m a 45 year old male and was diagnosed with this disease in 1998 and was put on gabapentin and miloxacam but wasnt doing any good so my rheumy put me on sulfasalizine and i still didnt feel any better until i was taken off pecocets that i had been on for about 2 years and it was amazing that i found out the pain pills was actually causing 99% of my pain cause i feel so much better now . i still have some pain issues when it rains or gets really cold but i guess it comes with the territory
I also have as. I have found that the worst part of as is the pain. I was wondering if u have tried marijuana for the pain. I personally have found it makes life easier during a flare up. Im lucky to live in a state who has medical cards for it. Im hoping this helps u a lil
I am 33 two years ago my eyes flared up, found out it was Uveitis, inflamation in the eyes, then went to a rhuhmatologist and she did some tests and came back positive HLA B27 and diagnosed me with AS which I have not had many symptoms yet knee pain and hip pain, my immune system has been going after my eye tissue, and I have been legally blind in my right eye and had cataract surgery in my right eye, I believe it is going to be a long road ahead.
My thoughts are with you julie. Ive had reactive arthritus for 4 yrs which has now developed into as. My rhuhmatologist is very aged and is hard work to get any answers out of and diet has never even been mentioned. Thanks again and stay strong.
I am a 42 year old woman that was diagnosed at the age of 26 after a minimum 10 years of hurting. I have been through alot because of AS... at times not even being able to walk for a few weeks at a time. Today the desease has progressed and there is some fusing with nerves caught up in calcium deposits. A walking regimine I do at least 5 days a week amd keeping my weight stable helps too. Just knowing there are others who understand what I go through everyday relieves me. Thank you for posting.
So true! I've had mine since I was 14 years old. I was told it was all in my head. Found out after years, with the right doctors, pain management, and eating right. I've lost over 50 pounds by eating right. I make a shake every morning, made a world of difference.
To everyone who has left comments, I'm sorry if I haven't answered everyone. It's been rough for quite sometime now. But I always want to offer my understanding and support. This is a terrible, misunderstood disease that clearly needs more attention from the medical community. Please make your own videos and don't stop. Youtube is a great vehicle for awareness! I'll make some new ones when I am feeling better. gentle ((hugs)) to all. J~
try to limit sugar and caffiene. I don't think there's any one answer for all A.S. sufferers. We all do what we can to get through each day. I take neaurontin, aleve, and an anti anxiety pill. I do find that having hobbies, meditating to soft music and listening to audiobooks seem to take my mind off the pain. But in the end, I'm taking a pill or on the back porch having a nice conversation with mary jane. Oh, I've had uvitis as well, not pleasant.
Hello I'm 28 years old and I have AS I have had both hips replace at age 18 and I first remember systems when I was 12 but all of my spine shoulders and ribbs are totaly fused together and I have tried most pain killers they have and I hate all. Docters never explain to me the addictions that come with pain killers and I wish I had sumthing other than pills, Cannabis helps more with less side affects but it is not legal yet so I can't take it. So any sujestions for me?
I'm so sorry to hear how the disease has affected you. It seems to be different for everyone. Pain killers are what they are. They can be your best friend or your worst enemy. I have cried many tears over the amount of medication I must take each day to function at all. Sometimes, like for the last few months, nothing seems to be consistent. I have great days, and then absolutely horrible days. I do know that diet plays a HUGE part in my degree of symptoms.
Most people who have this have many other autoimmune diseases or develop them throughout their life.
I think my AS was turned on like a switch when I was 15. I was fine one week and was very sick the next and it never went away. I was finally diagnosed at 30 years old. HLA B-27 posititve.
My mom has the marker...but she doesn't seem to have this disease.
@Wivanunu Yes, it is good to hear your acknowledgement of a person, perhaps, tendency toward being auto-immune disease prone. I am convinced that it is not purely coincidental that I have ankylosing spondylitis, have had a case of acute rheumatic fever, narcolepsy, and NMO, which is a form of demyelinating disease which closely mimics MS. These diseases all constitute auto-immune responses.
Hi, I am 42 female with AS, tried some meds not worked going onto anti tnf any feedback. Don't have fusion (yet) but pain taking over my life, struggling to stay sane withthis pain. Any info on diet please email me.
I was just diagnosed with AS yesterday. And coincidentaly I am haveing a flare up right now. I am in so much pain and struggling to go on. I have heart, lung, eye and bowel problems that I now know are caused from AS. My back is fusing and my chest hurts like hell and my shoulder feels like it is on fire. I have 3 kids and my husband and so scared right now, not just from the AS but from myself, I cant handle this pain I have had it for over 8yrs now. sorry to rant, I'm just lost.
I hear you. I am so sick of calling an ambulance or going to emergency with chest pains.
My rheumatologist has told me I need to have it checked everytime just in case it is a heart attack, but by that I may as well live in emergency. It is so hard to tell whats going on. and scary. Yes lucky us. Take carexxx
i had AS too,i m 25,and now my hip joints are badly stuck with each other,i can't stand straight,..is anyone have same problem like me?plz response me,and if anyone have artificial hip joints,plz response me too,because doctor suggest me to replacement of total hip joints,i want to know how is life goind with artifical hip joints..plz plz if any one have,plz answer me
I am 43 and had AS since I was 16,I have tried all the drugs and exercise.The drugs work to begin with then you start some more,Then more and so on.
I am on Adalimumab (Humira) now and after 27 years of PAIN finaly I am mostly pain free.
Not because of drugs but a DIET(you are what you eat).
I bought it off the internet for £20 the best money I ever spent in my life and if you are intrested its called The IBS Low Carb Diet BY Carole Sinclair
Some women go into remission when they get pregnant. Seems to be because of the Estrogen levals help with the supression of inflamatory system. Hang in there people there are some really great drugs on the horizon.
To late for me but not ofr many of you i see still moving.
@bharris291 I went full blown right after having my second child and had a massive flare up even though I had had flare ups before. I was still undiagnosed at the time. I couldn't even lift my newborn. It was a relief to finally know what it was when I was diagnosed in 1990. I had already lived with pain and inflammation for most of my life.
In the mid 80's i started a website called ASWEB . Creating this site i found thousands of people with it all over the world. Surprising thing was that women were outnumbering the men. With women the sysmptoms are lighter and often go undiagnosed in women.That is why the published numbers are wrong. Men have more severe sysmptoms then women.
Thanks for the info. I have been struggling for years, and once a professional athlete. Interesting comment about sugar, you might have something there.
Last year I pushed through the pain and rode my bicycle and did well, but then it hit me again. People don't understand what we go through.
Thanks for sharing some of your story with us. I was diagnosed a few months ago, although I had been suffering for years.
I went to see a chiropractor to try a form of back treatment called "Spinal Decompression", and after reviewing my x=rays he said that I might have AS. From there I went to a specialist and was officically diagnosed.
Now my wife, son, and I have a totally different life. But we are all adjusting the best we can. I feel less alone hearing others share their stories. Thanks.
Hi Julie. I have been recently diagnosed with A.S and am experiencing bad hip pains. I was told excersice is the best way to stay limber. My question is, Can I worsen my condition if I excersize through the pain?? Should I stop when I feel a considerable amount of discomfort? Also I know you said that it may be better to stay off lots of sugars, is there anything that you recomend I eat??
Just for safetys sake, I'm not a doctor and no one should take anything I say as a substitute for medical advice. Exercise does help, I would do what is tolerated and no more. Walking and swimming are good for A.S. sufferers. They are low impact ; less likely to cause extra pain. As for diet, there are lots of "diets" out there. but, if its not doable, you won't stick to it. So, limit sugar, try to eat as healthy as you can. Even if you just cut out one thing you know is bad; that can help.
Thank you Julie that was excellent. I do agree with it is important to help educate the public on AS. I have had the experience where others act as if I am being dramatic when I complain about my pain, or even not believe me when I say I am in pain.
It is hard to find support when you have A.S. and I think it is basically due to lack of public awareness.
Been doing pretty well on remicade; hope it works great for you! I'm with you using all approaches to fight the disease. I've had it since 15 but dx in my 30's. Was also dxed with psoriac as well just recently. Hope you are doing well! Peace&Light
I'm sorry for your pain. I understand, and I know it's tough. Sometimes an MRI can be dissapointing. We all want confirmation that we aren't crazy and for people to be supportive rather than think we're makng it up. take care, Julie
Great video Julie. I hope the Remicade works out much better for you than the Enbrel did. I have a big problem with pain caused by sugars too... it took me a long time to realize it though.
Excellent explanation of AS. I have had AS for over 30 years and 5 years ago I got psoriatic arthritis. Recently I was told 2 vertebrae have collapsed and I can feel more moving when I try to lie down. The bone density issues I have now are a cruel irony because my spine and neck are fused completely on both sides and the fusion was formed by robbing calcium from my spine. Keep doing the exercises, they are very important.
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m a 45 year old male and was diagnosed with this disease in 1998 and was put on gabapentin and miloxacam but wasnt doing any good so my rheumy put me on sulfasalizine and i still didnt feel any better until i was taken off pecocets that i had been on for about 2 years and it was amazing that i found out the pain pills was actually causing 99% of my pain cause i feel so much better now . i still have some pain issues when it rains or gets really cold but i guess it comes with the territory
catman63879 1 month ago
@catman63879 got my dates wrong it was 2008 when i was diagnosed
catman63879 1 month ago
Comment removed
catman63879 1 month ago
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I also have as. I have found that the worst part of as is the pain. I was wondering if u have tried marijuana for the pain. I personally have found it makes life easier during a flare up. Im lucky to live in a state who has medical cards for it. Im hoping this helps u a lil
530BigBen 3 months ago
I am 33 two years ago my eyes flared up, found out it was Uveitis, inflamation in the eyes, then went to a rhuhmatologist and she did some tests and came back positive HLA B27 and diagnosed me with AS which I have not had many symptoms yet knee pain and hip pain, my immune system has been going after my eye tissue, and I have been legally blind in my right eye and had cataract surgery in my right eye, I believe it is going to be a long road ahead.
jbub77 4 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 5 months ago
My thoughts are with you julie. Ive had reactive arthritus for 4 yrs which has now developed into as. My rhuhmatologist is very aged and is hard work to get any answers out of and diet has never even been mentioned. Thanks again and stay strong.
MrHodo123 9 months ago
I am a 42 year old woman that was diagnosed at the age of 26 after a minimum 10 years of hurting. I have been through alot because of AS... at times not even being able to walk for a few weeks at a time. Today the desease has progressed and there is some fusing with nerves caught up in calcium deposits. A walking regimine I do at least 5 days a week amd keeping my weight stable helps too. Just knowing there are others who understand what I go through everyday relieves me. Thank you for posting.
freakinnford 10 months ago
So true! I've had mine since I was 14 years old. I was told it was all in my head. Found out after years, with the right doctors, pain management, and eating right. I've lost over 50 pounds by eating right. I make a shake every morning, made a world of difference.
kylie3299 1 year ago
Have you or anyone else on here tried plaquenil? I was just given the drug by my immunologist....I'm afraid of the vision loss risk.
Wivanunu 1 year ago
To everyone who has left comments, I'm sorry if I haven't answered everyone. It's been rough for quite sometime now. But I always want to offer my understanding and support. This is a terrible, misunderstood disease that clearly needs more attention from the medical community. Please make your own videos and don't stop. Youtube is a great vehicle for awareness! I'll make some new ones when I am feeling better. gentle ((hugs)) to all. J~
TheJulieShow 1 year ago
I've also had my eyes flare up and went blind for three weeks I just wounderd if I'm the only one that's got AS to the fullest.
FreshNugCity 1 year ago
@FreshNugCity
try to limit sugar and caffiene. I don't think there's any one answer for all A.S. sufferers. We all do what we can to get through each day. I take neaurontin, aleve, and an anti anxiety pill. I do find that having hobbies, meditating to soft music and listening to audiobooks seem to take my mind off the pain. But in the end, I'm taking a pill or on the back porch having a nice conversation with mary jane. Oh, I've had uvitis as well, not pleasant.
TheJulieShow 1 year ago
Hello I'm 28 years old and I have AS I have had both hips replace at age 18 and I first remember systems when I was 12 but all of my spine shoulders and ribbs are totaly fused together and I have tried most pain killers they have and I hate all. Docters never explain to me the addictions that come with pain killers and I wish I had sumthing other than pills, Cannabis helps more with less side affects but it is not legal yet so I can't take it. So any sujestions for me?
FreshNugCity 1 year ago
@FreshNugCity
I'm so sorry to hear how the disease has affected you. It seems to be different for everyone. Pain killers are what they are. They can be your best friend or your worst enemy. I have cried many tears over the amount of medication I must take each day to function at all. Sometimes, like for the last few months, nothing seems to be consistent. I have great days, and then absolutely horrible days. I do know that diet plays a HUGE part in my degree of symptoms.
TheJulieShow 1 year ago
test
911paulrevere 1 year ago
Most people who have this have many other autoimmune diseases or develop them throughout their life.
I think my AS was turned on like a switch when I was 15. I was fine one week and was very sick the next and it never went away. I was finally diagnosed at 30 years old. HLA B-27 posititve.
My mom has the marker...but she doesn't seem to have this disease.
Wivanunu 1 year ago
@Wivanunu Yes, it is good to hear your acknowledgement of a person, perhaps, tendency toward being auto-immune disease prone. I am convinced that it is not purely coincidental that I have ankylosing spondylitis, have had a case of acute rheumatic fever, narcolepsy, and NMO, which is a form of demyelinating disease which closely mimics MS. These diseases all constitute auto-immune responses.
alasdulcinea 2 months ago
Hi, I am 42 female with AS, tried some meds not worked going onto anti tnf any feedback. Don't have fusion (yet) but pain taking over my life, struggling to stay sane withthis pain. Any info on diet please email me.
JaneJoskin 1 year ago
we have some great members in the facebook ankylosing spondylitis groups... come join us and let it all out
themoonhanger 1 year ago
@themoonhanger I have AS since 25 years, I am asking how to join As groups in the facebook ?? Thanks
aliahmed100 1 year ago
Comment removed
themoonhanger 1 year ago
This has been flagged as spam show
@themoonhanger I have AS since 25 years, I am asking how to join AS groups in the facebook ?? Thanks
aliahmed100 1 year ago
I was just diagnosed with AS yesterday. And coincidentaly I am haveing a flare up right now. I am in so much pain and struggling to go on. I have heart, lung, eye and bowel problems that I now know are caused from AS. My back is fusing and my chest hurts like hell and my shoulder feels like it is on fire. I have 3 kids and my husband and so scared right now, not just from the AS but from myself, I cant handle this pain I have had it for over 8yrs now. sorry to rant, I'm just lost.
bribiesurf8 2 years ago
I have AS too...I went to the Emergency with chest pains..thought it was a heart attack...but was only Choschondritis...are we lucky
Picster007 1 year ago
I hear you. I am so sick of calling an ambulance or going to emergency with chest pains.
My rheumatologist has told me I need to have it checked everytime just in case it is a heart attack, but by that I may as well live in emergency. It is so hard to tell whats going on. and scary. Yes lucky us. Take carexxx
bribiesurf8 1 year ago
i had AS too,i m 25,and now my hip joints are badly stuck with each other,i can't stand straight,..is anyone have same problem like me?plz response me,and if anyone have artificial hip joints,plz response me too,because doctor suggest me to replacement of total hip joints,i want to know how is life goind with artifical hip joints..plz plz if any one have,plz answer me
Itsdolphindoll 2 years ago
I am 43 and had AS since I was 16,I have tried all the drugs and exercise.The drugs work to begin with then you start some more,Then more and so on.
I am on Adalimumab (Humira) now and after 27 years of PAIN finaly I am mostly pain free.
Not because of drugs but a DIET(you are what you eat).
I bought it off the internet for £20 the best money I ever spent in my life and if you are intrested its called The IBS Low Carb Diet BY Carole Sinclair
19apb66 2 years ago
Some women go into remission when they get pregnant. Seems to be because of the Estrogen levals help with the supression of inflamatory system. Hang in there people there are some really great drugs on the horizon.
To late for me but not ofr many of you i see still moving.
bharris291 2 years ago
@bharris291 I went full blown right after having my second child and had a massive flare up even though I had had flare ups before. I was still undiagnosed at the time. I couldn't even lift my newborn. It was a relief to finally know what it was when I was diagnosed in 1990. I had already lived with pain and inflammation for most of my life.
DLSNiiganii 1 year ago
In the mid 80's i started a website called ASWEB . Creating this site i found thousands of people with it all over the world. Surprising thing was that women were outnumbering the men. With women the sysmptoms are lighter and often go undiagnosed in women.That is why the published numbers are wrong. Men have more severe sysmptoms then women.
bharris291 2 years ago
Remicade helped me a lot even after the 1st infusion. I think all areas diet, visualization ect....help! Peace&Light
TieDyeCreek 2 years ago
I was diagnosed with A.S approximately 5 months ago, I've been doing my best to educate myself about the disease.
I find myself feeling EXTREMELY overwhelmed by the pain as well as the diagnosis itself.
ANY information on: diet, pain management, etc... Would be greatly appreciated. MANY Thanxs
keltubebill 2 years ago
Key is diet. If you want I can send you something that helped me.
Todd Aitken
brazilnut2007 2 years ago
PLEASE send any information that you have in regards to diet for A.S, looking for as much information as possible.
Was just recently diagnosed with the disease myself..
Thanxs Much
keltubebill 2 years ago
@brazilnut2007
Hi, could you please tell me more about the diet that is supposed to relieve the symptoms of AS?
Metsada007 1 year ago
Thanks for the info. I have been struggling for years, and once a professional athlete. Interesting comment about sugar, you might have something there.
Last year I pushed through the pain and rode my bicycle and did well, but then it hit me again. People don't understand what we go through.
Take care, good luck.
dgruc 2 years ago
i do. but it nothing compared to what other shit people get.. its not lethal or anything.
Get back into training.. thats the only way
FrodeFalch 2 years ago
Thanks for sharing some of your story with us. I was diagnosed a few months ago, although I had been suffering for years.
I went to see a chiropractor to try a form of back treatment called "Spinal Decompression", and after reviewing my x=rays he said that I might have AS. From there I went to a specialist and was officically diagnosed.
Now my wife, son, and I have a totally different life. But we are all adjusting the best we can. I feel less alone hearing others share their stories. Thanks.
backpain99 2 years ago
Hi Julie. I have been recently diagnosed with A.S and am experiencing bad hip pains. I was told excersice is the best way to stay limber. My question is, Can I worsen my condition if I excersize through the pain?? Should I stop when I feel a considerable amount of discomfort? Also I know you said that it may be better to stay off lots of sugars, is there anything that you recomend I eat??
skitles242 2 years ago
Just for safetys sake, I'm not a doctor and no one should take anything I say as a substitute for medical advice. Exercise does help, I would do what is tolerated and no more. Walking and swimming are good for A.S. sufferers. They are low impact ; less likely to cause extra pain. As for diet, there are lots of "diets" out there. but, if its not doable, you won't stick to it. So, limit sugar, try to eat as healthy as you can. Even if you just cut out one thing you know is bad; that can help.
TheJulieShow 2 years ago
training will not make your AS worse..
FrodeFalch 2 years ago
Thank you Julie that was excellent. I do agree with it is important to help educate the public on AS. I have had the experience where others act as if I am being dramatic when I complain about my pain, or even not believe me when I say I am in pain.
It is hard to find support when you have A.S. and I think it is basically due to lack of public awareness.
Good luck with Remicade, I wish you the best.
LoriBurns2 2 years ago
I understand completely! Thank you for your comment! I wish you well!
TheJulieShow 2 years ago
Been doing pretty well on remicade; hope it works great for you! I'm with you using all approaches to fight the disease. I've had it since 15 but dx in my 30's. Was also dxed with psoriac as well just recently. Hope you are doing well! Peace&Light
TieDyeCreek 2 years ago
my back hurt for 33 years before i found out. i cant walk far and now my hips are bad. mri shows some but not all problems.
footpain2 2 years ago
I'm sorry for your pain. I understand, and I know it's tough. Sometimes an MRI can be dissapointing. We all want confirmation that we aren't crazy and for people to be supportive rather than think we're makng it up. take care, Julie
TheJulieShow 2 years ago
Thanks for the comments! I don't know what's wrong with my cam! It's out of sync with the video. Sorry about that!
TheJulieShow 2 years ago
Great video Julie. I hope the Remicade works out much better for you than the Enbrel did. I have a big problem with pain caused by sugars too... it took me a long time to realize it though.
perchy71 2 years ago
Excellent explanation of AS. I have had AS for over 30 years and 5 years ago I got psoriatic arthritis. Recently I was told 2 vertebrae have collapsed and I can feel more moving when I try to lie down. The bone density issues I have now are a cruel irony because my spine and neck are fused completely on both sides and the fusion was formed by robbing calcium from my spine. Keep doing the exercises, they are very important.
Best wishes,
Brendan
baconsoda 2 years ago
I hope you're doing as well as possible, thank you for watching and helping get the word out about A.S.
Take care,
Julie
TheJulieShow 2 years ago
<33
JadeRoars 2 years ago