I was walking one day, and for some reason, the terrain was not perfectly level, and you know your body after couple steps it will go on auto pilot mode, so when I stepped over a hole 3 inches deep!, my entire body went ballistic!
a friend of mine thought I was badly hurt because the noise I made!
it was awful.
sometimes my spine will pinch a nerve in the right spot that I will lose balance even if I am just standing up!
Thank you for sharing your story. My husband suffers with AS and most days are hard. Its sadly easy to forget how much pain another is in when you can't see it :( he had a bad bout of iritis just like your photos. I wish you all the best. My husband takes enbrel injections from time to time but doesnt feel the sude affects are worth the risk of painfree. God bless.
Ever heard of the drug humera? Apparently this is supposed to help. But your condition really sucks, my husband has it. And I feel for you all out there with A.S.
I know how you are feeling I was diagnosed with Uveitis two years ago, in both eyes, my eyes have been inflamed ever since and have had eyedrops and steroid injections in my eyes every 3 months have cataracts in both eyes from the steroid shots and drops and steroid pills, two weeks ago I finally got cataract surgery in my right eye, and I have AS also not quite that serious yet couple of bad knee and hip pains thou. But I guess its only going to get worse.
I cant sneeze or cough i try to hold it as much because the pain cant not be described also the sound of cracking makes me sick. However mine is really bad i cant walk or sit for longer than 20min without being in crazy pain.
lol same problem as me when it comes to sneezing. i said it feels like a fat guy jumping on my chest, but your description is much better. just diagnosed with AS yesterday...
@SusanaNeves7 NO , I dont try it , for me LDN is the best , I make a video talking about my experience with LDN but it is in spanish , I read a little of etoricoxib , it is a anitnflamatori , with a few side efects , be carefull it is your body , best wishes
I was treated the same exact way! I was diagnosed at the Mayo clinic in Scottsdale AZ then hospitalized within a few days. I had a few diff autoimmunes going on. Then I was discharged and told I had nothing....nothing wrong! Long story short while on my way home 2 weeks later after having a lung biopsy done in a diff state we received a packet in the mail from the Mayo clinic that they had reran some of my labs and took anotherlook at my case and have changed their mind and rediagnosed me.
This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl with a slightly un typical disease. It is what it is. arthritis-diary.blogspot.com
This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl with a slightly un typical disease. It is what it is. arthritis-diary.blogspot.com
This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl, It is what it is. arthritis-diary.blogspot.com
This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl, It is what it is. arthritis-diary.blogspot.com
I was finally diagnosed with A.S. a few months ago after suffering for the past 19 years! After hundreds of test and back surgery, I finally found a rheumatologist who solved the mystery with the simple blood test for HLB-27 disease factor! I told my other Dr's about my diagnosis and the hlb-27 test and only 1 of the 4 had even heard of the test! It's ridiculous that I know more about this disease than 3 very well-educated, highly esteemed Dr's!!! Hang in there, you aren't alone!
@goofygirly2010 Hello! I'm Hari, My dad is suffering from this for the past 18 years.... We are living in India. We don't get any good advice for the treatment of this. We have been said that there is no treatment for this. After seeing all these things I got a positive sign towards the treatment of this. I like to know more on it. Can you please suggest me, where can I found treatment or advice in India. It will be a better help for us.
@harinshankar There`s not a cure, but you can have more peacefull days with some rules everyday. Maybe if you investigate more videos on you tube with the name of the disease, the more you see, or read, the more you learn. The best advice is not to give of being happy, and share good feelings with the loved ones. Never give up to do sometinhg everyday, and get yourself some rest being out of stress!! the rest will be better results!
I am wondering if you have tried the low carbohydrate diet as an adjunct to medication, and if so has it been effecive in your pain relief?. There is a lot of mixed feelings about this but many people says it has been effective in treating the pain.
Also you can try embril. It has made my life liveable again, and again the government pays for it. Its absolutely free!! All you have to do really is take a TB test cause if you have TB it can kick it into hyperdrive, but other than that there are no negative effects. Its not a cure the closest thing to a cure is just to stretch every day but you know as well as I do if you have a flair up you are not doing Shite that day or days. But you take the shot and the next morning you are amazing!!
are you on any kind of medication I use humera and have been for a while now, Its a revelation not least because of the fatigue. The fatigue has subsided a lot although I get alot of pain in my hands and feet now.
If its any help to make you feel better, I'm getting all the symptoms that your talking about...honestly, I'm so scared I cant sleep... I'm off to the UV eye clinic Monday so I'm hoping they will do tests and xrays.Man the way I feel,its like that song"if it wasn't for bad luck I would not have any luck at all!"....sheet!!
i have ankylosing spondylitis. i know what you mean about the "yay" factor of getting the diagnosis. its not that we WANT to have AS, its just the simple fact that we finally know what the hell is causing all this pain and there is some hope that you can work towards feeling better.(unfortunatly i am bad off, almost wheel chair bound at age 30).
I had x-rays of the sacroiliac joints and neck. A look at my GP visits, going back to when I was 16 and had regular complaints of stiffness, lower back pain and pain in right leg, building a case history of problems. Blood tests, visits to Rheumatologists, Physiotherapists all with an understanding of the condition. It took some time but I was finally diagnosed with AS.
thanks for sharing this, you are awesome and your story sounds so familiar. I had a late diagnosis and had all the things you described. I am now on Remicade which has settled down the Iritis. I almost lost my left eye due to several misdiagnosis and ended up having to get a sterioid shot in my eyeball! By far the scariest thing to happen to me but not as bad as the pain, I can sneeze now after my spine has fused and I think because of the remicade.
thank you for sharing i have AS i was diagnosed 12 years ago after being told it might be just strained muscles then after a few months of still being in pain i was told it might be sliped discs finnaly after not being able to move i was sent for a MRI scan which showed up that i have AS i have been getting facit joint injections for the pain i just turned 35 years old and sometimes feel i cant go on but my 3 beautiful kids and beautiful wife keep me going
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
omg! i cried when i watched this becasue i've never met anyone who understands my problems!!! I can't sneeze either, it's like my chest wont expand enough to let the air in, and it hurts! I've had pain for seven years (started at 14), and every doctor I went to told me I was normal and it was just growing pains. They told me it was in my head; my mom didnt believe me until she was tested for something and realized she had the hla b27 marker too....then she claimed she had the pain too.
omg! i cried when i watched this becasue i've never met anyone who understands my problems!!! I can't sneeze either, it's like my chest wont expand enough to let the air in, and it hurts! I've had pain for seven years (started at 14), and every doctor I went to told me I was normal and it was just growing pains. They told me it was in my head; my mom didnt believe me until she was tested for something and realized she had the hla b27 marker too....then she claimed she had the pain too.
omg! i cried when i watched this becasue i've never met anyone who understands my problems!!! I can't sneeze either, it's like my chest wont expand enough to let the air in, and it hurts! I've had pain for seven years (started at 14), and every doctor I went to told me I was normal and it was just growing pains. They told me it was in my head; my mom didnt believe me until she was tested for something and realized she had the hla b27 marker too....then she claimed she had the pain too.
OMG yeah sneezing and Hiccups were torture. I have AS and I know EXACTLY what you are talking about. I braced myself against a wall or floor (on my stomach) and that would take a bit of the edge of the pain. Like a cup of water from the ocean.
You made me smile as soon as you mentioned the sneezing. I,m a fellow AS sufferer and when im about to sneeze, I pinch my nose, hold my breath and brace myself . It feels like my ribs are snapping.
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We have a specific antigen that is misbehaving and attacking our body. Once they find a way to switch it off, only then will there be a cure. It doesn't sound all so hard does it? So what is stopping the research into this area.
When I went to see a GP about this disease because my Dad has it and recommended me to go get tested. The doc told me I had week back muscles. I was furious cause I knew better. So I know all about the frustration.
You need to do this infront of an audience of AS sufferers. Funny cause its all true. Stand up AS! I have AS, and I know its not bloody funny. Low starch seems to keep when sever inflimation flare ups.
funny funny Q? im a 25 year old female from australia 6 years now with this pain that is AS i am after some gental love making positions as i really want to enjoy my life still any ideas ?????
Look sweetheart we have very different bits that do very different things...
I can only hope that your sexual partner is caring and supportive of your plight,
my advice, literately ride through the pain and discomfort , dont let it stop you trying new things and do as much as you can to get those endorphins flowing.
I'm female 42yrs old+it took "them" 15yrs of agony. to diag advanced AS.i felt desp,couldnt breath . 156 attacks of irritis/scleritis+ blind in my leftt eye.I was diag as HLAB27 pos ,I've been diag with MS,Rheum arthritis.,.lol. was.on up to 47 tabs a day +had to give up job as a mental health worker ago,couldnt cope.its cost me my marriage,house,job,friends,they fucked off
I'm on anti-Tnf ..brutal drug+Oxycontin now,. ironically diag with Bi-Polar ,STRESS,Dr's are idiots, love Lynne
been in pain had a MRI of the spine it did reveal a retrolithesis of L5 so thought the cases of my pain he sent me for a scan says i have bilateral sacrolitis with a high up take of the tracer sent to rheumatoligist in april Im in pain with my back Im a bus driver so i cant get out of the seat The question i want to ask is can anything else cause bilateral sacrolitis ?I have aches and pains further up my back on my left heel knee and my lateral thigh is numb he said this is miragal parthestica
Thank you so much for posting this. I have been going through everything you explain for yrs since I was a kid realy. only just been diagnosed and iritis is one of the things that has led to this, like you my left eye was the same. In the process of just reading and watching everything I can on it as the doctors are very vague. I am on oxycodone for the pain and prednosone for inflamatioen and cortosone ointment for my eye. Need to go back as oxycodone is doing nothing. take care hey
Hi! I just wanted to let you know that it was your videos that made me record and post my own story about having AS. I just wanted to say thank you from the bottom of my heart for showing me what people need to hear. Your story and mine are similar and I invite you to watch my 2 if you desire. I hope you are doing well and not in too much pain. Thanks again and have a great day my friend!
Man, do i identify with your story. I started with years of back pain, misdiagnosed - or, rather, it just puzzled the doctors. And that means years of not sleeping well. Then the swollen feet that the docs thought was me somehow bruising the soles. Then came the first bout of iritis that the doc said was pink eye! I knew it wasn't pink eye, but it permanently damaged that eye as I was taking antibiotic drops. HLA-B27 pos, dx w/ AS ... starting Remicade next week.
You funny fucker, listening to you made me LOL which really hurt cause I am having a bout and my ribs are killing me. And yes I question myself all the time (if i am weak) No I have AS and it fucking hurts but no body wants to here about it so usually I have to keep it all to myself, thanks it great to vent!!
Thanks for the video. After years of suffering with back pain, being misdiagnosed by doctors, chiropractors, I finally was diagnosed with AS a couple of years ago. After starting the Remicade treatment, my life has changed. I know how it feels to not be able to sneeze. I used to just yell to get relief. The pain was unbearable. Good to speak with others who are going thru this.
In the later stages a sneeze feels like getting hit by a basball bat in the chest. sometimes you hear cracking noises as the calcium breaks along your sternum and rib cage. Your not alone and you learn not to sneeze as times goes on.
I have had AS since I was in high school... About the sneezing! Holy crap it hurts! Half the time it begins, and then the back tightens. OUCH! I know what you are talkin about! And then you have to sneeze again becuase the first time you couldn't!!!!!
Hi there, my Dad has A.S. and I have had similar experiences when it comes to dealing with GP's. They have now lost or bodged up 4 blood tests for this condition so I am now having the blood test done elsewhere. Can you telll me if when your first blood test came back negative, it was actually the HLA B27 test or another blood test, as your mis diagnosis has only made me have even less faith in the medical profession than I already had.
Hilarious and all true. Ive gone through the same, and I am also exited that my pains have a cause and they are not just in my head. Thanks brother. AS 13+ years, just diagnosed.
2) its a 50/50 chance in weither they'd get the HLA-B27 gene that seems to be associated with it but some people have AS with out the gene and haveing said gene dosent mean you'd get it theres ussually a trigger event. I inherated the gene from my father it only became active after i broke a bone
hello dear friend ,i am also sufring from as for last 10 year .dear in my mind also come this question. that when we get married is there any problem occuring during sex with hi wife. i am also of 25 year .thanx
omg! im not alone. i so understand about the sneezing, i recently was diagnose wit AS after 10yrs suffering from mild to severe pain,aches n stiffness. thank u for the info.
I am right there with you. It was a little nerve racking the lack of sensitivity to others pain. And the difficulty sneezing. Now I am possibly dealing with other autoimmune dz but I push for testing after it took nearly 10 yrs, a loss of range of motion in my hip I got test for hlab27 gene. If you have get you family to get tested my dad has it too but not my bro. I just pray for God to heal us if he chooses to.
I have had AS for 21 years and I know all about the pain but now I'm on an anti TNF drug called Etanecept...it blocks the signals that tell ur body to attack itself. Now I don't need anti inflamatories and I can sneeze easy. Ask ur G.P for it...it was approved by NICE about a year ago and is available free on the NHS
I'm starting to wonder if I have AS...I have had iritis now for 11 months and can't seem to get rid of it. I can't sleep anymore because my back hurts so much that I can't find a comfortable position. A rheumotologist told me it probably isn't AS because I only had back pain every few days but now it's everyday. I also have the pain in my shoulder blades. After watching this video and reading the comments, I think I'm going to find another rheumotologist and try to get a dx.
Sneezing's a bitch lol. I have had this debilitating desease for 11 years, eyeritis is nasty feels like you have been stabbed in the eye by a sharp needle, wouldn't wish this on my worst enemy, and the intense burning shooting sensation in my hips and spine just gets you down. Glad you finally got your diagnosis ;0)
Man I know exactly what you mean. It took me five years to get a diagnosis. Many trips to the er in excruciating pain. GP's are assholes. I was told that I just wanted pain medicine by one. Finally got into a rheumatoligist. My SI joints are almost completely fused. Embrel, vicodin, and Motrin are the only things that really work for me. Some stretching and strengthening as well. Keep the faith.
it nice to know others have to brace for a sneeze. I recently was told i have AS for the last five or so years it has been torture to sneeze. i have sneezed and fallen to the floor in pain and because of the damage in my back. When i have sneeze i pinched nerves and just fallen do to things stopped working right. Recent xrays show fused pelvic bone joint, tilted and a twisted spine. and spinal fusions.
I sneeze, and then yell FUCK!, then laugh hideously before the second sneeze happens.There is always pain, the question is how much and where. The hip pain really sucks. It feels as if a sniper has shot you in the hip with an explosive round.
Thank you. It's good to hear from other people like yourselves with this condition. Wish everyone understood what it's like to live in constant pain. Sick of hearing "get more exercise, you can't be in pain all the time". Well you can be! Keep posting the videos. Thank you Good Ship Denton.
I know the feeling of the pain, I am 49 and was just diagnose and I also have a 90 degree curve of my upper spine so I am bent over along with the other pains in the back hips legs ect. it's almost like a slow rigamortis.
Thanks for posting this. I feel exactly the same, I am off work at the moment with incredible pain in my sacroiliac joints, I can barely move a few feet without being paralysed by the intense pain and am hobbeling around the house like a 100 year old man.
I think most people do not understand what intense pain is like unless they have had it themselves. I am 23, strong, eat well and was climbing and going to the gym a month ago.
I feel the same, ive had it for 4 yrs now and with each year a new pain develops somewhere else, my latest is my frigging eyes burning like i have a hair in there.
I have the same thing with sneezing, god it's sore. But if you put your finger across just under your nose and push hard into that curve where your nose joins your lip when you're feeling the sneeze coming and it will die away, every time. Try that, its a life saver for me.
Not yet diagnosed either but I too have difficulty sneezing as well as swollen ankles, swollen toes, never knowing what it's like to sleep through the night (ever), difficulty walking, sciatica, lung infections, always bloodshot eyes, sore chest, often difficulty breathing, cancer, brain tumour, low immunity & broken bones taking months to heal. Was exposed in Cda to agents orange, purple & white over 7 year period. Curious about YOUR exposures to spraying - and FLUORIDE level in your water.
I have A.S. I like your yourself wondered if everyone was in pain like this? You look normal on the outside but you are all screwed up on the inside. I was in a depression for along time thinking I must be crazy. Thank god I found out what it was! Your young but feel like your a hundred. I am forty seven and getting worse. But there is hope as long as you keep moving!! So my doctor says.
Fuck doctors. They don't know half the shit they think they do. You can be diagnosed once by one doctor because all the symptoms fit, then the next "doctor" says your fine because he can't detect anything, even though you're still in pain.
I can totally relate to your story! It took 10 yrs. to get dx and by then the damage was done. Remicade has helped a lot, but still have to take pain meds. Recently I was prescribed marinol and I've been able to do without as many pain pills. I hope you are getting some relief from the pain! Peace&Light
In regards to the psychological of AS Im just saying how it is for me. But its interesting to hear similar stories.
A body in pain is going to have a major effect on a persons wellbeing and perspective on the world around them.
A lot of things seem very backwards for me in relation to the stress they induce, as if the bigger problems simply dont bother me I have found that stress for me is a major player in the amount of pain Im in.
I was so happy when I received a letter in the mail saying I had AS...because I had suffered for 15 years with pain, fevers and just feeling like crap. I went from from doc to doc and they all blew me off . So I've had this diagnosis for 7 years....I'm still in pain...and rheumatologists suck! You would think they coulds help me with pain better than they do!
I was diagnosed with AS when i was 18 or 19. Thats when it was at its worst, severe pain in my lower back, the slightest movement was excruciating. I started taking anti-inflammatory drugs once i was diagnosed. Im a lot better now.. the severe pain has been replaced by occasional dull pains and some stiffness in the hip region. I got uveitis in my left eye a week ago, it sort of hit me hard because i had almost blocked out the fact that i had a serious illness but now im dealing with it again
I was diagnosed this past June and have been on Humaria (now increased to once a wk). It helps, but I still have pain on bad days. Actually in bed now with pain. My primary pain stems from right SI joint (which pops mult. times a day), under my right shoulder blade and in my chest (which also pops). Popping actually helps relief some of the pain. Does anyone else have these pains?
Denton, so sorry to hear about your unbelievable pain to sneeze! I'm not there yet & pray I won't get there
I was diagnosed about a year ago, mi SI joints also pops several times a day, recently my shoulders and neck started to pop too (also my knees, definitely popping reliefs the pain). I have lost movement on my hips and not longer can I press my legs against mi chest. I was prescribed malival and painkillers but I dont take them because they make me sleepy and dont help with the pain. Doing yoga its the only thing that has helped me to deal with it. I hate to be me I´m only 24 years old
21 Amaranta, It breaks my heart to see how many young people are dealing with this disease. I'm 34 and have always been considered active & athletic. It is so difficult to be on the side lines now. I'm doing alot of yoga now which seems to help me too. I just started Lyica twice a day and methatrexate last week. I immediately noticed a difference with the Lyica! It seems to be helping me with the inflammation in back and shoulders. I hope this is the right cocktail mix w/ humaria. Will c
I too have AS.I have lived with chronic pain since I was about 20.I am now 28 and know that this is why.I started towards my diagnosis when I went to my ophthamologist because my right eye was red, inflamed, and so sensitive to light that I had to be in a dark room with my eyes closed and I still had burning pain.He ordered blood tests and found i was HLA-B27+ and told me that not everyone with that will develop AS.But I did my research and I meet the NY criteria.I empathize with you.
Hi! My friend is the same age 28 and suffering since -98 this desease. His spine and ribs are stiffd, also both hips joints. No pain anymore...Same blood test was positive. There is no treatment for that as I understood. Is it really true, that it only can get worse? Please share your own experiance about possible treatments. I care about my friend very much. Thanks.
Many people, including myself, have had good results with anti TNF alpha drugs ( Humira, Enbrel). In some cases the disease has been stopped completely. Everything else is just tinkering round the edges.
This could be me. I understand you, esp the mental/emotional stuff. I see myself as cold and cynical. I was lucky, my doc spotted AS but then I had 14 years of humiliating negative test results before a positive diagnosis by a rheumatologist. Sneezing - my great fear, its like my chest expoldes so I try to tilt my head back and open my mouth to let air out quickly and end up giving a huge bark that attracts lots of attention. I have AS,psoriatic arthritis and..hayfever! Summer is interesting.
I was walking one day, and for some reason, the terrain was not perfectly level, and you know your body after couple steps it will go on auto pilot mode, so when I stepped over a hole 3 inches deep!, my entire body went ballistic!
a friend of mine thought I was badly hurt because the noise I made!
it was awful.
sometimes my spine will pinch a nerve in the right spot that I will lose balance even if I am just standing up!
this condition/decease sucks!
206ernesto 1 day ago
My goodness!
I am not alone!!! lol
I had many test done over 10 years and it was until Dr. Aoyama in Washington Estate USA that diagnosed me with the AS.
He is the best, At least now I know what is the reason of all this pain that sometimes makes me feel like today is my last day on this planet!
206ernesto 1 day ago
Thank you for sharing your story. My husband suffers with AS and most days are hard. Its sadly easy to forget how much pain another is in when you can't see it :( he had a bad bout of iritis just like your photos. I wish you all the best. My husband takes enbrel injections from time to time but doesnt feel the sude affects are worth the risk of painfree. God bless.
Gurlinthewurld 1 week ago
Ever heard of the drug humera? Apparently this is supposed to help. But your condition really sucks, my husband has it. And I feel for you all out there with A.S.
82luvie 1 week ago
@82luvie yes, for $1200.00 per month you can get it!
206ernesto 1 day ago
hello rockcityaudio
I know how you are feeling I was diagnosed with Uveitis two years ago, in both eyes, my eyes have been inflamed ever since and have had eyedrops and steroid injections in my eyes every 3 months have cataracts in both eyes from the steroid shots and drops and steroid pills, two weeks ago I finally got cataract surgery in my right eye, and I have AS also not quite that serious yet couple of bad knee and hip pains thou. But I guess its only going to get worse.
jbub77 4 months ago
I cant sneeze or cough i try to hold it as much because the pain cant not be described also the sound of cracking makes me sick. However mine is really bad i cant walk or sit for longer than 20min without being in crazy pain.
ganonforce 5 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
ajonz9213 6 months ago
I can't hear you :( !
goofygirly2010 7 months ago
lol same problem as me when it comes to sneezing. i said it feels like a fat guy jumping on my chest, but your description is much better. just diagnosed with AS yesterday...
crookedfingaz 8 months ago
"LOW DOSE NALTREXONE " I will try this drug this month !! please send me information !!!! best wishes !!!
urusol 6 months ago
@urusol i am now with Etoricoxib (turox, 60mg), and for now it results! Have you tried this one?
SusanaNeves7 1 month ago
@SusanaNeves7 NO , I dont try it , for me LDN is the best , I make a video talking about my experience with LDN but it is in spanish , I read a little of etoricoxib , it is a anitnflamatori , with a few side efects , be carefull it is your body , best wishes
urusol 1 month ago
I was treated the same exact way! I was diagnosed at the Mayo clinic in Scottsdale AZ then hospitalized within a few days. I had a few diff autoimmunes going on. Then I was discharged and told I had nothing....nothing wrong! Long story short while on my way home 2 weeks later after having a lung biopsy done in a diff state we received a packet in the mail from the Mayo clinic that they had reran some of my labs and took anotherlook at my case and have changed their mind and rediagnosed me.
BrokenRRT 9 months ago
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This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl with a slightly un typical disease. It is what it is. arthritis-diary.blogspot.com
Rayraydiary 10 months ago
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This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl with a slightly un typical disease. It is what it is. arthritis-diary.blogspot.com
Rayraydiary 10 months ago
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This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl, It is what it is. arthritis-diary.blogspot.com
Rayraydiary 10 months ago
This has been flagged as spam show
This video made me laugh...made me cry and most importantly helped my bf understand! I’ve recently started a diary about having this arthritis. I’m not a writer, I’m just a typical 20 year old girl, It is what it is. arthritis-diary.blogspot.com
Rayraydiary 10 months ago
I was finally diagnosed with A.S. a few months ago after suffering for the past 19 years! After hundreds of test and back surgery, I finally found a rheumatologist who solved the mystery with the simple blood test for HLB-27 disease factor! I told my other Dr's about my diagnosis and the hlb-27 test and only 1 of the 4 had even heard of the test! It's ridiculous that I know more about this disease than 3 very well-educated, highly esteemed Dr's!!! Hang in there, you aren't alone!
goofygirly2010 11 months ago
@goofygirly2010 Hello! I'm Hari, My dad is suffering from this for the past 18 years.... We are living in India. We don't get any good advice for the treatment of this. We have been said that there is no treatment for this. After seeing all these things I got a positive sign towards the treatment of this. I like to know more on it. Can you please suggest me, where can I found treatment or advice in India. It will be a better help for us.
With thanks,
Harishankar.
harinshankar 8 months ago
@harinshankar There`s not a cure, but you can have more peacefull days with some rules everyday. Maybe if you investigate more videos on you tube with the name of the disease, the more you see, or read, the more you learn. The best advice is not to give of being happy, and share good feelings with the loved ones. Never give up to do sometinhg everyday, and get yourself some rest being out of stress!! the rest will be better results!
SusanaNeves7 1 month ago
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harinshankar 8 months ago
I am wondering if you have tried the low carbohydrate diet as an adjunct to medication, and if so has it been effecive in your pain relief?. There is a lot of mixed feelings about this but many people says it has been effective in treating the pain.
cceali 11 months ago
Also you can try embril. It has made my life liveable again, and again the government pays for it. Its absolutely free!! All you have to do really is take a TB test cause if you have TB it can kick it into hyperdrive, but other than that there are no negative effects. Its not a cure the closest thing to a cure is just to stretch every day but you know as well as I do if you have a flair up you are not doing Shite that day or days. But you take the shot and the next morning you are amazing!!
jdesign918 11 months ago
Before my diagnosis, I was actually told by a psychiatrist that I was a narcassist
tsh512 11 months ago 2
@tsh512 What a bastard!
goofygirly2010 11 months ago
@tsh512 Me too bud me too! Fuck em all!
BrokenRRT 9 months ago
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maisygirl07 11 months ago
@maisygirl07
What the fuck's an F-bomb?
GoodShipDenton 11 months ago 7
@maisygirl07 Grow the fuck up maisy
splibb 3 months ago
are you on any kind of medication I use humera and have been for a while now, Its a revelation not least because of the fatigue. The fatigue has subsided a lot although I get alot of pain in my hands and feet now.
sybaris1 11 months ago
If its any help to make you feel better, I'm getting all the symptoms that your talking about...honestly, I'm so scared I cant sleep... I'm off to the UV eye clinic Monday so I'm hoping they will do tests and xrays.Man the way I feel,its like that song"if it wasn't for bad luck I would not have any luck at all!"....sheet!!
rockcityaudio 1 year ago
i have ankylosing spondylitis. i know what you mean about the "yay" factor of getting the diagnosis. its not that we WANT to have AS, its just the simple fact that we finally know what the hell is causing all this pain and there is some hope that you can work towards feeling better.(unfortunatly i am bad off, almost wheel chair bound at age 30).
instagasm 1 year ago
Hello,thankyou for making this video,it really helped me actually.
I just found out that I may have this condition because I was diagnosed with Uveitis,
I'm very very scared but your story really made me feel that I'm not alone.
I'm going to have some tests could you please advise me what tests to ask for
I'm currently on two sets of eye drops from moorefields for the inflammation
anterior Uveitis
rockcityaudio 1 year ago
@rockcityaudio
Hi there,
I had x-rays of the sacroiliac joints and neck. A look at my GP visits, going back to when I was 16 and had regular complaints of stiffness, lower back pain and pain in right leg, building a case history of problems. Blood tests, visits to Rheumatologists, Physiotherapists all with an understanding of the condition. It took some time but I was finally diagnosed with AS.
Tom.
GoodShipDenton 1 year ago
Turn your volume up when recording, silly!! Can't hear a thing..waste of my time.
tweeters54 1 year ago
@tweeters54
Why don't you turn your volume up!
GoodShipDenton 1 year ago 14
thank u for your vid. I've just been dx today and i'm in shock as I've also got m.e, osteoporosis too.
i'm in spinal agony, mainly neck, and on 20mcg butrans patches but still in so much pain.
I'm really scared about the AK. I love alone, have no family or partner and im only 29;) hugs, bluebell x
landofhealth 1 year ago
thanks for sharing this, you are awesome and your story sounds so familiar. I had a late diagnosis and had all the things you described. I am now on Remicade which has settled down the Iritis. I almost lost my left eye due to several misdiagnosis and ended up having to get a sterioid shot in my eyeball! By far the scariest thing to happen to me but not as bad as the pain, I can sneeze now after my spine has fused and I think because of the remicade.
DLSNiiganii 1 year ago
Lean back when your gonna sneeze it helps a lot! I have as too
chickenvirus 1 year ago
thank you for sharing i have AS i was diagnosed 12 years ago after being told it might be just strained muscles then after a few months of still being in pain i was told it might be sliped discs finnaly after not being able to move i was sent for a MRI scan which showed up that i have AS i have been getting facit joint injections for the pain i just turned 35 years old and sometimes feel i cant go on but my 3 beautiful kids and beautiful wife keep me going
tobycro 1 year ago
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Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
SuperMDiz 1 year ago
This has been flagged as spam show
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
SuperMDiz 1 year ago
This has been flagged as spam show
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
SuperMDiz 1 year ago
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
SuperMDiz 1 year ago
Thanks for sharing. I'm 28yrs old. 've been having symptoms for well over a year now and I can identify with so much of what you said. I am recently self diagnosed after 18mos of GPs telling me, that my fatigue is due to a virus that will pass or diet, my back pain is from old injuries maybe or bad shoes/posture, the back pain at night is caused by my bed or pillows. When I get a flare up, I am terrified by feeling a sneeze come on. Never imagined anyone would understand that fear.
SuperMDiz 1 year ago
omg! i cried when i watched this becasue i've never met anyone who understands my problems!!! I can't sneeze either, it's like my chest wont expand enough to let the air in, and it hurts! I've had pain for seven years (started at 14), and every doctor I went to told me I was normal and it was just growing pains. They told me it was in my head; my mom didnt believe me until she was tested for something and realized she had the hla b27 marker too....then she claimed she had the pain too.
uhoh2007 1 year ago
omg! i cried when i watched this becasue i've never met anyone who understands my problems!!! I can't sneeze either, it's like my chest wont expand enough to let the air in, and it hurts! I've had pain for seven years (started at 14), and every doctor I went to told me I was normal and it was just growing pains. They told me it was in my head; my mom didnt believe me until she was tested for something and realized she had the hla b27 marker too....then she claimed she had the pain too.
uhoh2007 1 year ago
omg! i cried when i watched this becasue i've never met anyone who understands my problems!!! I can't sneeze either, it's like my chest wont expand enough to let the air in, and it hurts! I've had pain for seven years (started at 14), and every doctor I went to told me I was normal and it was just growing pains. They told me it was in my head; my mom didnt believe me until she was tested for something and realized she had the hla b27 marker too....then she claimed she had the pain too.
uhoh2007 1 year ago
see a naturapath and tell them you have AS and you will be fixed in two days like myself and its not in your head
paddy9998 1 year ago
i have HLAB-27 its not fun Q-Q''
Othello301 1 year ago
OMG yeah sneezing and Hiccups were torture. I have AS and I know EXACTLY what you are talking about. I braced myself against a wall or floor (on my stomach) and that would take a bit of the edge of the pain. Like a cup of water from the ocean.
Skycaptain220 1 year ago
You made me smile as soon as you mentioned the sneezing. I,m a fellow AS sufferer and when im about to sneeze, I pinch my nose, hold my breath and brace myself . It feels like my ribs are snapping.
kimiisfastest 1 year ago
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AmegaAzteam 1 year ago
We have a specific antigen that is misbehaving and attacking our body. Once they find a way to switch it off, only then will there be a cure. It doesn't sound all so hard does it? So what is stopping the research into this area.
veclubby 1 year ago
i think i too have as. self diagnosed. doc also agrees...blood sample gone for testing. loved your video...the humor made me feel better!
jyotikamalchd 1 year ago
When I went to see a GP about this disease because my Dad has it and recommended me to go get tested. The doc told me I had week back muscles. I was furious cause I knew better. So I know all about the frustration.
chevybogger73 1 year ago
You need to do this infront of an audience of AS sufferers. Funny cause its all true. Stand up AS! I have AS, and I know its not bloody funny. Low starch seems to keep when sever inflimation flare ups.
thefreeshow 1 year ago
funny funny Q? im a 25 year old female from australia 6 years now with this pain that is AS i am after some gental love making positions as i really want to enjoy my life still any ideas ?????
nightnurse1984 1 year ago
@nightnurse1984
Gentle love making positions
Look sweetheart we have very different bits that do very different things...
I can only hope that your sexual partner is caring and supportive of your plight,
my advice, literately ride through the pain and discomfort , dont let it stop you trying new things and do as much as you can to get those endorphins flowing.
Giggity!
GoodShipDenton 1 year ago 2
@nightnurse1984 do what is comfortable.
DLSNiiganii 1 year ago
I'm female 42yrs old+it took "them" 15yrs of agony. to diag advanced AS.i felt desp,couldnt breath . 156 attacks of irritis/scleritis+ blind in my leftt eye.I was diag as HLAB27 pos ,I've been diag with MS,Rheum arthritis.,.lol. was.on up to 47 tabs a day +had to give up job as a mental health worker ago,couldnt cope.its cost me my marriage,house,job,friends,they fucked off
I'm on anti-Tnf ..brutal drug+Oxycontin now,. ironically diag with Bi-Polar ,STRESS,Dr's are idiots, love Lynne
pixiewilson42 1 year ago
been in pain had a MRI of the spine it did reveal a retrolithesis of L5 so thought the cases of my pain he sent me for a scan says i have bilateral sacrolitis with a high up take of the tracer sent to rheumatoligist in april Im in pain with my back Im a bus driver so i cant get out of the seat The question i want to ask is can anything else cause bilateral sacrolitis ?I have aches and pains further up my back on my left heel knee and my lateral thigh is numb he said this is miragal parthestica
MrBritestarr 2 years ago
Thank you so much for posting this. I have been going through everything you explain for yrs since I was a kid realy. only just been diagnosed and iritis is one of the things that has led to this, like you my left eye was the same. In the process of just reading and watching everything I can on it as the doctors are very vague. I am on oxycodone for the pain and prednosone for inflamatioen and cortosone ointment for my eye. Need to go back as oxycodone is doing nothing. take care hey
bribiesurf8 2 years ago
my mom has this its very rare for woman and she is like a celeb to me xD
jalopotan 2 years ago
Hi! I just wanted to let you know that it was your videos that made me record and post my own story about having AS. I just wanted to say thank you from the bottom of my heart for showing me what people need to hear. Your story and mine are similar and I invite you to watch my 2 if you desire. I hope you are doing well and not in too much pain. Thanks again and have a great day my friend!
ASsufferer 2 years ago
Man, do i identify with your story. I started with years of back pain, misdiagnosed - or, rather, it just puzzled the doctors. And that means years of not sleeping well. Then the swollen feet that the docs thought was me somehow bruising the soles. Then came the first bout of iritis that the doc said was pink eye! I knew it wasn't pink eye, but it permanently damaged that eye as I was taking antibiotic drops. HLA-B27 pos, dx w/ AS ... starting Remicade next week.
Chapps 2 years ago
You funny fucker, listening to you made me LOL which really hurt cause I am having a bout and my ribs are killing me. And yes I question myself all the time (if i am weak) No I have AS and it fucking hurts but no body wants to here about it so usually I have to keep it all to myself, thanks it great to vent!!
MrsScarlette80 2 years ago
I know what you mean about no one wanting to listen to you. That makes it 10 x harder to deal with in my opinion. Take care!
ASsufferer 2 years ago
Thanks for the video. After years of suffering with back pain, being misdiagnosed by doctors, chiropractors, I finally was diagnosed with AS a couple of years ago. After starting the Remicade treatment, my life has changed. I know how it feels to not be able to sneeze. I used to just yell to get relief. The pain was unbearable. Good to speak with others who are going thru this.
Diverbelo 2 years ago
Thank you so much for sharing this. I have AS too and it's nice that people are talking about what it's like.
metalmaiden3 2 years ago
In the later stages a sneeze feels like getting hit by a basball bat in the chest. sometimes you hear cracking noises as the calcium breaks along your sternum and rib cage. Your not alone and you learn not to sneeze as times goes on.
bharris291 2 years ago
I have had AS since I was in high school... About the sneezing! Holy crap it hurts! Half the time it begins, and then the back tightens. OUCH! I know what you are talkin about! And then you have to sneeze again becuase the first time you couldn't!!!!!
ar550n1c 2 years ago
Hi there, my Dad has A.S. and I have had similar experiences when it comes to dealing with GP's. They have now lost or bodged up 4 blood tests for this condition so I am now having the blood test done elsewhere. Can you telll me if when your first blood test came back negative, it was actually the HLA B27 test or another blood test, as your mis diagnosis has only made me have even less faith in the medical profession than I already had.
hardings930 2 years ago
well this video was posted two years a lot has developed over that time, in regards to my health and fittness.
it was the HLA B27, as well as mis read x-rays.
i deal with A.S. independently now and see my doctor only a couple of times a year.
GoodShipDenton 2 years ago
Hilarious and all true. Ive gone through the same, and I am also exited that my pains have a cause and they are not just in my head. Thanks brother. AS 13+ years, just diagnosed.
mrfuentes24 2 years ago
i have been suffering from this disease for 12 yrs. i am 27/male. and i wonder if anybody can help me with certain questions i have in my mind.
1) will i be able to father a child, after getting married.?
2) if yes then how much at risk are my children at contracting the disease.?
3) what are the medications and precautions u guys are taking?
4) i am taking indomethacin, did anybody develop any side effects to the medicine.?
5) is there anyway to ARREST THE PROGRESS OF THIS DISEASE?
sumantobagchi 2 years ago
1. I don't see why you can't father a child before getting married...
2. I don't honestly know please consult your Doctor.
3. I take Delofenic 75mg twice daily. as well as take exercise. lots of core strength exercise and yoga breathing exercises
4. I have never taken indomethacin.
5. so far i don't know if their is, thier are so many different ideas out their...
GoodShipDenton 2 years ago
@GoodShipDenton Doesn't Methotrexate (a mild chemotherapy pill) try to stop your flare and put you in remission?
Wivanunu 1 year ago
2) its a 50/50 chance in weither they'd get the HLA-B27 gene that seems to be associated with it but some people have AS with out the gene and haveing said gene dosent mean you'd get it theres ussually a trigger event. I inherated the gene from my father it only became active after i broke a bone
frodoissnazzy 2 years ago
hello dear friend ,i am also sufring from as for last 10 year .dear in my mind also come this question. that when we get married is there any problem occuring during sex with hi wife. i am also of 25 year .thanx
khange22 2 years ago
omg! im not alone. i so understand about the sneezing, i recently was diagnose wit AS after 10yrs suffering from mild to severe pain,aches n stiffness. thank u for the info.
LAHOPEFUL 2 years ago
I am right there with you. It was a little nerve racking the lack of sensitivity to others pain. And the difficulty sneezing. Now I am possibly dealing with other autoimmune dz but I push for testing after it took nearly 10 yrs, a loss of range of motion in my hip I got test for hlab27 gene. If you have get you family to get tested my dad has it too but not my bro. I just pray for God to heal us if he chooses to.
agente429sbd 2 years ago
I have had AS for 21 years and I know all about the pain but now I'm on an anti TNF drug called Etanecept...it blocks the signals that tell ur body to attack itself. Now I don't need anti inflamatories and I can sneeze easy. Ask ur G.P for it...it was approved by NICE about a year ago and is available free on the NHS
stiffmeister0802 2 years ago
It's not only the day to day pain that wears one down, it's the anticipation of pain that gets the headlines some days.
tee1315 2 years ago
I'm starting to wonder if I have AS...I have had iritis now for 11 months and can't seem to get rid of it. I can't sleep anymore because my back hurts so much that I can't find a comfortable position. A rheumotologist told me it probably isn't AS because I only had back pain every few days but now it's everyday. I also have the pain in my shoulder blades. After watching this video and reading the comments, I think I'm going to find another rheumotologist and try to get a dx.
soccergirlt 2 years ago
You should demand gene testing. I just got a positive diagnosis two weeks ago. The iritis is very painful. Good luck.
QuaintTaint 2 years ago
Sneezing's a bitch lol. I have had this debilitating desease for 11 years, eyeritis is nasty feels like you have been stabbed in the eye by a sharp needle, wouldn't wish this on my worst enemy, and the intense burning shooting sensation in my hips and spine just gets you down. Glad you finally got your diagnosis ;0)
leighxmac74 2 years ago
I have my 'false' blood tests right here in front of me. these doctors dont know half as much as what they claim to.
From extensive research i have also arrived at a self diagnosis of AS... Its funny i even did the same thing, telling people i have it.
I just have to find a doctor who has a brain so i can get a damn proper diagnosis and get on with it.
*********
dont take the chemicals the docs peddle!
ask mother nature for ginger and mary jane!
*********
eternalease 2 years ago
Man I know exactly what you mean. It took me five years to get a diagnosis. Many trips to the er in excruciating pain. GP's are assholes. I was told that I just wanted pain medicine by one. Finally got into a rheumatoligist. My SI joints are almost completely fused. Embrel, vicodin, and Motrin are the only things that really work for me. Some stretching and strengthening as well. Keep the faith.
asitshouldbe 2 years ago
it nice to know others have to brace for a sneeze. I recently was told i have AS for the last five or so years it has been torture to sneeze. i have sneezed and fallen to the floor in pain and because of the damage in my back. When i have sneeze i pinched nerves and just fallen do to things stopped working right. Recent xrays show fused pelvic bone joint, tilted and a twisted spine. and spinal fusions.
mikefire6999 2 years ago
I sneeze, and then yell FUCK!, then laugh hideously before the second sneeze happens.There is always pain, the question is how much and where. The hip pain really sucks. It feels as if a sniper has shot you in the hip with an explosive round.
peterbadgely 2 years ago
Thank you. It's good to hear from other people like yourselves with this condition. Wish everyone understood what it's like to live in constant pain. Sick of hearing "get more exercise, you can't be in pain all the time". Well you can be! Keep posting the videos. Thank you Good Ship Denton.
MsRosie36 2 years ago
I know the feeling of the pain, I am 49 and was just diagnose and I also have a 90 degree curve of my upper spine so I am bent over along with the other pains in the back hips legs ect. it's almost like a slow rigamortis.
namtak47 2 years ago
Thanks for posting this. I feel exactly the same, I am off work at the moment with incredible pain in my sacroiliac joints, I can barely move a few feet without being paralysed by the intense pain and am hobbeling around the house like a 100 year old man.
I think most people do not understand what intense pain is like unless they have had it themselves. I am 23, strong, eat well and was climbing and going to the gym a month ago.
Feel like I am being swallowed by a black hole.
afkololol 2 years ago
I feel the same, ive had it for 4 yrs now and with each year a new pain develops somewhere else, my latest is my frigging eyes burning like i have a hair in there.
kingeric1978 2 years ago
I have the same thing with sneezing, god it's sore. But if you put your finger across just under your nose and push hard into that curve where your nose joins your lip when you're feeling the sneeze coming and it will die away, every time. Try that, its a life saver for me.
getbentforever2 2 years ago
great video
modoudrammeh 2 years ago
I just just take regular aspirin for mine. Am afraid it will wreck my stomach one day.
tracy10UT 2 years ago
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tracy10UT 2 years ago
I have A.S. I like your yourself wondered if everyone was in pain like this? You look normal on the outside but you are all screwed up on the inside. I was in a depression for along time thinking I must be crazy. Thank god I found out what it was! Your young but feel like your a hundred. I am forty seven and getting worse. But there is hope as long as you keep moving!! So my doctor says.
bruteman850 2 years ago
Fuck doctors. They don't know half the shit they think they do. You can be diagnosed once by one doctor because all the symptoms fit, then the next "doctor" says your fine because he can't detect anything, even though you're still in pain.
Most are quacks.
RawMeatRocks 2 years ago
I can totally relate to your story! It took 10 yrs. to get dx and by then the damage was done. Remicade has helped a lot, but still have to take pain meds. Recently I was prescribed marinol and I've been able to do without as many pain pills. I hope you are getting some relief from the pain! Peace&Light
TieDyeCreek 3 years ago
In regards to the psychological of AS Im just saying how it is for me. But its interesting to hear similar stories.
A body in pain is going to have a major effect on a persons wellbeing and perspective on the world around them.
A lot of things seem very backwards for me in relation to the stress they induce, as if the bigger problems simply dont bother me I have found that stress for me is a major player in the amount of pain Im in.
thanks for your comment.
GoodShipDenton 3 years ago
Just got kicked out of the army cuz they diagnosed me with AS.
Prev doctors just threw muscle relaxers and PT at me.
I thank you very much for explaining the psychological aspects of AS.
Always thought I was just depressed or plain crazy.
Always had a really hard time giving a fuck about anything.
In constant pain, short temper, high stress, and generally very hard to please.
Very few things make me happy or excited or feel good.
A lot of things don't get me down or piss me off like they should
justahustla17 3 years ago
I was so happy when I received a letter in the mail saying I had AS...because I had suffered for 15 years with pain, fevers and just feeling like crap. I went from from doc to doc and they all blew me off . So I've had this diagnosis for 7 years....I'm still in pain...and rheumatologists suck! You would think they coulds help me with pain better than they do!
Wivanunu 3 years ago
I was diagnosed with AS when i was 18 or 19. Thats when it was at its worst, severe pain in my lower back, the slightest movement was excruciating. I started taking anti-inflammatory drugs once i was diagnosed. Im a lot better now.. the severe pain has been replaced by occasional dull pains and some stiffness in the hip region. I got uveitis in my left eye a week ago, it sort of hit me hard because i had almost blocked out the fact that i had a serious illness but now im dealing with it again
Sirwastealot 3 years ago
What are the odds? Out of all the stills 'youtube' could of selected randomly it picked the eye!
Funny thing is that particular images is only in the video for scarcely a second.
GoodShipDenton 3 years ago
I was diagnosed this past June and have been on Humaria (now increased to once a wk). It helps, but I still have pain on bad days. Actually in bed now with pain. My primary pain stems from right SI joint (which pops mult. times a day), under my right shoulder blade and in my chest (which also pops). Popping actually helps relief some of the pain. Does anyone else have these pains?
Denton, so sorry to hear about your unbelievable pain to sneeze! I'm not there yet & pray I won't get there
jenniferintexas 3 years ago
I was diagnosed about a year ago, mi SI joints also pops several times a day, recently my shoulders and neck started to pop too (also my knees, definitely popping reliefs the pain). I have lost movement on my hips and not longer can I press my legs against mi chest. I was prescribed malival and painkillers but I dont take them because they make me sleepy and dont help with the pain. Doing yoga its the only thing that has helped me to deal with it. I hate to be me I´m only 24 years old
21Amaranta 3 years ago
21 Amaranta, It breaks my heart to see how many young people are dealing with this disease. I'm 34 and have always been considered active & athletic. It is so difficult to be on the side lines now. I'm doing alot of yoga now which seems to help me too. I just started Lyica twice a day and methatrexate last week. I immediately noticed a difference with the Lyica! It seems to be helping me with the inflammation in back and shoulders. I hope this is the right cocktail mix w/ humaria. Will c
jenniferintexas 3 years ago
Hi Denton,
I too have AS.I have lived with chronic pain since I was about 20.I am now 28 and know that this is why.I started towards my diagnosis when I went to my ophthamologist because my right eye was red, inflamed, and so sensitive to light that I had to be in a dark room with my eyes closed and I still had burning pain.He ordered blood tests and found i was HLA-B27+ and told me that not everyone with that will develop AS.But I did my research and I meet the NY criteria.I empathize with you.
nd4spd1980 3 years ago
Hi! My friend is the same age 28 and suffering since -98 this desease. His spine and ribs are stiffd, also both hips joints. No pain anymore...Same blood test was positive. There is no treatment for that as I understood. Is it really true, that it only can get worse? Please share your own experiance about possible treatments. I care about my friend very much. Thanks.
tanyarim 3 years ago
tanyarim
Many people, including myself, have had good results with anti TNF alpha drugs ( Humira, Enbrel). In some cases the disease has been stopped completely. Everything else is just tinkering round the edges.
up43 3 years ago
I am sadden to know that you and others go through this plain and suffering in life.
do you have this pain everyday?
johnmk777 3 years ago
Wow... I thank you for that video Denton.
It made me cry as I laid tossing in bed watching it.
Like, wow... Finally someone KNOWS WHAT I AM TALKING ABOUT!
Please, keep in touch.
AstroPygmy 3 years ago
This could be me. I understand you, esp the mental/emotional stuff. I see myself as cold and cynical. I was lucky, my doc spotted AS but then I had 14 years of humiliating negative test results before a positive diagnosis by a rheumatologist. Sneezing - my great fear, its like my chest expoldes so I try to tilt my head back and open my mouth to let air out quickly and end up giving a huge bark that attracts lots of attention. I have AS,psoriatic arthritis and..hayfever! Summer is interesting.
baconsoda 3 years ago