Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group going crazy!

Donette,I haven't seen any official numbers, I was being generous. I read a lot more posts(from several different AS forums) from people taking meds then people who have had success with the diet. Many people who do the diet still have to take meds also. I have tried the diet myself and I just couldn't stick with it. I have UC and fruits and vegetables make it worse. I have know other people with IBD who have the same problem. I sure wish I could treat my AS with diet, it would make my life so much better.

Cam, someone else asked if you have a good rheumatologist. I think that is key to it all - having an expert who you can keep in touch with and monitor progress, even if you are opting to be conservative in your treatment first off.

Like Sue says, it doesn't have to be all or nothing. You won't know how you feel on meds unless you actually try it. It could be that your AS does come as flares with manageable bits in between. I'd say talk with your rheumie about trying a proper course of NSAIDs - not for pain, but for reducing inflammation. Let yourself experience what that is like, then you can make a more informed decision about whether you take them or not. Also talk about what other drug options there are, and what your rheumie thinks about early aggressive treatment vs waiting till things get really bad. To me, things like diet and exercise are essential self help parts of the whole plan, but they aren't enough on their own. Meds aren't enough on their own either.

Hi Cam, glad you are here but sorry you are suffering so much.
Question: are you involved in any of the AS groups on facebook? There are so many! How about all the awesome AS blogs? Are you involved in Spondylitis Association of America? From that group you can get a mentor. I recommend your reaching out and connecting, how ever much it feels right, like you are doing here, now. Head on over to the NSD area here and you'll find support and recipes. Consider that NSD central! I would relax about the diet and just do your best to eliminate the starch. You can make yourself sick doing too much research and sitting in front of the computer too much. Please get help for depression you are worth it!! We hope to hear a lot from you here and one day you'll be giving newbies encouragement and advice, yeah?
Cheers,

Hi Cam, welcome to kickas. I can't help you with the NSD but many here can. So glad you found us. Sounds like you could use some comradery and understanding and you will find this to be the best place, and you will know you are not alone.
Cindy

thanks for the comments everyone. i need to find a better doctor. one who is open to many different treatments. mine gave me a sarcastic giggle when i told him about the diet i was trying. AS is just so time consuming between work, making food, girlfriend and researching.

i appreciate all the support everyone.

Hey Cam,
I was diagnosed last month but have been showing symptoms since I was 15. I also have and currently have been experiencing a lot of what you talked about. I have found that personally for me without any sort of medicine to curb the pain I wouldn't be able to function and the level I am barley maintaing now.

For a long time I played the role of everything is okay happy and hunky dory, while inside I was literally feeling like I was dying physically and emotionally. I literally got to the breaking point and was so happy to come across this site because it has helped me tremendously especially in a family or relationship that does not have any idea the pain and fear that you are experiencing.

I hope you will find both information and comfort here on the site and know that you have a bunch of people who understand and can relate to what you are experiencing. I also am going through the stage of wondering what will the future hold and will it always be like this ( I am currently 31), which from what I can tell is a normal reaction.

I know the site has been an amazing help to me both for technical questions and emotional support I hope you find the same here as well!

The positive note is that you were diagnosed early and hopefully they can find something that will help with the pain and slow the progression of the disease down. It took them 15 years to get a diagnosis for me, so catching it young I think will be a benefit for you in the long run.

It can be hard when people don't understand some of the changes you are going through, I have found a therapist that is amazing and had experienced chronic illness herself and have found her also to be a great asset to helping me cope through this. I was lucky and found her for free, but usually there are sliding scale and some free people out there that you might want to consider talking to.

You have found a place where people "get it" and welcome to the family!

Hugs,