Graeme’s story: Living a full life in the face of ankylosing spondylitis
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- Опубліковано 9 лют 2025
- For the hundreds of thousands of Canadians with inflammatory arthritis, the road to effective treatment can be rocky.
Arthritis comes in many forms beyond the rheumatoid arthritis and osteoarthritis we’re all familiar with. For those with ankylosing spondylitis (AS), one of a larger group of conditions known collectively as axial spondyloarthritis, the disabling effects of the disease can strike hard and fast, often at a young age.
Graeme Reed of Ottawa was 19 years old when he began to experience severe stiffness in his back. "I played a lot of competitive sports growing up and during my high school years: soccer, rugby, hockey," says Graeme, now 28 years old and Interim President of the Canadian Spondylitis Association (CSA). "As I transitioned to university, though, my body, particularly my spine, began to get increasingly stiff. At first, I attributed it to just not being in the same sort of shape I had been in before, but it eventually reached the point where it was clear that it was something more."
I’m 44 was diagnosed at 18 but started at 15. You can take all the meds you want or need but take care of the mental side of this. It’s overlooked and often, the worst part about it.
i agree. i have AS/Chrons disease too. along with depression and anxiety, and thoughts. also idk if its AS but my head is constantly heavy, tired, dizzy, poor memory. take care.
@@omega592008171980 can relate to that as well.
@omega592008171980 How do you manage on a daily basis?I have UC and I think AS as well.
Diagnosed with AS at 43 last year, I'm still going through a grieving process of lost mobility and adjusting to daily pain. I've done quite a lot of investigation into managing the inflamation through diet and it seems possible. I'm still in discomfort daily but that's down to damage unfortunatly occoured undiagnoed over the years, I'm not having the flair ups, my energy continues to improve, I'm sleeping a lot better and there's the stiffness in the morning has diminished. I strongly suggest anyone with AS, or any other auto immine disease looks into a carnivore diet, just eating whoefood animal products. It sounds crazy, unhealth and unsustainable but that's because we're generally misinformed but it truley is not, and it will all make sense once you realise how nutrient dense meat and animal fats are and the corralation between leaky gut and autoimmune conditions are connected. Big love to all AS warriors out there xxx
I feel sick everytime i eat meat how can i get over this to try the carnivore?
@@Star5dg have you always responded to meat this way? if you have a meat allergy I wouldn't know you would need to discuss that with your gp.
@@lebeardotnet4372 I am thinking that it is possible that different people have different tolerance to different foods... which may explain David Graham's experience versus yours, lebeardotnet. All this MAY have a connection with Dr Peter D'Adamo's blood-type diet: Eat Right For Your Type.
Blood type O: ua-cam.com/video/X4b-wVoqRSg/v-deo.html. Blood type B: ua-cam.com/video/pgb_Sd0CD6Q/v-deo.html. Blood type A: ua-cam.com/video/hQBgPLrqUYI/v-deo.html.
I have no affiliation with any of the links I posted.
Lucky you I was diagnosis with AS at the age of 17 born with juvenile arthritis took remicade as a kid 6 years old to 17 stopped working had to switch to Enbrel stopped working at 4 years switch to Humira stopped working at 4 years, then went on Cosentyx stopped again at 4 years I’m a active guy lift weights and job every day. It’s been awhile since I had a good night sleep cause of the painful stiffness
@@Harem__King that's tough living with this from an early age, I'm sorry to hear the biologics are not working for you anymore too. I too suffer with poor sleep, I believe most of us will. I'm in a lot of pain every day still, though I have improved the stiffness just with diet, it helps the fatigue and muscular pain a lot. My whole spine has been targeted by this AS and what I believe I'm experiencing is mechanical pain. That being said, my consultant won't really do much else until I start biologics I've been refusing since last year. I've been living with this condition for sometime, it didn't just present itself. I am grateful that this didn't effect me from such an early age though. There's plenty of information about the carnivore diet. If you haven't gone 90 days before with zero carbs, vegetable oils etc, you really should consider trying it out. It's tough at the beginning, but once you start using fat as your fuel source and have got through the withdrawals from carbs, you might be very surprised and what relief you may start to notice. I hope you find something that helps.
AS have been passed down to me genetically (maternal roots) living life with AS is super hard as it fuck you up mentally more than physically…. I have big aspirations and I want to manifest them but with AS things are not simple at all. I stay strong pushing myself everyday and everyday it’s like day 1 no matter how much I try AS gets me down by the end of day.
Idk this comment section made me feel secure to open about this struggle of mine with myself.
I’m certain that I’m going to achieve everything that I aspire to be or to do!
Will not give up💪
Glad to have come across this video. It makes me feel someone to relate to and see light at the end of the tunnel. Praying for my healing 🙏🏻
I think I'm in this club now. High friends. "Feeling like your back is 90" exactly.
you are lovely, optimistic person, brother on AS 🖐️🖐️🖐️
i have severe arthritis in my neck and it really is horrible and scary
I am just getting diagnosed after 10 years of chasing different subspecialists.
I'm tired.
And I really hope I find the same relief with these medications.
I miss.... Me.
I hear that so much with myself even about how people are so athletic and then it just dies
😢 This is so miserable. I had the biggest flair up of my life last week, and it’s so hard.
Hope you're feeling better
@@yoshortyb I am feeling a lot better. I had to lower my stress level a lot, but I’m 90% better now!
@@yoshortyb 🙏
@@SuperILoveWater Really happy to hear that! I know it might sound a bit weird, but if you are single would you be interested in talking?
@@yoshortyb lol! No worries, I’m not single. Happily coupled up. Good luck out there.
Hi! I live in Ottawa and have AS
I.m 45 years and I have both crohn's and ankylosing spondylitis and very difficult to to explain to the people around you.
Thank you very much I found that very interesting. Good luck best wishes
Hey ! I live in Ottawa and have AS!
So glad i found this. 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 hands 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, 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. 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 anypne expierence snapping noise pinging sensation in joints at anytime?? I have not been diagnosed and i know i am probably self diagnosing here but everything i have saw about AS is basically the symptoms i have had for years just over the last 5-6 years its got worse but the last 2 years have been a living hell, like being tortured at times, knowing u can hardly move but know you need too. One of the worst parts is nobody knows how much i am suffering
Good morning to you. I read your story. I relate to you. Ask your Rheumatologist to check H-27 I was negative for Rheumatoid Arthritis but I had this Gen h-27 in all the blood work showed high in inflammation. My condition was diagnosed , at the age of 40 old. Unfortunately nothing has helped a car accident just left me worse. The warm pool helps, Remicade infusion. Help a little not alot but enough to help me swimming few laps and stretch and strength. And walk and take brakes. I'm not feeling the best but my 7 year old is my blessing his the reason I keep pushing as best as I can.
Unfortunately i have not saw a rhuematologist yet, quite a waiting time in UK for referral possibly months. I dont even know what i have i am self diagnosing but sounds so like AS. The pain everyday is hard to even put into words, my full body aches, cant stand for long periods and cant sit or lie down for long periods it really is a no win situationz mental health is taking a battering asswell due to it
Yes, Rheumatologist are always booked. Ask them to put call you if any cancelations. Stop drinking dairy products use oatmilk or coconut milk. Stop dairy products and tomatoes. If you have a gym or therapy were you can just be in warm water half hour and then jacuzzi 5 minutes that's what I do. The warm pool is better for us it will help you move and help with stiffness. Also no fried food. Anything grilled or steamed. No Soy sauce or just soy is a big no no!!. Get a plant base collagen it will help, I take D vitamin 50.000 it's a high dose. Vitamins C a high dose 5,000. Fresh fruit s and salads and keep moving. I will start Remicade infusion again I had too Stop because I had precancerous cells. I had them removed and I will start again on February. The infusion don't help me alot but , it allows me to.do my therapy. But I was in a car accident and it made it worse. Try also CBD if you can I combine narcotics and medical Marijuana and
Hey Davey , are u still hanging in there ? Seen a rhuematologist yet ?
Blood test of HLAB 27 or MRI can end your confusion
How about online consultation of Rheumatologist of any other country? It's not ok to leave it unchecked, it will get worse over time
Please consult a doctor soon
Yesterday i find out i have as
I feel you bro
can you have AS without the hla-b27 gene ?
Yes that’s my case
Same my case
Je suis attente de spondylarthrite ankylosante... j'ai su en 2019...en suite j'ai tombé enceinte...
C'est un journée difficile...mais le fait de bouger, ne pas se arrêter aide.
Vraiment ! Faites du sport, travaillez votre élasticité...allé à la piscine.
Faites ce que vous pouvez pour continuer à bouger.
I live in Pakistan and have AS.
What treatment do you take
I also live in Pakistan and also affected of Ankolosing spodilities
@@MrPrinceyousuf9what treatment you take now?
@@fahad8365 nothing bro i just force my brain to forget this disease
@@MrPrinceyousuf9there are treatment option available for treating this disease. You should use anti TNF for 3 months atleast. Go to a good rheumatologist. It will cost around 50k per month for 4 injections. Use it for 3 months atleast. Once ur symptoms resolves then u can take only 1 injection in a month. Which will cost around 15 to 17k. Or maybe 1 injection after 2 months. Depending upon Ur symptoms.
I have severe symptoms except nothing to see on x-ray.
Hello there you can have symptoms in early stage of your disease and xray findings shows your disease only after the bones have inflammed too much.Bit if you get an MRI definitely you can see the inflammatory chahnges in the early stage itself
Hii hdb 27 positive who is this doctor the Ayurveda. And my hp fuse help me the my country India the middle class family 🥺🥺🥺🥺
I pretty sure i have as
great video. I also have some at Anky Spondy on UA-cam
I live in Nepal I am a person Of As
at 16 gps would excuse it as gout it was mild at first just the big toe then to other parts of my body there medical treatment was drugs if one did not work then try another then the flair up would go away a month or 2 never more than two i first seek a rummy 45 by that time he put me on hurriar never did work hopt to 50 years old i know now that it is AS with bow backed they had me walking with a 4 wheel walker some time i couls to big box store and use a shoping cart and lean on the cart now i am at 62 useing only a walker and to get to my mobility scooteer and use that every day in spring and summer can not walk 20 feet before losing my breathing
Instead of showing a good looking guy who is about to get married, show me.
No? Okay.
I have AS an UC and I get you man.
Can you please tell me when you diagnose with uc , after how many years of as because I just diagnosed with as and I don't want any other complications in my life , how can I manage this