Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group At the crossroads of life.... then pain strikes...

When getting my XRay done the technician asks me: "What problem do you have?" I said back pain. "You are a young man you shouldn't worry!" Sigh......


Hi Everyone

This is my first post on this forum. I came across this site when I noticed that I was HLA B27 +ve in my blood test. I had been reading various posts here not sure whether I have AS or not. Went to a rheumatologist got my MRI and more xrays and blood tests done. And its confirmed I have Spondarthritis. I mean I aint even clear whether I have AS or not. But I guess AS is a super set of Spondarthritis.
Ok that was my background.

I am 21, dreaming to be an entrepreneur and starting my own company pretty soon. And now I have to deal with this constant pain. I have been taking NSAID like Indocin and they have relieved pain to an extent. The pain is not that much though.

My rheumatologist told me to start having Methotrexate. Speaking of my rheumatologist, he is one of the worse doctors I have seen. This guy has so much knowledge but doesnt get involved with the patients. It seems as if he is there only to mint money and doesnt care a [**BLEEP**] about the patients. Methotrexate is a big thing for me at this age and he is cooly telling me to take it and aint explaining anything. He also told me to take 2 Naproysn 500 mg tablets, even thought Indocin was working fine. Then I found on the internet that FDA has adviced not to take more than 400mg of naproysn in a day. I think I need to change my doctor.


What pisses me off is the fact that there is no cure for AS. I read that Egyptian mummies were found to have AS when there skeletons were found. More than 2000 years have passed and even now we haven't found a cure for AS. We are planning to go to mars, setting a base at moon. Dont you think its much better to find a cure first for diseases over here on earth?? A cure does exist for AS and Arthritis in general. We just have to find it.

It would have been ok if there was a constant pain, but now I have read that the spine starts fusing! People, we need to find a cure for this......
If only all this was happening after 10 years......

Hi and welcome!

AS is no fun if it comes now or in ten years. you are actually lucky you know what beast you are fighting, for someone it may take the ten years to find out. after you get over the first shock, you ll learn how to live with it and things will get a bit easier. dont worry in advance!
fingers crossed!

imbue, sorry to hear about your dx. I am one of those who took 10 years to find out. My doctors couldn't dx me and even had surgeries for symptoms of AS that wasn't even the real problem. If I could comment on your doc perscribing Napsrosyn, in my experience this drug played havoc on my stomach. Be VERY aware of especially this drug that you MUST take this med with MEALS not snacks or just milk. I would highly reccomend to just stay away from it if possible. There is no reason to take two of these drugs! I take Indocin also with good results but still must take it with MEALS. I might also reccomend you take Sulfasalazine to help control the progression of the disease as this is the only med that does that they think. Though it is rough in a life with AS it is possible to have a good life. One day at a time. Eat right and exercise are the main goals. And DON'T OVER DO IT please. I'm starting to sound like my mother....lol. Take care, Del. <><

I am new to site also. I stumbled upon it by accident and found that there are others out there who understand and may have helpful insights to this thing we have. It can be so hard especially when you are in a flare, but you have to keep a sense of humor even on your worst days.
I hate the fact that people think you are faking. It's not like you have something they can see. Or they want to know what Pain Meds you are on and I tell them nothing and they look at me like, well you know.
I am on Methotrexate, Indomethacin, and Embrel. I've tried 3 other therapies and had either allergic reactions or was in worse pain. This combination at least makes the pain manageable on most days.
I was lucky enough to get a Rheumy who knew about the disease and lets me call him at all hours of the day and night when something is going on. I don't know if this is because I live in the boonies or it's because he really cares about the patients that he sees.

Hello Imbue,

Many new members come along with posts similar to yours... hear the old "you are too young".... the doctors that push the meds and do not care to listen to the patients... the confusion about the future and if AS will complicate matters. I have been there myself.

My advice is learn, learn and continue to learn about AS. There are many answers out there that may help you... diet, supplements, medications, exercises... much to learn that you could benefit from, and an informed Kicker is a Kicker that generally can improve symptoms.

I stumbled upon this site 5 years ago. I was struggling with AS at the time because I was having repeated liver complications from medications. I was 33 at the time and had AS for 7 years at that time... I had been living very well with AS with some effective medications (azulfadine)for me and exercise (swimming laps)... but my days on most meds was coming to an end due to my liver doctors informed me and those available did not do much to put a dent in the AS pain.

At this time I learned of the Starch Free Diet discussed here and it has changed my life. At first the dietery change was difficult from a discipline and knowing what had and did not have starch, but today, 5 years later, I do extremely well, most days I forget that I ever had AS. This may be an option for you.

There are many options available to you, my advice is to learn all that you can. The person that can have the biggest impact on your health is yourself.

Best to you,

Tim

I'm in agreement with Tim. Educate yourself. Following the NSD would likely prove very helpful also. While your current rheumy sounds very knowledgeable, it also sounds that their communication skills leave a bit to be desired. Personally, I'd consider consulting with another doctor. I found similar issues with some of my doctors. While I respect their knowledge, I don't always respect their attitudes/behaviors towards patients and find many of them quite defensive when they perceive me as semi-knowledgeable about my condition.

Finding this website was one of the best things you could have done. I've perused it for some time, but finally decided to become active in discussions. Also, I wouldn't let your diagnosis interfere with your entrepreneurial aspirations and dreams as it is my perception that many folks out here are very successful.

Hey,

I know what you're going through to feel like you're so young and have all these dreams for yourself and to then get another obstacle thrown in your path. I'm 22 and was diagnosed this summer a week before I started my senior year in college. And let me tell you, I really understand trying to go after your dreams and get through school and being in this immense pain with no one really understanding and so many people telling you "Oh, you're too young to have back pain...you don't know what back pain is yet." But we do. You are definitely not alone.

This site has been one of my saving graces because the people here really do understand your frustration and pain and what you're going through. This disease really sucks and we are all trying to find a way to live with it and still go after our dreams. My advice is to not give up on your dreams...don't let this disease stop you from going after the things that will make you happy. The people here know a lot about AS and are more than willing to share their knowledge with you...take advantage of that.
~Jess

Hi, Imbue, you sound pretty smart for such a young fella! Good on you.

My two bits: learn and read what you can on everything you can get your hands on regarding AS, alternative therapies, and the drugs the docs want you to take, beware of the side effects the drugs can cause [liver complications, etc]!

Also, check out the NSD forum as Tim and others say the NSD can radically change your pain and the disease for the better. I have been NSD since Sept 06 and I will never go back! {I am HLB27+ as well, but have NOT yet been diagnosed with AS just sacriliitis {sp?} a precursor to AS, I suppose.]

Cheers,
Rita

James, 12, Adrian, 10, Elisabeth, 3, my babies!

Hey there " I'm blue ", I hope those of us here can help change you " Name ". I'm glad you came here. You will find many of the answers here, not all, as you say, there is no cure. There is so much experienced "old As'ers" like me ( we don't have all the answers either ), but, we've been there done that. Also you will find many young AS'ers here going through the same things you are. As far as advice, at this point, I would say start by finding a Rheumy that is someone you are comfortable with. Remember who ever you settle with should be a perfect fit because you will be trusting your health with that doc for the rest of you life or until he retires. One that will talk you through everything. They are out there. My Rhuemy is one that will not move from the room until all my questions answered. He believes the informed patient is the best patient and pushes all his patients to research whenever possible. I also like the fact that he is concervative in his treatments.
I hope you find kickas a place you feel comfortable with to come back to. You will never find a better family.
Cindy

Welcome imbue!
Also, congratulations....for getting dx'd early and finding this website. I have to agree with Tim, Jaybird, Squeaky and the others, educate yourself and then apply what you've learned. Especially, read the "no starch diet success stories." The NSD has changed my life too. I only wish I had learned about it 10-12 years ago.
Best wishes for success in kicking AS! You can do it too!!
Chimike