My Ankylosing Spondylitis Story | Inflammatory Arthritis in Your 20s | Dash
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- Опубліковано 25 вер 2024
- What's life with inflammatory arthritis in your 20s really like?
In this video, I provide a detailed account of my experiences with autoimmune conditions - starting with uveitis (eye inflammation) when I was 19 to being diagnosed with Ankylosing Spondylitis (inflammatory spine arthritis) in 2020 when I was 27.
The ups, the downs, the unpredictability and the chronic nature of these conditions - all covered form a personal perspective.
What's been your story? Does this help?
Let's keep each other motivated and positive to beat this thing/live our best lives.
Dash
Your story is my story! I'm 26 and have been struggling with the same pains since I was 19. I otherwise feel like a healthy, young, independent woman but AS really hurts and brings me down. Makes me feel so old and achy. Thanks for sharing. Please continue.
I m 26 and struggling with same
Goos video. I really feel that people need to know that the spectrum of progression, and experience generally, for AS is very wide; many people live completely normal lives with the disease 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 am 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. So many of these videos and articles focus 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 manage. Why is it we only see the worst of AS online?
Yu ,creyzi
Thank you for sharing. I always knew something was up my whole life. My parents just called me a hypochondriac like my Grandma. Turns out my Grandma had issues with her back and Rheumatoid arthritis... so I don’t think she was a hypochondriac. 🤔 It was sad to hear, but more so of a relief to get the diagnosis. I actually cried when listening to other people’s stories. It’s nice to know that I’m not crazy... every doctor just tries to prescribe drugs to cover up symptoms and with me being a healthy active person my entire life, it just didn’t seem right to pretend like a drug was the answer. Hearing your story of Uveitis and the way the antiviral helped... makes me wonder about flare ups and connections with other viruses in the body. I never had issues until after I had my kids and was later diagnosed w a similar virus. I’d always blamed the back pain on my mattress. We’ve been through 3 mattresses and I still have the pain... so... 🙄 Also, I’ve had a few instances where the eye doc says I had “viral pink eye” and it was the absolute worst thing ever. Swollen, blurry, itchy, watering, sooo scary. Nothing worked. Steroid drops and 2 months is finally what helped. Since being diagnosed last month, I’ve been persistent in finding natural ways to help prevent issues. One weird thing I’ve found is called CryX where you go in a below 0* machine and freeze yourself... to lower inflammation. 🤷🏻♀️ Thanks again for your story. Finding positive people in my search has been very helpful. ❤️❤️
Wow Dash thanks so much for coming out about this. Going through being diagnosed right now. Appreciate your consious effort to share consious positivity and open your world to us all. Appreciate you being so brave loads.
To hear someone going through such similar things at a similar age is almost refreshing! I’m 26 and have been diagnosed for just under 2 years now but haven’t come across anyone else! Really enjoyed your blog looking forward to watching more! 😊 Amazing how much I can relate to!
So I just found you here on UA-cam and I'm definitely going to keep track I have AS and I'm also Hla b27 positive!! Thank you for this video!!!
Had it since I was 22 now 70 been a struggle some times you have to live with it do your best
How did u manage it
Welcome to the AS gang! We have quite the community :)
Dasha, well done in sharing your story. I'm 29, was diagnosed at 25, but had chronic pain from my late teens. Im just wondering, what online communities did you join? Its only this last while that I've started to reach out to others with AS, to understand it better and help my mental health. Please let me know what you recommend. Thank you.
I just got diagnosed 2 weeks ago.. thanks for sharing your story
Hey Dasha , thanks for speaking out about this ! i too have AS , i was diagnosd Oct.2019, and have found it difficult for anyone to know what it even is let alone younger women speak about it ! thanks for sharing your story
I can relate to the uveitis, I've never had a worse pain ever. I also have AS & Rheumatoid arthritis.
Hi Julie, thank you for sharing! Yes, uveitis is pretty scary. How are you feeling now? And AS & RA together is pretty intense - sorry to hear!
Its such a interesting condition how it affects everyone differently. I've had a late diagnosis just recently. But Micheal Slater was diagnosed with AS at 19 I think and went on to have a very successful international cricket career.
Really great to see you've got it under control. Being diagnosed with AS was definitely a shock and a down point for me, but I've been more active than ever and seem to have it mastered it.
Wow! Your story mirror's the journey I went on 12 years ago when I was diagnosed. I made a few video diaries on UA-cam back then. I see my rheumatologist twice a year in London and have been taking humira for 7 years. Can say I'm doing very well. I keep fit, exercise alot, meditate and most importantly of all stretch! Stretching is so important. It appears you are taking a proactive stance on this. Good for you. Staying positive is really important. Stay safe and keep well. Tom
Aww thanks Thomas, I've just checked out your videos - also a great attitude and always good to keep a sense of humour! :) really happy to hear you're doing well years on and I'm sure exercise is a big part of that. Agree that staying positive and motivated is super important, which is why we need more inspiration out there to encourage people :)
Thank you Dash for watching my video. I came across your video through Facebook via an Ankylosing group. What was so uncanny with your story was the bit about Iritis. It was getting Iritis that let me to being diagnosed around 27. The videos I made are so old! UA-cam was very different back then. So much more information and support available to people today. I think you have inspired me to do a follow up video on my channel. keep it up yourself and take care.@@dashofthought6959
@@A8A1111 Ah amazing! Which fb group was this? I think you should definitely record a follow up video - you've had so many more years of the condition now and it's super reassuring to hear you're doing great. We need some more positivity and stories of people feeling in control of the condition and their life - so would love to get an update on how you're feeling physically and emotionally ahout it all now :) and how's your uveitis? Have flare ups completely stopped on the biologics?
@@dashofthought6959 It was shared by Sabine Maerky, NASS London - Camden onto the Ankylosing Spondylitis Facebook group page.
Due to taking biologics I got my letter from the hospital to self-isolate which is frustrating because I work in the social care sector and my friends at work our struggling. So, I have some time to put together a video update.
What struck me after diagnosis was how AS had affected my self-esteem and mood. For years thinking I was weak and not knowing why I was in pain. And the lack of sleep, oh boy! Not being able to lie on my front because of the pain it all added up to quite a mess.
I have not suffered from uveitis for 10 years. I must of took similar drops to you. It messed with my iris and I looked a bit like David Bowie for a while. My flare ups are well under control, also stretching and holding a pose for 1min or more with breathing exercises has been massive help to mood and fitness.
Starting Biologics changed everything. Being able to lift my arm without pain. It was taking the biologics that led me to be able to work out longer. And with the support and guidance from physio therapy built up my strength which I lacked because pain limited my movement. Also exercise releases the best pain killer freely available endorphins! I do think it’s a combination of the Biologics and exercise that have got flare ups under control. 😊
hello. How do you feel now? How are your back and joints? At what age did you get sick? I have been sick for 7 years. I fell ill when I was 18. At this stage of my life, I can no longer practically move because of constant severe back pain. This is due to the fact that the disease is, in principle, rare and difficult to diagnose. So I still live in Russia, in a country where everything is just terrible with medicine. Here, the diagnosis is made on average after 7-10 years from the onset of the first symptoms. One can only dream about treatment with bio preparations and not everyone is given them. The government does nothing to help its citizens. nobody cares. And how are you? How are you treated. How often do you get humira? Are you taking any additional pills?
Hope you have more pain-free days in the future. When I was diagnosed I had inflammation in the left sacrioiloc joint, and unfortunately the joint has permanent damage, so the chronic pain can be extreme.
Well done for sharing your experiences and raising the awareness of A.S.
I too have been diagnosed with sacroiliitis, are u HLA b27 positive ??? .... im not, but ana test is 1.80 and doc says I have mild arthritis
Wow, didn't know that you were experiencing this! Sorry to hear about it, but glad to see how positive you are!
Well done for starting the UA-cam too (: Long overdue 😁
Thanks Kai! It took for the entire country to go into lockdown for me to finally do it haha.
I've got a lot to learn but good to get started :) Thanks for your encouragement and support all these years! Hope all is well with you, your channel is looking fab (y)
Thank you so much Dash! I was just diagnosed with AS last week…
I loved your story the eye thing and all that is the same thing that happened to me..5 years I havent had site in my right eye ..flate ups of inflammation and tears every 6 months that last a week at a time
Thanks for sharing this. I was told today that I have anterior uveitis and I have an appointment tomorrow for bloods and tests to try and figure out why , back pain is something I have just put up with for years I had no idea that this could be the cause. Hope you are doing well. X
Hi Dasha, I really enjoyed your post. Very positive and uplifting. I'm 61 and have suffered with AS since since I was 18. I was diagnosed when I was 25. I thought I was going crazy, waiting seven years for a diagnosis! I presume you have heard of NASS who do an incredible job helping people with AS. All the Very Best to you. Dave.
Thank you David! I have heard of NASS and am a member - they are very helpful and I met some inspiring people. How are you feeling now? Any tips in managing AS?
@@dashofthought6959. Hi Dasha, I start my day with stretches whilst lying in bed, then Mindfulness Meditation for approximately half an hour. It's a great way to kick off in the morning. I find meditation particularly helpful. 😊
@@davidstaines6484 are you feel healthy in the journey of as
I have recently been diagnose w AS I dnt have the gene but MRI and Xray show inflamation in my SI joints and hips 😢 it is very painful. Waiting to begin Avsola infusions. I have issues w my liver so NSAIDS are not an option. It started w L hip pain but it was coming and coming for about 5 years and my work involved walking alot ar that time so I assumed it was that and my scoliosis. But 6 months ago the pain has gotten very bad in my spine hips hands ankles knees ribs shoulders well everything really 😐. Hoping infusions start soon. Ty for your videos ❤
me too. hurt daily
Hi Maryorie, I wondered, have you had to change your job at all due to this. Your story sounds so similar to mine, but I am currently under investigation for axial Spondyloarthritis, awaiting MRI results, using naproxen and neurontin which help slightly but pain is still way too much. I’m finding I need to be able to change positions regularly through the day. If I stand too long I have to sit, if I sit too long I need to stand/move. Up to now have been doing computer based work (coaching and consulting) and have gone from working three days a week a year ago to just about managing one (hours done over several days) at the moment. Perhaps this is a particularly bad year. I also paint and am considering doing something art related. In search of that perfect balance really, how to make enough money and be flexible enough to manage symptoms.
@@fionamackenzie4889 Hi this sounds like me. If I sit too long it hurts have to move cnstantly and if I stand or walk too much it gets really bad. I work at a desk all day. I was also told recently I have Fibromyalgia also. I have had to change to Part time recently and I have a break of 10min every 2hrs. I also have FMLA but dnt use it as much because im Part time now. The infusions have not worked yet. Im waiting to start a new infusion soon.
its a breathe of fresh air to hear that someone is going through similar things to myself & that im not alone :) really great video Dasha I can't wait for more ;)
Thanks , i am Endocrinologist from Egypt, 38 yrs
I am suffering from low back pain for 4 yrs
Recently diagnosed AS
Neck pain, Lt SIJ pain morning stiffness
I will start Biological ttt inshaAllah next month
For the first time ever I, a guy, burst out crying we you spoke about waking up and having excruciating pain. When you talked about turning around and not making it to work it brought back my same memories.
I traveled all through the Americas and lived in México for 9 years. I would have frequent "sciatica" or horrible stiff neck. Flash forward a few years, and I developed Uveitis twice within 2 months, each time a different eye. The eye specialist was the one to tell me something was wrong with my immune system. Referred to primary then rheumatologist, finally AS diagnosed 2 years ago.
Watching your video and thought "human body is amazing, we all have somewhat the same signal something is wrong, then diagnosed ". Cheers to you
Are u HLA positive
Damn Dasha, sorry you're going through this! 😓 It is wonderful that you're staying so positive and strong though 🙌🏼💪🏼 x
Thank you pal! Hope all is well with you, would be great to catch up at some point.
I really felt this video , because this is close to the same exact thing that happen to me..5 years ago my eye got pink and I lost my eye site in my right eye..i had it checked out and found all the same stuff out. They have had me on a bunch of drops everyday and humira injections every week...a cateract covers my whole eye and it has glaucoma in it and all..they dont want to do cateract surgery because the inflammation could get worse , so I've been on eye drops the rest of my life and if cateract starts to melt we will have to do surgery..flare ups in eye are super red and closed and water n , with alot of pain and super sensitivity to light for a week to a week and a half then goes away..comes back every 6 months..sometimes it flares in my legs and makes it hard to walk and if I turn wrong my legs will give out ...But thank u so much for sharing your story , I'm in green bay Wisconsin and I cant relate
I have the same story as you but they told me for years that my eye problem was migraines even tho I didn't have a headache... I've had this eye pain in one eye either my left or right, red, swollen, watering, burning for years. Last year I went to an eye doct and she told me it was dry eye, even tho my eye is constantly crying... This summer I now have hip pain. I woke up one day and couldn't walk, I didn't a cane. I don't run, but I do go on a mile walk everyday and I suddenly couldn't even walk. I haven't gone to the doctor because I feel so defeated. I've been journaling and my hip pain alternates everyday. If my hips don't hurt my eyeball hurts. So far in my journal I have logged 88 days in a row of pain. I just don't know what to do. I don't have insurance.
I recommend you see a Rheumatologist soon. Go to the emergency dept and they can help til then. They should also give you a list of Drs who can help. AS is not a disease you want diagnosed late. I lost my mobility as well after being misdiagnosed and had to see 3 different Drs before getting it right. There is help out there. I truly wish you the best.
Thanks for sharing Dasha! My wife were diagnosed with AS almost one year ago, but just now I'm searching for more information to understand her and help her to improve her daylife quality.
Would you make another vídeo to share how are you doing with AS, what medicines do you take or life style have u change to control the AS and be able to live quite normaly?
thanks again!
Yes, I will post an update this summer for sure! There is also a video on my channel about the medication I'm taking and how much it has helped :)
Thanks for sharing, I am 47 y/o and have chronic back pain since I was in my teens. I didn't think much of it because I was pretty active any healthy. Never had any eye problems, just blurry vision and I wear progressive lenses now. Around October of 2019, I would wake up with horrible back pain and I could barely walk and no matter what I did, nothing helped. December of 2019, I felt 3 huge pops in my back and my back wouldn't straighten out. The pain was excruciating, I have been in pain since then. I found a neurologist and she put me on some medication and nothing really helped. Around June of 2020, she did skin biopsies to test me for small fiber neuropathy and the tests came back very positive. Now I am wondering if I don't have ankylosing spondylitis and it caused permanent never damage.
How are you doing now?
@@dkasper3267 Thanks for reaching out, luckily I don't have ankylosing spondylitis. So far they can't find the cause of the neuropathy. I just try to do the best that I can and stay active.
@Brandon Clemons I'm glad you are doing ok and that you don't have AS. I hope you get some answers related to the neuropathy. I know that there are many possible reasons for it. Good luck with everything, and thanks for the follow-up.
Do any if you with AS having trouble sitting? Luke, do you have pain in lower back and si joints?
I do, sitting long times trigger my AS. Swimming is the best thing to do, avoid sitting long hours. For me, sitting on couch long hours doesn’t trigger anything but office chairs does.
I have ut and do a low starch duet with low histamine....i feel they are connected and helps greatly. Been on pycnogenol and high vitamin c , Quercitin for decades. Last year started NMN, resveratol, tmg, Urolithin A, hyaluronic acid . Hyaluronic acid stopped my dry cracking joints but the biggest star is Urolithin A supplement.... unbelievable antiinflammatory. My pain is gone. NMN resveratol bith fantastic fir repair, reduce inflammation and orotect your immune system.
recently my all body joints start cracking too much.I am also suffering from AS. but still in process of getting diagnosis.because of low markers. any help here with the cracking of joints?
@@amandhadwal3902 Yes!! I have cracking shoulders. Started taking Hyaluronic Acid supplement....what a game changer. I was doing it topical with fair results. I take DoNotAge Pure Hyaluronic Acid 200 mg supplement daily. It took 6 weeks before I noticed the cracking stopped. My whole body feels better....skin got better as well. Recently began a mixture of Omega 3 6 drops mixed with 2 drops of emu oil supplement. My body likes that also.
@@amandhadwal3902 I addition...stopping even rice makes a difference. I love rice but I just can't eat it.
Hello. I have AS too, I have been an electrician for 3 years.
I'm thinking of going back to school, and I was wondering, did you finish university?
I hope you are feeling well these days!
Do you ever have these "optical migrains", where you see little stars/sparkles of light everywhere?
Hey, I have been going through this excruciating pain for some time now and it doesn’t seem to get better. However, I don’t take immuno-suppressants as it could lead to other diseases. I am trying out Yoga now to see if it helps.
Anyhow, thanks for sharing your story. Everything gets better with time and some effort :)
Any luck with Yoga? I've been considering it myself.
ua-cam.com/video/xjPwIQgyaYw/v-deo.html
I'm also at the start of my journey. Uveitis and hlab27 positive at the start of this year have my 1st rheumatology appt in a few weeks still waiting on my mri. Have crippling lower back and left hip pain on and off for years and also experience random swelling and pain in fingers and toes.
The fact that it's on and off is a good sign, at least it's not chronic! Let us know how you get on Jennifer (y)
lived with AS for 30 years, now on low starch diet and in remission
Ah amazing! How bad was your AS? It would appear that those with a milder version of AS respond better to diet interventions, while others still need drugs. And how strict is your low starch approach? Check out my latest video on diets and let me know your thoughts (y)
@@dashofthought6959 I do have a mild AS but then 6 months was hell. I do yoga and meditation, and keep my stress to the minimum, do lots of walking and then a vegan low starch diet. check out the Paddison diet. and I am now drug and pain free and life changing
@@Poleman2 will definitely check out! Haven't heard of Paddison. How long did it take you to see results from diet change?
@@dashofthought6959 what you are doing is healing you're guts microbiol. I have been on a low starch diet for two years now and no pain. it took about four months to really make any gains. check out AS low starch diet group on Facebook. I run a vegan one
Can I add you bro I want to ask you some questions
Okay so what are some of the cures??? Plant-based diet
Thank you sharing I am in process of getting the diagnosis. I am in an area where most Dr don't ref to rhuemologilist unless it is a clear cut as Ra positive and if you female they are living in dark ages that if you are a woman most likely you don't have as. But I am at the point begging to be taken seriously. Bc since 2018 I have had surgery on neck 3 level fusion, then later on not quite a year I had 3 level fusion on t spine and recently a couple months ago had 2 level fusion in lumbar also during this I had right knew surgery because I had bone pieces that had broken away from femur floating around in knee joint and these pieces were 2 cm and there were 3. All of these surgeries were not from any mva accident and no other kind of accident. And was told by one Dr in passing through these issues that my spine looked like I had been a mva and thrown from car. Bc it was bad . And I have been telling each Dr all the issues and o yeah almost forgot the bilateral eye surgery because the uveitis caused severe damage that it caused weakness in the muscles and tendons in both eyes I uveitis and lazy and double vision. I know what I have in my heart but yet to find a Dr in my area to finally say the DX so I can start treatment and get my life back.so glad to hear others stories bc it makes me more determined to not give up . So thank you for starting this blog . It helps more people than u realize ! 🤗
I am 67years I cured my bamboo spine three months after it is diagnosed with diet and exercise only
Tell us more! How did you do it? And what diet?
First of all I am not on any medicine second thing you should have confidence in what you are doing now we will come to the real party of the facts I had developed pain in the month of July I try to manage by exercising but it didn’t ‘t subside then I went to an Sethi surgeon he took the X-Ray and told me that I have a bamboo spine he also told me that at this age nothing can be done and prescribed Gabeoneuron and paractemol I hesitated to take them for almost one month I managed with exercise I felt better some how I came to know the problem is because of inflammation then I started searching for antinflamatory food in you tube likely I got the information that the best antinflamation recipe ie pinaple +turmeric+ginger+pepper + s Lennon +one banana+ one spoon honey make a smoothi of them all and eat at night now in the morning at 6 o clock I eat a spoon full of Desi ghee then at 7 0clock mild hot water then at 8.30 gruel made of organically grown Millet with dry fruits and nuts(soaked ) at 1.30 lunch consist of any vegitable fry +cup of curd+ Pago tablespoon made of millet floor mixed with Mexican mint,one onion,ten cloves of garlic ,salt to tase,two inches of turmeric and one inch of ginger , ten pepper if you need you can use coconut chatni + sprouts of green gram then a at 7 o’clock smoothi (I have mentioned earlier)+ jogging and exercise Iwith in ten days I got encouraging result
Can u suggest me for my son
pepper and nightshades veggie give eye inflammation and yogurt even plant based gives me very deep deep pain in my bones it feels...
I am having AS since my 20s, Now i am in 30s, Sulphasalazine works good for me. Newly discovered medication also looks promy
What’s the name of the meds? Thanks . Love the earings
💗
😊
How are your blood test of inflamation, mean vsh and pcr? X-ray on spine you have? I suppose is no sign on inflamation on x-ray , i wait for your answers, thanks! I have 50 years experience with SA axiale!
Such a relief to find someone going thru same boat. AS has been my friend fr 18 years and I was operated with bilateral THR 13 years ago. Still running on same pair. :D
Dunno wat might happen in future, but ryt now, no pain/flare ups fr years. Fingers crossed! With very consistent exercise routine, I hav never been so fit in my life. Enjoying life to its fullest! But, yeah, tinge of worry abt future. :D
Hi Saurabh, thanks for commenting and sharing your story! Bilateral THR sounds pretty intense but sounds like it was the right thing to do and you recovered very well :) I certainly think that a solid exercise routine is essential in feeling great on the daily - and will be posting about this soon. Any other tips/ management techniques that you think have helped you get to a point of no pain? I'll DM you about a potential interview :)
Can I add you saurabh, I want to ask you some questions plz
@@TheSageer786 sure.
@@TheSageer786 sunsaurp@gmail.com
@@dashofthought6959 please help me i am suffering from ankylosing spondylotus from last 15 years
Does anyone else have constant eye problems? In both eyes? I can hardly use screens or read
I've also took eye steroids in both eyes for years
How r u now How is your health now pls reply I also suffer from this
Are u suffering with AS???
Hellow sister! I hope that you are doing well.Have you noticed height loss for these disease?
I have also ankosing spondylites
I get all this with serious pops and cracks
New game. Take a drink everytime she says "um"
I had 3 injections in my eyeball because of uv'itis.
Did you ride a bike or run a lot?
My doctor recommended I talk to somebody LOL
1. #coffeebreak
2. thanks for sharing !
3. 27 is VERY young
Thanks for watching Nico!
1. Had to try and insert some personality amongst all the medical detail haha
2.
You are beautiful.
You're beautiful
Apin medicine. Is weiv
Ankylosis is the men kind that’s what my Rumotologist said to not say that as a woman
Apin medicine. Is weiv