5 Things To Avoid With Ankylosing Spondylitis | AS Management Tips
Вставка
- Опубліковано 28 тра 2024
- In todays video I'm walking through 5 things to avoid when living with Ankylosing Spondylitis. I'm not a doctor or medical professional but I've lived with AS for over a decade so I'm sharing things that work for me, feel free to take what resonates and leave the rest :)
Ankylosing Spondylitis is a chronic inflammatory disease that primarily affects the spine and sacroiliac joints, causing pain, stiffness, and reduced mobility.
I hope this video is helpful, as always feel free to leave any questions below! And if you have topics you want me to cover in upcoming videos, please let me know!
💗 Follow me on Instagram for tips, inspiration, and lots of flexibility progress photos: @elinafromsweden - / elinafromsweden
⭐ My Favorite Back Pain Products: urlgeni.us/amazon/backpain
Please remember: I'm not a medical professional, just sharing what works for me after living with Ankylosing Spondylitis for 10+ years. Make sure to always consult your doctor! Let's navigate this crazy AS journey together, we got this! 🌟
🌸 Thank you for watching and PLEASE SUBSCRIBE if you are new! 🌸
#ankylosingspondylitis #ankylosing_spondylitis #chronicpain
#3 is crucial! Haven't been on them for years. Such a drain on my own journey. There is a tiny benefit to it for occasionally finding some new ideas but it gets drowned in the immense wave of negativity.
I've started swimming almost daily in 2024 now that we are expecting a child and my wife loves swimming to keep active and it's been great. Was painful and stiff at first but every week I feel more endurance and strength and some days being able to swim powerfully and feel muscles working is incredible for my wellbeing and sense of having control of my body and my condition.
Was diagnosed officially in 2018 and although I lost some mobility due to ankylosing, I still am able to hike, swim and even do major home improvement projects.
Thanks for your video!
Yes it really makes such a difference, doesn’t it! I feel sicker immediately if I read all those negative posts so it has been a game changer!
So glad to hear you got into swimming - I’d love to do that too, but there is no place close to here so stretching and Pilates will have to do for now 😄
Sorry to hear you have some fusion but that’s awesome you’re still able to do the things you want! Way to go! 👏🏻💪🏻
I've lived with AS for over 30 years. Your recommendations are excellent! The only one I can't comment on is participation in online forums. They didn't exist when I was diagnosed and I have never gone there.
Awww thank you so much, I’ll take that as a huge compliment 🌸🩷🫶🏻 and that’s a good thing about the forums, you’re note missing anything 😄 thanks so much for being here, and have a beautiful day!
Thank you for this. As someone who has AS I love the positive/practical content.
Hi! Yay so glad it resonated! And welcome, glad to have you! 🫶🏻
"Energy flows where attention goes" - such a good reminder. So appreciate your positive and determined approach and attitude! You've inspired me on many levels. Thank you for sharing your experience and excellent tips for taking care. I've subscribed and look forward to exploring some of your past yoga instruction as well as future videos. Thank you!
Hi Kimberly! Thank you so much for your sweet words and so glad to have you here 😃💕 Hope you’re having a great weekend 🩷🫶🏻☀️
Thank you so much for yet another very useful and relatable video! Lots of love to you and all the community from Brazil ❤
So glad it resonated! Much love to you! 💕🩷
Elina, I was just diagnosed and am on Humira now. Your channel makes it all less scary and way more manageable !
I’m sorry to hear you were diagnosed but I truly believe it’s 100% possible to live a normal life with the right mindset and approach! 🙌🏻 so glad to hear my channel helps you, just let me know if you have any specific topics you want me to cover! Thanks for being here and you got this!! 💪🏻🙌🏻
Hi Sexy Elina, I was diagnosed with AS a few month ago . Your video makes me positive . And you didn’t seems like 40’s 🥰. Keep it on Elina
Absolutely yes for all things!!! Every day I tell for myself “everything you do it’s good for you, I feel better than yesterday, everything will be okay, you are strong 💪🏻 “ thank you dear Ellina😘
Yes yes yes! We got this 🙌🏻💪🏻
Update: I reread this comment I made, and I have been taking antihistamines for inflammation and it worked! My joint pain went away!
I don’t even talk about how sick and in chronic pain I am. I have literally EVERYTHING and hurt so bad, I don’t drive anymore, call my friends, see anyone, because I hurt so much all over my body.
It started as a child either strep infections, Lyme leg pain (didn’t know it then), fibro, got breast implants and suddenly became extremely ill with a lot of autoimmune diseases and organ failures with cancer, then mold toxicity, moved, got Lyme as a live protozoan that my specialist never saw before, and this allowed four viruses and autoimmune diseases to resurface. I now developed allergies to everything.
This is NOT who I was nor am!
“I’m mad as hell, and I’m not going to take it anymore!”
Hi! Thank you for your message and I’m so so sorry to hear about everything you’ve had to go through 💗😭 it sounds like you’ve had a really tough time 🫶🏻 I’m glad you’re here and I hope you can find some relief! It sounds like you have the right mindset! 💓 let me know if there is anything I can do to help, wishing you lots of healing and recovery 💗
@@elinafromswedenstretching Thank you! I feel better now, and I knew that sounded like be a couple weeks ago. I started taking antihistamines and my joint pain went away! I had developed such bad allergies to outside stuff in March, I can hardly go outside. I’ve never taken antihistamines in my life! Yay!!
Thank you for recommending leaving the forums. I was thinking I needed to but somehow kept going back. I totally agree with too much negativity.
Yesss exactly! We have to be very mindful of what we consume both for our bodies and our minds! 🌸🫶🏻🩷
Positivity is key!
Indeed! 🌸🫶🏻🩷
Do you consider making more "yoga for AS" videos? I am doing the one you have uploaded, in the mornings when I feel stiff, and it helps a lot. I would love to see more! Thanks a lot for your content.
Hi! Yes I’m actually gonna film some for next week! 😃 thank you for the suggestion! 🩷 hope you’re having a beautiful week!
Hi! Just to follow up - I uploaded a class the other day and another one will be uploaded tomorrow morning! 🥰🩷 hope you enjoy! 🩷
Cannot thank you enough for your effort Elina! I have already made the two part of my morning routines! Lots of hugs
This video helped me so much, please keep making more about AS!!! 💜
Yay I’m so glad they’re helpful! 🙌🏻 and yes I will! Let me know if you have any specific topics you want me to cover!
8:17 This is true. I just had xrays done and bloodwork. I was disgnosed with AS 13 years ago, last month I eas told I gave Raynaud's. It seems the pains are more frequent and intense. I had to get off FB group years ago. It was too stressful and depressing.
good for you, Karin! yes the forums are not great in my opinion. at least the ones I've been in, so negative and everyone is stuck in the victim mentality. we do better with a "can do" attitude :) hope you have a great week!
I was recently diagnosed with AS.
Already have very limited movement. Trying to change everything, diet, more exercise, less stress.
They want me to take humira. The insurance world not cover infusions. I'm freaked out about humira side effects, and taking a drug for life, also I don't automatically trust pharma as their track record has been atrocious.
I'll do what i can, stay positive, eat well, exercise, rest, stay calm... but for now i can't accept the meds.
Research in Russia more recently looks promising, maybe that will be better, but definitely not gonna wait for others to fix the problem.
An article on ankylosing spondylitis was published in the journal Nature Medicine by a Russian research group.
We will see, hopefully, if it's good.
Hi! Thank you for being here, welcome! And yesss I know exactly what you mean with not wanting to be on the meds and not trusting Pharma, I actually talked about that a bit in another video so its funny you mention it! Sounds like you're doing everything right, so keep up the good work! Sending you all the love and healing, I hope you feel better soon and get some relief!
@@elinafromswedenstretching
Hey, i wanted to bring that article to your attention to have more eyes on this.
The Nature Medicine journal had an article, but there are numerous others since about this new treatment that seems so far to be more of a cure than anything else before it.
The article is titled:
"Targeted depletion of TRBV9+ T cells as immunotherapy in a patient with ankylosing spondylitis"
There appear to be more than one clinical studies underway, one on Phase 2, and one in Phase 3.
This is excellent news!
There are other articles written on it.
The company developing it is BioCad.
The drug is BCD-180.
It is monoclonal therapy.
Maybe you can find out more, maybe do a video on it?
Hi Elina! Have you tried Cacao chocolates? its been a game changer for me, i can make them at home and it really helps with my cravings for sweets 😋 I source all my ingredients so i know its all organic too 😊 just an idea ❤
hi! ohhhh I'd love the recipe please! :)
I have a friend with A.S. Has anyone had any success with a strict carnivore diet? Dr. Ken Berry, and others, have a lot of videos out on how carbs/sugar cause high glucose/insulin levels, which cause inflammation. She is on a low carb diet, but no luck with it. Mikhaila Peterson was bed ridden and went on carnivore, it worked for her. Not sure what she ha other than inflammation.
hi! I've heard others that had success with carnivore, I think it all really depends. Some people feel great on low/no carb, others on mediterranean, vegan, gluten free, etc. I think the best thing to do is to keep a food diary and try to notice how you feel when you eat a certain way. I personally dont have problems with any specific food from what I can tell, but I do try to eat fairly healthy overall. But its all very individual, so lots of trial and error! I hope your friend feels better! Have a great weekend!
@@elinafromswedenstretching Thanks for the information. That is what she is doing. Lots of experiments with food.
Ive had AS for 9 years and 3 years ago i got a spinal cord injury C6/7 and its sooo hard im 100% wheelchair user 😢
Hi April! I'm so sorry to hear that! what happened to your neck if you dont mind me asking? Thinking of you! Hope you're having a great week so far!
@@elinafromswedenstretching unfortunately I woke up with a stiff neck and panicked when I couldn’t turn it .when I did turn it it sounded like a tree branch broke and I instantly became paralyzed.tried to take a step and fell . At the hospital a mri showed my c6/7 was crushed . They couldn’t figure out what happened. The day before I was fine 😢 . That’s the hardest part about could it happen again. But now that I’m literally quadriplegic I feel my main problem is my AS because my hips are fusing and I couldn’t see my arthritis dr and the dr I seen didn’t want to put me back on Humera so for almost 2 years I got a lot of damage . I’ve been on enbrel for 8 months and it’s helped so much my Sed rate was58 and last blood test it was 21. I just started water therapy and hopefully I can get some movement back .
I was recently diagnosed with AS and doc wants to start me on Humira but Im too scared. Im not sold on the diagnosis since I don't have the known symptoms. They can't figure out what's wrong with me. How did you get tested? What confirmed your diagnosis? Please help.
Hi Monica! yes I think sometimes they have a hard time pinpointing what is going on, so you're not alone! for me, I had severe inflammation in my SI joints with bone marrow edema (fluid in the joints), and I also tested positive for the HLA-B27 gene. how did they diagnose you? I didnt get on Humira for years, so you can always try to avoid it and get on it if you need to down the line. Good luck and please keep me posted how it goes!
@elinafromswedenyoga thank you so much for your response. I was told I had PMR for the last 1 1/2 yrs and have been on steriod that long . I'm also on methotrexate. The Inflammation markers are not going down so they are trying another approach to get me off the steriod. I am waiting on bone density results and meeting with the doc later in May to address my doubts and what's next. Also my HLA-27 is negative but I hear that is common with AS. It's an interesting journey, I will post again when I have more info.
@@monicacastro3736 oh wow! That’s a lot! I’ll be thinking of you, please keep me posted! 💗
What is the effect of growth hormone use on the disease?
Hmmm I have no idea!
I am on biologics and really want to come off because of the major side effects attached, is anyone here going more the natural route and exercise?
Hi Michelle! I'm not on any medication, I was on Humira for a few months but it was years ago now. I do really well with exercise, hydration, and nutrition! You can always give it a try and the medication is always there if you need it. I feel like life with AS is a lot about trial and error with everything :) Good luck and please let me know how it goes!
Thank you so much, I have stopped.
On an anti-inflammatory diet, exercise and taking a few supplements. The first few days was hard but now I feel absolutely great. The only aches is from exercising 😂
Hahaha yay! Thats the best kind of pain 😂🫶🏻
You forgot diet.
yes diet is important too, thank you! I mention it briefly in this video but I talk more about in a lot of my other videos - it can be super important! have a greta weekend!
What diet are you on? I was recently diagnosed.
@Tinyteacher1111 Zero synthetic materials. All God given food boiled or air fried.
@@Tinyteacher1111Try alkaline based !
@@izvin7549 Thanks! I heard that!
My Neck is stff fuse not moving left right
im so sorry to hear that! did it fuse completely? sending you so much love!
I have AS
Hi Connie! I'm sorry to hear that! How long have you had it?
@@elinafromswedenstretching 2006 I was diagnosed
Madam Ankolosing spondylites pateint
hi there! welcome!
Elina sure you are AS? How are you imagistic results? Exept for sacroiliac i bet you have nit any s pine fusion!! You have too much mobility!! Your inflamation test are low i believe.... in women manifest different!!
Hi! I don’t have any fusion! I have degenerative changes showing in my MRIs (in my low back, neck and si joints) but no fusion 🙌🏻 And I have worked on my mobility EVERY single day for 4 years now - I couldn’t move before! So it’s been lots and lots of hard work to get to where I am! 😆 but yes it definitely manifests differently in different people and some people fuse faster than others, and it also can depend a lot of lifestyle etc! How about you? Do you have fusion in your imaging? Hope you’re having a great weekend! 🌸☀️
Poor posture
hi! do you mean you have poor posture?