Video

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

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?

Definitely inspiring

The 'show transcript' doesn't work for me. can you fix?

Very interesting session. I have shared to my NASS branch members and to a couple of fb groups.

A very interesting and informative session. Thank you very much indeed.

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.

Completely agree - if people listened earlier - it would save money for the nhs 👍👍👍

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.

Gary is a star

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 👍

Great video, just been told I've got this last month, do you think low testosterone would make this worse?

A really big Thank you to Dr. Roberts, his team, the participants and NASS for this study. Very grateful for these studies.

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.

Thank you Matt and all your team at Loughborough. So much to take in here. 🙏

This is so good. Thank you Matt and the rest of the team at Loughborough for all you are doing for us with AS. 🙏

This is EXACTLY the kind of information I was looking for! Thank you so much.

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?

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.

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?

Thank you guys for this interesting and informative live session. It was much appreciated. 👍

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!

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.

I’ve never heard of this, or been offered it

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

Just got diagnosed last week (FINALLY!) after years of pain and more. THANK YOU FOR POSTING THIS!

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.

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.

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?

It would help to know the name of her medication please

I found teh box breathing almost impossible for more than 2 seconds as it hurts so much

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.

It took me over 20 years to get a diagnosis and I worked in the medical field....

Thank you for bringing awareness to Parliament 🙏

You dont say what medicației helped......

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.

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

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.

Really appreciate this.

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!

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.

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.

Well done Danny. Thank you. 👍

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.

This was really useful, thank you so much. You mentioned about providing some recommended cool bags for travel. Where can I find these please?

I really enjoyed this discussion. Thank you!

What about india?

Is there any guide or book you can refer for these yoga poses?

Thanks for the video. I have an important question. I have never had chicken pox , measles or mumps. I am due to start a biologic adalimumab for my AS in the following weeks. Do you think I should have a vaccine for chicken pox before I start the biologic? My partner is on immunosupressants. I'm worried of what could happen to myself and my partner if I caught chicken pox. My partner did have chicken pox as a child but I never did as previously mentioned. I am having blood tests in a few days but don't know what they are testing for. Thank you. Regards.

Neck ones gd.