Ankylosing Spondylitis, in a flare up.
Вставка
- Опубліковано 28 жов 2022
- Update on how I am feeling with my disease active and in a flare up.
#Genxwithas, #ankylosingspondylitis #GenXwithAnkylosingSpondylitis
A vlog on a GenX'r with Ankylosing Spondylitis. I will show good days and bad days. Some of the daily struggles, getting diagnosed properly and how I try to cope with this miserable disease.
Spondylitis Association of America
spondylitis.org/
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You can contact me via email genxwithas@gmail.com
Hello. 👋 I also have AS. Took me 15-20 yrs. to get a diagnosis. I appreciate your video because I am really struggling myself also.
Just went through a bad flare from being sick with a cold. It turned into pneumonia with so much inflammation in my ears, sinuses, pleurisy and uveitis.
Needless to say it took me many weeks to recover.
I live in constant pain now, as many AS’ers do.
Just know that you aren’t alone. ❤
I sincerely hope that you are out of the flare. I had one last 4 years straight in my thirties but seem to be somewhat better in my fifties. I know exactly the flu symptoms ( still get that, and short term flares) and not being able to sit or stand long and the fatigue. I felt for you in this video, and I wish that I could have given you a hug. Take care. You are not alone.
Thank you for the reply. Some days are better than others. I’m finally able to make an update video soon to explain what has transpired since my last video.
Thank you for sharing, my flare up are slowly starting to get worse, but not to the extent that you're enduring. Your video was a good refresher to understand what is going on in my body.
Thank you for sharing this; i’m 42 with the same diagnosis; i can’t look at myself in the mirror anymore as i feel like my neck is coming out of my chest it’s so hunched. Praying for you. X
That’s for the comment. This can be a very cruel disease. Keep fighting!
@@genxwithas you too! There has to be a reason why we fight these battles i’m not sure what it is but i try to have faith that one day i’ll learn why!! You are not alone we’re all in this boat and we can all empathise and sympathise with each other.
It isn't easy to share something personal out here in UA-cam land. I hope this is a start in building a community that has this infliction and be a platform to share knowledge, experience, and provide a means of support, both to those who are enduring this, and the family/friends who are coping as well. You always have my complete respect and my full support with this new endeavour. Anything I may be of assistance with, just let me know.
Thank you. I greatly appreciate the support!
You are not alone warrior✨
Thanks for sharing. I had a bad flare this past summer. I can really sympathize with the pain, frustration, and fatigue that you are experiencing. I think people without AS just can't understand how miserable it can be. Hang in there. You're not in this alone.
Thank you for the reply! Most people just don’t understand the struggles we deal with day to day.
Any updates?
You are doing an amazing job Nic. I feel so blessed and happy tomsee.someone is sharing their true and authentic real struggle. It is what it is to be human.
Thank you. I appreciate your support!
Sorry to hear that
Thank you Nic!
I'm with you my friend big love ❤️
Thank you Big E
I'm on the same journey with AS, it is debilitating. Stay as strong as you can be. I found sharing my experiences on UA-cam to be a really good coping mechanism.
Thank you for the comment. I agree with your statement!
I ask you Jesus to ease my friends suffering and comfort his soul.God bless.
Thank you.
I am having a lot of your same problems, l was told that it is Lumbar Spondylosis , but the pain and symptoms l am experiencing is like yours , l am suffering a lot of pain because of flairs my doctor doesn’t seem to be helping and is not very knowledgeable even though he had a chart of a person dealing with Ankylosis spondylitis, but l know my body , he only seems to see what the X-rays show which is Lumbar problem but l am also dealing with the Autoimmune Disorder he is trying to get rid of me because of the pain aspect of the problem, l am being very patient with the doctor because l realized there is people that are seeking drugs for other purposes l am in so much pain l am in tears also l am crying over the way l have been treated please give me your perspective on my problem so l can feel some sort of relief thanking you for your help 🙏❤️🇺🇸
I am sorry you are in pain.
Are you still in the USA?
Is your Dr a rheumatologist that specializes in AS?
There are tests have hat can help diagnose AS.
X-Ray of sacroiliac joints.
Bloodwork for inflammation and for HLA-B27.
These can be used to help with diagnosis.
You need a Dr trained in AS.
Many can be found at the Spondylitis Association of America.
Don’t give up!
I’ve just eat 5 doughnuts to celebrate the flare is down..
Until the morning.. I’m eating what i want end of
Thank you for sharing. Question. Is your right side affected the most?
I have it mild, I'm trying to manage with calisthenics and gymnastics, when I get a flare-up, walking and doing any mobile activity becomes extra sore in my body. My hip and spine are fused, my spine has issues since my 20s and my spine mobility is quite limited I believe. I'm 40 now, I'm sorry to hear about your issue, do you have anyone who can help?
hi ,
how many bridgings have you got and when did it start ?
My SI joints started when I was a teenager but was misdiagnosed.
It wasn’t until 30 years later I was properly diagnosed.
I am fused completely in SI and in 3 lumbar and bridging in rest of lumbar and most of Thoracic.
As well as buildup in right shoulder.
How are you? Have you tried starch free diet😊
I'm carnivore for 6 months, doing autoimmune fasting (6 days 17 hr, 1 day 24 hr), CBD oil and LDN 2mg for 3 weeks. Fingers crossed my pain is down to a 1. I hope everyone finds some kind of relief as I suffered with pain for 3 years, sleeping like I was in a coffin, unable to walk my dog anymore and unsure it I could continue my job.
Sir I am also an A S warrior , I want to talk to you , please tell me how to contact you.....
You can send an email to genxwithAS@gmail.com
Thanks for the comment.
Would love to see your streetches.
That is my plan, once the flare eases up.
That is my plan, once the flare eases up.
Can tell you're in pain here.