Hi there, I’m Shelly a single mother of 2 (son 12, daughter 15). I’m new to this group as well as to AS.

I was DX’d 1 1/2 yrs ago and was pretty scared when my Rhem. Doctor told me about it. At the time of DX I was in so much pain in my lower back and hip that it was all I could do to just function doing normal everyday life and not freak out completely! I was sent in for a spinal block and that made a bit of a difference. I’m on Flexeral and Indomethacin but it doesn’t do all that much for me. I almost bath myself in A535 rub several times a day. The AS is in my right hip and the lower spine right now.
I’m wondering how fast this is progressing for everyone? I Also have RA and Fybro ... so most times I’m wondering where one stops and the other starts if you know what I mean.

What sort of things help you all for the pain? Are there certain exercises?
Would love to hear from you as to what works for who and how it effects your life.

Hi Shelly welcome to the group. AS progresses differently for each individual. For me I know sometimes I have fast progression and then other times it tends to slow down. I notice like with any arthritis that I am in more pain when it is cold and damp out and right before a snow or rain storm. I use a TENS unit from empi.com which helps my pain, I take a hot bath every night before bed and I stretch every single day. Exercise does help a lot, there are exercises listed on spondylitis.org that are good. You might want to ask about physical therapy to help increase your mobility and decrease your pain. I also found a wonderful chiropractor who helps control my pain also. I take muscle relaxers and extended release ultram. I used to take indicin but sometimes the NSAIDS need to be switched up as they stop working. Just let your doctor know that they are not giving you the relief you need and ask for a different one. Also make sure that you are taking your meds with food. I found out the hard way with an ulcer.

For me exercise is power walking three times a week for an hour with my dogs. I love swimming and it is great for your joints so if that is an option for you, I’d give it a try, even the water aerobics is supposed to be great. I would avoid anything high impact like running, jumping, tumbling.

As for how it has changed my life, I am tired more often, I listen to my body now especially when it hits its limits. I don’t sit or stand for more than an hour straight, airplane or long car trips require good medications! Sometimes I can’t make it to work because the pain is too much, other times I feel like the AS is completely gone (but those days are rare). I know all of the pharmacists at Walgreens and their typical work schedule lol. I have lost some friends over this, they couldn’t understand why some days I just could not get up and go to the mall with them, or why I refuse to play bumper cars and other limitations. But for the most part I have amazing wonderful loving friends and family. I also have recently given up on doing laundry. Everytime I do the laundry I am in pain for several days. Each of us has some of the same and some differnt triggers. If you listen to your body you will learn your own triggers and limitations.

I wish you the best of luck in your fight for mobility. I wish you all the best. If you have any questions I can answer for you please don’t hesitate to ask. And.... Welcome to the group!

SunWorshiper wrote:
Hi Shelly welcome to the group. AS progresses differently for each individual. For me I know sometimes I have fast progression and then other times it tends to slow down. I notice like with any arthritis that I am in more pain when it is cold and damp out and right before a snow or rain storm. I use a TENS unit from empi.com which helps my pain, I take a hot bath every night before bed and I stretch every single day. Exercise does help a lot, there are exercises listed on spondylitis.org that are good. You might want to ask about physical therapy to help increase your mobility and decrease your pain. I also found a wonderful chiropractor who helps control my pain also. I take muscle relaxers and extended release ultram. I used to take indicin but sometimes the NSAIDS need to be switched up as they stop working. Just let your doctor know that they are not giving you the relief you need and ask for a different one. Also make sure that you are taking your meds with food. I found out the hard way with an ulcer.



For me exercise is power walking three times a week for an hour with my dogs. I love swimming and it is great for your joints so if that is an option for you, I’d give it a try, even the water aerobics is supposed to be great. I would avoid anything high impact like running, jumping, tumbling.



As for how it has changed my life, I am tired more often, I listen to my body now especially when it hits its limits. I don’t sit or stand for more than an hour straight, airplane or long car trips require good medications! Sometimes I can’t make it to work because the pain is too much, other times I feel like the AS is completely gone (but those days are rare). I know all of the pharmacists at Walgreens and their typical work schedule lol. I have lost some friends over this, they couldn’t understand why some days I just could not get up and go to the mall with them, or why I refuse to play bumper cars and other limitations. But for the most part I have amazing wonderful loving friends and family. I also have recently given up on doing laundry. Everytime I do the laundry I am in pain for several days. Each of us has some of the same and some differnt triggers. If you listen to your body you will learn your own triggers and limitations.



I wish you the best of luck in your fight for mobility. I wish you all the best. If you have any questions I can answer for you please don’t hesitate to ask. And.... Welcome to the group!

Thank you so much for the great information. I’m sure I will be coming to you with a lot more questions!

Wishing you all the best!
Shell
Ü

Hi Shelly

I am 43 and have had AS since 21 and have a very aggressive form. My spine is fussed totally and the pain of that was very bad, I also have shoulder pain in both shoulders and one might need to be replaced just recently had an MRI for that. I have had Iritis and some hip pain, but hips have been spared to far. Shelly you should keep active and swim if possible and exercise. As far as medications I would talk to your doctor about Enbrel, if it had been around when I was first diagnosed I think I would not be in this the shape I am currently in. I have been on indocin and lots of pain medications that just stop working after awhile and they have to be increased to be effective. I am married with seven year old twins and am currently disabled because of AS. I do stress the Enbrel, please talk to your Rhem. about that.

Any questions, let me know.

James