Q&A | ANKYLOSING SPONDYLITIS!
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- Опубликовано: 21 окт 2024
- Hi guys!
In this video I answer some of your questions about my experience of living with a disease called Ankylosing Spondylitis (also know as Axial Spondyloarthritis). Ankylosing Spondylitis (AS) is an auto-immune disease that causes inflammatory back pain in my spine and sacroiliac joints. If untreated this inflammation can cause me a lot of pain and make it very difficult to walk and carry out daily tasks.
Despite my Ankylosing Spondylitis I am currently travelling the world. Since being diagnosed in September 2017 I have learnt techniques to help my look after my spine and have been put on medication which currently manages the inflammation. I made these videos to help others like me realise that they are not alone. This is because when I was first diagnosed I struggled to find others my age with the disease on social platforms.
Here is the video I made about my AS story. It explains a bit about me, the symptoms I had, and when I was diagnosed:
• ANKYLOSING SPONDYLITIS...
Here is the video I made about COPING WITH PAIN: • TOP TEN TIPS COPING WI...
Here is the video I made about TRAVELLING WITH ANKYLOSING SPONDYLITIS: • TRAVELLING WITH ANKYLO...
DISCLAIMER: I am not a qualified to give medical advice about AS and this is not what I am attempting to do. I am a patient who is blogging about their experience of living with the disease in an attempt to help others. Always check the facts and listen to your medical professionals.
Information about pain and AS:
www.spondyliti...\
www.spondyliti...
painhealth.css...
If you would like to keep up do date with me on social media, then here’s my instagram!
My instagram: @thisizzthelife
I really hope you like the video guys! Please like and subscribe if you did. Also, please feel free to leave any comments or questions below and I will get back to you as soon as I can!
Lots of love,
Izzy xxx
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Thank you for making these videos, I was recently diagnosed with AS. It is very helpful to listen to someone that has the same disease
Hey! I stumbled upon your channel. I have AS, uveitis, and chronic fatigue. I’m so excited to see all these videos :) I was diagnosed with AS this past August, a month before I turned 23. It’s so hard. Not on biologics yet, but I’m taking three other medications!
Hello there. How do you deal with that?
我也是As
My flare-ups vary. I had one that was was totally unmanaged and lasted a year. Then it went to a few months. Then weeks and now I'm at 5 months with my current flare. Ty for your videos
So good to see you and hearing that you are doing well! Hope your travels are going well 🌹 gentle hugs🐾♥️🇨🇦
Thank you so much! ♥️ you too 😘😘 xx
Hey Izzy! Glad to see you continue to do well!! Take care!!
Thanks so much Ronnie! You take care too 😘♥️
Hello there. Seen your comment in one of the comment sections. And I get curious with this Topic. So il watching. Ofcourse, newly subscribing.
Thanks so much for these videos, please keep them coming! I started watching your video about when they changed your naproxen to etoricoxib, because my rheumatologist is doing the same to my medication and I’ve been nothing but worried.
My experience is identical to yours, diagnosed with AS, but I was having awful stomach cramps on 1000mg Naproxen a day even with omeprazole and the past few weeks it’s barely touched the pain.
Do you notice pain in your hands at all? I’ve started noticing my knuckles being red and painful some days.
Can’t beat the moment I got a diagnosis and got told it’s the only arthritis which can be made better with constant movement and exercise. It’ll never go away completely but you can’t let it get you down and it could be worse, so nice seeing how positive and upbeat you can talk about it. ❤️
Dan Thompson Hi Dan,
Thank you so much for your comment! My experience of changing from naproxen to etoricoxib was really positive. I felt the etoricoxib managed my disease far better as well as being more gentle on the stomach due to only targeting the COX-2 enzyme. So hopefully it works better for you too and helps with your stomach issues! Let me know how you go 😊
I personally don’t get a lot of pain in my hands although I may occasionally experience inflammation in joints in fingers and hands during a flare up. However peripheral inflammation in joints is common in AS so I would definitely mention this to your rheumatologist.
So glad you have such a positive upbeat outlook too! Good luck with everything and wishing you all the best!! Xxx
Hey Izzy, thanks for sharing this, we need more awareness of AS! This might be a silly question (I haven't seen your other videos) but have you tried switching up your diet? I've followed the paleo autoimmune approoach and the results have been miraculous so far for my AS. I've made videos about it recently if these help or just send me a message!
Do you know if folks with A.S. get charlie horses in their calves more that one normally would? I've been getting a lot lately upon waking. Thank you.
Another with AS here. And well for me it sounds something more like pre dinosaur. More like the time when more advanced forms of life appeared in the oceans. ^^
Hello! 34 year old mum diagnosed with AS this year, but I've been suffering my entire life. My dr has has never mentioned the stronger NSAID only stated that at this point biologics are my option and referred to them as being "evil". He stated that its my choice and doesnt want to be the one to put me on the biologics. After researching for months, I'm terrified.. but my inflammation has gotten so bad that my quality of life suffers greatly. Please tell more about the medications from your perspective and experience! Thank you, love to you.
Hi, thanks so much for your comment! I’m so glad that you reached out. Is it a rheumatologist or your GP saying this? Do you think it may be worth asking for a second opinion? I’ve spoken to plenty of people that say that biologics have helped them immensely - they definitely have drawbacks in terms of potential side effects, but it’s a decision only you can make.
Here are some more videos where I discuss medication:
This is one that I made when I was on Arcoxia, I explain a bit about how it works and my experience - ruclips.net/video/H0iNYFg39_I/видео.html
...and here’s a more recent update where I talk about my experience of Piroxicam which I’m on now - ruclips.net/video/PR0Zo6SlZYk/видео.html
Really hope that helps a bit and happy to answer any more questions. Sending so much love. Good luck! xxxx♥️
@@ThisIzzTheLifethis is my rheumatologist that I'm speaking of. Thank you for your reply! I'll check out the videos linked :)
Thank you for making this video! I want to ask you about the kind of pain you (and other AS patients) experience; is it a kind of pain that you feel even when you’re at rest? And do you feel more pain if you stretch your body a certain way?
Hi Akira, yep. I definitely experience more pain at rest - movement reduces inflammation so at rest the pain can worsen. Certain positions and stretches can also increase pain, although it’s super important to stretch regularly as it helps keep the spine mobile and reduce inflammation overall. Have you seen a physio to help with stretches? Good luck with everything! ♥️ xxx
@@ThisIzzTheLife Thank you for the reply! I don't have AS but I just wanted to learn more about what it feels like :) You're so strong for doing stretches despite the pain! I really hope you'll be able to manage the symptoms so you can continue traveling comfortably!!
Thank you for this informative video!😊 How are you able to sit this long? I have AS too, using Humira but sitting more than 5 minutes in a row is too painful for me.
Hi Lilian, aw I’m so sorry to hear that. To be honest it depends on the day, sometimes 5 minutes can be really painful but other times I will be able to sit for a couple of hours. I am super active throughout the day though and I do find that helps. Hoping that you find something to help you soon and sending lots of love your way xxx ♥️😘
um not diagnosed or anything yet but i have some what symps of the AS so i would like to know is it good to have the pain medication long term which is basically just painkillers?
I was just diagnosed today with AS. My eye doctor actually was the one who figured it out because my eye is inflamed. I am curious you have ever had that happen? I have been dealing with lower back pain for several years and I was no closer to a diagnose or a way to manage the pain until my eye flared up a few weeks ago.
I have been for a few blood tests, i had test done for rhumatoid arthiritis it came back false negative, my test for imflammation came back positive, my vitamin D came back low. I had xrays in my back/hip and hand they came back as nothing showing, my neck and back came back saying i have arthitis. Its so confusing as my worst pain comes from my back and hip and right down my left leg, although my full body aches, i wake up 2-3 times a night with my forearms, elbow and shoulders aching, my hands ache, wrist, ankles, hip and lower back, And my groin. Also have plantar fascitits in both feet, if i have over done my upper body is tight and i have difficuilty breathing. After work i feel as though i have been hit by a bus, my heels are so so sore. I have been referred to a rhumatalogist but going to be a long wait. Dont know if i can wait months i have been trying to get this sorted for years this is them just doing these tests. I am so down about my day to day life, my pain on a good day is a 7 out of 10 on a bad day 10. So tired and fed up. Take meloxicam and dhyrcodiene, vitamin d, and onzeprole. Does anyone ever expierence pain i there achilles and calfs. Im am so depressed every night i say to myself maybe tomorrow i will feel better, i have been living like this for years now wondering if the next day will be better and it never is. I try to explain to people how sore and fatigued i am but its like they just dont believe me or understand how i am feeling. Often feel like giving up, if it wasnt for my family i would just give up.ARE ALL THESE SYMPTOMS SIMILAR TO HOW OTHER PEOPLE FEEL????
Have you heard of Auto immune protocol/diet. Pls look it up
Thanks for sharing 🌷
nour refaai thank you! Xx
Have you looked into the Paddison Diet? or the Autoimmune protocol?
Great video! I don’t know whether tell my friends about my AS I went to my one of their houses today and I fear what they think I look like. I try and do my exercises and stuff so I don’t look too bad it just makes feel really self conscious because I’m quite slim and tall so my back might be obvious. I might be thinking I look worse than I actually do and I can’t see myself so maybe I’m getting worried unnecessarily about it.
Invictyn thank you! Aw I’m so sorry to hear that. It’s completely your choice if you tell your friends or not.. personally I try to let people close to me know so they can understand and support me if I’m ever struggling. ♥️ I think it’s easy to see flaws in your appearance that others don’t notice and if it’s bothering you then maybe try and bring it up and talk to someone close to you. I’m sure they probably haven’t noticed 😘 sending so much love! Xxx
Ok firstly you have a great channel keep up the good AS info work. So I'm b27 pos and never really knew about AS many years ago but have had a running battle with spine inflammation. I've never had any drugs however I occasionally take a couple of Panamax to get to sleep. So my main strategy is gym workouts designed around heavy weights to build strength around the spine, no compression excercisers, no running, nothing that forces down on the spine like presses, deads, squats. Stuff like decline bench with heavy weights to put a large force to stretch the spine. Chins and heavy pull downs to pull the spin up and build back muscles, supported t bar rows to go deep around the spine. Work the attack bike for 30 min for cardio. Cut down on sugars and fats, these inflame. No running, this compresses down, you need to swim or cycle. I'm alot older and still going strong with no drugs.
Thanks so much for sharing!
@@ThisIzzTheLife you havnt posted for a while, you going well?
Jethro X yes good thanks! Just been very busy! Was travelling for a month over the holidays hence the lack of posts 😊 x
@@ThisIzzTheLife ok cool, good luck to you dude, you've missed all the fire drama and smokey sydney, I had to go rescue a car that was with a mechanic down there so it even effected me sitting in suburbia land lol
I really want you to make a video of how to tell to the people around you, cause even with the evidence no one believes in my pain, they said that I need attention or something like that, and I hate it cause I'm so sad, and also the depression is a symptom of AS which make harder my situation
I have the disease since I was 9 (I'm 18 now) but we know about the AS since 10 months ago and I'm not sure if I can handle all the pain and being 000% supported by my family
And I was thinking of make videos too, but I'm not sure about it yet, I'm from Mexico and here the disease is unknown
You're so beautiful and strong, I really need someone to talk about this cause I'm so stressed and sad
AIRAA DIAZ Hi darling, I can definitely make a video about that.. that’s a great suggestion and something that can be really hard to talk about. Thank you! I’m so sorry to hear that you’re suffering at the moment and you feel that people around you don’t understand. Always here if you feel the need to talk to someone with the disease, sending so much love ♥️♥️♥️xxx
I've had AS now for 25 years, should take nsaid Meloxicam but rarely do. I am quite lazy to exercise but walk lots. A very good diet helps not that I follow one! Magnesium and Zinc help. Do exercise as much as you can (unlike me! ) 🎃
Allotmentals Allotment Thanks so much for your comment! So interesting about Magnesium and Zinc! Good luck with everything 😊♥️ Izzy x
Thank you for sharing about magnesium and zinc. I have AS for 2 years now
Does AS worsen in cold weather
Hey hey! Do you have any close relatives with the disease?
I'm the only one.
That's possible
My As is very bad. When I get flare ups I can hardly move. They can last for 3 or 4 month's. I do experience pain everyday. Currently I am on cosentyx and etoricoxib tablets with omeprazole.
Hi Malcolm, so sorry to hear that you’re not doing good and your flare ups last so long. Do you think a change of medication might help? Sending lots of love and hope that things improve for you. Best wishes xxx♥️😘
@@ThisIzzTheLife Thank you. Sorry for the late reply. Hope you are having a good time in Australia. Your right sitting for long periods does make it worse. 😘 xx
@@ThisIzzTheLife Well done on your channel btw your really confident and brave.
No worries at all! Thank you so much Malcolm, that’s really kind of you to say 😊
same here bro.. i've crohn's disease too.. really fed up
i love your accent , i am a spondywarrior too and it's kiling me
jack axel thank you! Aw I’m so sorry to hear that, sending lots of love and best wishes!! Xx
Should an AS patient (female) get married or not?
I think looking after children can help you stay active.
Is not your fault please read about "spondylitis ankilosant " after 60 years with SA i know what i say....
السلام عليكم ورحمه وبركاته من العراق
In fact you make advertising at travel..... you will not make ankilozing ever....!!! You have other form of spondilartritis !!!
PLEASE DONT USE BIOLOGICS ... i got so sick