Being Young With Arthritis (Isn't that for old people?) - Ankylosing Spondylitis
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- Опубліковано 2 жов 2024
- Hi, guys! This weeks video is a bit more personal. It is about my life with ankylosing spondylitis and how it affects me. Now, as some of you may know, it can be hard. However, I have learnt to live, and deal with it, to the best of my ability.
If you have any questions about the condition then please ask.
I am 63 yrs old and was diagnosed with A.S. 45 years ago. My initial reaction to the diagnosis was like your's. Early on I came to the conclusion that I was an 18 yr old trapped inside a 100 yr old man's body. The only thing harder on me than A.S. was the prescription meds used to treat it. Came the day I woke up in E.R. NSAIDs had caused massive bleeding ulcers and I was losing blood as fast as transfusions could replace it.
You can not successfully deal with A.S. on a purely physical plane. If the your body and meds don't kill you, the dark places in your mind will. There is a terrible irony in becoming so focused on survival that we lose sight of what living means.My picture of hell and eternal damnation is one of spending all day on a couch in physical pain weeping over things I've convinced myself that I can no longer do.
It is a given that my body will hurt whether I work constructively all day or sit on my ass doing nothing. The satisfaction of doing things I love keeps me out of that cold dark hell that is given birth by surrendering to doing nothing. Over the past 45 years I have not had a single day when my body did not hurt. Even so I would not trade places with the healthiest person on Earth I am a better person for for learning to not let it rule me. You have my respect and admiration for choosing your own path.
Thank you so much for sharing your story! I totally understand your perspective in regards to "my picture of hell and eternal damnation is one of spending all day on a couch in physical pain weeping over things I've convinced myself that I can no longer do." That is a dark place to fall into. I wish you all the best for the future.
you are not suffering enough if you wouldn"t trade your place with the healthiest person on earth i would definitely trade my place! am 22 years old and been living with chronic pain for 3 years now. everyday in pain so much with chronic fatigue thinked about death everyday and wished i was never born. i havent learned anything from my chronic pain except that its ruined my life. all my body cartilages are seriously damaged. left knee torn patellar cartilage, neck with ostheoarthritis and stenosis cant even sleep without pain and changing positions every second, back pain for months now can"t stand up for too long have to sit or lay on the bed. broken nose since i was like 4 years old i am a chronic mouth breather which causes alot of problems as well such as dry mouth, cracked lips, dehydratation, choking eating food (almost died because of that) and poor quality of sleep due to bad breathing which is probably the reason of why i am always tired and exhausted. i wish i was healthier and i would have done anything to be, i already tried my best i did a surgery for my knee and its not successfull, i just recently done a surgery to my nose 13 days ago from today and i still breath from the mouth bcz my nose is still blocked but we will see in a month if it will get better otherwise might go for a second surgery. for the spine i have paid 700$ on mri, seen 3 differents doctors and yet am waiting to get an appointement with the physician. Also have chronic tinnitus in my brain a really loud noise but that one i got used to it. first months were hard but now i just ignore it which i cant do with MY PAIN! you wouldn"t have lived 45 years of chronic pain on my body i guarantee you that. i myself wish i won"t live that long it will be a miserable torture.
@@L0uZa I am sorry to hear (or read) that you are suffering so much, and I know that anything I say cannot take away the pain you are feeling. I wish I could definitively say that it will get better with time, but those things in life are not guaranteed. I do hope that you find the best way YOU can deal with what you are experiencing - whether it be mental, medicinal or anything else. Wishing you all the best, Vert.
I am right there with you. The mental symptoms are killing me now. It's the physical symptoms putting me in a really dark place mentally. I'm so tired of fighting. No one around me understands. I keep trying and trying everything. I'm so sick of trying. The meds are horrible. I stopped them. I am currently trying diet. It's hard to figure out what I can eat and so far it's not much. It does give me hope. If I have to give up basically enjoying eating so be it. Anything is better than ankylosing spondylitis.
Thank you for making this video! I was recently diagnosed with AS and I'm in my late 20s. I've been reading so much negativity about it and this video really helped me feel more positive!
It really helps hearing others who I share the same experiences with. Its nice to come across people who completely get how I feel. Not people who suggest things to me based on having no idea how difficult it is to cope with the pain
Thank you for this vid. Im 29 and was diagnosed a few years ago, its been a long road so far but at least I have a pathway for the future.
I’m 22 and was diagnosed with moderate to severe AS about a year ago. People don’t understand how emotionally draining the pain is. Biologics have been amazing. I can’t breathe as deeply and I’m not as flexible anymore, which for me it feels like it’s ruining my life. However, the pain motivates me to get off my ass and go for a walk or run instead of wallowing in the pain. Hopefully in 10 years pharmaceutical companies will have something figured out for us.
Hi, guys! This weeks video is a bit more personal. It is about my life with ankylosing spondylitis and how it affects me. I felt like a huge weight came off my chest after making this video. It is important to be open and frank about the challenges we face. I hope to inspire others that suffer from any conditions to keep pushing and to not let it dictate them as a person. Climbing has become such a big part of my identity not only because of how fun it is, but also as a constant reminder that I have managed to persevere beyond what I thought capable of.
I was just diagnosed, would love to know if you treat it with natural methods.. thank you for being an inspiration. !!!
Just exercise, stretching and Humira. Humira changed my life. It basically gave me the opportunity to take control of my life.
I have Ankylosing Spondylitis as-well and it’s so refreshing to hear a younger person like you talking about the disease from your own perspective! Stay strong my dude 🤙🏻
Becca Bean thanks Becca! Wishing you the best.
Hey mate, great info on this video! I just thought I'd comment as I'm heading to the rheumatologist next month for my first specialist appointment. I'm 75% sure I have AS (Have experienced a lot of the symptoms for a few years). Do you have any advice for someone heading to a specialist for the first time? I guess I'm mainly concerned they might brush off my symptoms as something else.
Hello Max, thank you for sharing your experience. I just got diagnosed with AS few days ago. My doctor's first choice of treatment is biologics and NSAIDs . May I ask aside from being physically active what are you taking right now? As of the moment my main complain is right buttock pain due to sacroilitis. I think its quite better than having it directly in my spine, im looking forward to be better but I need to kick this inflammation of my joints first before being fully active again. Thank you and bless you!
Sorry for the slow reply! I’ve been on anti tnfs for the last 9 years and they really have worked wonders for me (in addition to exercise!) - use it or lose it
I am glad you mentioned that you have really bad days or weeks, because often I think oh you’re much younger than me that is why you can do these things. To some extent this may be true. We are all different. We all have different levels of response to pain, not out of weakness, but because I may have a different number of pain receptors than the next guy, but I am 56. I had problems as a kid but when I was a kid, it was written off as growing pains, and girls didn’t get the disease. I went throughout life and it wasn’t until I did a 60 mile marathon that my disease exacerbated. I am sure I overstressed my body and things began to fall apart. Then later I went through a very traumatic neck surgery, a respiratory arrest and subsequent PTSD which is triggered by high level uncontrolled pain. Exercise is often difficult for me because of the PTSD. It is strange but maybe you will get it. It is like being a kid and putting your hand on a hot iron or burner. It hurts like hell, and you think, well I am never going to do that again. Lesson learned right? Well, it is the same with the spondy pain. Only it isn’t! My brain says don’t do this again, it only causes pain. But not doing it causes more pain. My brain is flipping out! I think it is a fine balance and one dr explained it to me this way, because I tend to over exercise when I get going. He said start with 5 minutes of walking, and in 3 days add on another 5 minutes and then in 3 days 5 more, etc. Do this until you hit your pain threshold, then back off by 5 minutes and you know where your limits are. I still fight that voice in my head that says don’t do this it is going to put you down for 3 days, but it has to be done. Like you said, we can’t wallow in it now can we? Thanks for this video. I Love to see inspiring people who have AS, even if you are 30+ years younger than me. Just like I like watching Hope in Motion on instagram.
Thanks for sharing your story! In all honesty, pain is subjective. We can either decide to let it control us or learn to take the brunt of it and keep moving forward. I decided the latter. I wish you all the best for the future.
Hey! Thank you for sharing this video, and this issue within context of physical activity, sports and in particular climbing. I was really suprised when stumbled across this today when looking through different channels sharing regular climbing/bouldering videos. My own experiences with AS, now at an age of 31, has been and are very similar to yours when it comes how it complicates the relationship with physical activity and goals. I have been rather furtunate and have with the years learned to manage and handle it, meaning that I am becoming better at walking that fine line of "just enough" physical activity and pushing the limits.
I have always done sports, 10 years of martial arts, running, yoga, weight lifting (OL), crossfit and 2 years in the Swedish Marine Corps. All this physical activity always kept me on the edge of what my body could do and because if this I have been forced to learn how to rehabilitate my body. Every sport I have done I have been forced to identify what kind of stress it puts my "AS-body" through and which tools and methods I can use reduce this stress. Yoga and sport specific rehabilitation drills is the best combo for me and I have done alot of thinking, testing and developing in relation to climbing. Especially because the risk of " climbers back" I find would be re-inforced by an illness like AS. Even more so for me because most of my issues are neck related/upper back related.
Now I just realized I got abit out of control with the amount of text. I would like to finish by asking one question and making an offer. Q) How have/are you handling your mobility and rehab needs and do you think that your AS forces you do do specific things to be able to keep climbing? Offer) If you want to really discuss details regarding AS, climbing and mobility and rehab please dont hesitate to send me a message.
Thanks again for sharing this and lots of support from Sweden!
Ps. Just realised this is the first time ever I repsonded to something on UA-cam.
Thank you for posting this video. I'm 22 and have Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. I used to climb 3-4x/week before I became very ill last year. I really want to get back into climbing and seeing someone with a chronic illness do just that really gives me hope. Wishing you a minimally symptomatic day!
Thank you for sharing I am suffering from the same as well. And I think a active lifestyle is best for this. It does feel awful to not know much about this for being someone who is young with this diagnosis.I am trying to become more active as well due to knowing what the end results could be.
I don't have AS, but struggle with chronic lower back pain since 18 years old (now 23). Diagnosis is massive degenerative disc disease and a lot of hernitated discs in lumbar spine. Everyday is painful struggle, but I try to be active person - climbing mostly. Seeing that there are people who are coping with pain and maintaining their identities really cheers me up. I hope you will have energy to live productive and fulfilled life despite your condition. Keep going!
I had an image done in spring and have L5S1 end plate spurring, facet arthritis, bulging disc, and feel pain in more parts of my body now. Physical therapy has helped foot pain and relieves the hip pain when I keep consistent with it. But this is an infuriating battle that I realize will persist for the rest of my life.
Seeing a rheumatologist next week and am utterly terrified. Maybe I have AS, or RA. I find myself wanting to cry most of the time, as I'm only 31.
Just trying to deal with it and realize I'm not the only one. Thanks for sharing. 💜
Wishing you all the best! Hopefully the rheumatologist eases your concerns slightly, but it will be ok. I know it doesn’t seem like it right now, but it will be.
Thank you. I don’t have A.S. But I was diagnosed with RA at 4. Shit sucks but it was really nice to hear someone else talk about it, and for you to have done the things you have it’s inspiring. Thank you.
Thanks for posting this. I have the same kind of arthritis and have managed to work my way from wanting to cry just walking round the supermarket, to being able to finish a SwimRun.. albeit fairly slowly. I know i overall feel better when I exercise but it’s hard to motivate yourself with the constant exhaustion. I definitely find having a goal to work towards is useful.. because clearly for me, avoiding my spine fusing together is not enough of a motivator by itself 😩
Thank you for making this video! I would like to know how you've been able to get past the pain/Initial diagnosis and self pity? At 33 I've finally been diagnosed with Ankylosing Spondylitis. Which has been miss diagnosed as fibromyalgia until just recently. Now knowing what I know, I've realized that my father is in the late stages of the disease and no one knew...he was also diagnosed with fibro. It's sad to think that he could have had a less painful life and may have been able to work longer before being put on disability. I don't know how he does it, how he deals with it...I know for me, I can barely get out of bed some days. I'm fairly certain that I only experience a fraction of the pain that he does.
I've read that exercise is good for helping prolong the progression, but how do I get to a point where I can exercise without being unable to move afterwards or feeling sharp spikes of pain. I can't even walk far. To walk to the corner store which is only 3 blocks away roughly, gets incredibly painful on the way home. I'm thinking about yoga to start and go from there....but I want to hear your perspective.
Thanks for uploading this video. I also have AS at age 27. I started to feel pain in my back when I was around 20, and got the diagnosis about 6 months ago. But I will not let this disease stop me from doing what I want.
Thanks for the video! The initial phase post-diagnosis is the toughest for all I guess. I'm 26 and was officially diagnosed with SpA 3 months back. I wish there was a way out of the depression that AS brings along.
"Looking for pain, as opposed to letting it just be there."
Wise words. I know exactly what you mean, AS hit me when I was young too.
I’m sorry to hear that man. I’m thinking the best way is to just become good friends with it.
Totally feel you. I’m 25, and as a girl diagnosis I find takes a while with the narrative of it being a male condition. I think what you said is completely true, opportunities and possibilities don’t disappear they just perhaps become a little tougher but grit (and in my particular situation stubbornness) mean than you still get to where you want to be.
I wondered though, how do you experience the fatigue? For me the base level of pain is manageable some days with occasional tears but manageable none the less it’s the fatigue I find more difficult to incorporate into a busy lifestyle.
Stevie Kelly how do I manage fatigue? Caffeine. A lot of it. Sometimes it’s not really an issue though as the sport makes me tired anyway, but when I can’t sleep properly and I’m fatigued and I’m training it definitely gets difficult. I kind of zone out away from people when that happens.
Hey i have AS and although my pain is worse than my fatigue, I have extreme fatigue. I have sort of an office job and i feel like I have 1/3rd the energy of everyone else. Here are my suggestions on avoiding fatigue:
-proper and consistent sleep schedule. Try to go to bed and wake up at the same time every day.
-controlling inflammation will help all symptoms including fatigue. For me, starting Enbrel was a life changer.
-Don't overdue alcohol, caffeine or junk food. Although a cup of coffee helps me alot around 2pm
-get your work done when you are feeling the most productive (if your work allows). For me its morning.
-Don't judge yourself bynothers performance
-dont procrastinate
-light excercise often
-dont multitask. Get one task done at a time.
-set small goals. It helps me to write them down
My list turned into hoe to balance a full time job with severe fatigue from AS. I hope it helps. These are some of the things that help me. Its a fact that people with AS are way more tired and feel less motivated than people without AS. Ive read that our bodies feel echausted because we are constantly fighting the inflammation and trying to heal ourselves.
I feel you pain as I have AS as well. I'm 28 and feel 90.
Hey Max! Just found your vid & channel and wanted to say thanks so much for sharing this! As you said, there's not enough young people out there sharing stories of their acheivements whilst living with AS and I think it is so crucial to concentrate on positives.
I just did a Triathlon on the weekend, which has been a goal of mine for 4 years 🤩 Keep up the good work, cheers
Congrats on the triathlon!!!
Hi max. I want to know how your medication go. I am 30, took NSAIDs for few years on sos basis. Are you on NSAIDS or biologics. Thanks.
Hey there! I have just been diagnosed with AS and I’m 22 years old, but have been suffering with chronic pain since I was 19. My biggest issue was no doctors actually believed me when I told them how severe the pain was so I spent a good 2 and a half years being tossed from one doctor to another while suffering immensely with absolutely no treatment. I have no support from my family, and none of my friends suffer from this condition, so I often find myself in a very isolated and dark place. Without medication (antidepressants and anti-inflammatories) I can barely function, and it feels as though I am trapped in a constant world of pain, even with treatment. My AS affects my entire body, from the small joints in my fingers, to the big joints like my shoulder blades, there is not a single place on my body where I am not in chronic pain. I hope to one day find a community consisting of people who will understand, and I hope I am able to find my motivation to live to the fullest again.
I hope things are going better a few months on.
Hey. How are things going for you now? I share the same exact story as you. Went to multiple doctors for years with no diagnosis as so very conveniently, all my bloodwork are negative. I was always told i don't suffer from anything, despite near every single joint in my body hurting and creaking. Only a few months back was i diagnosed with A.S after a rib swole up. Currently on a dmard but it's not working. This truly is a horrible disease and i hope even my worst enemy wouldn't have to go through this.
I would be really interested to have a discussion with fellow AS warriors on how they balance working full time with the rest of their life. Specifically batteling fatigue and staying motivated while experiencing a disease that makes us tired and in pain all the time.
Tips for managing pain of course too! I feel like its a given though. We are used to dealing with pain. Anything that's helped anyone really manage pain well?
For me it's copious amounts of caffeine and recognising that I'm going to be exhausted regardless of whether I chase these goals or not...would rather be tired because I've tried than give in to AS
Max you amazing I hope you're doing well. I'm 25 M btw. I would love to talk to you if you're free ofc. Have a great day
Loved watching this! I’m 24 years old and was diagnosed at 14 (in 2008)and was home schooled due to my AS.
My AS still affects my life every day but I’ve been better since treatment. I just wish more people knew about this disease.
Keep spreading awareness!
I wish you all the best! Definitely going to try and keep spreading awareness.
I got diagnosed with this at the age of 10-11. I'm now 20. It goes up and down, but having grown up with it helps dealing with constant pain. I has been my nuisance since the first symptoms at the age of 8-9. My fingers are so fucked I had to give up acustic guitar, witch was my childhood dream. It was a real hard growing experience, when at that vulnerable age someone tells you that this potential has been ripped away from you because of something as incidental as genetics. Glad I had visual arts to turn to as a back up passion.
It was fascinating hearing this point of view. thank you.
Hi. Thank you for your video. Was wondering what your symptoms were before you got diagnosed and how you ended up getting a diagnosis?
Knee swelling, extreme sciatica (totally bed bound), and lower back pain were the main ones. I ended up first going to hospital in August of 2012 and ended up with an official diagnosis in April 2013. Basically, AS is a clinical diagnosis so I had a lot of blood tests, x-rays, MRIs etc
Such a real video and I think it’s more accurate than a lot of other videos out there. Personally I’ve had my pain since 8 years old, and only got diagnosed earlier this year at 14 years old. It was a relief for me as my doctors didn’t believe me and was at A&E twice a month for these years. Thank you for making this very genuine, keep it up!x
I’m glad you thought so. That was definitely a goal of mine. No point covering anything up about what the condition is and how it affects you.
So yesterday i got diagnosed with a.s and im 23 . Im so happy you have talked about this and raising awareness its been a struggle dealing with the pain and most of all dealing with my thoughts...
I’m sorry to hear you were diagnosed. It can be a weird time. If you have any questions, really any at all, then contact me. Wishing you the best.
Such an inspiring video man, being open and honest about things like this is so important. It's unbelievable how much more people are capable of than they think, if they just put their mind to It. And I'm sure theres definitely still a lot more out there for you yet.
Exactly! It is very easy to get stuck in the can's and cant's. Thank you for your support, Connor!
Great story, thanks for sharing. How many years has it been since you were diagnized?
Around 5 years now!
Just to add to your feedback:
I hoped on to your video trying to figure out this first diagnosis I had. To see if it sounded right. I didn’t have the DNA marker or any other rheumatic response on tests. But my doctor was adamant by the way I described my issues. And from all videos I’ve seen, yours helps to bring it together. The way you describe your symptoms is much like my own. I was in the US military & super active after a spine injury at 20. I used to be active, with a lot of hiking & backpacking. But those aren’t options I fully have anymore.
It’s interesting how things progress. I hope you’re well & keeping active when you can. That seems to be the only fix. If it doesn’t take a few hours to wake up & get moving 😅
Probably more active now than ever before!
Hope you are doing as well as can be expected
Just had my blood work results today, just informed i do have an autoimmune disease, just don’t know which type yet, visiting a rheumatologist soon. Cried a fair bit today, wasn’t expecting news like this at all. 30 years old
I’m sorry to hear that! Crying isn’t a bad thing - but I hope you get the help and support you need! It is always a shock to learn
Hey mate. I'm 27, was diagnosed at 19. My Dad has AS so I knew what to look out for but his is relatively mild, he takes pain meds maybe a couple of times a month. I'm on daily pain meds, about to start biologics and struggling with pain & restricted movement. I've found it hard to find other younger folks to connect to. If you ever fancy a chat lemme know
Hey bud, if you ever need to talk drop me a line on IG!
I have AS. No one knows what it is. Especially doctors. After all the years I've dealt with this I can tell you that most people are weak. They all think they understand and have recommendations for ways to ease the pain. Just tell them thanks and cus them out when they leave. Take care of yourself.
I think it can be hard for people to understand how it works, and generally they mean well when they offer advice. Obviously, for a lot of us, we have heard it all before so it’s not really helpful. However, I think it’s important to remember they normally mean well.
I was just diagnosed this year after several years of being misdiagnosed. This summer I had x-rays done again like I had several times on my shoulder and hip, which is where I feel it the most, as well as my back, and even had a MRI on my hip, all to no avail. I was told I had the hip and shoulder of a 60 year old, and at 19 years old I already needed reacements that I was not eligible for, as they last 10-15 years if you're lucky. Two days from now I am taking my first shot of humira, very hopeful for good results, as I have also felt like i was falling into a dark place for awhile. Thank you for sharing your story!
Humira changed my life. No way of putting it otherwise. I wish you all the best with the journey.
Great video man. Stay strong! 💪
Great video Max so many achievements and so much more to come. I think it’s fair to say we are living in the best time to have AS and you are taking full advantage of that.
Thanks Floyd! I could not agree more. The treatments available, and the amount of knowledge we are gaining about the condition, is fantastic :D
I'm new to gym climbing, still young in age, and I also am dealing with arthritis. Mine is rheumatoid arthritis and sometimes I can't even crimp because it's too painful. But. I am making due and loving the sport regardless. Thank you for your videos, just saw you from bouldering bobat and subscribed. Thanks for all your work on this channel!
+Outside & Stuff I’m sorry to hear that man. But, good on you for getting on the wall and trying regardless. Learn to listen to your body. I wish you the best of luck for the future. Train your antagonist muscles and opposing finger strength as well; probably even more important to do that with the RA.
Thanks for subscribing!
Thanks for the tips Max! Looking forward to more videos. :)
Keep it up Max! 💪
Thanks broski!
I have to keep moving, if I don't do my exercises I fewl bad, but some days I feel so good that I think I don't have anything. On the other hand, like a shadow some days I feel like this flu sensation (body pain all over my body) get me like a shadow.
I’m 21 and been diagnosed for 3 years and seriously feel myself deteriorating mentally. Any best way for me to get help because I am suffering x
Please reach out to a lecturer, parent, friend, GP, rheumatologist or even someone from MIND! Just talk to someone to get the ball rolling :)
@@VerticalLiving thankyou. I will do. I have found communicating with others about it helps. I am on some sort of medication for it that’s helps massively. It’s just my future that I fear x
Good video! What test have you done for you diagnosis? Do you get fevers? How about face redness?
I had an MRI done about 6 years on to check any progression in fusion - then normal bloods etc
Face redness yes, fevers none!
Thanks for the response , how about any eye related problems?
Yep , me too i have it
Hey man, thank you so much. Going through a bad flare up while quitting cannabis as a coping mechanism. This really helped my mental.
Sorry about the flare up, bud. Wishing you all the best.
@@VerticalLiving As always, we'll get thru it. Best to you too.
@@daringdurr always forwards!
I cant believe actually ppl think tht were krzy u cant really see the syptoms
Thanks for this video, man! 😊
Thanks for watching!
Hi! Just found your video through reddit and I'm glad I did it. I'm 24 and I was diagnosed with AS at 23, it has been one hell of a year to me but I'm learning to deal with it. I would like to know what medication you're taking at the moment...
I wish you well and remember that you're not alone. Thanks for this! Hugs from Brazil ☺
Feel free to ask me that during my upcoming Q&A! Can talk a little bit more about medication (Although, I am no a doctor). I wish you the best! Max.
Vertical Living I will do. Thank you! ☺
What medications do you take ?
ive hhad it diagnosed 4 4yrs
im also allergic to certain pills
Jeffrey plz.
Have you tried a whole food plant based diet?
+Jeremie Fremaux Nope! I don’t feel like my diet is a restraint. I’m doing very well with my sport and medication :D
Suit yourself. I've seen it do wonders for people like you and there's plenty of studies on this.
If you have any studies I'd love to read them! I've read a few on keto etc for AS but not on what you mention.
I couldn't find it for your version of arthritis but wouldn't be surprised if it was beneficial to most. There's a link in the article that describes the study well. Wouldn't hurt to try based on those results. nutritionfacts.org/2017/05/09/the-best-diet-for-rheumatoid-arthritis/
I'll check it out!