Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group So I have the gene and the pains, waiting for dr.

So I found out I have the gene and I have a lot of lower back pain, neck pain, and hip issues. Now I am waiting for the specialist appointment in January. I have been going to different doctors for about 5 years to get answers for all these pains. Finally a doctor took a " shot in the dark" and here I am. Relieving but scary too. I just want things to get better and find a way to handle this. This has caused a great deal of depression and stress over the years and certainly now but I am still trying to remain positive. I am only 28 so I would think I have some years to manage and adjust my lifestyle but also have read a lot about the tuff road ahead.

i've been managing for the lat 13 or so years, most of those without a dx. with a dx, its much easier to manage as then you have access to meds you didn't have access to before. managing is largely taking it one day at a time and meeting the challenges as they come up, i think. of course for me, i flare and had ok-ish times in between. its those ok-ish times in between that keep me sane and able to handle the flares. if it were more continual, i'd have a hard time handling it; i really admire those who don't get the breaks in between the flares like i do.

anyway, good luck!

Well it's good to hear that you are still fighting it and have a positive outlook. I'm really trying. I just had a bone scan too. What does that tell them? After I had that is when the romotoligist( not spelled right) appt was set. Some days I feel pretty good but others forget about it, I really don't even want to get out of bed. Is a starch dairy diet really the way to go? It seems a lot of people have success with it.

Hey Ryan, I'm new here too and I relate a lot to you. I'm 31 and I've started to think my depressive moods had a lot to do with my overall non-healthy feeling. I have had times with very dark outlook too.

About your question about the diet, I just started it, 4 weeks in and my pain has reduced a lot. I started to see improvement after the first week. If you are positive you have AS give it a try.

Hi, thanks for responding and I am going to start the diet. There is dairy and starch in so much of the food I eat so this is going to take some time. If that's what will help though that's what I'm gonna do.

Ryan,

AS is bad and life-changing, but it's not life-ending as you already acknowledge. You don't have to look far to find people with much worse conditions. You have a range of medications available, based on your local health system/insurance. If you prefer to avoid the drugs (or can't afford them or aren't offered them), then you can opt for low- or no-starch diets. It's good that you are checking out the possibilities on this site. At least with a Dx, you can now focus your research on what's been proven to be effective treatments. Just don't get in a rush and make any hasty decisions, and be prepared for some trial-and-error in finding the best solution for you. We hate to see anyone get AS, but welcome to a group that truly wants to help you.

--Greg

Thank you and I am glad I found this website. Hearing other peoples stories has given me hope. I am going to get started on the diet and my wife lately has been trying to get me to do yoga. I did it a little bit and was a bit surprised on how much I need to work on my flexibility lol. It felt good though.

Best wishes, Ryan and so glad you found your way here. Not knowing is so much worse, in my opinion, it is like being in the dark. You can get so much support here. We are here for each other. Keep posting,

Thank you:) I will keep posting for sure. Finding this site has already helped me a lot. It's really nice to talk to people that can relate. I try to speak with my family about what I am going through but they don't understand how serious it is. They seem to make light of it like it's just a little arthritis! Lol. I am nervous about the rheumatologist appointment next month though, but at the same time excited because I know there lies many more answers and help:)

Ryan,
I started the diet 5 weeks ago. It's pretty hard to get used to, and I am sure I am making mistakes, but I try to eliminate the obvious things and I'll refine as I go along. I did get relief the first 2 weeks, but now am just finishing a flare that was new in my middle back. But I'll keep the diet going for at least 6 months to see how it works. Good luck with it...

Also, I really recommend yoga! I was so incredibly tight and not limber when i started it but over time i got much looser and even though things stiffen up even in one day, I go back and feel so much better every time. I find the heated yoga works best, but anything would help. Give it a try!

Jennifer