Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group a million questions....& not even sure how to ask

Welcome to KickAS Jaye. This is a great place with so many wonderful friendly people full of knowledge and eager to help one another.

I am sorry you are having to deal with this. It is not a fun hand to be dealt but it "can" be played successfully. You can have a good full life.

I have multiple diagnoses; AS, RA, OA, Fibro, SLE, chronic Iritis, Hypothyroidism. If it is autoimmune, I have it. I was diagnosed with JRA when I was 14 but was sick for a long time before that. I am 63 now. We raised 3 beautiful daughters and I had a wonderful career until I had to go on disability at age 43. Life goes on.

My hubby suffers greatly with RA. His back is more fused than mine but he has never been checked for the B-27 gene. I am positive but he/doctors see no reason to check him. Bottom line is treating symptoms. I asked my dr. how he knows whether it is the Fibro, the RA, the Lupus or what that is flaring and he said he can tell by where I hurt. I particularly don't care which it is as long as I can feel better.

We have a son-in-law with AS and of course I have been concerned about my grands with it on both sides. My daughter says, "Mom, don't worry about it. There is nothing that can be done about it one way or another and we aren't even thinking about it unless something bothers them. The plus side is knowing the family history and knowing what to bring up to doctors if the need ever arises." Smart daughter we have there. Their daughter (early teenager) has back pain a lot and has had MRI's, etc. but no blood work. She is into Western Horse shows, scuba diving, LaCrosse, etc. and they choose to think she has hurt it with all of her activities. They aren't going to plant into her head the chances of disease.

You will know for sure if you have Iritis because you won't be able to stand to open it in the light, it hurts so bad. I can tell mine is flaring before it even starts getting red. I have been treating it since I was 30. I am on 5 mg. oral Pred. daily and 150 mg. Imuran daily to protect my eyes. That is the only thing that holds my Iritis/Uveitis.

I have occasional heart palpitations. It feels kind of like a long pause or that your heart skips a beat which it doesn't; it really is a long pause and then a couple of fast ones. I was on meds in my 20's for arrhythmia but have been off of it for many years. Caffiene aggravates mine.

As far as worrying about the meds, I have chosen not to be on the Remicade (at this time). I go back to the rheumie tomorrow and I may go on it. The only reason I am not already on it is because of the Lupus. The Imuran is a chemo drug with some pretty potent side effects and the Pred is potent too. I have been on very high doses of Pred in the past. My suggestion is to "not worry" just be as educated as you can be and make a decision and think positively.

No, AS doesn't come from STD's. I do know that you can have a false positive reading on Syphillis tests for Lupus anyway. I don't know about AS but it is a gene not an STD.

I try to exercise. The pool is the best exercise I have found. As far as your kids, I would keep them very active but I wouldn't have them stretching "just in case" because I wouldn't want them even thinking about the "just in case". Just keep them out of the front of the TV and computer and active as children should be.

You didn't ask too many questions. Come back and ask all you want. I do think you will get different answers from different people as we have all learned our own ways of living with chronic illness.

Listen to your body. If you need to rest, rest. My hardest time was with a very responsible job that entailed long hours but I loved every minute of it. I didn't listen to my body or my doctors about slowing down until I cratered and ended up in the hospital and in bed for over a year. THIS WAS FROM LUPUS NOT AS. Now I do listen to my body. I do get up early and get out with the dog and water flowers, etc. before it gets hot and then I stay inside and sometimes I go back to bed. I know it is not as easy when you are still raising kids. Been there and done that too.
Don't hestitate to ask for help "if" and "when" you need it.
When you need to lie down, just get the kids to lie down with you and read a book to them especially at naptime for the 2 year old. Just take one day at a time and you will learn what will work for you.

I wish you the best and blessings for your family.
May you have a glorious relatively painfree day.

Possi