My Ankylosing Spondylitis Story | Totally Chronic
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- Опубліковано 31 січ 2021
- This week I wanted to share my personal story with Ankylosing Spondylitis! Please share some of yours in the comment section, I'd love to hear it!
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There may be someone who needs to read this. I really feel its important to point out that the spectrum of progression for AS is very wide (as any Rehumatologist would say); and peoples experiences are miles apart from one another. Many people live completely normal lives with the disease, particularly if they focus on their health (eat well, stay a healthy weight, don't smoke, stretch, lift weights and exercise generally). I was diagnosed 3 years ago, am 36, and feel absolutely fine. I have a flare up once or twice a year which, whilst painful, is manageable. I dont need any medication. This is the case for many people for the whole of their lives. Almost all of the content online focuses on people with severe versions of the disease and it can be very daunting and unhelpful for people to see this, particularly if newly diagnosed. Its really quite possible that you have a mild form of the disease which you can successfully control and managed. Why is it we mainly see the worst of AS online?
Good to know
So true. Thank you for sharing that!
Yep, the prognosis of this condition is often described as "self limiting". Meaning, in part, experiences with it varies widely. Many people are only mildly affected by the condition.
thank you, today I got diagnosed with as, and HLAB27 positive. I got pain in my right SI joint in June 2023 and after taking medicines for two months my pain is away completely and i m pain free and living normal life . In November the same pain started in my Left SI joint now. I m 22 , doctor said I need to regularly take medicines, they may have side affects with other organs. I m very worried about my future. and no one around me knows about this, every one thinks that I m acting to skip work. This is very depressing😢
@@bagathijogarao8064 Am at the late stages of this condition (35 years ago first symptoms) and I take three tablespoons of the strongest olive oil ( makes your mouth and tongue sting a little) for pain. I have had to take meds for inflammation since 2019. It really does help. The oil I use is from Tunisia it is stronger than California or European versions for this effect. Peruvian isn't bad either. Oleocanthol.
Hey! I've been diagnosed with AS back in '21, although the symptoms were present some time before then. There are degrees of AS, some have a milder version and some are really under the cosh from it. I am 56 now and have always been in to fitness. This has really slowed me down dramatically. I cannot work and my life has really changed. I have tried all the main biologic medications with no success coming from any. Unfortunately they are not a silver bullet; many people will find that they do not work at all. They also come with many potential unpleasant side effects. Presently I am drug free but often in considerable pain. I have conditioned myself to the fact that I may well not respond to the current treatments available. Really I am left with trying to maintain my positivity, along with remaining as supple and fluid as I can. I may well have this for what remains of my life; I will not be beaten down by it. I feel sorry for people that get it very early on in their lives like their twenties. To all sufferers I would say try to keep as positive as you can. Know that there will be bad days, but really make the most of the good days when they come along. I wish you all the best on your personal journeys.
Thanks for sharing your journey. ❤️❤️
I am very sorry that you had to go through all this and I really do wish you every healing blessings from above
Thank you for sharing your story
Diagnosed at age 21, now age 55….34 really tough years, although some were definitely harder than others. Just speaking for myself here…
Things are progressing, just when I think things cannot get worse more and more problems surface.
Started in my SI joints with terrible sciatica and lower back pain, then my cervical spine and now my thoracic region. My neck is 100 percent fused, cannot move it up/down or side to side. My ribs are now fusing and my last pulmonary function test showed I am functioning at 40 percent ( anything 70 or below is abnormal) 40 being severe.
I am sharing my story because if there is anyone out there who would like to reach out for support or have questions I would be more than happy to help anyway I can.
It’s an invisible illness in the beginning and it can be difficult for the people in your life to understand what you’re going through and how difficult it is to deal with the fatigue and pain.
God bless and best wishes to all the AS warriors out there.
I’m 39 and was diagnosed at 21 I’ve been bedridden and housebound for the last 3 years due to drs not giving a crap and the wait between the different specialists my pelvis is all bone on bone my si joint is hanging on by thread the drs said but now I have vascular disease and heart disease I can’t feel bladder and now I can’t even have a bowel movement for months because my nerves are no longer functioning properly and sending my body signals to contract sorry to get so in depth but I have no one and I am a single mom all family is passed so having found you warriors is so overwhelming but I know you understand
@@mandymogan8731 you are not alone. I am also suffering from the fucking AS and bearing a lot of pain. Where are you from?
I've had AS since I was 21, now I'm already 57. The HL-B27 antigen was also found in my blood. Heavy physical work causes pain, but there really are no rules. There used to be big weather changes accompanied by strong winds. I eliminated bread from my diet for a long time and I was fine. I've even been pain free for about 20 years which is great, maybe once every two years I'd get a couple of days with pain. This year everything went wrong, first my mom died in April, which hit me hard. She left behind a garden that requires a lot of physical work and a lot of potted plants. I wanted everything to be perfect, so I spent about 10 days of vacation on my knees and carefully pulling deep weeds out of the ground. I also worked with a shovel, a little bit every day. The pain returned in a big way and has not stopped until today. It's been 3 months of constant pain. I can barely carry out my daily duties. I take analgetics and the pain has lessened a bit, but I still walk like a hunchback. There is still a lot of physical work to be done at mom's garden before winter. It's so hard to do tests here that I don't even want to start, everything takes a long time and requires a lot of walking, and I can barely move. If the pain doesn't go away soon, I'm afraid I'll go crazy.
AS double edge sword, prolong usage of the medication be it orally or injection will cause cancer… but no medication and prolong inflammation does dna damage and will cost cancer too… 😢been living with AS since 2002 , been quite productive in daily activity but not till last year 2023 flare happen much often 😅
Thank you for sharing your story. I also have AS diagnosed on June 2019 after a few months of flares.
I also diagnosed with as on june 2019
Stay strong! 💪💪
I’ve had chronic pain since childhood. Diagnosed with AS in 2012 and am 34 now. Meloxicam has helps a bit with pain, I still struggle a lot with activity and being mobile. I am on Taltz for it. I also have a diagnosis of Rheumatoid Arthritis and small fiber neuropathy. So it’s quite difficult to pin point which illness is affecting me most. I would say my quality of life has significantly diminished. So what I will say is, do the best you can when you’re able and continue to live as much as you’re able. Get mobility assistance tools like walkers, shower chairs, tools to help out on socks and shoes, stools to sit and cook. Etc. best of luck to everyone. It’s a horrible illness. But there are ways to still enjoy life if we can find something that helps with that nagging pain. I’m not pain free by any means. But I’ve come from the darkest place to being optimistic. And I really hope the same for everyone out there who is struggling.
Thank you. I may be diagnosed with this soon. Reading through info articles I am finding I hit all the indicators of ankylosing spondylitis which is scaring me. I've had back pain for 15 years (i am 34) and this year it has gotten so bad I have gone to my doctor for help. Your video has helped to calm me that there are definitely options out there and I will eventually find some relief... Even if it's not perfect. I really miss having a good night's sleep.
If you do get diagnosed with, really consider the diet changes early unlike myself. I have had it for decades and when I made the switch away from starches it has arrested the Spondylitis progression. The Drs. will be trying to use drugs with gawdawful side effects to do the very same thing.
I have it too! Hi from NC! 😊
Wow your beautiful. I also have spine issues its , a struggle. Must stay positive.
I have had as AS for five years now. I have found cutting out sugar to a bare minimum and cut alot of carbs out has had a huge effect on how many flares i have. Im due to have surgery soon as drs think i could have endometriosis, so as soon as thats sorted i hope to be kind of pain free.
I have AS bad have failed 3 different treatments works good for about a year then just stops. My inflammation goes up I start to hurt. I'm trying to get another med approved through my insurance what a pain. Humira worked great for 2 yrs
Does anyone know if this cause weakness and heaviness of limbs
Did they put you on Methotrexate too? I am on that and the combination is what works for me. 12.5mg of Methotrexate a week then Humira every 2 weeks. I was also on Remicade then it started to become less affective.
Just going through the process of getting diagnosed. Exhaustion has been absolutely disabling. Is this the same for others?
Does it have your hip involved?
Glad I found your channel!! Did you ever get sciatica with AS?
Yes, I did!!! At the beginning before treatment. That's what they thought I had the one time I went to the ER.
@@totallyfunkless this sounds just like me! I’m waiting on my lab work to come back to see if I have the gene.
Hey how are you!?
This sounds like me right now. It’s taken 5 years for them to finally start to think it’s AS because I have no blood markers other than elevated CRP. I’m also allergic to NSAIDS other than Celebrex so at first was terrified I wasn’t going to have pain relief options other than opioids. Now they are finally offering to start me on a biologic but I’ve been having sciatic pain more recently while waiting. It’s good to know other people with AS have this symptom because I was starting to worry it was a whole other issue
Thank you for sharing. My mother has AS, and it appears that I have it too. I tested positive for the HLA-B27 gene, and I have been referred to rheumatologist.
@@SaturatedCat Of course i have symptoms.
@@SaturatedCat Thank you, I assemble cars for a living. I’m thinking I need to to find different work.
That doesn't have to be true I'm 30 had AS for ten years and I climb trees and cut them down for a living. It's definitely a challenge but being active ALWAYS helped. Doing the Paleo auto immune protocol diet and that has worked better than any meds ever did. diet is tough but AS is worse.
@@ShopRat295 atleast someone close to you has it. Someone who knows and understands what you are going through is priceless. This disease can be really lonely. Not many people have even heard of this disease and have any clue what it is. Even when I tell them they don't understand or worse think it's in my head or I'm being dramatic. UA-cam has helped
@@kimberlyk2530 Thanks again. I had my first bad flare last week. Im fine as long as i don’t have to bend, but there a couple jobs that require me to bend over into cars and it kills. I do think being active in a factory has helped my symptoms.
Are you HLA B27 positive ?
Me too suffering from AS since 2004. It's Disabiliting and depressing too. Pain is part 5my life.. Head to toe. Nowadays started Tofacitinab 10mg daily and my pain is reduced significantly. But having continuous head ach and neck ach. Neurologist started migraine medicine to control my neck ach. What to do?? Not clear with my mind and thoughts. In 2017, suffered from TB of lymph nodes after taking ,Etenercept, biologics. I am hopeless now. Please help me.
Watch video of Dr l praksh on ankylosing spondylitis
Did you recover from TB and did you started biologics back again?
I listened carefully but didnt understant how are your blood test what values? And xray and MRI what shows?? I understand that boiologics didnt work and made apeal at comunity on online that helped you....but what show blood test and xray???...wgat you say is not clear....
Thank you for sharing your story. If you'd like to chat, I have something that's been a game changer for this autoimmune issue. I love to offer hope.
Plz share game changer in ankylosing spondylitis
everyone says they know the remedies etc when they don't know what this deadly disease is shame on you
A game changer that you're teasing and not willing to share publicly.
?
Wow Canada sounds like a 3rd world country medically.
I usually get a referral within a week, and MRI within 1 day.
oh wow, what country are you in?!
@@totallyfunkless Zürich Switzerland
Yeah 1 month waiting for MRI really sounds like a 3rd world country..
Does this AS pain happen all the time or when you are engaging in some special movement only then?
@@sandeepdhillon7841 we do have MRI at the same day sometimes in 3rd world
@@RowOfMushyTiT I´m living in germany and I had to wait 9 months to get to the earliest rheumathologist appointment. Others said they had a waiting time of 1,5 years!
e: that´s because we only have like 5 rheumathologists in a 75 km radius nearby and they are flooded with patients
it's all about what you eat! Fuck the meds girl... They might help but at a risk of side effects that might make it worse. Low starch diet is a start I am on autoimmune paleo protoco dietl now ... Can finally see again ... Learning what foods cause symptoms. Diet is the cure. I no longer enjoy food but I can manage. It's worth it to make the ankylosing spondylitis go away. Good luck. Love people like you who make videos and I know I'm not alone.
@Cranky PantsSo am I imagining my symptoms going away? You need to do more research! My rheumatologist recommended a low starch diet. There is a connection to a gut bacteria and it looking similar to collagen in people with HLA-B27 Gene. 70% of your immune system live in your gut. I have had ten years of trying different medications and their horrible side effects. There is nothing more frustrating than someone telling me I NEED pills!!
@Cranky Pants there is a medical diet for this disease. It's called the london AS diet.
@@futurevision7391 that's really good info I'll keep that in mind.
@Cranky Pants remission is possible. The key thing being everyone is different. Don't tell people they NEED medications especially ones that are potentially harmful and dangerous. Diet doesn't hurt to try. Hope also never hurt. The one thing you can control with this disease is your attitude.
You’re right. 😊. Helps me to
In the United States, it is no different. You need to wait months to see a specialist.
Are you single?
I am suffering from the AS AND I AM 25 🥹🥹🥹
Try having it and having a hard construction job