition (in fact I haven't even been formally diagnosed yet!). My GP seems confident that it is AxSpa. I've had the lower back pain around the sacroiliac joints for over a year now, but in recent months I've been having what I'm assuming are flare ups? Insane fatigue, feeling like I'm getting a bad cold, back feels worse than usual, itchy eyes....weird other aches in my knees and feet. Does that sound familiar to anyone?
@NASSCentral 4 ай бұрын
Hi, this does sound similar to axial SpA, so it's good you have a rheumatology appointment to get things assessed. We have some information about what happens at a rheumatology appointment and how to prepare here: www.actonaxialspa.com/category/rheumatology-and-diagnosis/ I hope it's helpful and please do get in touch with our Helpline if you'd like to chat through with anyone: nass.co.uk/contact-us/ ~Zoë
@rgasta7765 4 ай бұрын
It would help to know the name of her medication please
@NASSCentral 4 ай бұрын
Hi, while I cannot give the details of Mel's medication given the personal details of that. The group of medicines referred to are Anti-TNF biologic medication. You can read more about these here: nass.co.uk/managing-my-as/medication/biologic-therapy/ We also have help for making medication decisions here: nass.co.uk/about-as/your-space/medication/
@TheAdventure2 4 ай бұрын
I found teh box breathing almost impossible for more than 2 seconds as it hurts so much
@NASSCentral 4 ай бұрын
Hi Sarah, that can be quite a strong one, so please avoid if it's aggravating the pain. You can always just pick one exercise that feels best and stick with that for a while, so it's not too much. I hope that's helpful ~Zoë
@TheAdventure2 4 ай бұрын
My ribs are the worst for me chest sternum and middle spine. They are so swollen it hurts to breathe most days. This has really helped me whilst lying down thank you zoe and for your support previously. Sarah M.
@NASSCentral 4 ай бұрын
Hi Sarah, I'm so glad it's helpful, as this is such a tricky area of pain to manage. Please do get in touch if you'd like any other advice ~Zoë
@Chelbsn 4 ай бұрын
It took me over 20 years to get a diagnosis and I worked in the medical field....
@YouknowwhereHughgo 4 ай бұрын
Thank you for bringing awareness to Parliament 🙏
@danplugaru8187 5 ай бұрын
You dont say what medicației helped......
@gemmagroves3825 5 ай бұрын
I've been in horrendous pain since 2012 ...2016 I found out hla b27 but sacrum had no inflammation...finally saw the rhumatologist last week mri again Thursday but don't see her for 3 months fo an answer. I cannot describe the hell as this guy is mentioning 😢...the pain like your dying and mental aspect coming from a very sporty life is terrible.
@gemmagroves3825 5 ай бұрын
So would have been waiting for a diagnosis is almost 13 years
@gemmagroves3825 5 ай бұрын
Jeez ive been suffering with horrendous pains in hips back (do have a few herniations and a couole tarlov cysts) hla b27 posative. Have had sooo many a and e visits and hospital stays in orthopaedics , nobody understands the pain 😢 and quality of life especially after years of being sporty , swimming , running , horse riding. Mri 7 years ago showed no inflammation and due for another mri on Thursday. If i could atleast put a name to whats wrong with me and start treatment as this has been going on since i was 30 and 44 in june. Periods are just horrendous now as it adds to the pain. Also need a colonoscopy done again soon and cant bear the thought of sitting in the chair with sturrups , due to the sheer pain. How do you explain to a dr or person who doesnt have to live with that pain. X
@NASSCentral 5 ай бұрын
Sorry to hear that you've been going through all of that. Good luck for your rheumatology appointment. Please do contact our Helpline if there's anything we can help with: nass.co.uk/contact-us/ We also have a section of our website that shares lots of practical tips on managing your symptoms: nass.co.uk/about-as/your-space/ ~Zoë
@Walsallgrower 5 ай бұрын
AS is a terrible disease and can take many years to diagnose, for me it took over 20 years. I was taking Simponi and arcoxia to control my inflammation which worked well. Unfortunately I was diagnosed with cancer in 2021 and all my AS medication was stopped.
@alanwindsor6383 5 ай бұрын
Really appreciate this.
@carolineeising717 5 ай бұрын
Maybe the biggest sign I have this is that I find this ad hilarious lol. But even with a strong family history and decades of back pain, it's so hard to get even rheums to pay attention to it unless you're practically crippled. They don't seem to respond to the niggling, day to day pain, fatigue, and lost sleep, even when it leads to you compromising and compromising and compromising with how you lead your life. I hope there's a similar campaign to raise awareness with medical professionals!
@hellyw89 5 ай бұрын
Thanks for this Zoe, helps me gain some confidence to travel and go on holiday. Now to find some cool bags that fit my meds in.
@NASSCentral 5 ай бұрын
I'm so glad! I hope you have some great adventures :D ~Zoë
@sammyeames2541 5 ай бұрын
Newly diagnosed AS, over a decade suspected… gone from feeling alone and hopeless to being able to achieve your regime. Albeit in 3 stages today but will try and do this every day. Thank you. Sammy, Shropshire.
@NASSCentral 5 ай бұрын
I'm so glad you've found the exercises helpful, Sammy. We've put all our exercise sessions in one playlist here: kzbin.info/aero/PLnKgSfibFP6LCVpzAIFTW4ygQsr-3dr6R&si=t2Sn-ZuSBVK-uM-c ~Zoë
@MG63 5 ай бұрын
Well done Danny. Thank you. 👍
@shawnray270 5 ай бұрын
Thank you so much for the helpful advice...Traveling many hours on a plane can be a real long painful ride... Cheers from the U.S.
@NASSCentral 5 ай бұрын
You're welcome, I'm glad it was helpful! ~Zoë
@somersvacation8985 6 ай бұрын
This was really useful, thank you so much. You mentioned about providing some recommended cool bags for travel. Where can I find these please?
@NASSCentral 5 ай бұрын
So glad it was helpful! Here's our info on cool bags: nass.co.uk/managing-my-as/living-with-as/travelling/ And you can download the slides with the extra links here: nass.co.uk/travelling-with-axial-SpA ~Zoë
@somersvacation8985 5 ай бұрын
Perfect thank you!
@lisak7214 6 ай бұрын
I really enjoyed this discussion. Thank you!
@NASSCentral 6 ай бұрын
So glad you liked it!