yeah that's all true, but i don't no which of us A.S victims have it worse than others but me i guess i am really screwed mine has already went to Bamboo Spine! literally, so now that's what my spine looks like all good and fused together and now live a pretty F-ed up life, even though i want to do the same as aziz829tube, but i am not, but there's always those days, i would do a video to show people what A.S. (bamboo) looks like but i don't need to bring anyone down any further but Thanks again
Thank you for posting this video. My father has AS and I'm trying to find out if his ear ringing is associated to this condition. Have you ever experienced that?
@schneidable yes i think it does come with A.S, i no i have had the ringing as far back as i can remember, i used to think it was gonna drive me crazy but i am still here lol and i no its not funny Believe me i no, my heart goes out to him but he's really gonna have to be STRONG! life's a B#$%h! with A.S and there's no Cure. i hoped this helps
Thank you. That's all I can say. I am now 98% certain that I have AS, and watching your video definitely makes me believe it even more. You actually say several things, word for word, that I have said to describe what I have been going through. It's uncanny actually. Again, thank you.
no emergency hospital knows about this pain, last time i was about 7 hours in pain, liyng in a corridor, on the medical bed, waiting for some doctor to see me, and in the minute he saw me, he said it was nothing and gave me a voltaren injection, which i had to wait for one hour! So i gave up to call ambulance! I have myself control on this pain. That night i had about 3 brufens 600, at once! and for about one hour, I could finally sleep!! This disease must be better known in the medical comunity
I still haven`t an oficial diagnosis, because the exams doesn`t tel specific AS, but artroses and potencial inflamation disease!! I am stil waiting for a reumathologist in public service, in Portugal, but only in one year! Till then i have some brufen 600, and Turox,60mg. I have a dinamic life that keeps me in movement, and i can live with some pain, for now. It is already an habit to have pain! last year i had 2 crises, but i gave up to go on the emergency ambulance, because nobody knows about
I`m 35, and i have this pain since my 26. When I finnally decided to invistigate my sintoms on the internet, I realized that they were connected with most of the AS sintoms. I decided to go to have some information with a doctor about that, because before, my pain was treated as (i don`t know the tecnichal terms for it in english) lombalgy, ciatalgy, stress, a bad position during the sleep, etc. When i found AS on the internet, i realized it was more than that. Now i still haven`t an oficial
Im 21 and had this diagnosed 3 months ago. I have found out swimming as exercise has done really good for me. Theres hardly no pressure to joints as the water holds your weight and you can easily vary the resistance of the workout. I feel myself more strong in water. Now, that I haven't done my pool routine, which was basically 1km every other day, my neck starts to feel stiff and I feel pressure in lower back. I can't seem stand straight. I always have taken a sauna after swimming (80+C=176F).
Let me start my responce by saying a very heart felt thank you to ASsufferer for posting this video. I will be posting my own testimonial video within the next week and I encourage everyone to do the same. ASsufferer is right there needs to be better awareness of our condition/disease, by both the public and medical communities. I am a long time suffering patient with a recent diagnosis. I have other medical issues so starting Humira right now is not an option and will be discussed in my video.
@ASsufferer. I am deeply impressed by your story. You have very sad eyes and I can tell that it is a struggle for you. I wish I could do something to help you. Some believe that medical fasting might decrease the pain, but I am in no position to recommend it. I have been diagnosed with Sacroiliitis. The pain in my lower back is sometimes so severe that I can't turn in my bed. My HLA-B27 is pos., ESR = 30 and my lower back pain never went away during the last 9 years. Does it seem to be AS? :-S
Thanks for posting. I can really relate to what you are saying. All of it. I've been on disability now for 2.5 years. It has not been easy and the insurance is threatening to cut me off. I've seen too many doctors and the last one I saw told me my problems were all in my head and he sent me to a mental health clinic. They told me my problems were physical, not mental. Saw the Rhumatologist today...he suspects AS, but have to get an MRI. I want my life back.
@ASsufferer Thanks for posting this video. I have had similar pain to what you describe for around a decade now, and have just recently come to realize it is likely Ankylosing Spondylitis. It is for some reason comforting to know there are others out there who are dealing with the same symptoms I am (though I'm obviously sorry about this as well). Take care.
My doc feels I may have this as I've got a problem with my SI joint. Only my right side, I got my blood test on Monday. I'm kind of freaked out, my mum suffers from rheumatoid and osteoarthritis. I do not want to end up in her condition at 47 years of age. It's a scary thought.
Does it hurt when you sit down for long? I've no problem with that! Seems to help actually.
Thanks for making this video. I am 55 and just got diagnosed, after being misdiagnosed all my lfe. It was actually the surgeon replacing parts of my cervical spine who finally told me. I am extremely ill now, and need a replacement of my lower spine to keep walking. I am sending your video to my friends and family who are having a real hard time accepting what is wrong with me. AS sufferers need understanding and compassion more than anything.
What a great video dude. I have so much sympathy for what you have been living with for more than half of you life. I have AS as well. I am 60 years old now. Mine first started, I learned in 1980, with a year long battle with mononuclosis in 5th grade, then rhuematic five at 15, the the back began, very much like your story. It attacked my hips in college and just ravaged all over. When I found out about the AS diagnosis, my doctor had me start with weight training. What a difference.
I had a physio push on my neck. Ever since I have not worked for a year. I have sacroillitis and fit the description of as. I'm not diagnosed yet. I can't sit or stand for long. This is incredibly debilitating and wish I had my health again. I'm 29 male who was fit and healthy now I eat painkillers 24/7 . I pray for a cure and good luck to all with this condition
@ASsufferer well the new meds did not take. I ended up with flu like symptoms for three days at a time. Making things worse. For now back on prednisone and cymbalta. Still out on medical leave. But doing much better. Still can't stand for more than 30 mins.
@venom507 yeah I know how you feel. I am glad I did not know what i had for a long time. With this problem, it is easy to feel that life sucks, and at times it does. But we keep on fighting and trying to squeeze whatever life we have out of our time here. My pain started at about your age so I know. I hope you found a way to make things a little easier. Take care and write anytime. Sorry it took me so long to reply!
I have been diagnosed AS since 18 years old. I have been living in pain for more than 20 years. Lately, the disease affected me greatly. My medicine no longer helps. Then I tried my diet. Cut sugar, coffee, red meat and carbo from my diet. More fruits and vege. Adopt a more alkaline diet. U can google what food and drinks are alkaline. I started to feel better. I then do stretching and tai chi everyday. My condition improved. I hope to share this to all AS patients and hope that it also works f
@seizepoon88 Thanks for checking out my videos. I used to do a lot of martial arts, and I took up Tai chi also but found it was too hard on my knees for some reason. Its off subject a bit, but did you know that Tai chi is a very effective self defense if you do the moves fast and with power? I love it. I bet it does help with the AS. I may try the diet, but I have too much going on right now to do it. Well thanks again, write anytime!
@nanabella1961 Yes its true that your stuck with it. Now what? Lay down and except defeat? Maybe for some, but if you have a fighting spirit and cant see yourself taken out by AS, then put up your dukes and start swinging,
so i decided to learn this therapy and im doing my project work on AS so if people who are interested in getting rid of your pain they can volunteer and drop in my clinic or contact me for the sae ..
hi everybody , i have been diagnosed with AS last yera i usually have this pain in my nek and soemtime in lower back ,i usually ignored all this .but last year i got sever inflammation in my both knees and left hips because of which i was nt ble to stand even .anyways i did lots of allopathy and homepathy but the main thing that helps me is biodynamic craniosacral therapy .
You really Impressed me with your video , I'm a 17 year old dude , That has been suspected with AS , The morons mixed my Test results And instead of HLA-B27 - Negative as it should of been , They gave me one with Positive , Thank god that That doctor looked twice , and saw the error ,Keep your head up guys . !
@Ketam1na Yeah that test is a pain. I have heard that 97% of the people that have AS, have the gene, but there is a 3% crowd of folks without the gene but they have all the same afflictions as those with it. If you have any problems like that at 17, you should take a look at the cause. I feel for you man not matter what the cause it. It sucks to feel like your 50 when your 17. When I was 25, I would get up and say to myself " If I feel lke this at 25, how will I feel at 50?? Take care man!
@ASsufferer My knee was hurting and they tought that is AS at debut , but After 2 MRI's , One at the knee and one at the Sacro-Illace Joints , The one at the knee showed I have a Menisc Injury , and the Sacro-Iliac Joints showed nothing , I did HLA-B27 Again and it turned Negative , So Thank god that I dont have this disease , Keep your head up ! .
@nessymc286 I have followed up on the ibs diets... The only cautionary I would give is do it slowly! The sudden change away from starch can really alter your mood! Also, very hard to stick to if you are on a limited income. Some of the replacements are specialty and quite pricey....
@aziz829tube stick neck is painful, frustrating, depressing and just all around nasty! But, like all of us we all have to stay positive. There is a surgery to make you move again. I know many friends that have had to be fuzed because of accidents...one of my friends had the halo decorated by her friends we each hung something on it to remind her everyday she us not alone. So remember we are all here and non of us is alone! If you need an ear email me @bby4ta@gmail.com
A lot has happened in the last month. I am now on methotrexate (makes me feel like I have the flu for two to three days) and seems to be helping. Not much I would have to say. Now that the prednisone has fully left my system my hands are back to no strength, always a purplish red and in pain. My back and hips are also back to "just don't bend or move me". I am only in week three of the methotrexate still have two months to go to see if it is working. Until then I am out on disability.
@bby4ta Wow thats a long time to wait and see. I know how it is though. Medicine takes time to do its thing sometimes. Have you ever tried magnets to alleviate pain? I use a back brace with magnets built into it and its a life saver. Some people dont feel relief but I did. It works better on bone related pains than muscle main, but it does something! Best wishes to you and I hope the new meds work for you. Take care.
I had hip and low back pain for over 2 years now. Currently i am 19 years old and after 5 Orthopedic doctors, 2 Physicians, and 1 rheumatologist i hope to have it figured out. She deduced from blood tests that i have some how contracted ankylosing spondylitis. Currently i have started Methotrexate after trying sulfasalizine . if you havent found any answers to your pain i would suggest seeing a rheumatologist. If you have any other tips let me know. its not an easy disease.
@ajonz9213 Well, the truth is that Ankylosing Spondylitous is a condition really, not a disease. The real root of it all is a little germ that is usually not a problem. We all get it and make a white blood cell for it. The trouble is that in some people, their cartilage has the same gene as the disease. The white blood cells kill the germ, then go to work on all the cartilage. That causes inflammation (pain) and then eventually joint break down. You are right it is very hard to live with.
@ASsufferer I feel you. I had 2 RA dr's tell me my pain was in my head. I saw a RA dr from UCLA and he said I have AS. So i saw another RA dr in my town and asked for an MRI and he went with it, but I had to ask for the contrast. So after the MRI I found out I had 2 bulging discs, inflammation on both sides of my SI joint, and inflammation in my kips. Amazing huh. It hurts like hell man.
@ASsufferer its a disease. at first you say its not a disease its a condition and then you say it is a disease. Its a disease buddy. last thing you said was months ago, so how about an update.
@aziz829tube My heart goes out to you. I know how you feel. Just try to find some way to get relief before you pull the plug. You own that to yourself.
Have any of you tried the Raw/Living Foods lifestyle? It decreases and may even cure many diseases just by eating the right type of foods. Just YT Raw Foods and You'll see a ton. I'm looking into it for my dad (who is 58) who has had AS for years! I'm looking into The Living Foods Institute in Atlanta, GA now. I hope this helps someone out there.
Per Primary Dr advise going back to normal eating until sulfazine is out of my system. I reacted quite negatively. Did not end up with rash but ended up bruising myself just because I could not stop itching. Also, skin was tinted yellow and blisters on my lip. This doc has also agreed that some time off from work to cope and readjust to the news is best. Any how hope ya'llz are holding on and moving as much as possible. Have a good night!
hi,im somnath 19 yrs old from india and suffering from the same since i was 11. started from hip,knees ,ankle it has now spread to my spine and ocassionally involves shoulders and jaws. i was bed ridden for 9 months during the early stages unable to cough,laugh,sneeze and believe me i have lost faith in god since then. iam on immuno supressive injections [enbrel] but that seems to have losing its effect now. i m worried hows my futures going to be and losing hope with every passing day.
Hello im jon im 17 I found out I had as this year, I was being treated for RA since I was 12. I can fell it in.my lower back and kness. Personal I fell like one the luckyer people on earth to have found out so early in life and it not to be some.thing life threting like cancer or aids. Im on humira and tnf blockers, I started them about 3 mouths ago and I can defftly fell the diffrence when im out on the wrestling matt or just laying around, I loved the story keep it going
Hi - am not sure if you have read the book by Carol Sinclair? It's called "The IBS Low Starch Diet". She was diagnosed with IBS when in actual fact she had AS. It is very common for woman to be misdiagnosed with either IBS or fibromyalgia as AS develops slower than what it does for men. I am still waiting on a final diagnosis but am pretty sure I have AS also. Totally agree about the excercise and hot water treatments!
@misteeq64 if you check out kickas.com the london as diet is just one idea on how food effects your body. I have been limiting starch and dairy but the pain is still bad. Really thinking eleminating all for a month to see if it works. Still on 10 mg predisone a new drug sulfazine and cymbalta. As well as 800 mg advil....
I feel your pain my friend. After 4 years of seeing doctors and going through tests/therapy, i was finally diagnosed with Ankylosing Spondylitis. To my huge surprise, i have been feeling the same symptoms that you have and i also find taking a warm shower in the morning helps me flush some of the pain away. Stretching and exercise is the best therapy i've found so far. This condition really puts any human being through a test of life.
Very glad to find this. Suffering for past 9 yrs and surrounded by people who think my claim of constant pain is attention seeking! Additionally I have lots of other health issues which could be related. Honestly some days I pray this misery will end. But a doctor once said since I have blood tests every 3 months, I'd probably live long. Didn't know whether I should have bashed his teeth in!
my body the pain was unbelevable , then my feet turned 3 times bigger and i could not put it on the ground and my knee was inpain too!!! then i was so worried i went to d doc , and i was in the hospital during 2 weeks and finally they told me i have AS , it was last november more or less , i started to take pils on janaury as cortisone , naprosyn ... now i am taking one called metrotexat and i feel much better the pain have decrased and i hope to feel ok soon !!! we have to be brave!! hugs
Hi man!! nice to meet u!! i am josep i am from barcelona and i have AS i am 27 ! since 1999 i felt pain in my lower back but i thought i was fbecause of basketall or my height i am 6 feet 5 inches , then when i was 20 i had and injurie in my leg i thought it was for basketball too ... when i was 23 during a summer my feet was really in pain for 3 months and i did not know why !!! but i recovered (still having a lit pain in my back ) from that pain , but when i was 26 one morning i could not move
Thank you for responding... Doing a little better down to 15 mg of the pred. right now. Lately though my feet have turned into hot needles with every step. Attempting a starch and dairy free diet (very difficult on a budget but foods I love). It seems to help and can really feel the difference on my cheat days... Just keep moving! Is my new moto everyday....once again thank you for this forum.
Hello....I found the book. It's call "Your Body's Many Cries for Water" by Dr. Batmanghelidj. I haven't read the book, but I am planning to to it. All I know is that it consists of an intense drinking of water with seasalt. My brother found pain relief for the first time in 10 years after a few months of following the book recomendations. Please keep me posted on your recovery. Amazon has the book.
(cont. from Robin) I even contacted a man in Minnesota that claimed to have been cured by following the treatment in that book. I purchased the book and had it mailed to my brother in Tallahassee. Although he hasn't been cure...his condition has improved a great deal. He has no cervical movement....but the pain is all gone. I will try to find the Doctor's name and the Book's title as well for you all to consider. I wish you all to get better as I wish for my brother to regain his health.
@robintubeable Thank you for your reply and the book info. I would be very interested in learning more. Please let me know when you have the book title and Author. If it can help I will try it! Thanks!
Hi. Thanks for the video. My name is Robin and I am from Puerto Rico. My brother (born 1966) has AS. His condition is very severe. I searched the web intensively a few years ago and I found a doctor from the middle east that claimed to have cured people with AS. He died sometime ago, but wrote a best seller book that has his treatment explained. It has to do with water and salt.
I was diagnosed last week with AS.. im 27 years old & a mother of a 5 year old daughter & a 4 year old son... Im seeing a physiotherapist & waiting to see a rhumalogist & im also on a lot of pain medication that are not helping.. im stiff all over; my legs, arms, back & neck ......why did i get this??
@mslator1 Well, you got this because your family had the gene and you got the bacteria that starts the process. Its an Immune disease where your body makes white blood cells to fight the bacteria, but it has the same genetic marker as your cartilage. So your body starts to try to remove your cartilage! That causes swelling and eventually it breaks down the joint and it locks up with calcium. It happens in any joint in the body, mostly the back, but it can hit the ribs or any place.
@ASsufferer Thanks for vid. I am probably in the same "mode" as you-had since teens, only have SI Joints fused, pain, years of everything-after the SI Joints fused, no pain for last 7 years. Dec10 woke up with a stiff neck. Mult.tests, X-Ray, MRI, etc. Everything relatively normal. Tried all homeopathic rems-nothing worked.Neck still so friggin stiff 7 moths later. Why? I go to spinal guy this week-he tells me cervical starting to fuse, 3 vert already-Nothing fused a few months ago-then bam!
@mslator1 My advise is to keep moving as much as possible, and dont ask why. You will drive yourself crazy with why. Just live and try to keep what ever you have now as far as mobility. KEEP MOVING! Take care and please write back if you wish. P.S. I have 2 small kids like you and i decided that I am going to just do what i can and not let this hold me back from being involved in their fun. I have to sit out alot, but Im in the game!
@mslator1 He is right. you cannot ask why. it will get you down and hurt relationships. Get on a solid workout regiment: swim and get on the elliptical, STRETCH a lot, lay on a yoga ball (suggestion by my Chiropractor) relax there, and stay positive. take great joy in your relationship and children. it has helped me a lot to have such a supportive girlfriend, its amazing. for my self i spiraled in to a deep depression and failed school classes. its not impossible. you can do it! :) we all can!
I was diagnosed last week with AS.. im 27 years old & a mother of a 5 year old daughter & a 4 year old son... Im seeing a physiotherapist & waiting to see a rhumalogist & im also on a lot of pain medication that are not helping.. im stiff all over; my legs, arms, back & neck ......why did i get this??
I was diagnosed last week with AS... im only 27 with 2 kids, they are 5 & 4. I'm on 2 crutches, with a lot of pain killers & a full time job! The stiffness is all over my body, especiallly in my neck, arms. legs & back. Is there any cure???
@mslator1 Unfortunately, there is no cure for this. Only ways to treat the symptoms. There is hope with Stem Cell research, but it wont help us that already have damage from it, It will just stop it where it is, so the earlier you get the DX the better if they ever get those Stem cells working. I have found the only cure is to not give up, dont think of yourself as "sick" and to try to live the life you want to the best of your ability. Use your brain to find ways to do things differently.
Thanks for the video. I always feel like people think I am exaggerating what pain I am going through. Like rolling over in bed or putting on shoes and socks. I hate that you are going through it, but it is good to know I am not alone out here. Sure feels that way sometimes. I was a Sergeant in the Army and have got to the point where I have to sit behind a desk. All within a couple years. I am just having a hard time dealing with all of it.... I feel like nobody understands.............
@brsjas Sir, First of all, let me thank you for your service to our country. Especially with AS. You are not alone for sure. i found that out when I posted my first vids. i was blown away and very humbled by the responses I got from all around the world from people like me, suffering the same way in silence. Its true, not many people understand and they seem to have an attitude about it sometimes. They will only change if they experience it for themselves. I dont wish it on anyone though, :)
Hi there.. I am a 30 year old mom of three and wife of 11 years. I have been living with the gradual progression of the AS since about 12. Docs just loved giving me muscle relaxers and pain killers there was no way a female could have any spinal arthritis.. I finally got the diagnosis about 6 weeks ago.. I am wondering if anyone has risked Humira. Right now I am on prednisone and cymbalta. Doc wants me off the prednisone. anyone have any advise?
@bby4ta Well this dam disease is very hard to deal with, and each of us gets their own brand of the pain. It really depends on what you can do and how your body deals with meds. I had to give up my pain killers last year by choice. I did not like the side effects and I could see that I was on a one way street, No one ever has to take less. They only have to up the amounts until it wont work, then its on to the next pill. My advise would be to start small, but try to get off the strong meds.
@bby4ta A lot of people have said great things about Humira. I have not tried it yet, but if things get worse I may. I have the thought that if I can hold myself at a certain level of treatment and fight it before I have to go the next level, I am saving myself from the end of the line. Eventually we will run out of meds that work. That is a scary thought! Take care and I hope you are doing better.
Brother, I too am an AS patient since 18 and I was on painkillers like Indomethacin and some muscle relaxants for 2 years, on and of dis pain used to crop up.I am doin constant physiotherapy and an alternative medical science called "Homeopathy" which has no side effects and is pretty effective in da long run.....Allopathic drugs for AS are very toxic and de have serious side effect in da long run.....Very dangerous for Kidney patients.....Brother take care n Peace 4m India !!!
@diazthestudious Yes it is hard to deal with, I am off the bad drugs for this and I only take a few things that keep my going. Thank you for your reply. I hope you are doing well. Hey, you called me brother, are you a fellow Freemason by chance??
@ASsufferer Ha ha, I called u brother bcoz u share da pain n emotions similar to all AS patients.....BTW I am aware of Freemasons but never knew that calling Brother is synonymous wid freemasonary......Anyways gr8 to hear 4m u :)
I'm on Humira, which is great. However I'm on Fentynal 75mg patches which are supposed to last 3days, they last just about 24hrs now. I get muscle spasm after a day. Has anyone else had this? fear it may be body addiction.
@GlobalMongrel It could be an addiction. Those patches have killed people, So I dont use them any more. I gave up all my RX painkillers a year ago because I couldnt take the side effects. I would try to get by without them if you can.
I can really relate to what all you were saying in the video. I was fortunately diagnosed with having AS within 2-4 months of my first symptoms. I have taken about 7 infusions of remicade (infleximab) over the last 6 years with my latest a few days back (after 2 years). I have been managing the last 6 months or so with ayurvedic medication and will try a low starch diet now. They say it really helps!...
I can really relate to what all you were saying in the video. I was fortunately diagnosed with having AS within 2-4 months of my first symptoms. I have taken about 7 infusions of remicade (infleximab) over the last 6 years with my latest a few days back (after 2 years). I have been managing the last 6 months or so with ayurvedic medication and will try a low starch diet now. They say it really helps!....
I can really relate to what all you were saying in the video. I was fortunately diagnosed with having AS within 2-4 months of my first symptoms. I have taken about 7 infusions of remicade (infleximab) over the last 6 years with my latest a few days back (after 2 years). I have been managing the last 6 months or so with ayurvedic medication and will try a low starch diet now. They say it really helps!
I can totally relate to what all you said in the video. The pain, the stiffness, daily struggle trying to get up, walk around and so on and so forth. I was diagnosed within 2-4 months of my first symptoms thanks to my mom who is a doctor.
I have taken 7 infusions of remicade (infleximab) and I took my latest a few days back. The last 6 months or more I managed with Ayurvedic medications. I have heard that a low starch diet really helps with AS.
I have A.S. and just started Remicade infusions, I am praying that it works because the A.S. completely changes your life for the worse. I am praying for you and all of us that have A.S.!
So I feel for you brother! I am myself having a flair up in my left hip right now and im hobbling around but I took my embril shot about 10 min ago and I cant wait for a good day tomorrow. Seriously if you are tired of this and eating loritabs like candy try Embril. True the best remedy is stretching but you know as well as I do if you cant get out of bed its pretty hard to stretch. TRY IT!
@jdesign918 Yes its true that you cant stretch if you cant get up! I am still able to manage it with a few meds, no painkillers though. I gave those up a year ago and I have LESS pain now. Those pills make you hurt worse i think. I hope you are doing well. Sorry it took so long to reply. I have been quite busy! Take tare!
Hey man I have AS as well and yes Embril works. Yes it does supress your immune system but to be honest I have not noticed a difference in yearly sickness. I would really try it. There is a pharmacy called curiscript (i think thats how you spell it) and you can get your injections for free. When I start feeling myself get tight right before it gets really bad and the next morning I am back to my old self. They said I need to take it twice a month but I only take it about every 6 weeks.
I'm a 19 year old from Romania I'm so sorry about you're disease .. I am diagnosed as whell with AS I hope they will find a cure... Thank you for you're video.. It gave me hope.
@aditamad33 I am sorry I have not had time to respond until now to your post. It warms my heart to know that my video gave you hope. I had no idea that there were so many people just like me suffering. I hope you are doing better. Take care and God bless.
@Magician556 Sneezes only hurt when I have been sleeping for a while. And its right in the center of the back, where I usually dont have pain unless I sleep more than 6 hours. :(
@ASsufferer for me i hurt when i sneeze. Im on remicade now. An injection specially for AS. But that jab can be harmful. It decreases ur immune system. When i first jab, immediately i felt weird. My heart was beating very fast. Second one was different. i felt pain in my arm where the remicade was injected and i felt dizzy. totally different from the last one. Now im waiting for the third one. Im not sure whats going to happen next. This jab is expensive. I live in Singapore and it cost S$2000
I was diagnose with AS last yr after a 4 yrs pain. During the 4 yrs no doctor can know wat cause the pain. Oni last yr a doctor diagnose me with AS. lol. The pain is in my hips not in back. Currently im using crutches to walk. Had spasms the past week which is damn freaking freaking painful. after a jab the spasms are gone but the pain is still there whenn standing and sitting down for too long.
@Magician556 Yeah my hips hurt alot too. It is mostly when I sit for too long. I used to limp and move slow when I would get up but I finally kicked myself in the a** and said "MOVE!!!". Now I still have pain, but I know not to sit too long and I just move fast in spite of the pain. It did work! I can walk a bit faster now. I had to get mad at myself and really give myself the 3rd degree about it. It may not be fair to me, but its the only way I can get through it. Take care!
Hi,i have not been diagnosed as yet with as but i am most definatly suffering from the all the symptoms.i have been to the g.p many times over the last 8 months as the symptoms have got worse.i have pain in the middle back which comes around the rib cage and abdominals which is very painful and stiff My hips knees ankle and bottom of my feet kill me when sleeping and walking for up to 2 hours.i ma off work right (chef) now due to fact that i was prescribed anti inflammatory drugs.i passed blood
@TheMark6969 Dam, being a Chef would be very hard as your on your feet the whole day and moving alot. I would say, keep doing it as long as you can. I know its hard, but find ways to make it less painfull. I wear a back supporter and it help tremendously. My heels hurt alot and I cant really do anything about that. Just keep moving. It will hurt worse if you sit and let it tighten up. Sorry I took so long to reply, I have been too busy!
Hi... Using my son's account with his permission. I'm female, 52. Had a mild flu, then 3 days later neck pain. Thought I'd slept wrong. That night, slight fever and pain spread to wrists and fingers. Over 4 days became debilitated and in agony. Couldn't get out of bed, off toilet. Blood tests all normal. Doc said go home. Saw rheumatologist and was diagnosed AS. I have a genetic marker. Advice, when pain wakes you, GET UP and stretch through the pain. You'll get a couple hours more sleep.
my father has as for the pas 16 years now an he cant bend down to pick up simple things on the floor he can barely reach up in the cupboards although the first 5-10 years he was playing hockey and i think being a woodsman for so long hit him hard in the long run.
@crazyperson3245 Yes I know what that is like. I use a pick up tool that I affectionately named my "old man grabber". Im 42. I should not need anything like that , but I do. :(
Hey, i have been sufferin g with back problems since the age of bout thirteen, it would usually be sporadic times when i would feel my back seizing up and aching, but it was soemthing that i jsut put up with because my friends used to burn me for acting like an old man, so i sucked it up, im 20 now and my back problems are worse than ever, I have been to a few physio therapists and doctors and they think AS might be the cause, how were u diagnosed is there any tests that wud help?? thanks
@ValonSGT Sorry I did not reply sooner, I have been quite busy! My friends did the same exact things. It is extremely hard to deal with, since I did what you did, I sucked it up. I finally said to myself, these people are not in pain,. and they are not going to rub my back for me either. They just dont understand. The only way they ever will is to have it. It happened to my friend and he finally respects my condition. It sucks that it takes that to get them to understand. Take care! more........
@ValonSGT about how I got the DX. I moved to another state and got a new Dr. He saw my record and did some X-rays and told me that I had a bone spur on my lowest Vert. and that he wanted to test me for the Gene HLB-A27 I think it is. If you have the gene and the symptoms then they give you the label. I suffered from the age of 15 to the age of 38 before any Dr. thought it might be AS. It is under diagnosed in young guys since they get injuries a lot. I hope this helps!
@npodonnell Its funny but I think "keep moving" is the best medicine you can take. Its a sure thing that you will rust up if you dont move! It is unfortunate that it took 6 years for you to find out what you had, but at least you were not like me, I went for roughly 25 years before finding out exactly what my devils name was. Thing is, I already knew all about AS from my friend and his mom.
hello for everybody !! I have AS , I have been medicated with remicade with great advances , now I am with autohemoterapy with also great advances ! I am looking for people to chat with , in english , to learn the languaje , also for coment experiences about our AS , good luck for everybody in your lifes , I will be waiting for your mesage , bye, bye !!!!
Hi, Thanx for your response. I really can't tell you how I m feeling? However next Saturday I m visiting Dr. Mathue, he is very famous across north India. Hope he can suggest me some thing good.
Again thanx & hope, Soon I will get back to you with Dr. Mathue's response on this.
@maddyad13 I hope he is good at this As thing. Explain that you have it and be sure to tell him ALL your symptoms, even if they seem like they are not related. God be with you!
@mgonza29 Yes I have heard alot about Embril, but I have not yet tried it. I am a bit reluctant because it suppresses your immune system, but I may need it someday so the verdict is still out, I know alot of people with AS do use it and swear by it.
@ASsufferer I am on Remicade (similar to Embrel). The immune system side effect is fine. I am not scared of infections. Honestly, these drugs are a miracle. You will regain some movement.
I'm 22yr, I suffering from AS from last 5 year however just few days back I came to know about this. There is nothing to explain my situation because you know this very well. All I need is your suggestions, what to do in this condition? Hope we will recover from this situation soon....
I'm 22yr, I suffering from AS from last 5 year however just few days back I came to know about this. There is nothing to explain my situation because you know this very well. All I need is your suggestions, what to do in this condition? Hope we will recover from this situation soon........
@maddyad13 Thanks alot for commenting and asking. It is hard to tell if we will ever get better, and in reality I think its impossible since the damage is done to the joints already. Our best hopes for anything like recovery is stem cells. They say that those have the potential to stop it, but it will not repair the damage done already. Maybe a robot body? LOL no really, it is a very hard thing to live with but if you can try to work on a few things it can get better. I will write more in a few.
I'm 22yr, I suffering from AS from last 5 year however just few days back I came to know about this. There is nothing to explain my situation because you know this very well. All I need is your suggestions, what to do in this condition? Hope we will recover from this situation soon....
Amen about the hot showers. I can relate to not being able to move at all, just basic movements trying to get out of bed and walk are complete torture. This disease has ruined my life -- I'm 25 but have had this since I was 19. Living the life nowhere near of the average 25 year old and closer to an 80 year old. Mind-numbing agony does wear you down, thank you for just understanding. I feel SO alone.
@jennadrums Your not alone, thats how I felt when I made these videos and I had absolutely NO idea that I would get so many responses and thanks for sharing. I have been very humbled by this all. I was thinking that it would be a great thing if all of us could have a huge party sometime somewhere and get to meet and say hi to a huge room of people EXACTLY like us. BTW, my sister saw a PSA about AS awareness the other day on TV. I guess we are getting the word out! God bless you my friend. :)
im 30 years old and have ankylosing spondylitis. most days i almost cant even walk any more. i feel like im 80 years old.every joint in my body hurts. im at the point now that i am going to see about getting an electric wheel chair for when i have to go out of the house (inside of the house isnt big enough for a wheel chair but i have a caine i use). im alergic to most pain pills so that doesnt help much.i cant take is any more.
My 35 yr old cousin got severe spondylitis and he is in sooo much pain. He recently got it like 3 weeks ago and I was wondering if he will be able to still do normal activities like surfing because he loves surfing. Will he always feel pain or I it just sometimes?
I also suffer from A.S. and I wanted to suggest to other suffers Skecher's Shape Ups. The Round bottom of the shoes creates an instability that requires you to stand up straight, improving your posture over time. Also there is a kinetic wedge in the sole (basically like a memory foam) that absorbs shock while your walking, so it helps remove alot of the pain and discomfort in your lower back and knees. I have found this, coupled with daily exercise has greatly helped my joint pains.
i was looking on the net for pain from hip, lower back and neck and ran across this Ankylosing Spondylitis sounds like same thing i'm going through now but haven't been to the doctors for diagnosis im hoping it's something like i slept wrong but my hips when i walk feel like there about to dislocate kind of pain and my neck is stiff along with lower back pain all at same time i'll give it a few days i hope i don't have this problem
@truesivad Well it could be possible. I would ask you if you have been in pain a long time and how old you are. You could have any number of other problems. There is a simple blood test where they check for the gene that they related to it, I think its HLB-A27 or something like that. If you have the gene and the symptoms, you will get the DX of AS. I hope its just muscle problems and nothing more serious. God bless and I hope you get better.
Thanks for sharing! I've had a very similar experience except I was diagnosed at 24 (suffered since age 17). Am now middle-aged and have a new lease on life due to REMICADE infusions. It's criminally expensive but worth every penny. First time I've been able to live pain free for any extended period of time. Not a cure for AS (there is none) but life is much, much better. God bless u &other fellow sufferers. Exercise, pray & I encourage you to look into Remicade and other new TNF blockers!
Since I've been diagnosed 20 years ago I found resistance training most helpful. So I became a gym-rat, hence my name. I'm not saying I'm perfect myself. Try light weights for many many reps. IMHO what this does is force the immune system to repair muscle tissue and leave the connective tissues alone. I'm huge and hunky for this. Both my feet blew out 8 weeks ago, I'm on the sulfasalizine and the other junk. Pull downs for your back, and 250 knee push-ups soldier. It gets things moving.
Hey, I have AS too as does my brother.....been diagnosed about 6 years not. I'm 31 yr old female. Symptoms since about 14 or 15. I have it pretty much under control for most of the time but at the moment, my achilles and heel are killing me! On TNF blocker injections which are fantastic. Feel free to mail me if you would like any info or advice. maeveclarke@hotmail.com
Hey, I have AS too as does my brother.....been diagnosed about 6 years not. I'm 31 yr old female. Symptoms since about 14 or 15. I have it pretty much under control for most of the time but at the moment, my achilles and heel are killing me! On TNF blocker injections which are fantastic. Feel free to mail me if you would like any info or advice. maeveclarke@hotmail.com
Hey, I have AS too as does my brother.....been diagnosed about 6 years not. I'm 31 yr old female. Symptoms since about 14 or 15. I have it pretty much under control for most of the time but at the moment, my achilles and heel are killing me! On TNF blocker injections which are fantastic. Feel free to mail me if you would like any info or advice. maeveclarke@hotmail.com
@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
I'm a 39yr old woman and have been living with A.S since i was around 15yrs old, it started as sharp pains in my sacroiliac joints the Dr's just thought i had sciatica, it wasn't until starting to get a stiff neck at around the age of 24yrs that they did blood tests to discover I had the HLA - B27 gene markers and a bone density scan was preformed showing my disease, both myself, my sister and my father suffer with this disease, dad has many complications now as a result of A.S
@Bundyfun71 Man that sucks. It sounds like you and I have the same timeline. I started to get the first pains at 15, and my neck started acting up at about 24 also. I have largely been very lucky with the neck. It is super stiff, but I just live with it and stretch it alot. Best of luck to you and God bless.
They don’t charge money (Rs.10/- , Rs 50/- your wish). They say it is power of almighty.
If any doubts, please mail me at kaushikack@gmail.com
In PUNJAB, travel to PATIALA. From there to a small town NABHA. Take to Malerkotla Road. Just travel 3 kms on this road, & one reaches a small village TINGI.
Here, there is an aged person NOOR MOHAMMED. For so many years, I have seen this person curing people of dreadly malaise known as SPONDYLITIS.
Another person is near Chandigarh. From Chandigarh, go towards Mohali & you come to a place called SOHANA. Here is a huge, palace like GURUDWARA. At the back of this GURUDWARA is AMROOD WALA BAGH. Here, there is a person who has cured thousands of people of this malaise. Lastly, Sh.S.C PURI Bata Shoe Store SIRHIND, Near Railway Station Bridge Punjab, INDIA He also works on the same malaise. Gives something for Oral consumption. If any doubts, please mail me at kaushikack@gmail.com
Thank you so much. I am 28 years old and I have been diagnosed with AS 1 month ago.
It feels so good to know that somebody can understand the pain I have or had... Not being able to move in the bed, not being able to walk and without talking about those spasms...
I don't know if you experienced that but sometimes I feel people around me don't see me that sick. It makes me feel so bad.
@karine1282 :hi my name is vicky ,, i m 22 years old!!! i was diagnosed with A.S. 2 years back !!! i want to chat wid you about A.S...my email id is vicky2732@gmail.com..please mail me!!!we can share our thoughts!! please i beg you!!! this pain is unbearable!!!
Maybe I'm just lucky- diagnosed age 40 after 20 years being told psychosomatic, pull yourself together etc. I had iritis (common with a.s.) I say lucky because I found a yoga teacher who helped encourage me to do yoga (we can all do it even if paralysed neck down, it's just a question of degree). Recently, I've found that using water exercises in nearby swimming pool is brilliant- no, it' not easy- it's bloody hard- well done you for making the video!
Maybe I'm just lucky- diagnosed age 40 after 20 years being told psychosomatic, pull yourself together etc. I had iritis (common with a.s.) I say lucky because I found a yoga teacher who helped encourage me to do yoga (we can all do it even if paralysed neck down, it's just a question of degree). Recently, I've found that using water exercises in nearby swimming pool is brilliant- no, it' not easy- it's bloody hard- well done you for doing the video!
I know that docters ignore diet (because it doesnt make profits for them when youre healthy) but diet can realllly effect it. I have ulcerative colitis, and starting to develop AS like my grandfather had. I've tried a startch free diet which eliminates alot of inflammation and food sensitivites... Im trying out raw vegan cause I'm serious about avoid more auto immunity. Theres a lot of crazy raw vegans but do it at your own pace and to your own benifit.
hello, i am legally blind and have suffered from inflimation in my si joints, scoliosis, severe muscle spasms & fatigue, and bulging discs, today i have been told i have this condition, im really scared, i have to take oxy contin for pain relief and i just want to know if anyone else out there has any advice or if there is any support groups out there online.
@wally1207 Hello, sad to read about your problems. It's always hard to find out that You have a condition. I was too. Have you been offered TNFa-inhibitors? It's one the latest treatments for AS. I have not been offered this treatment since my problems are'nt so severe. Hang in there!
@wally1207 Hello, sad to read about your problems. It's always hard to find out that You have a condition. I was too. Have you been offered TNFa-inhibitors? It's one the latest treatments for AS. I have not been offered this treatment since my problems are'nt so severe. Hang in there!
wow! I can't believe someone else with the same symptons as me! I am on remicade now and is helping a lot. I was tried salfasalasine, celebrex, and other things which were taken off the market cause of serious side effects. Chiro and massage therapy helps too.
Thank you soooo much for doing this video. The way you discribe your pain and progression is exactly what I have been experiencing over the years. I wish you all the best.
yeah that's all true, but i don't no which of us A.S victims have it worse than others but me i guess i am really screwed mine has already went to Bamboo Spine! literally, so now that's what my spine looks like all good and fused together and now live a pretty F-ed up life, even though i want to do the same as aziz829tube, but i am not, but there's always those days, i would do a video to show people what A.S. (bamboo) looks like but i don't need to bring anyone down any further but Thanks again
Mickeym1a2n3 5 days ago
To everyone sufferer.google serrapeptase.Thats what has made my life much better..Hope the best for all yall.
djmancon 2 weeks ago
hello. is it ok if i ask for your name? you can email it to my email address: arousal513@yahoo.com if you dont want to post it here, thank you :)
arousal513 2 weeks ago
Thank you for posting this video. My father has AS and I'm trying to find out if his ear ringing is associated to this condition. Have you ever experienced that?
schneidable 2 weeks ago
@schneidable yes i think it does come with A.S, i no i have had the ringing as far back as i can remember, i used to think it was gonna drive me crazy but i am still here lol and i no its not funny Believe me i no, my heart goes out to him but he's really gonna have to be STRONG! life's a B#$%h! with A.S and there's no Cure. i hoped this helps
Mickeym1a2n3 5 days ago
Thank you. That's all I can say. I am now 98% certain that I have AS, and watching your video definitely makes me believe it even more. You actually say several things, word for word, that I have said to describe what I have been going through. It's uncanny actually. Again, thank you.
dontheascender 3 weeks ago
no emergency hospital knows about this pain, last time i was about 7 hours in pain, liyng in a corridor, on the medical bed, waiting for some doctor to see me, and in the minute he saw me, he said it was nothing and gave me a voltaren injection, which i had to wait for one hour! So i gave up to call ambulance! I have myself control on this pain. That night i had about 3 brufens 600, at once! and for about one hour, I could finally sleep!! This disease must be better known in the medical comunity
SusanaNeves7 3 weeks ago
I still haven`t an oficial diagnosis, because the exams doesn`t tel specific AS, but artroses and potencial inflamation disease!! I am stil waiting for a reumathologist in public service, in Portugal, but only in one year! Till then i have some brufen 600, and Turox,60mg. I have a dinamic life that keeps me in movement, and i can live with some pain, for now. It is already an habit to have pain! last year i had 2 crises, but i gave up to go on the emergency ambulance, because nobody knows about
SusanaNeves7 3 weeks ago
I`m 35, and i have this pain since my 26. When I finnally decided to invistigate my sintoms on the internet, I realized that they were connected with most of the AS sintoms. I decided to go to have some information with a doctor about that, because before, my pain was treated as (i don`t know the tecnichal terms for it in english) lombalgy, ciatalgy, stress, a bad position during the sleep, etc. When i found AS on the internet, i realized it was more than that. Now i still haven`t an oficial
SusanaNeves7 3 weeks ago
Im 21 and had this diagnosed 3 months ago. I have found out swimming as exercise has done really good for me. Theres hardly no pressure to joints as the water holds your weight and you can easily vary the resistance of the workout. I feel myself more strong in water. Now, that I haven't done my pool routine, which was basically 1km every other day, my neck starts to feel stiff and I feel pressure in lower back. I can't seem stand straight. I always have taken a sauna after swimming (80+C=176F).
sandre90 1 month ago
Let me start my responce by saying a very heart felt thank you to ASsufferer for posting this video. I will be posting my own testimonial video within the next week and I encourage everyone to do the same. ASsufferer is right there needs to be better awareness of our condition/disease, by both the public and medical communities. I am a long time suffering patient with a recent diagnosis. I have other medical issues so starting Humira right now is not an option and will be discussed in my video.
gmerhbg1972 1 month ago
@ASsufferer. I am deeply impressed by your story. You have very sad eyes and I can tell that it is a struggle for you. I wish I could do something to help you. Some believe that medical fasting might decrease the pain, but I am in no position to recommend it. I have been diagnosed with Sacroiliitis. The pain in my lower back is sometimes so severe that I can't turn in my bed. My HLA-B27 is pos., ESR = 30 and my lower back pain never went away during the last 9 years. Does it seem to be AS? :-S
alexandrinushka 1 month ago
Thanks for posting. I can really relate to what you are saying. All of it. I've been on disability now for 2.5 years. It has not been easy and the insurance is threatening to cut me off. I've seen too many doctors and the last one I saw told me my problems were all in my head and he sent me to a mental health clinic. They told me my problems were physical, not mental. Saw the Rhumatologist today...he suspects AS, but have to get an MRI. I want my life back.
RatLadyLover 1 month ago
@ASsufferer Thanks for posting this video. I have had similar pain to what you describe for around a decade now, and have just recently come to realize it is likely Ankylosing Spondylitis. It is for some reason comforting to know there are others out there who are dealing with the same symptoms I am (though I'm obviously sorry about this as well). Take care.
JonSoralover 2 months ago
My doc feels I may have this as I've got a problem with my SI joint. Only my right side, I got my blood test on Monday. I'm kind of freaked out, my mum suffers from rheumatoid and osteoarthritis. I do not want to end up in her condition at 47 years of age. It's a scary thought.
Does it hurt when you sit down for long? I've no problem with that! Seems to help actually.
skipskops 2 months ago
wow, thats my own story. The most important discovery for me was that I had to change my diet. ~~AS and stomach somehow related ~~
Starch in food = agonizing pain /// milk / bread / cheese / pizza = pain
________________________________________________
NO starch in food = (less) pain
ginger tea (and eating some ginger) = less pain
one crushed raw garlic (always with food) = less pain
suntanning/sunlight on skin (<20') = less pain
combine all of the above = less pain
Oceanofsand1981 2 months ago
Thanks for making this video. I am 55 and just got diagnosed, after being misdiagnosed all my lfe. It was actually the surgeon replacing parts of my cervical spine who finally told me. I am extremely ill now, and need a replacement of my lower spine to keep walking. I am sending your video to my friends and family who are having a real hard time accepting what is wrong with me. AS sufferers need understanding and compassion more than anything.
Artchyk1 2 months ago
What a great video dude. I have so much sympathy for what you have been living with for more than half of you life. I have AS as well. I am 60 years old now. Mine first started, I learned in 1980, with a year long battle with mononuclosis in 5th grade, then rhuematic five at 15, the the back began, very much like your story. It attacked my hips in college and just ravaged all over. When I found out about the AS diagnosis, my doctor had me start with weight training. What a difference.
cragtex 2 months ago
I had a physio push on my neck. Ever since I have not worked for a year. I have sacroillitis and fit the description of as. I'm not diagnosed yet. I can't sit or stand for long. This is incredibly debilitating and wish I had my health again. I'm 29 male who was fit and healthy now I eat painkillers 24/7 . I pray for a cure and good luck to all with this condition
Jaybo6969 3 months ago
@ASsufferer well the new meds did not take. I ended up with flu like symptoms for three days at a time. Making things worse. For now back on prednisone and cymbalta. Still out on medical leave. But doing much better. Still can't stand for more than 30 mins.
bby4ta 3 months ago
@venom507 yeah I know how you feel. I am glad I did not know what i had for a long time. With this problem, it is easy to feel that life sucks, and at times it does. But we keep on fighting and trying to squeeze whatever life we have out of our time here. My pain started at about your age so I know. I hope you found a way to make things a little easier. Take care and write anytime. Sorry it took me so long to reply!
ASsufferer 3 months ago
I have been diagnosed AS since 18 years old. I have been living in pain for more than 20 years. Lately, the disease affected me greatly. My medicine no longer helps. Then I tried my diet. Cut sugar, coffee, red meat and carbo from my diet. More fruits and vege. Adopt a more alkaline diet. U can google what food and drinks are alkaline. I started to feel better. I then do stretching and tai chi everyday. My condition improved. I hope to share this to all AS patients and hope that it also works f
seizepoon88 3 months ago
@seizepoon88 Thanks for checking out my videos. I used to do a lot of martial arts, and I took up Tai chi also but found it was too hard on my knees for some reason. Its off subject a bit, but did you know that Tai chi is a very effective self defense if you do the moves fast and with power? I love it. I bet it does help with the AS. I may try the diet, but I have too much going on right now to do it. Well thanks again, write anytime!
ASsufferer 3 months ago
Sorry Miss if you have AS it's a disease and your are stuck with it for the rest of your life....
nanabella1961 4 months ago
@nanabella1961 Yes its true that your stuck with it. Now what? Lay down and except defeat? Maybe for some, but if you have a fighting spirit and cant see yourself taken out by AS, then put up your dukes and start swinging,
ASsufferer 3 months ago
so i decided to learn this therapy and im doing my project work on AS so if people who are interested in getting rid of your pain they can volunteer and drop in my clinic or contact me for the sae ..
thanxs
elvisin83 4 months ago
@elvisin83 Where is your clinic? I love that you are helping in that way.
ASsufferer 3 months ago
hi everybody , i have been diagnosed with AS last yera i usually have this pain in my nek and soemtime in lower back ,i usually ignored all this .but last year i got sever inflammation in my both knees and left hips because of which i was nt ble to stand even .anyways i did lots of allopathy and homepathy but the main thing that helps me is biodynamic craniosacral therapy .
elvisin83 4 months ago
@elvisin83 Wow that sucks man. I was wondering what biodynamic craniosacral therapy is and how it is done? Can you tell me? Thanks!
ASsufferer 3 months ago
You really Impressed me with your video , I'm a 17 year old dude , That has been suspected with AS , The morons mixed my Test results And instead of HLA-B27 - Negative as it should of been , They gave me one with Positive , Thank god that That doctor looked twice , and saw the error ,Keep your head up guys . !
Ketam1na 4 months ago
@Ketam1na Yeah that test is a pain. I have heard that 97% of the people that have AS, have the gene, but there is a 3% crowd of folks without the gene but they have all the same afflictions as those with it. If you have any problems like that at 17, you should take a look at the cause. I feel for you man not matter what the cause it. It sucks to feel like your 50 when your 17. When I was 25, I would get up and say to myself " If I feel lke this at 25, how will I feel at 50?? Take care man!
ASsufferer 3 months ago
@ASsufferer My knee was hurting and they tought that is AS at debut , but After 2 MRI's , One at the knee and one at the Sacro-Illace Joints , The one at the knee showed I have a Menisc Injury , and the Sacro-Iliac Joints showed nothing , I did HLA-B27 Again and it turned Negative , So Thank god that I dont have this disease , Keep your head up ! .
Ketam1na 3 months ago
@nessymc286 I have followed up on the ibs diets... The only cautionary I would give is do it slowly! The sudden change away from starch can really alter your mood! Also, very hard to stick to if you are on a limited income. Some of the replacements are specialty and quite pricey....
bby4ta 5 months ago
@bby4ta yeah I found the same problem. I want to eat in a certain way but the wallet does not agree! It sucks. Take care!
ASsufferer 3 months ago
@aziz829tube stick neck is painful, frustrating, depressing and just all around nasty! But, like all of us we all have to stay positive. There is a surgery to make you move again. I know many friends that have had to be fuzed because of accidents...one of my friends had the halo decorated by her friends we each hung something on it to remind her everyday she us not alone. So remember we are all here and non of us is alone! If you need an ear email me @bby4ta@gmail.com
bby4ta 5 months ago
@bby4ta Thanks man, it is nice to have an ear from time to time. Keep up the good fight! Thanks for the comment.
ASsufferer 3 months ago
@ajonz9213 how do I check your profile? Can you just send me the link. I have no clue how to do anything but look for video on you tube.
bby4ta 5 months ago
@bby4ta I think if you just click on the picture up above the video you can get to my site. Not much to see though! LOL, take care.
ASsufferer 3 months ago
Comment removed
ajonz9213 5 months ago
@ajonz9213 Thanks! I will check out the link soon. take care!
ASsufferer 3 months ago
A lot has happened in the last month. I am now on methotrexate (makes me feel like I have the flu for two to three days) and seems to be helping. Not much I would have to say. Now that the prednisone has fully left my system my hands are back to no strength, always a purplish red and in pain. My back and hips are also back to "just don't bend or move me". I am only in week three of the methotrexate still have two months to go to see if it is working. Until then I am out on disability.
bby4ta 5 months ago
@bby4ta Wow thats a long time to wait and see. I know how it is though. Medicine takes time to do its thing sometimes. Have you ever tried magnets to alleviate pain? I use a back brace with magnets built into it and its a life saver. Some people dont feel relief but I did. It works better on bone related pains than muscle main, but it does something! Best wishes to you and I hope the new meds work for you. Take care.
ASsufferer 3 months ago
I had hip and low back pain for over 2 years now. Currently i am 19 years old and after 5 Orthopedic doctors, 2 Physicians, and 1 rheumatologist i hope to have it figured out. She deduced from blood tests that i have some how contracted ankylosing spondylitis. Currently i have started Methotrexate after trying sulfasalizine . if you havent found any answers to your pain i would suggest seeing a rheumatologist. If you have any other tips let me know. its not an easy disease.
Andrew, 19
ajonz9213 5 months ago
@ajonz9213 Well, the truth is that Ankylosing Spondylitous is a condition really, not a disease. The real root of it all is a little germ that is usually not a problem. We all get it and make a white blood cell for it. The trouble is that in some people, their cartilage has the same gene as the disease. The white blood cells kill the germ, then go to work on all the cartilage. That causes inflammation (pain) and then eventually joint break down. You are right it is very hard to live with.
ASsufferer 3 months ago
@ASsufferer I feel you. I had 2 RA dr's tell me my pain was in my head. I saw a RA dr from UCLA and he said I have AS. So i saw another RA dr in my town and asked for an MRI and he went with it, but I had to ask for the contrast. So after the MRI I found out I had 2 bulging discs, inflammation on both sides of my SI joint, and inflammation in my kips. Amazing huh. It hurts like hell man.
LandRoverWay23 1 week ago
@ASsufferer its a disease. at first you say its not a disease its a condition and then you say it is a disease. Its a disease buddy. last thing you said was months ago, so how about an update.
LandRoverWay23 1 week ago
@ajonz9213 :)
530BigBen 3 months ago
I had Stick the neck vertebrae , so any surgery could bring the flexibility once again i am about to Suicide
aziz829tube 5 months ago
@aziz829tube My heart goes out to you. I know how you feel. Just try to find some way to get relief before you pull the plug. You own that to yourself.
ASsufferer 3 months ago
@aziz829tube ask for help! don`t be ashame!
SusanaNeves7 3 weeks ago
Have any of you tried the Raw/Living Foods lifestyle? It decreases and may even cure many diseases just by eating the right type of foods. Just YT Raw Foods and You'll see a ton. I'm looking into it for my dad (who is 58) who has had AS for years! I'm looking into The Living Foods Institute in Atlanta, GA now. I hope this helps someone out there.
snookems927 6 months ago
Per Primary Dr advise going back to normal eating until sulfazine is out of my system. I reacted quite negatively. Did not end up with rash but ended up bruising myself just because I could not stop itching. Also, skin was tinted yellow and blisters on my lip. This doc has also agreed that some time off from work to cope and readjust to the news is best. Any how hope ya'llz are holding on and moving as much as possible. Have a good night!
bby4ta 6 months ago
@bby4ta o wow, thats rough.... you got to be careful with that. Stevens-Johnson syndrome is not good.
ajonz9213 5 months ago
Hey ya'll want to give anupdate.
bby4ta 6 months ago
hi,im somnath 19 yrs old from india and suffering from the same since i was 11. started from hip,knees ,ankle it has now spread to my spine and ocassionally involves shoulders and jaws. i was bed ridden for 9 months during the early stages unable to cough,laugh,sneeze and believe me i have lost faith in god since then. iam on immuno supressive injections [enbrel] but that seems to have losing its effect now. i m worried hows my futures going to be and losing hope with every passing day.
MrSomnath91able 6 months ago
Hello im jon im 17 I found out I had as this year, I was being treated for RA since I was 12. I can fell it in.my lower back and kness. Personal I fell like one the luckyer people on earth to have found out so early in life and it not to be some.thing life threting like cancer or aids. Im on humira and tnf blockers, I started them about 3 mouths ago and I can defftly fell the diffrence when im out on the wrestling matt or just laying around, I loved the story keep it going
maneatingiraffe 6 months ago
Severe pain from Arthritis is a Health Canada accepted Category 1 condition for medical marijuana.
lantanada 6 months ago
Hi - am not sure if you have read the book by Carol Sinclair? It's called "The IBS Low Starch Diet". She was diagnosed with IBS when in actual fact she had AS. It is very common for woman to be misdiagnosed with either IBS or fibromyalgia as AS develops slower than what it does for men. I am still waiting on a final diagnosis but am pretty sure I have AS also. Totally agree about the excercise and hot water treatments!
nessymc282 6 months ago
@misteeq64 if you check out kickas.com the london as diet is just one idea on how food effects your body. I have been limiting starch and dairy but the pain is still bad. Really thinking eleminating all for a month to see if it works. Still on 10 mg predisone a new drug sulfazine and cymbalta. As well as 800 mg advil....
bby4ta 6 months ago
I feel your pain my friend. After 4 years of seeing doctors and going through tests/therapy, i was finally diagnosed with Ankylosing Spondylitis. To my huge surprise, i have been feeling the same symptoms that you have and i also find taking a warm shower in the morning helps me flush some of the pain away. Stretching and exercise is the best therapy i've found so far. This condition really puts any human being through a test of life.
musiclover3928 6 months ago
The gene test to diagnose AS is HLA-B27 - highest recorded cases is amongst boys around 14 years of age.
vsc94 6 months ago
Very glad to find this. Suffering for past 9 yrs and surrounded by people who think my claim of constant pain is attention seeking! Additionally I have lots of other health issues which could be related. Honestly some days I pray this misery will end. But a doctor once said since I have blood tests every 3 months, I'd probably live long. Didn't know whether I should have bashed his teeth in!
vsc94 6 months ago
my body the pain was unbelevable , then my feet turned 3 times bigger and i could not put it on the ground and my knee was inpain too!!! then i was so worried i went to d doc , and i was in the hospital during 2 weeks and finally they told me i have AS , it was last november more or less , i started to take pils on janaury as cortisone , naprosyn ... now i am taking one called metrotexat and i feel much better the pain have decrased and i hope to feel ok soon !!! we have to be brave!! hugs
TheJosep167 7 months ago
Hi man!! nice to meet u!! i am josep i am from barcelona and i have AS i am 27 ! since 1999 i felt pain in my lower back but i thought i was fbecause of basketall or my height i am 6 feet 5 inches , then when i was 20 i had and injurie in my leg i thought it was for basketball too ... when i was 23 during a summer my feet was really in pain for 3 months and i did not know why !!! but i recovered (still having a lit pain in my back ) from that pain , but when i was 26 one morning i could not move
TheJosep167 7 months ago
Thank you for responding... Doing a little better down to 15 mg of the pred. right now. Lately though my feet have turned into hot needles with every step. Attempting a starch and dairy free diet (very difficult on a budget but foods I love). It seems to help and can really feel the difference on my cheat days... Just keep moving! Is my new moto everyday....once again thank you for this forum.
bby4ta 7 months ago
@bby4ta Why a dairy free diet starch diet ???? The doctor told me nothing of such thank you
misteeq64 6 months ago
ahh! your soo lucky you can move your head to look up!
EbayFigureReviews777 7 months ago
My cat has AS - I'm looking for someway to help her.....wishing you well.
adamatova 7 months ago
Hello....I found the book. It's call "Your Body's Many Cries for Water" by Dr. Batmanghelidj. I haven't read the book, but I am planning to to it. All I know is that it consists of an intense drinking of water with seasalt. My brother found pain relief for the first time in 10 years after a few months of following the book recomendations. Please keep me posted on your recovery. Amazon has the book.
robintubeable 7 months ago
(cont. from Robin) I even contacted a man in Minnesota that claimed to have been cured by following the treatment in that book. I purchased the book and had it mailed to my brother in Tallahassee. Although he hasn't been cure...his condition has improved a great deal. He has no cervical movement....but the pain is all gone. I will try to find the Doctor's name and the Book's title as well for you all to consider. I wish you all to get better as I wish for my brother to regain his health.
robintubeable 7 months ago
@robintubeable Thank you for your reply and the book info. I would be very interested in learning more. Please let me know when you have the book title and Author. If it can help I will try it! Thanks!
ASsufferer 7 months ago
Hi. Thanks for the video. My name is Robin and I am from Puerto Rico. My brother (born 1966) has AS. His condition is very severe. I searched the web intensively a few years ago and I found a doctor from the middle east that claimed to have cured people with AS. He died sometime ago, but wrote a best seller book that has his treatment explained. It has to do with water and salt.
robintubeable 7 months ago
@ASsufferer Luckily the first 3 jab was free. So i intend to take oni 3 jabs. I feel much better now. i can jog and jump.
Magician556 7 months ago
Keep on posting brother! Keep on supporting each other!
GlobalMongrel 7 months ago
I was diagnosed last week with AS.. im 27 years old & a mother of a 5 year old daughter & a 4 year old son... Im seeing a physiotherapist & waiting to see a rhumalogist & im also on a lot of pain medication that are not helping.. im stiff all over; my legs, arms, back & neck ......why did i get this??
mslator1 8 months ago
@mslator1 Well, you got this because your family had the gene and you got the bacteria that starts the process. Its an Immune disease where your body makes white blood cells to fight the bacteria, but it has the same genetic marker as your cartilage. So your body starts to try to remove your cartilage! That causes swelling and eventually it breaks down the joint and it locks up with calcium. It happens in any joint in the body, mostly the back, but it can hit the ribs or any place.
ASsufferer 7 months ago
@ASsufferer Thanks for vid. I am probably in the same "mode" as you-had since teens, only have SI Joints fused, pain, years of everything-after the SI Joints fused, no pain for last 7 years. Dec10 woke up with a stiff neck. Mult.tests, X-Ray, MRI, etc. Everything relatively normal. Tried all homeopathic rems-nothing worked.Neck still so friggin stiff 7 moths later. Why? I go to spinal guy this week-he tells me cervical starting to fuse, 3 vert already-Nothing fused a few months ago-then bam!
dahlquist64 7 months ago
@mslator1 My advise is to keep moving as much as possible, and dont ask why. You will drive yourself crazy with why. Just live and try to keep what ever you have now as far as mobility. KEEP MOVING! Take care and please write back if you wish. P.S. I have 2 small kids like you and i decided that I am going to just do what i can and not let this hold me back from being involved in their fun. I have to sit out alot, but Im in the game!
ASsufferer 7 months ago
@mslator1 He is right. you cannot ask why. it will get you down and hurt relationships. Get on a solid workout regiment: swim and get on the elliptical, STRETCH a lot, lay on a yoga ball (suggestion by my Chiropractor) relax there, and stay positive. take great joy in your relationship and children. it has helped me a lot to have such a supportive girlfriend, its amazing. for my self i spiraled in to a deep depression and failed school classes. its not impossible. you can do it! :) we all can!
ajonz9213 5 months ago
I was diagnosed last week with AS.. im 27 years old & a mother of a 5 year old daughter & a 4 year old son... Im seeing a physiotherapist & waiting to see a rhumalogist & im also on a lot of pain medication that are not helping.. im stiff all over; my legs, arms, back & neck ......why did i get this??
mslator1 8 months ago
I was diagnosed last week with AS... im only 27 with 2 kids, they are 5 & 4. I'm on 2 crutches, with a lot of pain killers & a full time job! The stiffness is all over my body, especiallly in my neck, arms. legs & back. Is there any cure???
mslator1 8 months ago
@mslator1 Unfortunately, there is no cure for this. Only ways to treat the symptoms. There is hope with Stem Cell research, but it wont help us that already have damage from it, It will just stop it where it is, so the earlier you get the DX the better if they ever get those Stem cells working. I have found the only cure is to not give up, dont think of yourself as "sick" and to try to live the life you want to the best of your ability. Use your brain to find ways to do things differently.
ASsufferer 7 months ago
Thanks for the video. I always feel like people think I am exaggerating what pain I am going through. Like rolling over in bed or putting on shoes and socks. I hate that you are going through it, but it is good to know I am not alone out here. Sure feels that way sometimes. I was a Sergeant in the Army and have got to the point where I have to sit behind a desk. All within a couple years. I am just having a hard time dealing with all of it.... I feel like nobody understands.............
brsjas 8 months ago
@brsjas Sir, First of all, let me thank you for your service to our country. Especially with AS. You are not alone for sure. i found that out when I posted my first vids. i was blown away and very humbled by the responses I got from all around the world from people like me, suffering the same way in silence. Its true, not many people understand and they seem to have an attitude about it sometimes. They will only change if they experience it for themselves. I dont wish it on anyone though, :)
ASsufferer 7 months ago
Hi there.. I am a 30 year old mom of three and wife of 11 years. I have been living with the gradual progression of the AS since about 12. Docs just loved giving me muscle relaxers and pain killers there was no way a female could have any spinal arthritis.. I finally got the diagnosis about 6 weeks ago.. I am wondering if anyone has risked Humira. Right now I am on prednisone and cymbalta. Doc wants me off the prednisone. anyone have any advise?
bby4ta 8 months ago
@bby4ta Well this dam disease is very hard to deal with, and each of us gets their own brand of the pain. It really depends on what you can do and how your body deals with meds. I had to give up my pain killers last year by choice. I did not like the side effects and I could see that I was on a one way street, No one ever has to take less. They only have to up the amounts until it wont work, then its on to the next pill. My advise would be to start small, but try to get off the strong meds.
ASsufferer 7 months ago
@bby4ta A lot of people have said great things about Humira. I have not tried it yet, but if things get worse I may. I have the thought that if I can hold myself at a certain level of treatment and fight it before I have to go the next level, I am saving myself from the end of the line. Eventually we will run out of meds that work. That is a scary thought! Take care and I hope you are doing better.
ASsufferer 7 months ago
Brother, I too am an AS patient since 18 and I was on painkillers like Indomethacin and some muscle relaxants for 2 years, on and of dis pain used to crop up.I am doin constant physiotherapy and an alternative medical science called "Homeopathy" which has no side effects and is pretty effective in da long run.....Allopathic drugs for AS are very toxic and de have serious side effect in da long run.....Very dangerous for Kidney patients.....Brother take care n Peace 4m India !!!
diazthestudious 8 months ago
@diazthestudious Yes it is hard to deal with, I am off the bad drugs for this and I only take a few things that keep my going. Thank you for your reply. I hope you are doing well. Hey, you called me brother, are you a fellow Freemason by chance??
ASsufferer 7 months ago
@ASsufferer Ha ha, I called u brother bcoz u share da pain n emotions similar to all AS patients.....BTW I am aware of Freemasons but never knew that calling Brother is synonymous wid freemasonary......Anyways gr8 to hear 4m u :)
diazthestudious 7 months ago
This has been flagged as spam show
I am a 20 year old girl with this condition, I have a diary which I write that helps me deal with it.
arthritis-diary.blogspot.com
Its not very well written and I guess I'm not very interesting, it is what it is.
Rayraydiary 8 months ago
I'm on Humira, which is great. However I'm on Fentynal 75mg patches which are supposed to last 3days, they last just about 24hrs now. I get muscle spasm after a day. Has anyone else had this? fear it may be body addiction.
GlobalMongrel 9 months ago
@GlobalMongrel It could be an addiction. Those patches have killed people, So I dont use them any more. I gave up all my RX painkillers a year ago because I couldnt take the side effects. I would try to get by without them if you can.
ASsufferer 7 months ago
I can really relate to what all you were saying in the video. I was fortunately diagnosed with having AS within 2-4 months of my first symptoms. I have taken about 7 infusions of remicade (infleximab) over the last 6 years with my latest a few days back (after 2 years). I have been managing the last 6 months or so with ayurvedic medication and will try a low starch diet now. They say it really helps!...
suprath83 9 months ago
This has been flagged as spam show
I can really relate to what all you were saying in the video. I was fortunately diagnosed with having AS within 2-4 months of my first symptoms. I have taken about 7 infusions of remicade (infleximab) over the last 6 years with my latest a few days back (after 2 years). I have been managing the last 6 months or so with ayurvedic medication and will try a low starch diet now. They say it really helps!....
suprath83 9 months ago
I can really relate to what all you were saying in the video. I was fortunately diagnosed with having AS within 2-4 months of my first symptoms. I have taken about 7 infusions of remicade (infleximab) over the last 6 years with my latest a few days back (after 2 years). I have been managing the last 6 months or so with ayurvedic medication and will try a low starch diet now. They say it really helps!
suprath83 9 months ago
I can totally relate to what all you said in the video. The pain, the stiffness, daily struggle trying to get up, walk around and so on and so forth. I was diagnosed within 2-4 months of my first symptoms thanks to my mom who is a doctor.
I have taken 7 infusions of remicade (infleximab) and I took my latest a few days back. The last 6 months or more I managed with Ayurvedic medications. I have heard that a low starch diet really helps with AS.
suprath83 9 months ago
I have A.S. and just started Remicade infusions, I am praying that it works because the A.S. completely changes your life for the worse. I am praying for you and all of us that have A.S.!
goofygirly2010 9 months ago
So I feel for you brother! I am myself having a flair up in my left hip right now and im hobbling around but I took my embril shot about 10 min ago and I cant wait for a good day tomorrow. Seriously if you are tired of this and eating loritabs like candy try Embril. True the best remedy is stretching but you know as well as I do if you cant get out of bed its pretty hard to stretch. TRY IT!
jdesign918 10 months ago
@jdesign918 Yes its true that you cant stretch if you cant get up! I am still able to manage it with a few meds, no painkillers though. I gave those up a year ago and I have LESS pain now. Those pills make you hurt worse i think. I hope you are doing well. Sorry it took so long to reply. I have been quite busy! Take tare!
ASsufferer 7 months ago
Hey man I have AS as well and yes Embril works. Yes it does supress your immune system but to be honest I have not noticed a difference in yearly sickness. I would really try it. There is a pharmacy called curiscript (i think thats how you spell it) and you can get your injections for free. When I start feeling myself get tight right before it gets really bad and the next morning I am back to my old self. They said I need to take it twice a month but I only take it about every 6 weeks.
jdesign918 10 months ago
I'm a 19 year old from Romania I'm so sorry about you're disease .. I am diagnosed as whell with AS I hope they will find a cure... Thank you for you're video.. It gave me hope.
aditamad33 10 months ago 3
@aditamad33 I am sorry I have not had time to respond until now to your post. It warms my heart to know that my video gave you hope. I had no idea that there were so many people just like me suffering. I hope you are doing better. Take care and God bless.
ASsufferer 7 months ago
when u sneeze it hurts too right lol. That sudden spasm.
Magician556 10 months ago 7
@Magician556 Sneezes only hurt when I have been sleeping for a while. And its right in the center of the back, where I usually dont have pain unless I sleep more than 6 hours. :(
ASsufferer 7 months ago
@ASsufferer for me i hurt when i sneeze. Im on remicade now. An injection specially for AS. But that jab can be harmful. It decreases ur immune system. When i first jab, immediately i felt weird. My heart was beating very fast. Second one was different. i felt pain in my arm where the remicade was injected and i felt dizzy. totally different from the last one. Now im waiting for the third one. Im not sure whats going to happen next. This jab is expensive. I live in Singapore and it cost S$2000
Magician556 7 months ago
I was diagnose with AS last yr after a 4 yrs pain. During the 4 yrs no doctor can know wat cause the pain. Oni last yr a doctor diagnose me with AS. lol. The pain is in my hips not in back. Currently im using crutches to walk. Had spasms the past week which is damn freaking freaking painful. after a jab the spasms are gone but the pain is still there whenn standing and sitting down for too long.
Magician556 10 months ago
@Magician556 Yeah my hips hurt alot too. It is mostly when I sit for too long. I used to limp and move slow when I would get up but I finally kicked myself in the a** and said "MOVE!!!". Now I still have pain, but I know not to sit too long and I just move fast in spite of the pain. It did work! I can walk a bit faster now. I had to get mad at myself and really give myself the 3rd degree about it. It may not be fair to me, but its the only way I can get through it. Take care!
ASsufferer 7 months ago
Hi,i have not been diagnosed as yet with as but i am most definatly suffering from the all the symptoms.i have been to the g.p many times over the last 8 months as the symptoms have got worse.i have pain in the middle back which comes around the rib cage and abdominals which is very painful and stiff My hips knees ankle and bottom of my feet kill me when sleeping and walking for up to 2 hours.i ma off work right (chef) now due to fact that i was prescribed anti inflammatory drugs.i passed blood
TheMark6969 11 months ago
@TheMark6969 Dam, being a Chef would be very hard as your on your feet the whole day and moving alot. I would say, keep doing it as long as you can. I know its hard, but find ways to make it less painfull. I wear a back supporter and it help tremendously. My heels hurt alot and I cant really do anything about that. Just keep moving. It will hurt worse if you sit and let it tighten up. Sorry I took so long to reply, I have been too busy!
ASsufferer 7 months ago
Hi... Using my son's account with his permission. I'm female, 52. Had a mild flu, then 3 days later neck pain. Thought I'd slept wrong. That night, slight fever and pain spread to wrists and fingers. Over 4 days became debilitated and in agony. Couldn't get out of bed, off toilet. Blood tests all normal. Doc said go home. Saw rheumatologist and was diagnosed AS. I have a genetic marker. Advice, when pain wakes you, GET UP and stretch through the pain. You'll get a couple hours more sleep.
arnebenne 11 months ago
@arnebenne Its true, you have to be active and stretch as much as you can. Moving is the best medicine,. Hope you are feeling better.
ASsufferer 7 months ago
my father has as for the pas 16 years now an he cant bend down to pick up simple things on the floor he can barely reach up in the cupboards although the first 5-10 years he was playing hockey and i think being a woodsman for so long hit him hard in the long run.
crazyperson3245 11 months ago
@crazyperson3245 Yes I know what that is like. I use a pick up tool that I affectionately named my "old man grabber". Im 42. I should not need anything like that , but I do. :(
ASsufferer 7 months ago
Hey, i have been sufferin g with back problems since the age of bout thirteen, it would usually be sporadic times when i would feel my back seizing up and aching, but it was soemthing that i jsut put up with because my friends used to burn me for acting like an old man, so i sucked it up, im 20 now and my back problems are worse than ever, I have been to a few physio therapists and doctors and they think AS might be the cause, how were u diagnosed is there any tests that wud help?? thanks
ValonSGT 11 months ago
@ValonSGT Sorry I did not reply sooner, I have been quite busy! My friends did the same exact things. It is extremely hard to deal with, since I did what you did, I sucked it up. I finally said to myself, these people are not in pain,. and they are not going to rub my back for me either. They just dont understand. The only way they ever will is to have it. It happened to my friend and he finally respects my condition. It sucks that it takes that to get them to understand. Take care! more........
ASsufferer 7 months ago
@ValonSGT about how I got the DX. I moved to another state and got a new Dr. He saw my record and did some X-rays and told me that I had a bone spur on my lowest Vert. and that he wanted to test me for the Gene HLB-A27 I think it is. If you have the gene and the symptoms then they give you the label. I suffered from the age of 15 to the age of 38 before any Dr. thought it might be AS. It is under diagnosed in young guys since they get injuries a lot. I hope this helps!
ASsufferer 7 months ago
If I saw this video 6 years ago I wouldve known what was wrong...diagnosed with AS last week. Keep moving! I like that.
npodonnell 11 months ago
@npodonnell Its funny but I think "keep moving" is the best medicine you can take. Its a sure thing that you will rust up if you dont move! It is unfortunate that it took 6 years for you to find out what you had, but at least you were not like me, I went for roughly 25 years before finding out exactly what my devils name was. Thing is, I already knew all about AS from my friend and his mom.
ASsufferer 11 months ago
hello for everybody !! I have AS , I have been medicated with remicade with great advances , now I am with autohemoterapy with also great advances ! I am looking for people to chat with , in english , to learn the languaje , also for coment experiences about our AS , good luck for everybody in your lifes , I will be waiting for your mesage , bye, bye !!!!
urusol 8 months ago
Hi, Thanx for your response. I really can't tell you how I m feeling? However next Saturday I m visiting Dr. Mathue, he is very famous across north India. Hope he can suggest me some thing good.
Again thanx & hope, Soon I will get back to you with Dr. Mathue's response on this.
maddyad13 1 year ago
@maddyad13 I hope he is good at this As thing. Explain that you have it and be sure to tell him ALL your symptoms, even if they seem like they are not related. God be with you!
ASsufferer 11 months ago
ask your doctor for Embrel!! Its an amazing drug
mgonza29 1 year ago
@mgonza29 Yes I have heard alot about Embril, but I have not yet tried it. I am a bit reluctant because it suppresses your immune system, but I may need it someday so the verdict is still out, I know alot of people with AS do use it and swear by it.
ASsufferer 11 months ago
@ASsufferer I am on Remicade (similar to Embrel). The immune system side effect is fine. I am not scared of infections. Honestly, these drugs are a miracle. You will regain some movement.
AdrianMutu87 8 months ago
This has been flagged as spam show
I'm 22yr, I suffering from AS from last 5 year however just few days back I came to know about this. There is nothing to explain my situation because you know this very well. All I need is your suggestions, what to do in this condition? Hope we will recover from this situation soon....
maddyad13 1 year ago
I'm 22yr, I suffering from AS from last 5 year however just few days back I came to know about this. There is nothing to explain my situation because you know this very well. All I need is your suggestions, what to do in this condition? Hope we will recover from this situation soon........
maddyad13 1 year ago
@maddyad13 Thanks alot for commenting and asking. It is hard to tell if we will ever get better, and in reality I think its impossible since the damage is done to the joints already. Our best hopes for anything like recovery is stem cells. They say that those have the potential to stop it, but it will not repair the damage done already. Maybe a robot body? LOL no really, it is a very hard thing to live with but if you can try to work on a few things it can get better. I will write more in a few.
ASsufferer 1 year ago
I'm 22yr, I suffering from AS from last 5 year however just few days back I came to know about this. There is nothing to explain my situation because you know this very well. All I need is your suggestions, what to do in this condition? Hope we will recover from this situation soon....
maddyad13 1 year ago
Amen about the hot showers. I can relate to not being able to move at all, just basic movements trying to get out of bed and walk are complete torture. This disease has ruined my life -- I'm 25 but have had this since I was 19. Living the life nowhere near of the average 25 year old and closer to an 80 year old. Mind-numbing agony does wear you down, thank you for just understanding. I feel SO alone.
jennadrums 1 year ago
@jennadrums Your not alone, thats how I felt when I made these videos and I had absolutely NO idea that I would get so many responses and thanks for sharing. I have been very humbled by this all. I was thinking that it would be a great thing if all of us could have a huge party sometime somewhere and get to meet and say hi to a huge room of people EXACTLY like us. BTW, my sister saw a PSA about AS awareness the other day on TV. I guess we are getting the word out! God bless you my friend. :)
ASsufferer 1 year ago
im 30 years old and have ankylosing spondylitis. most days i almost cant even walk any more. i feel like im 80 years old.every joint in my body hurts. im at the point now that i am going to see about getting an electric wheel chair for when i have to go out of the house (inside of the house isnt big enough for a wheel chair but i have a caine i use). im alergic to most pain pills so that doesnt help much.i cant take is any more.
instagasm 1 year ago
My 35 yr old cousin got severe spondylitis and he is in sooo much pain. He recently got it like 3 weeks ago and I was wondering if he will be able to still do normal activities like surfing because he loves surfing. Will he always feel pain or I it just sometimes?
Brandon0000017 1 year ago
I also suffer from A.S. and I wanted to suggest to other suffers Skecher's Shape Ups. The Round bottom of the shoes creates an instability that requires you to stand up straight, improving your posture over time. Also there is a kinetic wedge in the sole (basically like a memory foam) that absorbs shock while your walking, so it helps remove alot of the pain and discomfort in your lower back and knees. I have found this, coupled with daily exercise has greatly helped my joint pains.
rebeccadodgen84 1 year ago
thanks for sharing...
somekindofdevil 1 year ago
i was looking on the net for pain from hip, lower back and neck and ran across this Ankylosing Spondylitis sounds like same thing i'm going through now but haven't been to the doctors for diagnosis im hoping it's something like i slept wrong but my hips when i walk feel like there about to dislocate kind of pain and my neck is stiff along with lower back pain all at same time i'll give it a few days i hope i don't have this problem
truesivad 1 year ago
@truesivad Well it could be possible. I would ask you if you have been in pain a long time and how old you are. You could have any number of other problems. There is a simple blood test where they check for the gene that they related to it, I think its HLB-A27 or something like that. If you have the gene and the symptoms, you will get the DX of AS. I hope its just muscle problems and nothing more serious. God bless and I hope you get better.
ASsufferer 1 year ago
dicen q la AUTOHEMOTERAPIA da muy buenos resultados ! alguien la ha probado ? la probare en unos meses , he dejado el maravilloso remicade !
urusol 1 year ago
are bone spurs common with AS. I have had it for a few years now and i think i have a bone spur in my shoulder
gregdubroca 1 year ago
@gregdubroca Yes, thats what happens when the body takes the cartilage away. Check in to that because they can be painfull!
ASsufferer 1 year ago
Thanks for sharing! I've had a very similar experience except I was diagnosed at 24 (suffered since age 17). Am now middle-aged and have a new lease on life due to REMICADE infusions. It's criminally expensive but worth every penny. First time I've been able to live pain free for any extended period of time. Not a cure for AS (there is none) but life is much, much better. God bless u &other fellow sufferers. Exercise, pray & I encourage you to look into Remicade and other new TNF blockers!
lifeisgolden29 1 year ago
guys take anti-tnf alpfa it's awesome !
jaycut28 1 year ago
Since I've been diagnosed 20 years ago I found resistance training most helpful. So I became a gym-rat, hence my name. I'm not saying I'm perfect myself. Try light weights for many many reps. IMHO what this does is force the immune system to repair muscle tissue and leave the connective tissues alone. I'm huge and hunky for this. Both my feet blew out 8 weeks ago, I'm on the sulfasalizine and the other junk. Pull downs for your back, and 250 knee push-ups soldier. It gets things moving.
bigboy45454545 1 year ago
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Hey, I have AS too as does my brother.....been diagnosed about 6 years not. I'm 31 yr old female. Symptoms since about 14 or 15. I have it pretty much under control for most of the time but at the moment, my achilles and heel are killing me! On TNF blocker injections which are fantastic. Feel free to mail me if you would like any info or advice. maeveclarke@hotmail.com
1clarkem 1 year ago
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Hey, I have AS too as does my brother.....been diagnosed about 6 years not. I'm 31 yr old female. Symptoms since about 14 or 15. I have it pretty much under control for most of the time but at the moment, my achilles and heel are killing me! On TNF blocker injections which are fantastic. Feel free to mail me if you would like any info or advice. maeveclarke@hotmail.com
1clarkem 1 year ago
This has been flagged as spam show
Hey, I have AS too as does my brother.....been diagnosed about 6 years not. I'm 31 yr old female. Symptoms since about 14 or 15. I have it pretty much under control for most of the time but at the moment, my achilles and heel are killing me! On TNF blocker injections which are fantastic. Feel free to mail me if you would like any info or advice. maeveclarke@hotmail.com
1clarkem 1 year ago
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@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
Bundyfun71 1 year ago
@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
Bundyfun71 1 year ago
This has been flagged as spam show
@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
Bundyfun71 1 year ago
@AS Sufferer We did indeed have the same time frames for our condition, although my neck is progressively getting worse and i now am living with pins and needles and a patch on my neck is void of any feeling! Currently on the waiting list to see a AS Specialist to help improve my condition! Many Thanks for your videos hun as its nice to know we arent alone! Take care x
Bundyfun71 1 year ago
guys i m suffering with AS. i need suggestions please if you can help me mail me on vicky2732@gmail.com
utube2732 1 year ago
guys i m suffering with A.S. i need suggestions please if you can help me mail me on vicky2732@gmail.com
utube2732 1 year ago
I'm a 39yr old woman and have been living with A.S since i was around 15yrs old, it started as sharp pains in my sacroiliac joints the Dr's just thought i had sciatica, it wasn't until starting to get a stiff neck at around the age of 24yrs that they did blood tests to discover I had the HLA - B27 gene markers and a bone density scan was preformed showing my disease, both myself, my sister and my father suffer with this disease, dad has many complications now as a result of A.S
Bundyfun71 1 year ago
@Bundyfun71 Man that sucks. It sounds like you and I have the same timeline. I started to get the first pains at 15, and my neck started acting up at about 24 also. I have largely been very lucky with the neck. It is super stiff, but I just live with it and stretch it alot. Best of luck to you and God bless.
ASsufferer 1 year ago
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kaushikack 1 year ago
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Great cure for CERVICAL/ ANKYLOSING SPONDYLITIS.
They don’t charge money (Rs.10/- , Rs 50/- your wish). They say it is power of almighty.
If any doubts, please mail me at kaushikack@gmail.com
In PUNJAB, travel to PATIALA. From there to a small town NABHA. Take to Malerkotla Road. Just travel 3 kms on this road, & one reaches a small village TINGI.
Here, there is an aged person NOOR MOHAMMED. For so many years, I have seen this person curing people of dreadly malaise known as SPONDYLITIS.
kaushikack 1 year ago
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kaushikack 1 year ago
Thank you so much. I am 28 years old and I have been diagnosed with AS 1 month ago.
It feels so good to know that somebody can understand the pain I have or had... Not being able to move in the bed, not being able to walk and without talking about those spasms...
I don't know if you experienced that but sometimes I feel people around me don't see me that sick. It makes me feel so bad.
Thanks again.
karine1282 1 year ago
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@karine1282 :hi my name is vicky ,, i m 22 years old!!! i was diagnosed with A.S. 2 years back !!! i want to chat wid you about A.S...my email id is vicky2732@gmail.com..please mail me!!!we can share our thoughts!! please i beg you!!! this pain is unbearable!!!
utube2732 1 year ago
@karine1282
utube2732 1 year ago
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Maybe I'm just lucky- diagnosed age 40 after 20 years being told psychosomatic, pull yourself together etc. I had iritis (common with a.s.) I say lucky because I found a yoga teacher who helped encourage me to do yoga (we can all do it even if paralysed neck down, it's just a question of degree). Recently, I've found that using water exercises in nearby swimming pool is brilliant- no, it' not easy- it's bloody hard- well done you for making the video!
correctyourenglish 1 year ago
Maybe I'm just lucky- diagnosed age 40 after 20 years being told psychosomatic, pull yourself together etc. I had iritis (common with a.s.) I say lucky because I found a yoga teacher who helped encourage me to do yoga (we can all do it even if paralysed neck down, it's just a question of degree). Recently, I've found that using water exercises in nearby swimming pool is brilliant- no, it' not easy- it's bloody hard- well done you for doing the video!
correctyourenglish 1 year ago
I know that docters ignore diet (because it doesnt make profits for them when youre healthy) but diet can realllly effect it. I have ulcerative colitis, and starting to develop AS like my grandfather had. I've tried a startch free diet which eliminates alot of inflammation and food sensitivites... Im trying out raw vegan cause I'm serious about avoid more auto immunity. Theres a lot of crazy raw vegans but do it at your own pace and to your own benifit.
wordey123 1 year ago
hello, i am legally blind and have suffered from inflimation in my si joints, scoliosis, severe muscle spasms & fatigue, and bulging discs, today i have been told i have this condition, im really scared, i have to take oxy contin for pain relief and i just want to know if anyone else out there has any advice or if there is any support groups out there online.
wally1207 1 year ago
@wally1207 Hello, sad to read about your problems. It's always hard to find out that You have a condition. I was too. Have you been offered TNFa-inhibitors? It's one the latest treatments for AS. I have not been offered this treatment since my problems are'nt so severe. Hang in there!
Overture1922 1 year ago
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@wally1207 Hello, sad to read about your problems. It's always hard to find out that You have a condition. I was too. Have you been offered TNFa-inhibitors? It's one the latest treatments for AS. I have not been offered this treatment since my problems are'nt so severe. Hang in there!
Overture1922 1 year ago
wow! I can't believe someone else with the same symptons as me! I am on remicade now and is helping a lot. I was tried salfasalasine, celebrex, and other things which were taken off the market cause of serious side effects. Chiro and massage therapy helps too.
carlogonzworldmixxx 1 year ago
Thank you soooo much for doing this video. The way you discribe your pain and progression is exactly what I have been experiencing over the years. I wish you all the best.