Living with ankylosing spondylitis - Amanda Geard's story

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  • Опубліковано 22 лис 2024

КОМЕНТАРІ • 422

  • @NathanAnnandale
    @NathanAnnandale 7 місяців тому +18

    I have had AS for 20 years, but I didn't let it stop me and had an amazing career in the ocean. I was unfortunately hit by a car, and it made my AS so much worse. I also injured my back further afterwards, and I am barely able to walk now. I have to use a walking stick for the pains in my leg from the car impact, but also to relieve my back pains. After 20 years I have finally been diagnosed, and this video has brought so much hope back to my life. I have done over 5000 scuba dives in 15 years, and in the past 4 years I haven't dived and it has destroyed my soul. Been fighting with severe depression for a very long time now, and there is finally some light at the end of the long dark tunnel.

    • @DanyLassard
      @DanyLassard 7 місяців тому +1

      sending you a big hug, Nathan!

    • @teeen3486
      @teeen3486 7 місяців тому

      GOD bless you and heal❤️ you’re very strong💕

    • @darkspace165
      @darkspace165 5 місяців тому +1

      Diet play a very good role in it.
      Take a clean diet without starches and lime like lemon etc
      and Do Not Eat after 6 pm until next morning about 9 am.
      Eat veggies and fruits which digest fast like oats.
      You will see really amazing results.
      Try for one month you can feel it

  • @corycubano
    @corycubano 7 місяців тому +52

    I have AS and I have a very similar route as you. I actually played division 1 baseball and didn’t get symptoms till 25. I then could barely move in paralyzing pain for a year until I was diagnosed and was finally able to use medication and get better. I am now back to baseball at 28 and just signed a professional contract.

    • @erkanbilgili495
      @erkanbilgili495 6 місяців тому +3

      Which medicine do you use bro?

    • @MandinaCasas
      @MandinaCasas 4 місяці тому +1

      what is the medicne youre using? my Doc wants me on Humira!

    • @corycubano
      @corycubano 4 місяці тому +2

      Humira!

    • @MandinaCasas
      @MandinaCasas 4 місяці тому +1

      @@corycubano oh wow! no side effects?

  • @parveensherwood-schuetze1092
    @parveensherwood-schuetze1092 7 місяців тому +18

    I only have admiration for you. I have AS for many, many years l am nearly 77yrs
    now.l understand exactly what you have been through, keep it up, never give up.

    • @ShowbizTimesOfficial
      @ShowbizTimesOfficial 3 місяці тому +1

      How do you treat it? Kindly let me know

    • @justmeagain7
      @justmeagain7 7 днів тому

      How are you doing now? still active and moving?

  • @matthewblythe3926
    @matthewblythe3926 Рік тому +38

    This really helped me Amanda Thankyou, I’m 32 I’m an Australian and I was diagnosed only a few months ago. Sometimes the pain is unbearable. And I’ve been tears many time thinking about what the rest of my life will look like. I was an extremely adventurous young man I love to snowboard hike and travel and all sorts of other physical things. Thankyou for showing me that it isn’t the end and that all those things are still possible for me..Thankyou Thankyou Thankyou

    • @Stigz34
      @Stigz34 Рік тому +4

      What help? She didn’t say what the treatment was

    • @eivindgjengstjohansen9625
      @eivindgjengstjohansen9625 10 місяців тому +1

      My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
      i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...

  • @jerinaelsa
    @jerinaelsa 11 місяців тому +13

    I am 32 and after fighting with back pain since 3yrs today I got diagnosed with AS. I was very sad but now happy that they diagnosed it.

  • @Peace_seeker
    @Peace_seeker 8 місяців тому +11

    I'm 24 diagnosed when 22..got sad and depressed lost 10kgs but now I'm healing ❤

    • @sanketshinde3669
      @sanketshinde3669 Місяць тому +1

      What treatment are u taking....same problem I have...plz reply

    • @Peace_seeker
      @Peace_seeker Місяць тому

      @@sanketshinde3669 i got treatment from Patanjali Ayurved Haridwar!
      After trying many hospitals and many harmfull medicines ..
      Finnally old indian practice revived me!

  • @johnsalisbury3768
    @johnsalisbury3768 7 місяців тому +9

    She is modest. This is the most diabolical pain a human consciousness can endure.

    • @magicalindigoadult3838
      @magicalindigoadult3838 6 місяців тому

      Dose this give migraines I have pain in my shoulder blade and head all day

    • @johnsalisbury3768
      @johnsalisbury3768 6 місяців тому

      @@magicalindigoadult3838 not sure. Waves of overwhelming low spine agony, progressing at a rapid rate is the main symptom.

    • @christinagriffin6573
      @christinagriffin6573 3 місяці тому +2

      I agree totally 😢

  • @shmang1485
    @shmang1485 3 роки тому +161

    Thank you for sharing. I'm 35 and was diagnosed when I was 16. I remember limping all throughout high school. My parents didn't believe my cries from pain. In college I couldn't even put on my socks or use a sink. Yoga has become my friend, and I completely relate to what you say about pain and excercise. Thank you. Sending you much good health!

    • @majiddar5695
      @majiddar5695 2 роки тому +3

      what is your condition know thanks for sharing your story please give answer

    • @sunflowerfact1652
      @sunflowerfact1652 2 роки тому +1

      Needed for madicine

    • @0seve291
      @0seve291 2 роки тому +3

      Same here inflammation in ribs then hips started at 12… limped on and off thru out my life 35 and doing great on biologics 🙌

    • @dc.pentrumesteri4893
      @dc.pentrumesteri4893 2 роки тому +3

      @@0seve291 zimi te rog ce tratamente iei sa fii bune eu sânt dezastru cu SA și respirstie

    • @0seve291
      @0seve291 2 роки тому +1

      @@dc.pentrumesteri4893 sorry I only speak English

  • @sunettebrink2012
    @sunettebrink2012 11 місяців тому +15

    You go,Strong Woman! i was diagnosed when I was 35, am now 52.Had knee operation and two frozen shoulders as well.AS made me stronger as I train doing weights,walk,run using tumeric cayenne pepper,ginger daily. Feel less tired and beating menopause as well! Keep moving,stay strong!

    • @dyoutuber3967
      @dyoutuber3967 10 місяців тому

      why don't u go for shoulder surgery and make your shoulder free?

    • @parveensherwood-schuetze1092
      @parveensherwood-schuetze1092 7 місяців тому

      I also suffer from AS could you please tell me the portions of the spices. Thankyou

    • @jhollomon6279
      @jhollomon6279 3 місяці тому

      Are you on any medication?

  • @CHRMARGIL
    @CHRMARGIL 11 місяців тому +11

    I’m newly diagnosed and really going through it atm..these videos are helping me to form a better understanding of how life could be..thank you

  • @lucyilly428
    @lucyilly428 22 дні тому +1

    Gosh doctors really do make everything sound so bleak. Don’t give up people, find a helpful doc and keep fighting. You can live a full life with this.

  • @mchead13
    @mchead13 11 місяців тому +7

    Fantastic, thank you for sharing Amanda, I'm 65 and live a full and active life even as one that was completely consumed by AS prior to age 40, symptoms started about age 12, diagnosed at age 26 (1984) with fully fused SI joints (today I have full fusion hip to neck including rib cage). My miracle came in 2001 with a biologic which quite literally gave me my life back. I try to help young people overcome the fear of treatments. And stress that AS in not a pretend disease but has the capability to be a brutal crippler. I smiled when you called it "the beast" - that has been my description of my lifelong partner that is AS.

    • @florinhash4843
      @florinhash4843 2 місяці тому

      How do you move if you have fusion?

  • @zanamarigold6073
    @zanamarigold6073 3 роки тому +70

    Thank you Amanda for sharing your story. I'm 41 years old and I got diagnosed with AS yesterday. I can't describe my mental state right now, perhaps searching for answers, reasons for how, why, and now what. Seeing you in this video has given me some hope. Going for my blood tests this afternoon and MRI next week. Thank you Amanda for sharing your story.

    • @scientistatwork4667
      @scientistatwork4667 2 роки тому +6

      Sending you support and well wishes. You can get through this with good doctors, emotional support, the right medication and exercise like Amanda explains.

    • @preciousjewel7297
      @preciousjewel7297 2 роки тому +7

      One of my identical twin daughters was diagnosed with Juvenile Anklosing Spondylitis at 14. She and her identical twin sister turned 17 a few days ago. She's still going strong. Trust God. 🙌💛

    • @jessiefogarty8119
      @jessiefogarty8119 2 роки тому +4

      Thinking of you and appreciating what you’re going through @Zana Marigold I’ve just turned 42 and have a younger cousin who has been diagnosed with AS which has lead me to realize this is something I need to pursue for my pain that I just “suck it up” and carry on through. I have several other auto immune issues that run in this same family line and I’ve been able to attribute this pain to those for the last 20 years or so but it’s moving now and becoming more apparent that it’s likely AS. I’m so scared to get the confirmation. I feel for you deeply 💖💖💖

    • @christianansell3170
      @christianansell3170 2 роки тому +4

      Understand totally it’s only 2 weeks since my diagnosis and looking at videos like this does help settle your mind but cannot believe Australia treats people like that for medications that can transform a persons life.

    • @kalqubbaj4853
      @kalqubbaj4853 2 роки тому +2

      Your not alone, we're all supporting u. Try not to stress , practice deep breathing, have some time for urself. We're in 2022 treatments are more accessible and your Dr will go through different options and treatment plan with u. Stay strong

  • @austenbamford1202
    @austenbamford1202 Рік тому +9

    A low carb diet has been the best thing I could have ever tried for my AS.
    In 2019 I was in so much pain I couldnt get out of bed. I had flare up after flare up, each getting worse. I tried a vegan glute free diets for 3 months, which had no improvement. Then I tried a low carb diet, within 3 days of the diet I saw a massive improvement no pain for the first time in over a year, that day was euphoric! I hope it works for you.

    • @justmeagain7
      @justmeagain7 7 днів тому

      By "no carbs," do you mean avoiding refined carbs such as bread, cookies, cakes, pasta, etc., or does this include starchy vegetables like potatoes and sweet potatoes? Additionally, what about fruits-are they considered part of "carbs" in this context?

  • @diversedad7954
    @diversedad7954 Рік тому +33

    "The beast had been named, and I now had something to fight". That's exactly how I felt almost 10yrs ago when I was diagnosed with AS after years of pain that I was just told was normal growing pains despite none of my similar aged peers dealing with what I was going through. Just having someone confirm this wasn't in my head gave me hope even though the prognosis was not good.
    Now at 38 I am married with 2 kids and life is great. Most of my 30's I've felt better than most of my 20's. I have bad days and bad weeks for sure but the good outweigh the bad and I'm living life that way I want to most days.
    I have had lots of prayer that I feel has truly helped change my life with my condition. I live a pretty active life but have always struggled to drink as much water as I should. I realized joints really need water and try to do a better job of drinking more of it which I think has also helped.

    • @johngeorge8597
      @johngeorge8597 Рік тому +1

      Encouraging video...though i could not catch on how exactly she was cured of AS

    • @spindleblood
      @spindleblood Рік тому

      ​@@johngeorge8597there's no cure. You have to stay active to fight it and take biologics which suppress the immune system

  • @milokingtana3315
    @milokingtana3315 2 роки тому +34

    I've been living with this condition since I was like 15 years old but the pain wasn't as strong as it was 2 years ago, I'm 34 years old now and 2 years ago I was finally diagnosed with AS since then my reumatologist prescribed me a biological treatment and I started to feel much better I'm taking shots of ADALIMUMAB every 15th days and exercise I give my best every day cuz I have a little kid. Well this my story I'm sorry if my english is bad I'm from Mexico

    • @majiddar5695
      @majiddar5695 2 роки тому

      @@manishabhagat4350 pehle theek hoja phir dikhaye side effects

    • @judycastelli1015
      @judycastelli1015 2 роки тому +1

      Milo, your English is actually very very good. Let your child continue to inspire you. You give me great hope as I continue to search for a diagnosis and a path forward.

  • @aimi770
    @aimi770 9 місяців тому +3

    I m 21 years old n i had AS since i was 15 years old

  • @lilaworley8935
    @lilaworley8935 9 місяців тому +2

    I was just diagnosed. They are going to run a few more tests to try and figure out how to tailor a treatment plan. I have been chasing symptoms and having procedures for almost 15 years.
    I finally saw the right doctor.
    Your story gives me hope and inspiration. Thank you.

  • @skunkflwr
    @skunkflwr Рік тому +4

    I was just diagnosed yesterday after a major flare up of my whole body. My neck, back, right hip all ached. My knee was the size of a softball. I could barely walk. I felt so hopeless like i was never going to feel relief again. I was very fortunate to meet a doctor who identified it right away because of my bloodwork. I am HLA-B27 positive. I have yet to see a rheumatologist, because it takes a while to get scheduled. Seeing this video gives me hope. I really had no hope during the most painful flare up I've ever experienced.
    Ive had symtoms since i was 14-15 years old. I am now 28. It took over 10 years for a diagnosis. Its a hard pill to swallow.
    Thank you for sharing your story.

  • @erinbabbey8261
    @erinbabbey8261 3 роки тому +37

    This video makes me feel hopeful. Thanks so much for sharing your testimonial, Amanda.

  • @Motty24601
    @Motty24601 11 місяців тому +3

    Amazing video, im 37 and was diagnosed this morning after failed diagnosis for the last 20 years very similar story, paracetamol and ibuprofen from my gp until i went to see gp recently but instead saw a locum who immediately said we need to do some tests. 5 years ago i had been in so much pain for so long it caused my mental health to deteriorate and i made an attemp to end it. Rather than anyone look into the reason for the pain i was prescribed anti depressants. This video has given me hope of a much more active lifestyle something abit closer to normal. so thank you

  • @ronaldnewton5092
    @ronaldnewton5092 2 роки тому +41

    I'm a male that has AS which started when I was 14 to 15 years old. I was not diagnosed until my late 30s. I thought everyone hurt like me. So I thought it was normal to hurt the way I was hurting. Movement of all your body joints is one of the key aspects to this disease.

    • @ledacedar6253
      @ledacedar6253 Рік тому

      yet, what we fuel the body with in 2023 glyphosate, aluminum riddled Foods we need and can do so much more! Hippocrates told us! Meat and 2x fats resolved all my issues of AS and that's after 20 yrs of not being diagnosed.

    • @Kandykizziz
      @Kandykizziz Рік тому +3

      Same for me I thought everybody had the aches and pains I had till one day I asked my partner do you hurt when you wake up and get out of bed? He said no and for the first time I thought to myself okay this isn’t normal 😩

    • @MyDuckSaysFucc
      @MyDuckSaysFucc Рік тому +2

      I’ve been chronically ill since I was 15 also, 10 years and no diagnosis except fibromyalgia but they don’t give you and resources or treatment plan or anything for that. I feel that I have AS or something similar and I’m asking why none of these treatments were suggested? I’ve always improved with exercise but it wasn’t easy and the illness would get worse off and on so I’d have to stop and that would make it so much harder to do

    • @eivindgjengstjohansen9625
      @eivindgjengstjohansen9625 10 місяців тому +1

      My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
      i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...

    • @ronaldnewton5092
      @ronaldnewton5092 10 місяців тому

      @@eivindgjengstjohansen9625 Yes, AS and other auto immune diseases just wear your body out. Sometimes you feel as if you want to give up. But you push forward until you unable to any longer. Just had a small surgery on my hand been off of Humria for a month and half. So I would lessen the chances of infections, also had an ablation done on my neck for a second time. After my fist ablation on my neck I was pain free no migraine headaches for the first time in many years that's until a car rear ended me in November last year. Now starting all over again.

  • @juliehowman3912
    @juliehowman3912 7 місяців тому +3

    I’ve had AS diagnosed for over 40 years and agree one needs to keep on moving.

  • @buraksmoke
    @buraksmoke День тому

    Since July 2022 I've been struggling with AS. Unfortunately I'm not good at exercises, and have been taking Indometazin every day. Nowadays it is rainy in Istanbul, and I feel terrible. Mornings are the worst. Finding a rheumatologist is hard if you do not pay for a private hospital. Therefor I'm just being dragged inside the water. I have felt much better when I saw your story. I hope I can show some progress, too.

  • @jeremyjhockett5663
    @jeremyjhockett5663 6 місяців тому +3

    I’m 45 I was diagnosed when I was 26 and had 6 vertebrae then now I have only 2 vertebra left from total fusion. I was a very active and outdoor person and was in sports growing up football and wrestling 9 years and marching band but it’s so hard at times to stay positive but am involved in church God has been good even when we suffer I count it Joy stay strong and remember there are people that need to hear your story thank you so much

  • @elenadiaz8766
    @elenadiaz8766 6 днів тому

    Thank you for sharing your story!
    Wishing you all the best!

  • @1975emac
    @1975emac 2 роки тому +10

    My AS diagnosis came because of Uvitis in my eye at 44, almost went blind. My hips hurt bad in my 20’s and wasn’t able to get a diagnosis. Now my neck is is fusing, ankles and knees. Thank you for this encouraging video!

    • @timjuke9502
      @timjuke9502 Рік тому

      Same, I had Iritis from my AS when I was 24, didn't really have much back pain just had bad flare ups sometimes but I chalked it up to that it was just from my crappy bed I was sleeping on. Once I went through the horror of Iritis for 2 months, it was worse than the back pain could ever do and the fear of being blind from it was very scary. I didn't get any treatment for my eye for a month because I had to wait so long to see an Ophthalmologist. They prescribed me a Dilator to protect my iris from damage and Steroid drops for my eye to clear inflammation, which was $100 for a very tiny vile which is insane, it wasn't even the best quality steroid either. Immediately after using those steroid drops my Eye began to feel immediately better, the hell I went through was finally over after a few weeks. I couldn't look at any light for months not even my phone screen with the brightness all the way down. I had to take showers in the dark and walk around with a towel over my eyes. Because of the Iritis they tested me for AS and it came back positive and I was surprised because I didn't have much back pain if at all, 2 years later I started to have really bad back pain and eventually spine pain. I am almost 28 now, only had 1 flare up in my eye again about 5 months ago, I immediately got the steroid drops and it went away very quickly, but it wasn't even as close to as bad as last time. I still get flashes of pain through my eyes when immediately looking at bright light, but it goes away within seconds. Thanks to Modern Medicine my Eye was saved with no permanent damage, I still have 20/20 vision , and now that my back pain has progressed I am going to get off the ibuprofen and start taking Humira. Hopefully the medication helps me as much as it has helped others that I know with the same disease, my friend who is the same age as me said it completely got rid of his back pain and he is very overweight and doesn't exercise unlike me who exercises regularly and haven't been over 140 Pounds in my entire life.
      From what I understand, AS is Rare but it's also even more Rare to have bad side effects, like being put into a wheel chair or going blind from Iritis. Majority of people with AS will live a long and normal life, you just have to deal with pain management so I hope anyone going through the same thing stays positive, I had no one in my life that believed my pain or cared even when I couldn't open my eyes to see but I made it through it, just make sure to start doing things early before they get bad.

  • @marinerhally
    @marinerhally 3 місяці тому +1

    Thank you for sharing. I'm 35 been suffering with pain for 10+ years, being passed from doctor to doctor, being diagnosed with apparent 'Fibromyalgia' had an MRI this morning hoping it confirms AS. For year I've been told its just my posture and it's normal, even at times thinking I'm going mad thinking is this all in my head. To anyone suffering keep going ❤

  • @OckhamsRazorOk
    @OckhamsRazorOk Рік тому +2

    Qué bestia el médico que le dijo que no había nada que hacer y que iba a terminar en sillas de ruedas! Tengo APS y pasé por períodos muy complejos y tengo secuelas que me acompañan pero tuve en claro que cuando el especialista no me convencía o veía pocos resultados, debía cambiar de médico. Hay que buscar opciones y no dejarse caer. Si no peleamos esta batalla diaria nosotros mismos, nadie lo hará. Saludos desde Argentina

  • @Fat_sodie
    @Fat_sodie Рік тому +1

    I’m so happy to find this. All the videos are about men. I feel like the only women. The pain in my eyes and hips are intolerable. I’ve been complaining for so long about being tired. Diagnosed at 32.

    • @sai-ns2jy
      @sai-ns2jy Рік тому

      Plz can u explain treatment plain ... Plz give me some suggestions.. Recently diagnosed by AS

    • @Kornkitt3n
      @Kornkitt3n Рік тому +2

      so true, im female and it's refreshing to see others. my sacroillitis is absolutely rabid

  • @rushikeshdeshmukh7761
    @rushikeshdeshmukh7761 2 роки тому +6

    Truly Inspiring and Motivating. Thank You AMANDA!!!! Im RUSHIKESH DESHMUKH, 23 YEAR Young And im also diagnosed with Ankylosing spondylities 'THE BEST' TOday itself. I was down and out Didnt knew what i would do with this untreatable beast, but after watching your story I realized that the so called beast doesnt have me, every thing is under my control and i wont let it come in my way to reach my goals. Im coming to uk next year for my masters program and i would be very thankful if through this platform i can meet you .

    • @YashSingh-rf7nk
      @YashSingh-rf7nk 2 роки тому

      20yo got diagnosed last week... And it's scary lol

    • @gauravbhatt5541
      @gauravbhatt5541 Рік тому +1

      @@YashSingh-rf7nk bhai same yaar 19 saal ka hu aur ye mc bimari lag gyi, aisi dard hoti h kya batau . 1 month pahle diagnose hui h tab se depression m tha ab thoda theek hu but iss dard ka kya karu

    • @power3433
      @power3433 Рік тому

      Ab kaisa he bhai tu Or medicine kya le rhe ho

  • @arkachakraborty2913
    @arkachakraborty2913 9 місяців тому +1

    My journey started when I was 16/17. Initially it was extreme pain in the sacroiliac joint. It carried on, intermittently over the years intensifying mostly during winters. It was diagnosed as Ank Spond when I was 28/29.. Now 34, it has moved up to my rib cage and sometimes even laughing or sneezing is a painful affair. Have to wake up atleast 2 times during sleep, due to pain. Although yoga/swimming is advised for flexibility, I stick with very high volume moderate intensity resistance training, to train my mind, to endure physical pain.. On medication, my doc has prescribed TNF blockers, every 4/5 weeks, which helps to some extent, as well..

  • @lidiatorrescannon9457
    @lidiatorrescannon9457 2 роки тому +23

    My AS symptoms started with my right shoulder when I was 16. I had mixed diagnosis for years depending on consultant. Most were adamant it couldn’t be AS, despite having the gene and my mum having AS, because there wasn’t any inflammation in my back.
    It wasn’t until I was 24 I started experiencing textbook AS back pain and it took some convincing for my GP to refer to rheumatologist (she kept insisting it was because of my mattress). I was seen by rheumatologist a couple of months later, X-rays were normal but MRI and blood tests confirmed inflammation and disc degeneration on my sacroiliac joints.
    I was finally diagnosed at 25 and my rheumatologist (who specialises on AS btw) confirmed that the shoulder was also due to AS. So 9 years of pain before I was diagnosed, despite knowing I had high chances of having it.
    He explained that in teenagers, AS sometimes shows in the shoulders and/or knees before there is any deterioration of the back.
    For my mum, it was almost 20 years of pain before she was diagnosed. They kept thinking she was making it up because she kept getting pain in different places. Shortly after being diagnosed, she had to get her hip replaced because the joint had fuse together. That’s why, the sooner you get diagnosed, the better.
    I am now 31 and waiting on starting biological treatment, which has been delayed multiple times because of COVID
    When I have a flare up, I find that I get the most relief from doing gentle yoga in the morning or a hot shower.

    • @Kandykizziz
      @Kandykizziz Рік тому +1

      Mine started in my shoulder then moved to my hip it was the worst ache & pain 😣

    • @sumbalimrankhan
      @sumbalimrankhan Рік тому +1

      Can you explain the treatment you are getting and from where?

  • @Danni_art_ist
    @Danni_art_ist 6 днів тому

    These videos really help I have this condition too

  • @Dan-ot2ry
    @Dan-ot2ry 23 дні тому

    Great ending of the video, great attitude, keep it up dear lady, I wish you health on your journey!!

  • @davidsivak121
    @davidsivak121 3 роки тому +24

    Hi I I'm 43 from London and I have been living with a AS for 10 years and I had all the pain so understand about all the pain and suffering and then I have been told to try gluten-free and dairy-free and I did really change a lot. No pain no painkillers.
    I encourage everyone to try it.
    Don't give up. 🙂

    • @majiddar5695
      @majiddar5695 2 роки тому +2

      So please explain your story and also share your daily meals please

    • @WwJd2tmthy1
      @WwJd2tmthy1 2 роки тому

      Yes, a healthy diet is the best medicine!!! Take sugar and preservatives out if your diet, and you will starve AS!!

    • @vasanthkumar-hf2nk
      @vasanthkumar-hf2nk 2 роки тому

      some says trying new diet will make the symptoms go way temporarly and they evemtually come back. how is it for you. still you are pain free ? please reply i will try that

  • @seedofstun
    @seedofstun Рік тому +11

    I'm male, 22, and I was diagnosed about a year ago. I've started noticing symptoms when I was about 17 with flares every so often, but I figured that was just regular pains from being more active as I was getting older. Fast forward to just before I turned 20, it flared really bad around Christmas time. Once I came back to work feeling like I couldn't even stand, I constantly had to sit, and this would last for ages. It eventually got to the point where even thinking of getting out of bed would cause so much pain, and my manager gave me one shift a week in hopes that I would recover from this seemingly mysterious pain. My room mate wasn't very helpful either, but long story short I was running dangerously low on funds because I couldn't get into work, and I lent them money which was never returned to me. Later that summer I eventually moved back into my dad's house again. I don't think I have ever been so depressed in my entire life. The weight of the world's expectations on my hurting shoulders and back made me want to cry.
    I am getting better now thankfully; the family doctor that my dad had before he quit got me with a Rheumatologist (and funny story, the first one he recommended me to didn't even exist), I made a plan to myself to start going to the pool, and it did me well. I stopped going to the pool for about a month and a half though, what a mistake. I was thrown off by the new price of the membership renewal, but if you're reading this now, remember this:
    Your treatments may have a price, but your health is priceless. It is never a bad idea to invest in your health because it is the most important thing, and its so easy to take for granted sometimes.
    With that being said though, I am curious about what kind of treatment plan you went on. I do have a membership at the pool, but I only tend to go on days that I work since I live a fair way from town and would prefer not to waste gas just to go there and come home (a little contradictory to what I just said lol), it would be nice to have something I can follow for when I'm already at home.

    • @Channelsettings667
      @Channelsettings667 Рік тому +2

      What kind of work do you have.. I also have AS.. I feel your pain when you mentioned you have the world on your shoulders.. I cried when I heard that.

    • @seedofstun
      @seedofstun Рік тому

      @@Channelsettings667 I was working at Little Caesar's at the time, but thankfully I work at Gamestop at the moment. Clearly its not the most back breaking job, but it's also not a job that anyone with AS can just "choose" to do. (also the management has been practically non existent for the first year of working there, and clearly even with a lax job, I still hurt.)
      Are you currently employed?

  • @pottsofroses1
    @pottsofroses1 Рік тому

    Thank you for your honest report. I have just been diagnosis at the age of 73. After being diagnosed with rheumatoid arthritis all this time.

  • @AGUIDANCE
    @AGUIDANCE 2 роки тому +3

    This video gives me so much hope . I was about 18 when I first felt the pain and was diagnosed for Ak about 2years later . I’m 34 now and this video really gives me hope … thanks

  • @annetums
    @annetums Місяць тому

    I’m very grateful for this video! Thank you

  • @vincentg
    @vincentg Рік тому +1

    I can relate to all of this. You are a great ambassador for AS.

  • @ryderoreilly9807
    @ryderoreilly9807 Рік тому +1

    Thank you for your story. I'm 36 turning 37 in October. I only got diagnosed because I fought the health system here in New Zealand. We came up against the same "blasè-ness' with the same BS of sorry nothing we can do. I thankfully have extremely comprehensive medical insurance ontop of the public health and that has saved my life, literally. I'm now heading into surgery #25 & 26 with both my shoulders needing to be redone and bursitis removed. I'm a competitive horse rider and I will never let AS define my one and only life.❤

  • @elizaschade5928
    @elizaschade5928 2 роки тому +18

    I’d loved to know the treatment plan. What did they finally do that helped!? Please share.

    • @Kat-wr2cq
      @Kat-wr2cq 7 місяців тому

      Another commenter has explained she’s taking biologics. At 4.15 in this video she talks about disease-modifying medication prescribed. Presumably thats what the Irish rheumatologist later prescribed .

  • @rebeccathompson990
    @rebeccathompson990 2 роки тому +5

    Thank you so much for sharing! I was also diagnosed with AS in Australia and found it so frustrating that every rheumatologist I saw told me I had to get worse to get better treatment! As a 21 year old it was so disheartening to have doctor after doctor dismiss my pain, saying it wasn't bad enough, yet I was only able to get around on crutches due to the pain in my SIJ!

    • @ktcee803
      @ktcee803 2 роки тому +1

      have you been able to get help? in this video, she doesn't say what treatment she received.

  • @jasmineevadney4767
    @jasmineevadney4767 5 місяців тому

    Thank you 😢 I am suffering and I believe this is what I have. I know I have to keep moving.

  • @sourabhpatil4813
    @sourabhpatil4813 3 роки тому +47

    This lady seems to be more flexible than most of the normal people who don't have ankylosing spondylitis lol... Motion is lotion for the body, exercise reduces stiffness and inflammation

    • @Darealdopegirl
      @Darealdopegirl 2 роки тому +4

      Its a plus for her to be flexible. I also have AS and am also very flexible, exercise helps my body alot, when I dont exercise my body ceased up. I need to change my diet which I believe make my condition worst.

    • @jotheakston2405
      @jotheakston2405 Рік тому +2

      Yes but when you have RA, anaemia and fibromyalgia it is so debilitating. The fatigue I have does not allow me to exercise like this, plus I am 52.

    • @kl2894
      @kl2894 Рік тому +3

      @@jotheakston2405 You don't have to exercise this hard, but you do need to move and do stretching exercises. It really does help. And over time you will be able to do more. If you do nothing it just gets worse and worse until you can't move at all without help. I'm 53. It's never too late to start.

    • @GracielaGordon-v2w
      @GracielaGordon-v2w 7 місяців тому

      👍

    • @SummerSetBytheSea
      @SummerSetBytheSea 7 місяців тому

      And can aid in lowering blood pressure too. I found out by keeping a daily BP test, three times a day for almost two months. Like clockwork my records had revealed I could drop my BP at least 30-35 points within a 24 hour period! But when I didn't do a one hour stretching & 10 minute treadmill back up my blood pressure went! So, keep track!!
      For at least four out if the past five years alone I couldn't get enough Glacier filtered water 💦 too!! Stay hydrated!!!

  • @JPCruhz
    @JPCruhz 2 роки тому +14

    I'm writing this comment with tears in my eyes, because after watching so many youtube videos and twitter comments about people with the disease, I started thinking maybe I should just end it all before it becomes unbearable.
    I haven't been diagnosed yet. My pain started about 4 years ago and I've been taking ibuprofen ever since. I've been to 6 different doctors, two physiotherapists, and two chiropractors. Got a lot of MRIs and X-Rays. They diagnosed me all sorts of stuff that kind of explain parts of it, but not the root cause. Finally yesterday I googled: "My back pain is unbearable!" And an internet quiz from appeared. Spam, I said, but I did it anyway. I don't remember the name of the quiz (I was stoned and by the way, it makes the pain much worse).
    So I remember it asking me about a bunch of stuff I didn't know, but then there were questions like: Where is the pain? Lower back, but also neck. Actually, the whole thing. Does the pain feel better when you rest or when you are active? Active. Does it get better with pain killers? No. And so on and so on. The it said: "You may have ankylosing spondylitis". I looked into it and there it was. All my symptoms.
    I will book a Rheumatologist right away, but I can get all the help I need from the internet and people who can give me support. I am just starting college, and I want to finish it. My dream is to become a Clinical Therapist and help people. I have to read a lot, which is hard to do when you can't stay still.
    I appreciate any support and and information. I want to stay positive and stay alive.

    • @traciedurant1919
      @traciedurant1919 2 роки тому +1

      Don’t give up. Keep trying to find help and the support you need. I prayed for you today.

    • @JPCruhz
      @JPCruhz 2 роки тому

      @@traciedurant1919 Thanks a lot. Your comment fills me with Determination.

    • @mariafernandasalazar33
      @mariafernandasalazar33 2 роки тому +1

      Dear JP I know exactly how you feel. I have had this for over 15 years with predominant neck Pain. I have gone to doctors without a diagnose for 3 years, going to More than 100 appointments between diferent specialists and therapists. I have been depressed for many years and didn't know, no one believes in your pain. You need to be pretending you áre fine and this Is awful. But I now know I am a heck of a strong person and perseverant so wait for the diagnose. This Is the best you can do and in the meantime follow the "London diet" this disease Is related to a bacteria and unbalance in the gut. You can Ask them to make you the blood test for HLA-B27 this one is to show you have this SA disease.

    • @frosty_silver_fox4292
      @frosty_silver_fox4292 2 роки тому +2

      My story is almost a mirror image of yours. I feel all your pain.

    • @iovanamelendez5958
      @iovanamelendez5958 Рік тому +1

      I hope you’re well. Look up healing at a cellular level. That’s what I’m on right now to help me heal from the inside and not be on pills for the rest of my life.

  • @LimaCr
    @LimaCr Рік тому +2

    Thanks for sharing Amanda! Its really motivating for those who have the disease. My wife were diagnosed with AS couple years ago (her mother also have AS) and we were, like " that is it... doenst have cure, its should get worse and worse by the time..." but I decided to go further information by my self - local docs doenst seem to understand quite well all the possibilities to fight this.
    I`m sure I can help her to win this. Everything Amanda said in this video was really good to hear.

    • @kl2894
      @kl2894 Рік тому +1

      I was only diagnosed with AS in my 40s although I've lived with it since I was 15 (I'm in my 50s now). It doesn't always have to get worse. I control mine with Tai Chi and other exercise, especially walking. I stopped eating sugar as much as possible and improved my diet generally. I have a couple of fused vertebrae so I always have some pain in my neck and shoulders, but it's easily bearable and I am able to live quite well without medication or pain killers. I have the occasional flare-up and need physio, but in general, I feel better now than I have for years. The key is exercise and movement, particularly exercise that strengthens your core and keeps your joints mobile (Tai Chi, Yoga, Pilates, martial arts). It's never too late to start and the benefits are enormous. I wish your wife luck on her journey. Also, no idea if it actually helps, but I always wear a copper bracelet with magnets. They're supposed to help if you wear them long term. I don't know if it actually does, but it might be worth a try.

  • @KevinTspirit
    @KevinTspirit 2 роки тому +5

    Thank you for sharing your inspiration. This September will be 4 years diagnosed with AS. The first 2 years I was treated with biologics, and I was active daily and at work. 3rd year lost biologic because of insurance change, and all the pain plus new complications have set upon me.
    I still stretch and go for walks as much as I can, but need a way to get back in with rheumatologist and treatment. I was diagnosed at 50, but 20+ years late.

  • @MohammedDawood-g9i
    @MohammedDawood-g9i Рік тому +1

    Thank you Amanda for sharing. I can relate to everything you said, and i'm really happy that we can move again.
    As you said "I may have AS but AS doesn't have me"

  • @ReRoy8
    @ReRoy8 Рік тому

    Thank you for the motivation. Knowing how to muscle through the pain remains a challenge, and having the tenacity to get through it is a goal. After 40+ years of this, it's how I live my life. It's always good to see folks "hanging in there" and enjoying life as it is.

  • @fatinshahriar7859
    @fatinshahriar7859 6 місяців тому

    I am also a patient of (AS) And I did think that it really helped and motivated
    my mind to practise and feel reliable to struggle more but this struggling will bring
    a piece of cake One day. I strongly believe that I would be able to do this and have relief from
    The Pain and So Sweet of you.

  • @glovere2
    @glovere2 8 місяців тому +1

    It's a wicked and unpredictable thing. I held out pretty well until my early 40s. The illness took a nasty turn and just shut me down. The Humira I switched to nearly killed me. It gave me extreme insomnia that lasted for 4 years after I stopped taking it because it stopped working after 5 months. Much later I found a better treatment that has been working for 7 years now. Instead of the 3 bouts of uveitis I would normally have had in that time period, I had only one very mild one and by now in my late 60s I have very little pain. I would trade that for not having fatigue. That's the game changer that just sucks all the goodness out of your life. Everyone is different.

    • @glenyoung1337
      @glenyoung1337 2 місяці тому

      Can you share what treatment you do now?

    • @glovere2
      @glovere2 2 місяці тому

      @@glenyoung1337 It's an interesting story. I had a horrible experience with Humira that nearly killed me. I was fearful of another biologic and just so happened to find a pain doc who came up with his own AS treatment, using leflunomide (a DMARD) and dapsone (an antibiotic used for leprosy). The combination has a similar effect on TNF proteins. Two generic pills with no side effects whatsoever. After 30 days my illness was essentially in remission. That was 7 years ago and I have not had one bout of uveitis since (previously, I got them every 2 years like clockwork). At 67 I have very little pain when before I needed 2 canes to walk to the bathroom in the morning. I got lucky. You have to keep trying different things to find what works for you. Who knows where I would be had I listened to my rheumy and went on Otezla. I had a starter pack and it scared the crap out of me based on my previous experience. Sometimes old generics work better with fewer side effects. Every case is unique. Good luck!

  • @roshvettiveloo1693
    @roshvettiveloo1693 Місяць тому

    I was diagnosed in 2019..I'm 47 now n there is less known treatments here..I was told about 6steroid injections that wud HV same physical outcomes as cancer treatment wud HV so I chose to not have it..I live with excruating pain daily but Being a psychologist by training I work thru it alone ....thank u for your sharing.. I don't feel alone...my first symptoms were early as an eleven year old with tearing pains in my hips when I exerted thru forced exercise...

  • @girishvartak5589
    @girishvartak5589 Рік тому

    Thanks dear Amamda for sharing such an honest presentation. Very touching and very helpful.
    Thanks once again.

  • @tomprovan50
    @tomprovan50 7 місяців тому +2

    Hi and what treatment did you use beside exercise? Any supplments/

  • @FenellaWildman
    @FenellaWildman 4 місяці тому

    Thank you for sharing.... I am going through what you have been going through...it helps some times just to know your not alone in this situation... sending a hug to all others that may need it. at times AS is rough we are unable to move the way we want to but must appreciate how we move... i look forward to more inspiring videos
    kind regards

  • @34efi
    @34efi Рік тому

    Hi Amanda. I enjoyed watching your story. It seems that you live in a pastoral and pleasant place, it's great in general, and in particular to reduce stress which can also worsen the symptoms of the disease. I am Efrat, 48 years old from Israel, and I also deal with ankylosing spondylitis. Right now there is a war here and a lot of uncertainty, this combination with the symptoms of the disease - is really bad. I hope that days of peace and quiet will come soon. I wish you to feel good and continue to be active.
    By the way, your dogs are adorable!

  • @jovipk1
    @jovipk1 2 місяці тому

    Well done, you are courageous and resilient. I am following low starch diet and intermittent fasting plus dry fasting once every week. Suana with cold showers also helps, good luck on your journey of recovery 😊

  • @andreakarlak
    @andreakarlak Рік тому +1

    Thank you for Sharing !! I was diagnosed two years ago, and since then, I’ve been taking immunobiologicals. Truly inspiring to know about your successful treatment.

  • @makenziesimula9166
    @makenziesimula9166 2 роки тому +1

    Thank you for sharing,
    I am 17 years old and was recently diagnosed with Ankylosis spondylitis.

  • @faithbaptist2050
    @faithbaptist2050 6 місяців тому

    I was diagnosed 49 years ago the doc just gave me pain killers x said some people end up in a wheelchair by they are 50yr.no advice.l take suppliments x low carbs diet also use the gym this has helped me.but still get flare ups.x

  • @Harshharsh111
    @Harshharsh111 Рік тому +9

    Ankylosing spondylitis, it turned out I had it all my life since I was 9, And thought everybody just live this way, a fall that caused complications and a blood clot landed in my right lung, I was hospitalized and was sent home to faint and have a more severe damages from a fall back into the tub and my body was hitting and slamming everything in the way down , hospitalized and sent home , to gain again and again, and couldn’t walk for 7 months, then ACDF spine surgery put me back in bed, then was just that , 7 years of extreme pain and finally my neurologist said I need to see the rheumatologist, diagnosed with AS, put on Humira, and let go, as if the pain will take care of it self , I’m 52 male. lost my little family because my ex freaked out and was advised by her father to leave, he hates and resent sickness, he once told me : whatever that shit you have, it’s your problem and it seems that you won’t get any better, and my daughter doesn’t need this in her life anymore, it has been a long life and I got used to having such terrible people around, but finally I stood for myself and decided to cut off ties with anybody who was mean or jerk, my condition is already a stress based disease, and anxiety hit when frustrated with situations , I decided that a guy with such issues shouldn’t be married and when my ex-wife wanted to come back, I politely declined, I’m living day to day, dealing with a sketchy medical system that pretends to know about pain, and always have to go to different doctors to see who will be decent to keep me under their care, I found that good people aren’t really as abundant as you’d think, and I’m thankful that I’m able to get around and keep my moral high. Cheers.

    • @Channelsettings667
      @Channelsettings667 Рік тому +1

      I have AS.. I completely understand.. I'm trying to find out what kind of jobs are out there for us..

    • @lovethyneibor22736
      @lovethyneibor22736 Рік тому +1

      @@Channelsettings667 what is your opinion on Benatar's asymmetry argument?

    • @Channelsettings667
      @Channelsettings667 Рік тому

      @@lovethyneibor22736 what do you mean

    • @elzixa
      @elzixa 10 місяців тому +1

      I feel for you. I have AS too, and it's bad. It really opened my eyes about who are the people who love you and you can count on. Now I am weak and can't do shit. Had to quit all my hobbies and work. I have never been this alone in my life before. I started biologicals and got unthinkable side effects. You have "sisu" as we say in my language. This is what you need to overcome hardships of this magnitude. Most people seem insincere and fake to me now. Feels like I was living a lie all my life until now. I wish all the best for you from Finland. Never give up!

  • @alisalaska1786
    @alisalaska1786 3 місяці тому

    I haven’t been able to lay on my back and not have extreme stiffness trying to get up since I was in 7th grade. I was just diagnosed with psoriasis at 33 and I think I’ve had misdiagnosis of back pain repeatedly since I was 13 years old. I was shocked at how much I identify with the symptoms and stories I’ve read about. It’s very sad how badly healthcare works sometimes. The specialists don’t work together with the pcp. Advocating for yourself is exhausting. I live a busy life! I shouldn’t have to investigate and play doctor to get serious help after 20 years of symptoms.

  • @tibortoth6847
    @tibortoth6847 8 місяців тому +1

    If anyone is wondering about what treatment plan she is on, it is most likely Cosentyx, because the video is sponsored by Novartis and that is the AS drug that company makes.

  • @dja-juicepowersourceproduc2887
    @dja-juicepowersourceproduc2887 10 місяців тому +1

    Great story thanks God bless 🙌 🙏

  • @scientistatwork4667
    @scientistatwork4667 2 роки тому +2

    thank you Amanda!

  • @lisalarson9544
    @lisalarson9544 7 місяців тому

    Thank you for sharing Amanda 🌅 So inspiring

  • @emmalouie1663
    @emmalouie1663 Рік тому +2

    My brother had this and he had to go to nine doctors before someone knew what it was sadly. Feel sorry that he was in so much pain we didn't really understand it very well at the time. Now doctors finally know what it is.

    • @eivindgjengstjohansen9625
      @eivindgjengstjohansen9625 10 місяців тому

      My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
      i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...

  • @greenvalley7892
    @greenvalley7892 5 місяців тому +1

    Being a patient of AS...It feels a bit comfort knowing I am not only one to suffer..😂...Its also encouraging..

  • @StultifiedGraphics
    @StultifiedGraphics 3 роки тому +7

    What was the treatment plan? I got hopeless doctors who have no patience for their patients. Really need help here. Single dad 3 kids demanding job that i just cant change i need to be able to work but its suffering mentally, physically, and the quality of work im doing is too and its just a matter of time before someone notices

  • @TheHomebodyGirl
    @TheHomebodyGirl Рік тому +2

    I never heard of AS before until I was diagnosed at the age of 51 . I was misdiagnosed for many years. 😢

    • @eivindgjengstjohansen9625
      @eivindgjengstjohansen9625 10 місяців тому

      My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024
      i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...

  • @muhammadjamshaidiqbal6001
    @muhammadjamshaidiqbal6001 Рік тому +1

    I am diagnosed with AS back in July after three years of pains. I am put to biological medicine and that got me a bit better in the first month. I think changing the life style matters a lot in this case as my most of the times, I am sitting home on my bed and working. I am trying to change my life style but it will take a bit of time.
    Hope to get better soon.

    • @ThinkUpTelugu
      @ThinkUpTelugu 7 місяців тому

      My wife is AS patient now. Due to pregnancy. Where can I get my wife treatment to be done.

    • @ThinkUpTelugu
      @ThinkUpTelugu 7 місяців тому

      Little baby is 20 days old. Whole family sick now.
      Please help me with details

    • @muhammadjamshaidiqbal6001
      @muhammadjamshaidiqbal6001 7 місяців тому

      @@ThinkUpTelugu go to a good rheumatologist. It should help

  • @kriswolfiecabrera9035
    @kriswolfiecabrera9035 Рік тому

    I was diagnosed 10 years ago with AS and Lupus...and I understand the hot searing pain....

  • @Vixinaful
    @Vixinaful 10 місяців тому +1

    Try sharkliver oil and green lipped clam. Omega3 and 6 is supposed to help. :)

  • @Rossisearle
    @Rossisearle Рік тому

    Great... Everything links to my self and make me cry..

  • @cherie3000
    @cherie3000 Місяць тому

    I think i have this. For so many years had so much pain. Dr after Dr. Finally diagnosed with fibromyalgia. Never had this diagnosis tho. My spine is fused lower back and upper mid back. When I bend forward you could eat dinner off my flat back. Lower back is the same. I have arthritis on my feet as well. Wore orthotics for years. Feet have fuse as well . I treat it by exercising and yin yoga.

  • @ikeanthony994
    @ikeanthony994 Рік тому +3

    You can reverse your Ankylosing Spondylitis by changing your diet which involve stop eating gluten foods like wheat, rye, barley, stop eating grains like rice, corn, oath, stop eating night shades like pepper, white, red or yellow potatoe (you can eat sweet potatoe), stop eating vegetable oils, peanut, stop eating fried foods. stop eating processed foods, stop eating white sugar, stop eating pasta, bread, dairy (milk), eggs, chicken. You can make smoothies like blending green vegetables like kale, spinach, cucumber, you can also cook vegetables, eat a lot of vegetables, eat coconut, avocado, eat home prepared/made whole foods like sweet potatoes, yams and beans. You can also do exercise like walking, cycling.

    • @CleopatraWon
      @CleopatraWon 6 місяців тому

      So, the Medetirannean Diet???

    • @hasene190
      @hasene190 2 місяці тому

      Proteini nereden alıyorsunuz?

    • @jodygirl
      @jodygirl 2 місяці тому

      No, a good diet is helpful but will not fix the problem.

  • @AnkylosingSpondylitisMan
    @AnkylosingSpondylitisMan 3 роки тому +3

    Thank you for sharing your story

  • @TheGanji26
    @TheGanji26 2 роки тому +4

    Please share with us the treatment plan u were offered...please

  • @pankaj3601
    @pankaj3601 Рік тому

    I am also a geologist and an ankylosing spondylitis patient as well. I live in India. Whenever i get a flare up , i watch your video. You live in a beautiful place, i always wanted to visit Tasmania since i learned about Tasmanian wolf when i was a kid. Somethime i see random beautiful places on google earth that are close to nature, Tasmania is my favorite. I will travel to Tasmania someday for sure, i want to take a stroll in the tasmanian woods, hug those trees and sleep on the grass. I wish i could settle there forever. Lots of love and best wishes to you and your husband from India 🎉 🎉🎉

  • @paulspacco4397
    @paulspacco4397 9 місяців тому +1

    Thank you for sharing, I’m newly diagnosed and I was wondering if you might be more specific with the treatments that work so well for you?

  • @JaiShriKrishna009
    @JaiShriKrishna009 Рік тому

    Thanks for sharing🙏

  • @AnkylosingSpondylitisMan
    @AnkylosingSpondylitisMan 10 місяців тому

    I was diagnosed with AS 5 years ago. Its been quite a journey so far!
    I take the biologic Adalimumab, plus anti inflammatories.

  • @karentatum2827
    @karentatum2827 Рік тому

    You are so inspiring-thanks for sharing.

  • @stonew1927
    @stonew1927 Рік тому +1

    Glad she was able to get the proper treatment, yet she never mentions what was different about her treatment in Ireland as to Tasmania, other than the doctor in Ireland did a better job of managing her pain. Would be nice to know what specific medications or mode of treatment she received to alleviate her symptoms.

    • @Stigz34
      @Stigz34 Рік тому

      Exactly . 10 mins no answer

  • @TheOnlyOneTrueGOD
    @TheOnlyOneTrueGOD 2 місяці тому

    please post your treatment plan!

  • @ariairida
    @ariairida 2 роки тому

    I cried watching & hearing this ♡

  • @manishabhagat4350
    @manishabhagat4350 2 роки тому +3

    What treatment you have taken along with this?Please Describe

  • @RameshwarSukhraj
    @RameshwarSukhraj 2 місяці тому

    Glad to hear u r a lot better. Can u please share what r the things u do to get better?

  • @Ether820
    @Ether820 2 роки тому +4

    Thank you for sharing. Been suffering “extreme growing pains” since I was 12 and they never stopped. Making it through days where I couldn’t get up or walk. I wasn’t diagnosed until just a few months ago at 30. Parts of my tailbone and hips are fuzed. Having a name has helped me gain some piece and better identify the things that work and don’t work for me. I was all set up to take TNF-Alpha inhibitors but I’m dragging my feet to do so. Motion and stretching 🙆‍♂️ have helped me an incredible amount. Water is my favorite. Opens me up so much. But my desk job makes it hard to stay in motion at times. Focusing on joint strengthening. I hike often.

  • @thomasliu4545
    @thomasliu4545 2 роки тому +2

    Great and inspiring!

  • @timyrennaiker8251
    @timyrennaiker8251 11 місяців тому

    Thank you gave me some hope to get better sometimes mind over matter

  • @syliadalth
    @syliadalth 3 місяці тому

    Hands down to you, I want to live a life just like yours. I was diagnosed at 30 ish, the pain started when I was 19. I'm 33 now, and trying to change my relationship with the pain, no letting it rob me again. I lost my medical residency because of it, and so much more. But it made me a very empathic person, very insightful. The medication you were given was related to opressing your inmune system?

  • @stefanbogdanov2425
    @stefanbogdanov2425 Рік тому +1

    Dear Amanda thanks for sharing your story. I'm with AS from 2005 as you but I'm now 54. My treatment is with immune suppressor Cosentyx 300ml. Please can you share in details your treatment with dr Fahid?

  • @tanishqvaibhav1216
    @tanishqvaibhav1216 6 місяців тому

    I really wish if doctors could find some sort of treatment for this. It really kills you when you see your friends enjoying playing and having fun and you are just unable to get off bed. My whole childhood was wasted suffering this pain. I'm an adult now but still have unbearable pain. Please god save us from this pain.

  • @gretchenharteis9685
    @gretchenharteis9685 5 місяців тому

    What treatment/medication did the doctor give you? I use a no/low starch diet and that has been the trick for me. But- I like you- had 10 years of severe pain until I got diagnosed. This was a touching video. Thank you. What made you decide to produce this video?

  • @lestersandoval2975
    @lestersandoval2975 2 роки тому +1

    IM 40 and got diagnosed 3 years ago ... i had a bad reaction to an immune supressent and live daily with stiffness and pain .. im lucky that im able to still go out and run ... i can handle alot of pain but i have my days .

  • @debjanilaha8718
    @debjanilaha8718 2 роки тому +1

    Can u pls shae the types of exercises u did from the beginning of your journey ? Thanks in advance

  • @ZoeKrouner
    @ZoeKrouner 8 місяців тому +2

    What was your treatment plan?