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Hey, I just found your channel! This video was very helpful for me, I find it hard to find content where people just share their story with ankylosis. I don't know where you're at in your health journey but I wanted to share some love and encouragement with you ! 🤗 I enjoy long form content and sit down video like this one, I hope you'll do more of that in the future. In the meantime, you have yourself a new subscriber ☺️ Take care ! ❤️‍🩹

I call it the "Akey in my Spanky " heheh😊

I LOVE YOUR JERSEY

Goodd🎉

were you on crutches

Are you good on crutches?

I had mine today. Worst pain ever. No burning sensation as they say, the needly prick and the pressure of the medicine was not the issue. The excruciating pain was my nerves jolting and shocking me every few seconds so badly that I was clenching the table as tight as I could and I cursed which i dont do. I saved my tears until I got to my car and just began bawling. The pain was unreal. And its the same everytime. I have gotten a total of 5 injections (3 in spine 2 in SI joint) they all hurt the same. I can only explain it like you were to lick a battery x1000 on the injection site. Like the real life operation kids game.

Were you on crutches?

Does it make you gain weight?

I just had 1 done 5 days ago. Mine didn't hurt. It was pretty quick. The longest part was getting the IV, etc, before the actual injections. I was lightly sedated and they did use xray guidance. I felt better right away but today I've felt the best. I started stretching and light exercises today too. Hopefully the injections will last a while for me!! Good luck!!

Hi, I’m in terrible pain and have been for 5-6 weeks now.I get an Ultrasound Guided SI Sucrum tomorrow 7-24-24 and in nervous also.An Orthopedic Dr is doing mine of course…my pain is so bad it’s difficult to sit,lay down because my tailbone hurts so bad ! Good luck and prayers 🙏 Lea

Getting it done in 2 months

I just had 1 today in my left joint and it made me jump but only because i had severe pain and constant lower back spasms, i wont know until about 3 days if its worked properly because at the moment its judt really sore from the actual needle, once the anaesthetic wears off you can really feel how sore you are from having a needle jammed into your joint 😅

I have mines done tomorrow 🙏🏾 How was yours?

Hello. I am experiencing neck and right arm severe pain as you describe in this video with ankylosing spondylitis. Have you found how best to treat this pain? I have this pain now and again, and, always, it's the same cycle in healthcare "ER visit with CT Scan, followed by a specialist appointment with MRI, followed by steroids and pain killers." I'm 54. I'm wondering if you have found a treatment plan that works to suppress inflammation and pain. Thank you for making this video.

So did it really only last 4 wks? Or was that the setback from climbing?

I noticed immediately pain relief

It's totally painless and it takes 1 minute the prep just waiting takes like 30

It's not too bad, I reccomend sedation of your a nervous person

Hi, I am at 4 weeks post opt from big toe fusion. I was told that I wont be able to bend my toe after this and it will alter the way I walk. Do you limp when you walk? I saw all of your videos but couldn't find your video walking. I feel really depressed. Please share your experiences.

First of all many people make confusion between ankylosins spondylithis and other forms of spondylathrities...AS= ankylosing Spondylithis is with sacroiliac inflamation on x-rays and first of all with spine fusion!! AS is 99% in young man ( after 60 years of AS i know what i say...) at women are another forms of arthritis but no AS WITH SPINE FUSION!!!!

I get the injections once a year

Hi tin woman, I`m cement man, I always feel my hip and sacroiliac joints are made of concrete. good luck, hope you find some quality of life

My GP fobbed me off for 20 years from age 16 finally diagnosed and have had 2 hip replacements since on left. Side age 38 and 57 along with new medication 😂😂😂

Try homeopathic medicine it's cheaper and effective 100% cure for ankylosing spondylitis within 2 years. Important part is you should start the treatment before your bones gets fused

Am in a wheelchair now with a ankylosing spondylitis the pain is so bad along with my IBD it is very painful

Please anyone help me i got AS POSITIVE how to reduce pain which treatment is better please suggest 🙏🙏🙏🙏🙏

It’s a very tough struggle and unique to each person. I’ve had AS for 35 years through different stages, beginning with the typical lower back stiffness until I needed a cane. In my 30s going on 80. My first x-ray got the radiologist out of the booth to confirm how old I was when the film showed an old man’s spine. It’s a tough break at the worst time when your life is just getting good. On the bright side, I finally got the disease under control in my late 50s and no longer have much pain or difficulty walking. Chronic fatigue is a different story. It’s a legacy of decades of systemic inflammation. It’s much more of a buzzkill than pain because you can manage pain and treat uveitis with steroids. The medications can mitigate the illness but not repair the damage done. But the path forward is the same as it always was. Find everything you can that helps and keep your connections with your support system strong or make new ones. Find ways to live a meaningful life regardless. Get the help you need. 😮

So you’re saying that you don’t have HLAB 27 tested positive and still have AS ?

I have A.S and am from Ontario as well. Lovely garden!

With ya understand, same boat.

How many weeks were you non weight bearing on the foot? Did u use crutches or anything special? Thank you.

Maybe you have the same situation i have talking about the stress in muscles and a lot of fatigue , i recommand taking magnesium and stop eating sugar this is what m doing and it helped

fantastic explanation!!!!!! I will be sharing this with family for sure. I get tired of "complaining" to explain myself. My family gets tired of it too. I particularly loved the comment about dancing.

I’m having fusion surgery in both feet soon. Enjoy your videos. I love black jelly beans! 🙉

Did you also have digestive troubles like Crohns type symptoms?

How are you doing now?

Hey, I've had AS for 25 years and I've tried pretty much all the medication available. I also have Multiple Sclerosis. You are not alone and I totally feel your pain, I've had days where I am in so much pain I can't walk or even stand. What I have found that works the best is sulphasalazine and carnivore diet and when your ready exercise, predominantly lifting weights to build muscle mass which is pretty easy on carnivore diet. I believe the problem many autoimmune sufferers have, especially with AS, is that it starts in the gut, our immune system is reacting to the gut bacteria and the gut bacteria is not normal in us due to our altered genetics eg HLAB27. The combination of sulphasalazine and carnivore diet will heal the gut and destroy the bacteria that our immune systems are reacting to. There was a lot of research done by Dr Alan Ebringer at Kings college London where he prescribed sulphasalazine with low starch diet. However he never tried carnivore and carnivore helps take it pretty much into remission if the protocol is followed strictly. Look up Dr Anthony Chaffee, Dr Ken Berry and Mikhalia Peterson on TH-cam.

Hi! Thank you for sharing. I am having this procedure later this month. I have a VERY low tolerance for pain and I was wondering what pain level (from 1 - 10) I should expect post-surgery. Also, what pain medication did your doctor prescribe, for how long, and did it help? Lastly, how did you keep that small area iced, and were you able to sleep. Any guidance you are willing to provide would be appreciated.

When were you diagnosed?

Thanks for posting, I am going to start remicade soon and I am just trying to see what others are going through...the day after is what scares me

omg I have advanced arthritis in my neck. I have all the symtpoms you describe. its so hard. Psychologically i have to force myself to stay strong so i dont give up. I wish there was some type of support group for this because its really tough to deal with chronic pain psychologically. Especially if your not retired and still having to work full time.

Thanks for sharing - hang in there, you're not alone.

I have axial spondyloarthritis. Is it the same as AS? Or does it lead onto AS? I have terrible stiffness and pain in my low back every morning. I drive to work with a hot water bottle. Seems to relieve it alot. Usually go by the time I get to work. But sometimes it's a 8/10 pain in the mornings. Debilitating

Hi Anky, my podiatrist is recommending fusion on my big toe. I have a lot of pain just walking but I'm concerned that it's going to affect my ability to walk, run, etc. How has your fusion affected your everyday life? Thanks!

Did AS show in your blood tests?

Im sorry to learn of your malady. I hope you can find better relief soon. I don't have 'anky spondy' lol but I'm just interested as a medical student. You have a great attitude and presentation and are a beautiful woman too :-) Thank you for sharing your experience with this. From Australia.

Dali je Vid ostecen nekom od bolesti AS??

You get a full nights sleep😉

At what age you were diagnosed?