guys try JIM HUMBLE'S MMS.. GOOGLE IT...DO YOUR RESEARCH .. I WAS ALSO DIAGNOSED WITH AS 6 YEARS BACK.. SOMEHOW I CAME ACCROSS THIS BLOG ABOUT A GUY WHO CLAIMED TO HAVE CURED AS WITH JIM HUMBLE'S MMS.. I'M USING IT FOR THE LAST TWO WEEKS AND AM ALREADY WITNESSING A MAJOR RELIEF FROM THE PAIN..
Forgot to make an interesting comment. Before this decease started, i also had a HUGE back spasm one morning. I woke up with this horrible pain and my lower back was very stiffed. I actually called out of work two days in a row. My life has been misery ever since that day :(
Thank God for my Rheumatologist, it took me several years, over a decade and hundreds of tests, scans, xrays and mri's for someone to finally run the hlb-27 disease factor test!!! I know more about A.S. than several Dr's, it's ridiculous! I have had to use the Internet and the library to figure out what is wrong with me, myself, not the Dr's!!! Don't give up until you get the answer and find a Dr. that treats you as an individual, not a statistic!!!
Thanks for sharing this! I wish there were a simple blood test to diagnose this, but the HLA-B27, C Reactive Protein, and RA factor tests are not definitive diagnostic tests, unfortunately. I am HLA-B27 negative & went undiagnosed for over 5 years (complete fusion of SI joints & hips, lower spine, & neck) and FINALLY my new rhuematologist explained that there is no simple blood test- it takes x-rays, symptom history & blood work & that's why it takes so long for a diagnosis. :( Good luck 2 u!
Dun drink cold water. I have AS too. Its in the joints where the leg and hips connect. Excercise is the best treatment. Im 17 this year. And i hate it when the pain flares up. Good posture must be maintain at all times.
My advise to people new to AS would be; If you can, limit yourself to over the counter pain meds. (The stronger stuff will just make you worse) Take part in social activities and be as active as you can.. Give yourself more time to do chores but do them your self. Exercise when your able (also on bad days) and if you can, use Embrel or something similar (wish they had that 25 years ago).
Been using Embrel the last 2 years and it really makes a difference.
I share your pain bro, I didn't know how long I was sucking it up. But I actually managed to make it through infantry school with this, shin splints and bronchitis and I sucked it up for 3 months through infantry school while getting fucked with the whole time. my entire military career was impacted because I unknowingly suffered from the same symptoms but it was always a "muscle spasm" and I got muscle relaxers. I used to get screamed at by My platoon sergeant all the time for trying to see doc
You would think doctors would at least be aware about this. I diagnosed MYSELF with this 4 years ago with Dr.Google. Yet, it took 2 worthless hip surgeries and sooo many specialists and doctors to finally get the diagnosis at 25 years old when I had this since I was 19.
@jennadrums Yes I had the same reaction at 40 years of age when I finally got the DX. I had been living with it for 25 years. I am just thankful that I didn't get caught up in the revolving doors of doctors and surgeries. I was mad at first but then I read how incredibly common it is to be overlooked. Its funny, I had a friend and his mother who had this and when my Doc said, lets test you for AS I said, Oh I know I dont have that, they would have caught it by now....I was wrong! :) Thanks!
I take Enbrell, and so far no problem. I hurt for about 5 years. My wife would have to help me out of bed every hour or so at night due the the EXTREME Pain!! I am only 25 years old. after 2 years they found out what was wrong with me. Being a young man I think the doctors thought i was after drugs, I DONT WANT DRUGS, I want to know whats wrong. Sleeping in a bed is the worst.
Thank-you so much for sharing. I never heard of AS until just recently. My 10 year old daughter was just diagnosed with this. Her symptoms started when she was 8. She is a very hard worker and very smart, I want her to be a fighter and not let this illness stop her from reaching her dreams. What can we for her today to make her future as good as it can be? Would you have done anything different? Thanks again.
@TheRickyNLisa If you want her to be a fighter, let her learn Martial Arts. I started with it when I was 14 and shortly thereafter was when my pain began. I thought it was something I did or the lack of exercise.....whatever. The philosophies I got to learn and study because of my interest in those ast was what helped me cope with this all the time. watching the movie Rocky a lot helps too! God bless you and your kids!
Thank-you so much for sharing. I never heard of AS until just recently. My 10 year old daughter was just diagnosed with this. Her symptoms started when she was 8. She is a very hard worker and very smart, I want her to be a fighter and not let this illness stop her from reaching her dreams. What can we for her today to make her future as good as it can be? Would you have done anything different? Thanks again.
@TheRickyNLisa I think it was better for me that I did not know until just a few years ago. I think it would have really messed me up. I have seen it with a close friend. I really think that have the chance to put your ideas in her head that it is not the end of it all. it will suck at times and there will be times when she will feel great. At 10, I cant think of how a little brain would handle it but I would think she will not be able to understand what it means. Keep her fighting spirit up!
@TheRickyNLisa I agree, the key thing is to keep her moving, help her along and dont stop doing activities unless she says she cannot do it. this can be good for you as well. Make it a point each day to do (with her) stretching exercises, exercise with her, play and have her live, make it fun! keep track of her and if she needs to talk about being different and cannot do things that other kids cant, be there for her. I would suggest a physical therapist consultation to know how to help it along.
@obstruccion No its not man. I stopped my pain meds and after a long time, I felt better. If you are only 18, you have a long time to start the meds. I would wait as long as possible. I used to do a lot of physical things. I dont know if you can, but you should do what ever you can, that is the best medicine in my opinion. Meds are second to it all.
I lost my eye sight in my left eye this summer , my vision in my left eye is like looking in to a glass of muddy water it is starting to become better I think it was stress related that brought it on. I wonder how stress is related to AS
if you do have AS get on enbrel ASAP it is A TNF blocker and will swow the AS down and sleep on your back with no pillow for as long as you can. The truth is your bones are fusing together it will be up to you as to how they will freeze most that give in or were not aware of what was happening and in denial will have their bones frozen in a forward curve this is why you must relaxe flat on your back often and streatch often
@jamesbrownjnr Dam 10 hours a week? I know you are listening to the theme from "Rocky" on those ear buds! Your gonna eat lighting and crap thunder...................and you know why? Cuz mickey loves ya, thats why!
I have something I would like to share with others that have AS my spine is fused in a forward curve and A Doctor that knows AS and how it will affect you convinced me to sleep flat on my back with no pillow and slowly bring my legs to rest flat.
I have something I would like to share with others that have AS my spine is fused in a forward curve and A Doctor that knows AS and how it will affect you convinced me to sleep flat on my back with no pillow and slowly bring my legs to rest flat.
@usualsuspectakakev I can see where that might help. I cant sleep with a pillow that is even 4 inches thick. I hate hotels! but I am just happy I can sleep so I dont complain much.
You said it, man. The level of pain that we have learned to deal with on a day to day basis would literally take people off of their feet. I have forgotten what it is like to be without pain. I don't think it hit home with a lot of my family until they saw me walking with a cane. I hate using it, but it helps take the stress off of my back.
Another day a friend of mine said "Dude, it always looks like you're strutting when you walk."
I said, "That's a limp, man. My back is killing me."
@BlackCatBonz Well, at least you limp with style! no seriously I know what you mean. I used to get the same thing about my back brace. I just dont care if anyone see's it. I need it and they can rub my back if they dont like it.
24y/o recently diagnosed. I'm scared about it. its not so bad right now, it just hurts when I sleep every night. But i am worried about its progression.
@kielatk86 Try not to be scared. I cant tell you how, because I am still fighting the fear of the unknown, but dont dwell on it. Live you life and the AS will do what it does. Remember the absolute best thing for you is to move and stay active as possible. Dont stop doing things, but be aware that bad injuries like sports types can really plaque you later in life. I have told a few people about a book called "healing back pain" by a Dr. John Sarno. Its about the mind.body connection. Great book!
Im very sorry for your story. I stil want to courage to try to cure AS totally. It must be your goal. This was my goal and I did it. I dont claim that it would be easy but it's worthwile. If someone is interested I can give personal advices. Overall, you need to boost your health in all aspects of life. I have tried everything and in a relatively short time I overcome this desease.
with the increase of temps now im in a great deal of pain, i go back to the doctor soon for more pain meds so SOME relief is in my future. but it doesnt last for about an hour or so but hey ill take it!! lol people at work look at me funny when i hunch over trying to escape some of the pain but they have NO IDEA of what we all live with everyday. i had a guy tell me the other day that his back was hurting, i laughed at him and he looked at me funny but i left it at that
i cant sleep easy at night...my upper body...chest feels as if it is getting real tight....my doc has told me to get the HLA marker test done, it has not come yet but the provisional diagnosis is as. i wonder if chest tightness and clamping up and dizziness while sleeping are also part of the complex of symptoms. right now i couldnt sleep ...felt dizzy lying down ...so woke up to google the disease and found your video.
@jyotikamalchd It might be, the dam disease can effect all kinds of things. I have pain in my chest too and it worries me, but there is a type of arthritis that effects the center of the chest, more exactly the cartilage where the ribs join. I think I have a case of that since my heart has been checked a few times and its ok, but I get bad pain in the let side of my breast bone. I hate it! Thanks for your reply and God bless you!
@ASsufferer@ASsufferer thanks chief. got my test reports. hla b27 positive. all x rays normal. showing cervical spondylitis tendency. for now am kind of keeping fingers crossed that i dont have AS as i am scared of that. exercising as often as i can. every 30 minutes i get up and start exercising. walk as much as i can. humans were not designed to live the artificial lives we do today. someday we will adapt but right now is too soon and we havent. hope you are doing fine. take care.
@ASsufferer and hey a natural anti inflammatory in india is turmeric powder. i drink a teaspoon of it in warm milk twice a day. it has lessened my pain. in india turmeric has been used in food for thousands of years.
i can relate so much to your story, as an AS sufferer myself. one flare up inpeticular i remember it was raining and the best way to describe the way i felt is having two large (and i mean large!) needle shoved into my heels and having a feeling that i had red hot lava being pumped through these needles and it felt like this from my armpits down. i dont normally cry with this but this time i did and it felt like that for about 4 hours. no fun at all
@catman63879 Man that is horrible! I have just started to have bad heel and foot pain. I dont know how to deal with it though. I just keep going and try to put it in perspective. That is to say that I will hurt no matter if I am laying down, sitting down, work getting some dam work done. At least when I stay very busy I dont have time to dwell on my pain so much. I used to feel a new pain and start to worry about it, but now I try to look at it as all part of the "package" if you will. Thanks!
thanks for the post dude... ive have AS also... its really hard to have AS. im only 23 yrs old.. still got a long run to battle with this... thank you so much for the vid. it really helps me...
ive found my AS trough x-way..
im taking Methotrexate and steroids to control my AS
@alteisen22 Your welcome man! it makes my day to think that in my suffering, I have found a way to help others. It makes me feel like I am not suffering for nothing. I still feel like Im alone sometimes when it hurts, but to know that others can use my story is a real help. Thanks again bro!
You say the blood test will be the diagnostic tool, however this is not always positive for everyone. My clear diagnosis came with an MRI which showed the fusion in my lower back.( And a doc that knows what AS is, always helps. )
@cecilyprice Well its a sticky situation because its true that there is no real indicator for AS. It is a diagnosis that comes from your symptoms and your genes. However there are a small percentage of people without the genes and they have AS. I often wonder if I really have it, since its not definitive. I then realize that I am spending too much thought on it and it will dominate my thoughts. OUr brains are half the problem when it comes to pain. Read "Healing back Pain" by Dr. john Sarnos.
@cecilyprice ............He is a bis self-absorbed, but its a good read from a psychology point of view. We have muscles that respond to stress and they are in the neck, back, and bowels. Ever gotten the "bubble guts" right before a big event or something? Same thing. It is hard to control even when you know its coming, but I had a lot of luck by telling myself I have to keep going no matter what.
Recently I had a severe reaction to the oxycodone I was on which also led to constipation and bowel clots and heamerrhiods (sp) I have had no relief with ibuprofen. Have just heard about LDN and that this can help with AS. I am very sceptical of using further medications that can have severe side effects and have heard LDN doesnt have these. Do you have any experience of this? Or even heard of LDN? low dose naltrexone. thanks
@bribiesurf8 I have heard of it but I dont know what it is. I have problems with the meds too and I had to stop my Vicodin because it was causing side effects. Now Im in alot of pain. I want to look into this stuff if is good.
Your back spasms sounds very familiar. I have AS too and it was difficult to find a doc who could correctly diagnose it. If you had a complete temporary remission from AS after starting thyroid replacement that's exactly what I experienced. Methotrexate has worked wonders and Simponi is supposed to work extremely well for AS. Exercise helps a great deal. Urinary problems were the worst.
I have gotten a remission from using ibuprofen but I am still very stiff. I stretch alot and take a muscle relaxer. It does seem like the Ibuprofen is working well though but I dont want to take it forever. BTW, What urinary problems come with this lovely AS? I have had some but I dont know if they are related. Let me know plz! :)
Iritis Pain: Get one of those masks for sinus and keep it in the freezer. Get one that has the natural herbs--they scent helps to 'calm' It DOES help! Also, my eye doc told me about SYSTANE eye drops. They are expensive--but they do ease the pain a bit. During a flare-up I have an aromatherapy bear that I heat in the microwave. He smells good, he's got a heavy butt and it feels good under my chin. The scent helps to calm.
I know the struggle to 'live'. I go to this creative group. There are 18 stairs. The first time I went I looked up that stairwell--defeated. Well, I make it up. There is a handrail and I need a forearm crutch. He has a wood chair with a chairpad for me. And yes..I'm down for 2-3 days or more after..but I go. There were days I had to cancel because I couldn't get up those steps. Tomorrow is a play. An hr drive..I'm concerned. I'm taking vicodin and hoping for the best.
Thats the way to be man, you just have to take it day by day and keep fighting in your mind. You might get help from a trick I found to ease long trips in the car, get a heating pad and then go to radio shack or best buy and pick up a cheap power inverter. You can run your heating pad in the car and it is really helpful to me when I have to drive far. I used to have to drive for a living and trust me it works!
I 'm Roy and wanted to make a suggestion that might help you sleep. I had pain between my shoulder blades and could only lay down for two to three hrs. I now have a hospital bed and its better than any pill I take. The bed changed my life. Hope it works for you.
I have been extremely lucky with the bed issue. I still can sleep in a normal bed but I need to have a pillow between my knees and cant sleep on my back or stomach too long. I also cant stay in bed for longer than 6 to 7 hours without lots of pain.
thanks for the video mate, i have had the pain for five years and it was only diagnosed 2months ago that i have AS.i know how u feel trust me, listening to your video brings me some kind of confort, thanks for the vieo and good luck for the futur.
Arthritis sufferers are grateful to the medical profession for the advances that have been made thus far. However, even the best treatments fall far short of being a real cure. In the long run, sufferers can find their greatest comfort in embracing God's promises of a new world.# (Isaiah 33:24; Revelation 21:3, 4) In that world 'the lame one will leap up as a stag does.' (Isaiah 35:6) Arthritis and all the other diseases afflicting mankind will be gone forever!
Arthritis sufferers are grateful to the medical profession for the advances that have been made thus far. However, even the best treatments fall far short of being a real cure. In the long run, sufferers can find their greatest comfort in embracing God's promises of a new world.# (Isaiah 33:24; Revelation 21:3, 4) In that world 'the lame one will leap up as a stag does.' (Isaiah 35:6) Arthritis and all the other diseases afflicting mankind will be gone forever!
Amen brother. I cant wait and God gives me more strength than I can explain. I dont want to rant on religion in my videos, but God is the best medicine on the planet.
Man that sucks. I dont have the eye problem so badly but it hits me once in a while and it is horrible. Its almost worst than a back spasm. I can only hold my eye and wait.
I have tested positive for the HLA-B27 gene and was diagnosed AS 2 years ago. It's hard for me because Im in highschool. Constant interaction with classmates and teachers... Up untill last year, I kept AS a secret, and as a consequence, teachers often thought I was a slacker. Nobody can understand the pain unless they have it. It's so frustrating to describe and really tell others how it feels. I have gotten my 6th remicade shot 4 months ago and my AS has receded significantly.
It must be hard to have it so bad in high school. I had alot of pain when I was in high school also but it was not debilitating. I thought was accident prone or something, since I always had pain in my back ankles and feet. I have not tried remicade or anything that strong yet but there will come a time when I will Im sure. Right now its muscle relaxers and Ibuprofen every day and vicodin when I have severe pain. Thanks for your comment and keep strong!!
I am so sorry that you have this disease. But do yourself a favor and do your homework on this and be familiar to symptoms and what helps others. Not everything that helps another will help you, but you can get some ideas and find what helps you. Don't keep it a secret as it is not your fault. Keep your appointments and your head held high!
dont u think all who have as here, its better to have some kind of cancer or some kind disease that can make at least u die? i prefer that kind of disease if i can choose. why? because, u go to doctor, doctor cannot cure u, than u die, end of the problem, u feel pain for once, but it end your life, so it worth it. doctor can cure u, thats even better.
but ours? doctor cannot cure u, u will not die, u will feel the pain for the rest of your life, like in hell, over and over and over again :(
Yeah its true, read my other comment on the other video if you like, I wrote something there. I can only say to be strong and realize that alot of AS's grip on us is the fear and control it has on our MINDS. When I used to feel a flare up coming on, I would tense up and begin to dread what I was in store for. Now however, I just say "well theres nothing I can do about it if it happens and it wont stop me from getting things done!" It took a long time for it to sink in, but it WORKS!!
haha... act almost everyday i check my inbox, whether someone replying what i post.
btw im from indonesia, and to treat this ill, i already go to mount elizabeth at singapore, its good, but as u can see, our as cannot be cured. but. now im currently have my treatment in semarang, indonesia. its professor. claim that he can cure As. he say, his method is 10 years newer than any doctor in the world. even former patient from us, mayo clinic. admit it. ha ha. but i dont know man
my dad at first doesnt believe that i am in such pain, seeing me like a lazy boy. but he doesnt know that's all the best i tried, driving and everything. i dont want people look at me like a weird person or something like that. so yeah i always force my self to the limit. but the result that i got, is the pain getting worse each time the pain come. so now, i dont know anymore what to do. i lose my job. so i counting my parent, but i dont like it
i fighting as for 11 years ago, but its only been diagnosed for as 9 years ago. so many doctor dont realize that i have as 11 years ago.
now my pain is getting worse, it attack almost all my joint, shoulders, rib cage, neck throat, knees, toe, tail bone, my vertebrate, around kidney there. my hs-crp result is 389.
i cannot sleep, hard to swallow, hard to breath, at first humira is helpful, now it doesnt have any effect on me, now im taking remicade
This runs in my family, my dad and sister both have it and I've been experiencing lower back pain now. It's not severe pain but it hurts in certain positions and I can feel it getting worse. Since it runs in my family the doc will give me the blood test right away. My dad's back is fully seized and my sister's is getting worse. I'm pretty scared about it.
My step dad has it too but it only bothered him in his 20's and now he's fine...weird hey?
Well you might be in luck as I have seen this skip generations. My best friend's mother and younger brother have it but he does not. He does have some joint problems, but he believes them to be from old injuries. However, injury can bring on the symptoms of AS. Plus AS itself is really not "diagnosable" because it is present on some people that dont have the gene, and most people with the gene DONT have AS symptoms. I was curious how old you are??
Thank you! I feel for you if you work in a mine! OUCH! I had physical jobs my whole life also, and I think they have kept me going rather than letting the disease get me. What do you think about that?
I've had it and the spinal deformity is the very worst because although the pain will eventually wane the deformity is irreversible. I'm fifty five and the only other people I see like me around town are at least 80. I'll never make 70.
i no god steped in but i think i didnt want him to iam so so tired of hurting my whole spine is just about fused now and ive had people tell me when it fuses no more pain yeah right thanks 4 listening my body is so tired theres always pain just hang in there every 1 there gotta be better days ahead lets hope GodBless all of you!!!!!
i've had my A.S. for like 16 years now i went from doctors telling me its all in my head to iam a drug head well with all the meds ive taken in my life now iam down to the hard stuff now all the pain pills and you no theres still so many days i ask god to take me away from all this suffering ive been at that point where i wanted to kill my self so many times its sick i did try it once though but the bullet well it miss fired are at least thats what i want to belive
Any dickhead or doctor who says "oh, it's just inflammation, deal with it", I say, blow their nuts off with a .44 magnum (and let them live), then tell them the same fucking thing. Just deal with it, it can't be *that* bad.
Well luckily they were not quite that cold hearted about it, but there is a stigma attached to saying your in pain with no visible symptoms. They think you just want pain meds. Thanks to all the junkies!!!
I was misdiagnosed with everything under the sun, passed off as a pill seeker and basically dismissed. Until I saw an episode of mystery diagnosis! That gave me the info I needed to be validated. I think it must be less severe in women. But , it's still not pleasant. I hate flares, I can feel it coming on..always seems to ruin plans and keep me down. So far I only have fusion in my fingers. YES, no one gets it! Thank u soo much for this video!
Thanks again for the reply and your kind words. I am very happy that these videos have been useful and were received well. I wasnt sure how it would work out! Thanks again and I hope your doing well.
I just wanted to let you know how much i sympathize with your pain!! I was diagnosed with this condition 1 yr ago and the pain is indescribable sometimes. And you are right, people have attitudes like just get over it! I am going to the center for joint and muscoskeletal diseases in NYC for help in dealing with this horrible disease. I dk where you live but i hear they are one of the best around for this type of thing. Good luck to you and God Bless. Cindy
guys try JIM HUMBLE'S MMS.. GOOGLE IT...DO YOUR RESEARCH .. I WAS ALSO DIAGNOSED WITH AS 6 YEARS BACK.. SOMEHOW I CAME ACCROSS THIS BLOG ABOUT A GUY WHO CLAIMED TO HAVE CURED AS WITH JIM HUMBLE'S MMS.. I'M USING IT FOR THE LAST TWO WEEKS AND AM ALREADY WITNESSING A MAJOR RELIEF FROM THE PAIN..
kiranadhikari8 2 months ago
i would like to invite you to check out a new site that i set up to network people with AS and to share wisdom, treatments and encouragement!
Please come check out the website! im hoping to make a large network and bring us together to understand this disease!
check out my profile for a link to the site
as help within .webs .com
Andrew J
please do not confuse with spam! :/
ajonz9213 6 months ago
Forgot to make an interesting comment. Before this decease started, i also had a HUGE back spasm one morning. I woke up with this horrible pain and my lower back was very stiffed. I actually called out of work two days in a row. My life has been misery ever since that day :(
musiclover3928 7 months ago
Keep your chin up grasshopper, you're not alone. God is with us all :)
musiclover3928 7 months ago
i don't have the gene, and i have AS, sometimes is not so easy to find out...
maradoria 8 months ago
i know the pain.i suffered it too
trebor8nat 10 months ago
Thank God for my Rheumatologist, it took me several years, over a decade and hundreds of tests, scans, xrays and mri's for someone to finally run the hlb-27 disease factor test!!! I know more about A.S. than several Dr's, it's ridiculous! I have had to use the Internet and the library to figure out what is wrong with me, myself, not the Dr's!!! Don't give up until you get the answer and find a Dr. that treats you as an individual, not a statistic!!!
goofygirly2010 11 months ago
@goofygirly2010 I had to diagnose myself as well :/
brmccu01 8 months ago
Thanks for sharing this! I wish there were a simple blood test to diagnose this, but the HLA-B27, C Reactive Protein, and RA factor tests are not definitive diagnostic tests, unfortunately. I am HLA-B27 negative & went undiagnosed for over 5 years (complete fusion of SI joints & hips, lower spine, & neck) and FINALLY my new rhuematologist explained that there is no simple blood test- it takes x-rays, symptom history & blood work & that's why it takes so long for a diagnosis. :( Good luck 2 u!
ehcapakori 11 months ago
Dun drink cold water. I have AS too. Its in the joints where the leg and hips connect. Excercise is the best treatment. Im 17 this year. And i hate it when the pain flares up. Good posture must be maintain at all times.
Magician556 11 months ago
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Steellearning 1 year ago
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Steellearning 1 year ago
My advise to people new to AS would be; If you can, limit yourself to over the counter pain meds. (The stronger stuff will just make you worse) Take part in social activities and be as active as you can.. Give yourself more time to do chores but do them your self. Exercise when your able (also on bad days) and if you can, use Embrel or something similar (wish they had that 25 years ago).
Been using Embrel the last 2 years and it really makes a difference.
Steellearning 1 year ago
I share your pain bro, I didn't know how long I was sucking it up. But I actually managed to make it through infantry school with this, shin splints and bronchitis and I sucked it up for 3 months through infantry school while getting fucked with the whole time. my entire military career was impacted because I unknowingly suffered from the same symptoms but it was always a "muscle spasm" and I got muscle relaxers. I used to get screamed at by My platoon sergeant all the time for trying to see doc
ILuv2troll 1 year ago
You would think doctors would at least be aware about this. I diagnosed MYSELF with this 4 years ago with Dr.Google. Yet, it took 2 worthless hip surgeries and sooo many specialists and doctors to finally get the diagnosis at 25 years old when I had this since I was 19.
jennadrums 1 year ago
@jennadrums Yes I had the same reaction at 40 years of age when I finally got the DX. I had been living with it for 25 years. I am just thankful that I didn't get caught up in the revolving doors of doctors and surgeries. I was mad at first but then I read how incredibly common it is to be overlooked. Its funny, I had a friend and his mother who had this and when my Doc said, lets test you for AS I said, Oh I know I dont have that, they would have caught it by now....I was wrong! :) Thanks!
ASsufferer 1 year ago
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@jennadrums I had to diagnose myself as well :/
brmccu01 8 months ago
I take Enbrell, and so far no problem. I hurt for about 5 years. My wife would have to help me out of bed every hour or so at night due the the EXTREME Pain!! I am only 25 years old. after 2 years they found out what was wrong with me. Being a young man I think the doctors thought i was after drugs, I DONT WANT DRUGS, I want to know whats wrong. Sleeping in a bed is the worst.
gregdubroca 1 year ago
Thank-you so much for sharing. I never heard of AS until just recently. My 10 year old daughter was just diagnosed with this. Her symptoms started when she was 8. She is a very hard worker and very smart, I want her to be a fighter and not let this illness stop her from reaching her dreams. What can we for her today to make her future as good as it can be? Would you have done anything different? Thanks again.
TheRickyNLisa 1 year ago
@TheRickyNLisa If you want her to be a fighter, let her learn Martial Arts. I started with it when I was 14 and shortly thereafter was when my pain began. I thought it was something I did or the lack of exercise.....whatever. The philosophies I got to learn and study because of my interest in those ast was what helped me cope with this all the time. watching the movie Rocky a lot helps too! God bless you and your kids!
ASsufferer 1 year ago
Thank-you so much for sharing. I never heard of AS until just recently. My 10 year old daughter was just diagnosed with this. Her symptoms started when she was 8. She is a very hard worker and very smart, I want her to be a fighter and not let this illness stop her from reaching her dreams. What can we for her today to make her future as good as it can be? Would you have done anything different? Thanks again.
TheRickyNLisa 1 year ago
@TheRickyNLisa I think it was better for me that I did not know until just a few years ago. I think it would have really messed me up. I have seen it with a close friend. I really think that have the chance to put your ideas in her head that it is not the end of it all. it will suck at times and there will be times when she will feel great. At 10, I cant think of how a little brain would handle it but I would think she will not be able to understand what it means. Keep her fighting spirit up!
ASsufferer 1 year ago
@TheRickyNLisa I agree, the key thing is to keep her moving, help her along and dont stop doing activities unless she says she cannot do it. this can be good for you as well. Make it a point each day to do (with her) stretching exercises, exercise with her, play and have her live, make it fun! keep track of her and if she needs to talk about being different and cannot do things that other kids cant, be there for her. I would suggest a physical therapist consultation to know how to help it along.
ajonz9213 6 months ago
Is it healthy to take meds daily for Ankylosing Spondylitis ??
Teddymonster11 1 year ago
im only 18 it started 2 years ago and its driving me insane, i stoped taking meds such a stupid decision
obstruccion 1 year ago
@obstruccion No its not man. I stopped my pain meds and after a long time, I felt better. If you are only 18, you have a long time to start the meds. I would wait as long as possible. I used to do a lot of physical things. I dont know if you can, but you should do what ever you can, that is the best medicine in my opinion. Meds are second to it all.
ASsufferer 1 year ago
I lost my eye sight in my left eye this summer , my vision in my left eye is like looking in to a glass of muddy water it is starting to become better I think it was stress related that brought it on. I wonder how stress is related to AS
usualsuspectakakev 1 year ago
if you do have AS get on enbrel ASAP it is A TNF blocker and will swow the AS down and sleep on your back with no pillow for as long as you can. The truth is your bones are fusing together it will be up to you as to how they will freeze most that give in or were not aware of what was happening and in denial will have their bones frozen in a forward curve this is why you must relaxe flat on your back often and streatch often
usualsuspectakakev 1 year ago
I cant drink the last bit of soda out of a can.I cant look up to the sky,but I still work out 10 hours a week!
jamesbrownjnr 1 year ago
@jamesbrownjnr Dam 10 hours a week? I know you are listening to the theme from "Rocky" on those ear buds! Your gonna eat lighting and crap thunder...................and you know why? Cuz mickey loves ya, thats why!
ASsufferer 1 year ago
I have something I would like to share with others that have AS my spine is fused in a forward curve and A Doctor that knows AS and how it will affect you convinced me to sleep flat on my back with no pillow and slowly bring my legs to rest flat.
usualsuspectakakev 1 year ago
I have something I would like to share with others that have AS my spine is fused in a forward curve and A Doctor that knows AS and how it will affect you convinced me to sleep flat on my back with no pillow and slowly bring my legs to rest flat.
usualsuspectakakev 1 year ago
@usualsuspectakakev I can see where that might help. I cant sleep with a pillow that is even 4 inches thick. I hate hotels! but I am just happy I can sleep so I dont complain much.
ASsufferer 1 year ago
You said it, man. The level of pain that we have learned to deal with on a day to day basis would literally take people off of their feet. I have forgotten what it is like to be without pain. I don't think it hit home with a lot of my family until they saw me walking with a cane. I hate using it, but it helps take the stress off of my back.
Another day a friend of mine said "Dude, it always looks like you're strutting when you walk."
I said, "That's a limp, man. My back is killing me."
BlackCatBonz 1 year ago
@BlackCatBonz Well, at least you limp with style! no seriously I know what you mean. I used to get the same thing about my back brace. I just dont care if anyone see's it. I need it and they can rub my back if they dont like it.
ASsufferer 1 year ago
24y/o recently diagnosed. I'm scared about it. its not so bad right now, it just hurts when I sleep every night. But i am worried about its progression.
kielatk86 1 year ago
@kielatk86 Try not to be scared. I cant tell you how, because I am still fighting the fear of the unknown, but dont dwell on it. Live you life and the AS will do what it does. Remember the absolute best thing for you is to move and stay active as possible. Dont stop doing things, but be aware that bad injuries like sports types can really plaque you later in life. I have told a few people about a book called "healing back pain" by a Dr. John Sarno. Its about the mind.body connection. Great book!
ASsufferer 1 year ago
Im very sorry for your story. I stil want to courage to try to cure AS totally. It must be your goal. This was my goal and I did it. I dont claim that it would be easy but it's worthwile. If someone is interested I can give personal advices. Overall, you need to boost your health in all aspects of life. I have tried everything and in a relatively short time I overcome this desease.
Economist999 1 year ago
with the increase of temps now im in a great deal of pain, i go back to the doctor soon for more pain meds so SOME relief is in my future. but it doesnt last for about an hour or so but hey ill take it!! lol people at work look at me funny when i hunch over trying to escape some of the pain but they have NO IDEA of what we all live with everyday. i had a guy tell me the other day that his back was hurting, i laughed at him and he looked at me funny but i left it at that
catman63879 1 year ago
i cant sleep easy at night...my upper body...chest feels as if it is getting real tight....my doc has told me to get the HLA marker test done, it has not come yet but the provisional diagnosis is as. i wonder if chest tightness and clamping up and dizziness while sleeping are also part of the complex of symptoms. right now i couldnt sleep ...felt dizzy lying down ...so woke up to google the disease and found your video.
jyotikamalchd 1 year ago
@jyotikamalchd It might be, the dam disease can effect all kinds of things. I have pain in my chest too and it worries me, but there is a type of arthritis that effects the center of the chest, more exactly the cartilage where the ribs join. I think I have a case of that since my heart has been checked a few times and its ok, but I get bad pain in the let side of my breast bone. I hate it! Thanks for your reply and God bless you!
ASsufferer 1 year ago
@ASsufferer @ASsufferer thanks chief. got my test reports. hla b27 positive. all x rays normal. showing cervical spondylitis tendency. for now am kind of keeping fingers crossed that i dont have AS as i am scared of that. exercising as often as i can. every 30 minutes i get up and start exercising. walk as much as i can. humans were not designed to live the artificial lives we do today. someday we will adapt but right now is too soon and we havent. hope you are doing fine. take care.
jyotikamalchd 1 year ago
@ASsufferer and hey a natural anti inflammatory in india is turmeric powder. i drink a teaspoon of it in warm milk twice a day. it has lessened my pain. in india turmeric has been used in food for thousands of years.
jyotikamalchd 1 year ago
i can relate so much to your story, as an AS sufferer myself. one flare up inpeticular i remember it was raining and the best way to describe the way i felt is having two large (and i mean large!) needle shoved into my heels and having a feeling that i had red hot lava being pumped through these needles and it felt like this from my armpits down. i dont normally cry with this but this time i did and it felt like that for about 4 hours. no fun at all
catman63879 1 year ago
@catman63879 Man that is horrible! I have just started to have bad heel and foot pain. I dont know how to deal with it though. I just keep going and try to put it in perspective. That is to say that I will hurt no matter if I am laying down, sitting down, work getting some dam work done. At least when I stay very busy I dont have time to dwell on my pain so much. I used to feel a new pain and start to worry about it, but now I try to look at it as all part of the "package" if you will. Thanks!
ASsufferer 1 year ago
thanks for the post dude... ive have AS also... its really hard to have AS. im only 23 yrs old.. still got a long run to battle with this... thank you so much for the vid. it really helps me...
ive found my AS trough x-way..
im taking Methotrexate and steroids to control my AS
alteisen22 1 year ago
@alteisen22 Your welcome man! it makes my day to think that in my suffering, I have found a way to help others. It makes me feel like I am not suffering for nothing. I still feel like Im alone sometimes when it hurts, but to know that others can use my story is a real help. Thanks again bro!
ASsufferer 1 year ago
You say the blood test will be the diagnostic tool, however this is not always positive for everyone. My clear diagnosis came with an MRI which showed the fusion in my lower back.( And a doc that knows what AS is, always helps. )
cecilyprice 1 year ago
@cecilyprice Well its a sticky situation because its true that there is no real indicator for AS. It is a diagnosis that comes from your symptoms and your genes. However there are a small percentage of people without the genes and they have AS. I often wonder if I really have it, since its not definitive. I then realize that I am spending too much thought on it and it will dominate my thoughts. OUr brains are half the problem when it comes to pain. Read "Healing back Pain" by Dr. john Sarnos.
ASsufferer 1 year ago
@ASsufferer Thank you for the book suggestion. Anything which will help with this pain is greatly appreciated.
cecilyprice 1 year ago
@cecilyprice ............He is a bis self-absorbed, but its a good read from a psychology point of view. We have muscles that respond to stress and they are in the neck, back, and bowels. Ever gotten the "bubble guts" right before a big event or something? Same thing. It is hard to control even when you know its coming, but I had a lot of luck by telling myself I have to keep going no matter what.
ASsufferer 1 year ago
Recently I had a severe reaction to the oxycodone I was on which also led to constipation and bowel clots and heamerrhiods (sp) I have had no relief with ibuprofen. Have just heard about LDN and that this can help with AS. I am very sceptical of using further medications that can have severe side effects and have heard LDN doesnt have these. Do you have any experience of this? Or even heard of LDN? low dose naltrexone. thanks
bribiesurf8 2 years ago
@bribiesurf8 I have heard of it but I dont know what it is. I have problems with the meds too and I had to stop my Vicodin because it was causing side effects. Now Im in alot of pain. I want to look into this stuff if is good.
ASsufferer 1 year ago
Since AS effects Joints dont Supplements help like chondroitin and glucosamine give some relief?
aerosnout 2 years ago
Your back spasms sounds very familiar. I have AS too and it was difficult to find a doc who could correctly diagnose it. If you had a complete temporary remission from AS after starting thyroid replacement that's exactly what I experienced. Methotrexate has worked wonders and Simponi is supposed to work extremely well for AS. Exercise helps a great deal. Urinary problems were the worst.
oeyesea 2 years ago
I have gotten a remission from using ibuprofen but I am still very stiff. I stretch alot and take a muscle relaxer. It does seem like the Ibuprofen is working well though but I dont want to take it forever. BTW, What urinary problems come with this lovely AS? I have had some but I dont know if they are related. Let me know plz! :)
ASsufferer 2 years ago
Iritis Pain: Get one of those masks for sinus and keep it in the freezer. Get one that has the natural herbs--they scent helps to 'calm' It DOES help! Also, my eye doc told me about SYSTANE eye drops. They are expensive--but they do ease the pain a bit. During a flare-up I have an aromatherapy bear that I heat in the microwave. He smells good, he's got a heavy butt and it feels good under my chin. The scent helps to calm.
LadyMary03 2 years ago
I am lucky with the eye problems, but who knows what is int he future! Take care and thanks!
ASsufferer 2 years ago
I know the struggle to 'live'. I go to this creative group. There are 18 stairs. The first time I went I looked up that stairwell--defeated. Well, I make it up. There is a handrail and I need a forearm crutch. He has a wood chair with a chairpad for me. And yes..I'm down for 2-3 days or more after..but I go. There were days I had to cancel because I couldn't get up those steps. Tomorrow is a play. An hr drive..I'm concerned. I'm taking vicodin and hoping for the best.
LadyMary03 2 years ago
Thats the way to be man, you just have to take it day by day and keep fighting in your mind. You might get help from a trick I found to ease long trips in the car, get a heating pad and then go to radio shack or best buy and pick up a cheap power inverter. You can run your heating pad in the car and it is really helpful to me when I have to drive far. I used to have to drive for a living and trust me it works!
ASsufferer 2 years ago
I 'm Roy and wanted to make a suggestion that might help you sleep. I had pain between my shoulder blades and could only lay down for two to three hrs. I now have a hospital bed and its better than any pill I take. The bed changed my life. Hope it works for you.
Roy
tigeroutlaw11 2 years ago
I have been extremely lucky with the bed issue. I still can sleep in a normal bed but I need to have a pillow between my knees and cant sleep on my back or stomach too long. I also cant stay in bed for longer than 6 to 7 hours without lots of pain.
ASsufferer 2 years ago
thanks for the video mate, i have had the pain for five years and it was only diagnosed 2months ago that i have AS.i know how u feel trust me, listening to your video brings me some kind of confort, thanks for the vieo and good luck for the futur.
romeoo644 2 years ago
Your very welcome my friend. It suck to have this but at least we can take comfort in the fact that we dont sufferer alone. Keep up the good fight!
ASsufferer 2 years ago
This has been flagged as spam show
Suffering Will End
Arthritis sufferers are grateful to the medical profession for the advances that have been made thus far. However, even the best treatments fall far short of being a real cure. In the long run, sufferers can find their greatest comfort in embracing God's promises of a new world.# (Isaiah 33:24; Revelation 21:3, 4) In that world 'the lame one will leap up as a stag does.' (Isaiah 35:6) Arthritis and all the other diseases afflicting mankind will be gone forever!
ealfaro1979 2 years ago
Suffering Will End
Arthritis sufferers are grateful to the medical profession for the advances that have been made thus far. However, even the best treatments fall far short of being a real cure. In the long run, sufferers can find their greatest comfort in embracing God's promises of a new world.# (Isaiah 33:24; Revelation 21:3, 4) In that world 'the lame one will leap up as a stag does.' (Isaiah 35:6) Arthritis and all the other diseases afflicting mankind will be gone forever!
ealfaro1979 2 years ago
Amen brother. I cant wait and God gives me more strength than I can explain. I dont want to rant on religion in my videos, but God is the best medicine on the planet.
ASsufferer 2 years ago
Just tested positive for HLA-B27 two weeks ago. The iritis is soooo painful.
QuaintTaint 2 years ago
Man that sucks. I dont have the eye problem so badly but it hits me once in a while and it is horrible. Its almost worst than a back spasm. I can only hold my eye and wait.
ASsufferer 2 years ago
Oh wow - I never heard anyone else express the fear of beds and chairs that I have. Thanks.
MaryAnneNagy 2 years ago
Lol! Yeah, I hate it!
ASsufferer 2 years ago
Yeah man I was diagnosed with AS at 15 and I 24 now. Dude I know the pain your feeling and going through I feel it everyday myself
and it makes it very hard to get even the simplest of tasks done. but your right just gotta say fuck you and get it done.
Good Luck Man
KCampbell0420 2 years ago
Well said my man! The FU is key. I know its why I can still do things.
ASsufferer 2 years ago
I have tested positive for the HLA-B27 gene and was diagnosed AS 2 years ago. It's hard for me because Im in highschool. Constant interaction with classmates and teachers... Up untill last year, I kept AS a secret, and as a consequence, teachers often thought I was a slacker. Nobody can understand the pain unless they have it. It's so frustrating to describe and really tell others how it feels. I have gotten my 6th remicade shot 4 months ago and my AS has receded significantly.
mike3yo 2 years ago
It must be hard to have it so bad in high school. I had alot of pain when I was in high school also but it was not debilitating. I thought was accident prone or something, since I always had pain in my back ankles and feet. I have not tried remicade or anything that strong yet but there will come a time when I will Im sure. Right now its muscle relaxers and Ibuprofen every day and vicodin when I have severe pain. Thanks for your comment and keep strong!!
ASsufferer 2 years ago
i know what your talking about, im 18 and just got the news yesterday...
Britiansgottalent001 2 years ago
I am so sorry that you have this disease. But do yourself a favor and do your homework on this and be familiar to symptoms and what helps others. Not everything that helps another will help you, but you can get some ideas and find what helps you. Don't keep it a secret as it is not your fault. Keep your appointments and your head held high!
Scarlett2671 2 years ago
This comment was for Brittansgottalent001.
Scarlett2671 2 years ago
dont u think all who have as here, its better to have some kind of cancer or some kind disease that can make at least u die? i prefer that kind of disease if i can choose. why? because, u go to doctor, doctor cannot cure u, than u die, end of the problem, u feel pain for once, but it end your life, so it worth it. doctor can cure u, thats even better.
but ours? doctor cannot cure u, u will not die, u will feel the pain for the rest of your life, like in hell, over and over and over again :(
coldrock94 2 years ago
Yeah its true, read my other comment on the other video if you like, I wrote something there. I can only say to be strong and realize that alot of AS's grip on us is the fear and control it has on our MINDS. When I used to feel a flare up coming on, I would tense up and begin to dread what I was in store for. Now however, I just say "well theres nothing I can do about it if it happens and it wont stop me from getting things done!" It took a long time for it to sink in, but it WORKS!!
ASsufferer 2 years ago
thanks...
haha... act almost everyday i check my inbox, whether someone replying what i post.
btw im from indonesia, and to treat this ill, i already go to mount elizabeth at singapore, its good, but as u can see, our as cannot be cured. but. now im currently have my treatment in semarang, indonesia. its professor. claim that he can cure As. he say, his method is 10 years newer than any doctor in the world. even former patient from us, mayo clinic. admit it. ha ha. but i dont know man
coldrock94 2 years ago
i did some experience that u have been thru too.
my dad at first doesnt believe that i am in such pain, seeing me like a lazy boy. but he doesnt know that's all the best i tried, driving and everything. i dont want people look at me like a weird person or something like that. so yeah i always force my self to the limit. but the result that i got, is the pain getting worse each time the pain come. so now, i dont know anymore what to do. i lose my job. so i counting my parent, but i dont like it
coldrock94 2 years ago
i am 26 years old, male.
i fighting as for 11 years ago, but its only been diagnosed for as 9 years ago. so many doctor dont realize that i have as 11 years ago.
now my pain is getting worse, it attack almost all my joint, shoulders, rib cage, neck throat, knees, toe, tail bone, my vertebrate, around kidney there. my hs-crp result is 389.
i cannot sleep, hard to swallow, hard to breath, at first humira is helpful, now it doesnt have any effect on me, now im taking remicade
coldrock94 2 years ago
Thanks for your message on AS. can breif more on remicade how it has affect on AS.
vkrhyd 2 years ago
This runs in my family, my dad and sister both have it and I've been experiencing lower back pain now. It's not severe pain but it hurts in certain positions and I can feel it getting worse. Since it runs in my family the doc will give me the blood test right away. My dad's back is fully seized and my sister's is getting worse. I'm pretty scared about it.
My step dad has it too but it only bothered him in his 20's and now he's fine...weird hey?
munchigator 2 years ago
Well you might be in luck as I have seen this skip generations. My best friend's mother and younger brother have it but he does not. He does have some joint problems, but he believes them to be from old injuries. However, injury can bring on the symptoms of AS. Plus AS itself is really not "diagnosable" because it is present on some people that dont have the gene, and most people with the gene DONT have AS symptoms. I was curious how old you are??
ASsufferer 2 years ago
well said....working coalminer here....with AS. Drive on friend, and don't sit still in one position for long...
shotgunwalter 2 years ago
Thank you! I feel for you if you work in a mine! OUCH! I had physical jobs my whole life also, and I think they have kept me going rather than letting the disease get me. What do you think about that?
ASsufferer 2 years ago
mild
bazzles1 2 years ago
I've had it and the spinal deformity is the very worst because although the pain will eventually wane the deformity is irreversible. I'm fifty five and the only other people I see like me around town are at least 80. I'll never make 70.
wisegeorge365 2 years ago
i no god steped in but i think i didnt want him to iam so so tired of hurting my whole spine is just about fused now and ive had people tell me when it fuses no more pain yeah right thanks 4 listening my body is so tired theres always pain just hang in there every 1 there gotta be better days ahead lets hope GodBless all of you!!!!!
Mickeym1a2n3 2 years ago
i've had my A.S. for like 16 years now i went from doctors telling me its all in my head to iam a drug head well with all the meds ive taken in my life now iam down to the hard stuff now all the pain pills and you no theres still so many days i ask god to take me away from all this suffering ive been at that point where i wanted to kill my self so many times its sick i did try it once though but the bullet well it miss fired are at least thats what i want to belive
Mickeym1a2n3 2 years ago
Thanks for sharing your story. I do not suffer from Ank Spond but wanted to hear what it was like from the perspective of somebody with it.
Its very true that people don't have sympathy for others with back pain until they have experienced it themself.
rosieposy8 2 years ago
Any dickhead or doctor who says "oh, it's just inflammation, deal with it", I say, blow their nuts off with a .44 magnum (and let them live), then tell them the same fucking thing. Just deal with it, it can't be *that* bad.
RawMeatRocks 2 years ago
Well luckily they were not quite that cold hearted about it, but there is a stigma attached to saying your in pain with no visible symptoms. They think you just want pain meds. Thanks to all the junkies!!!
ASsufferer 2 years ago
I was misdiagnosed with everything under the sun, passed off as a pill seeker and basically dismissed. Until I saw an episode of mystery diagnosis! That gave me the info I needed to be validated. I think it must be less severe in women. But , it's still not pleasant. I hate flares, I can feel it coming on..always seems to ruin plans and keep me down. So far I only have fusion in my fingers. YES, no one gets it! Thank u soo much for this video!
TheJulieShow 2 years ago
Thanks again for the reply and your kind words. I am very happy that these videos have been useful and were received well. I wasnt sure how it would work out! Thanks again and I hope your doing well.
ASsufferer 2 years ago
I just wanted to let you know how much i sympathize with your pain!! I was diagnosed with this condition 1 yr ago and the pain is indescribable sometimes. And you are right, people have attitudes like just get over it! I am going to the center for joint and muscoskeletal diseases in NYC for help in dealing with this horrible disease. I dk where you live but i hear they are one of the best around for this type of thing. Good luck to you and God Bless. Cindy
jerseydoglovers 3 years ago