National Axial Spondyloarthritis Society
National Axial Spondyloarthritis Society
The National Axial Spondyloarthritis Society is a charity dedicated to providing information and support to people living with axial spondyloarthritis, an inflammatory arthritis of the spine. For more information visit www.nass.co.uk
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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!
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
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
Hi. Yes, it's quite new but hopefully now if it comes up in an appointment you'll know more about 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, 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: kzread.info/head/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
@@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.
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?
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
It would help to know the name of her medication please
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/
I found teh box breathing almost impossible for more than 2 seconds as it hurts so much
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
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.
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
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.
So would have been waiting for a diagnosis is almost 13 years
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
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
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.
I'm so glad! I hope you have some great adventures :D ~Zoë
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.
I'm so glad you've found the exercises helpful, Sammy. We've put all our exercise sessions in one playlist here: kzread.info/head/PLnKgSfibFP6LCVpzAIFTW4ygQsr-3dr6R&si=t2Sn-ZuSBVK-uM-c ~Zoë
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.
You're welcome, I'm glad it was helpful! ~Zoë
This was really useful, thank you so much. You mentioned about providing some recommended cool bags for travel. Where can I find these please?
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
Perfect thank you!
I really enjoyed this discussion. Thank you!
So glad you liked it!
What about india?
Hi, I'd recommend getting in contact with ASWS: asif.info/country/india-asws/ As we're a UK-based organisation we're not familiar with what support is available. I hope they're able to help ~Zoë
Is there any guide or book you can refer for these yoga poses?
Hi, Jamie or Geoff from Yoga for AS may be able to recommend something. You can contact them here: yogaforas.com/ ~Zoë
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.
Hi, we recommend discussing this with your GP, as they'd be the ones to give the vaccine if you need it. From the information here, it appears you'd be eligible for it: www.nhs.uk/vaccinations/chickenpox-vaccine/ Definitely check with your rheumatology team to see if you need to leave a period of time between receiving the vaccine and starting biologics, as some vaccines need that. I hope that's helpful and you get a big improvement with the biologics ~Zoë
@@NASSCentralThanks for your reply and information. I will speak to my rheumatologist and ask before I start. Thanks also for the link. Kind regards.
Neck ones gd.
Has anyone tried weigts and had to recover from nerve pain ?
When wake up scan your own body. Sometomes helps to excersize in shower
How do you use ball without making lower back as wobbly and unstable as the ball?
Hi, I'd recommend speaking to a physiotherapist or Pilates teacher for personalised advice regarding this ~Zoë
S🙂So happy to find this. Deeside water is best for joints. Love sitting ex excersize. Looks enjoyable. Gravity is an issue.
Spondylithis ankilozant affect spine with inflamation and fusion....this is not the case....
Spondilartritis not spondilitis.....much mistakes.....în women is different.....why they like to fake people?....
One morning before diagnosis, i went to get out of bed, but my legs were dead, fell straight on the floor. It took 13 years to diagnose me. 26 it started with me after the birth of my son. I've had nasty thoughts due to pain, but im so glad I didn't do anything stupid. Now im waiting for operations on my back and neck. Good luck to you all. it's an awful illness. 💜💜💜💜💜💜
Been offered tnf alpha inhibitors but terrified of messing with my immune system and activating skin cancer. Anti inflammatories don’t work
Hi, it can be really hard to make these decisions. I’d suggest reading our biologics guidebook and talking through your concerns at your next appointment: nass.co.uk/resource/nass-guide-to-biologic-therapy/ I hope that's helpful ~Zoë
Many thanks Zoe
Same. I’m literally suffering dreadful anxiety as I’m about to start bios
@jules16el50 I hope our videos and resources have been helpful. Please feel free to call our Helpline if you'd like to chat through things: nass.co.uk/contact-us/ ~Zoë
Currently waiting for Biologic treatment on the NHS. Wish me luck.
Good luck! If you need any information or support, please get in touch nass.co.uk/contact-us/ ~Zoë
@@NASSCentral Thank you guys. Kind regards.
I have a AS paisent for 6 years dr give me biology injection but not control haip pain what I do mam my life becomes hell so please what I do I have 28 years old
Hi, I'd recommend speaking to your doctor for advice. They may be able to change your medication or help in another way. I hope it eases up soon ~Zoë
Not understand because of no subtitles available for this video
Hi, you should be able to switch them on in the video settings at the bottom right of the video? I hope that works ~Zoë
Here are a couple of videos you may find useful How to fit exercise into your working day: kzread.info/dash/bejne/a5qemsScprWsoJc.htmlsi=fjrMcBBgfqXzcxYY Working with axial SpA, including your rights: kzread.info/dash/bejne/l5ho0rKmg9u7eKw.htmlsi=QqozU1w5mIZ5D9dE
I have AS, but undiagnosed for three decades, so very recent discovery. What I did to handle office work better was to learn how to type "blind"/"ten fingers". That way; I would not have to constantly look up and down between monitor and keyboard, and could sit more straight. Also, have a desk that can go up and down, so that you can stand at times. Keep you mice towards your body in the middle, between you and the keyboard, instead of having it to the side of the keyboard. Get a good chair that suits you well. Don't skimp on mouse quality, as to not be frustated and tense, because it does respond well to your inputs. Don't lean over something to reach a keyboard or anything else that is a little to far away. Instead, get it closer to you.
Thanks so much for sharing your experiences, this is great advice! ~Zoë
How often should or can we do these exercises? Are they every day or a few times a week?
Hi, I'd recommend speaking to a healthcare professional to check what's best for you. General advice would be 2-3 times per week, as long as it didn't flare symptoms, but please do check with your physio or rheumatology team ~Zoë
@@NASSCentralThank you, Zoe.. Appreciate the response.
Excellent way of explaining this condition.
Thank you ! It is
Thank you ! It is
The problem I have is my hands are swollen alot and seem to go worse when I use my stick. I was wondering whether to get a hiking stick and whether this would be better? I have the one shown that supports hand, but as I say my hand still feels worse
Hi, it might be worth asking to speak to either a Rheumatology Physiotherapist or an Occupational Therapist for personalised advice. Some people do find the walking sticks easier, particular if you use cushioned tape (like the type used on tennis racket handles) to make the grip bigger, or a forearm crutch. But it sounds like it's worth chatting to someone to see what would suit you ~Zoë
Very informative, Thank you. What is the risk of allergic reaction to biologics? I have shown to have bad effects to prednisolone and any hormonal treatment.
Glad it was helpful. The data suggests it's a low risk, but we recommend discussing this with your healthcare professional, as individual risk will vary - especially if you have had reactions to other medications ~Zoë
Really touched me this. I so understand what you are going through and how this affects you physically and psychologically. Its about the same time for me only this past 12 months has been when i got diagnosed. What a silent hell this can be and the pain, dear god levels that are inhumane. It gives me hope to watch these videos as I am not yet on any treatment. Can I ask what treatment you are on?
Heart goes out to you. I know exactly how you feel. Ive lost my job, my life, everything. Im a single parent. Not being believed was the worst. Im so glad you got listened to and diagnosed. What medication are you on? This gives me hope.