Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group When does it settle down

I am very new at all this so I hope not to sound too foolish. I am a newly diagnosee with about 15 years of visits to a host of medical "experts". I have searched several medical web sites and many of them say that the condition eventually "settles down" after a while. Does anyone know what length of time constitutes "a while" or when or if AS settles down??

Thanks for your help and support

Doug

Feeling your pain.

If some medical jerk told me that I would be tempted to reply When's that, when I settle into my box? It was probably meant in the sense of It burns itself out which means it'll burn you out first, the more likely if that is the quality of advice you are going to rely on. AS is for life, and the better rheumies will tell you that you have to treat yourself, though even they don't always realise just how true that is. This site is a good place to learn ways of going about it, and a good place to start is to read the information on the main web page. Good luck and welcome to the wacky world of https://www.kickas.org!

They also serve who have to use a straw

Hi Doug, and welcome to the site.

I am sure that you will get many responses to this post, especially from members who have had AS for longer than myself. This topic has been brought up in different contexts, and it seems, as all with AS, that there are many possible outcomes of AS. It is a very unpredictable disease. It can go away overnight, it can put you into a wheelchair for life, and there is no way to know how the dice will roll.

Since I am rather newly diagnosed (11/2001 with symptoms for 6 years) I am not an authority on the later stages of AS, but I am sure that you will get a lot of perspectives on that.

Welcome to the site, and I hope that it will help you as much as it has me.


http://www.power-over-pain.org

Take care my friend

Daniel

AS settling down as in after you totally fuse and the inflammatory process has down it's evil work? I've had AS now for about 24 years (misdiagnosed with RA for the first 22 of them) and am fused in the SIs with the lumbar spine in process, and the only time it's settled down has been the last year when I've been on a disease modifier which has finally given me some relief, almost a remission - - except I still have flares every now and again, shorter in duration but still there - - and a lot of mechanical damage in my back from all those years of inflammation which means I have nerve damage - - which means I get referred nerve pain down the front of my right leg and my feet are numb on the bottom - - and my left foot has fused also, leans inward, the docs say I need surgery to fix it or try to fix it, break the foot and refuse it in a more normal position, but for the time being I'm trying out orthodics and avoiding surgery. It's true I had periods of flares and remissions but no, it didn't "settle" down or burn itself out, I personally think that's just another myth. I also have joint damage in my left ankle, and that can't really be fixed either, only possibly helped by orthodics.

Cheryl

Dogs love it when you leave your clothes on the floor

WELCOME, Doug:

There is an old joke: "Doc, it hurts when I do this..." When you are fused, you cannot do that, so you might not seem to hurt as much. I have had AS for 31 years and it has not "burned itself out" as my early day physicians had predicted: "...20 to 30 years"(HA!) And I'm not waiting any longer...

Actually I have used AS avoidance techniques for many years, and the last three have been the most productive; since the awareness of the NSD/LSD (please refer to the AS Dietary Primer https://www.kickas.org/as_dietary_primer.shtml). We are beating this thing one way on the NSD forum: https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch. Hope that you will join us.

Best Regards,
John

Doug,

Welcome to KickAs. I'm sure you will get several different responses to your question. I'll add my 2 cents. I was just diagnosed in January this year and since then I had a 3 week spell where I had no pain and was on no drugs. I thought I might be in remission. But low and behold the beast came back. My brother who also has AS has had several remissions of sort (i.e. went away for a period of time (sometimes up to a year without symptoms) but it has always come back). My father also has AS and he has suffered for 30-40 years with good periods and bad periods. My aunt on the other hand had several years in her late 20's where her AS was very bad - but then it went away and it hasn't come back. She is now in her 50's. So overall I would say that the disease is different in some people. Just try and keep active and deal with the pain. And if you are one of the lucky ones that goes into remission then enjoy being pain free.

Kym

Doug,

I have had AS going on now 16 years and I just do not see it settleing down. True some days better than others and then those nasty flares. Just got over one that lasted month and a half in middle back area. Wow, what a relief to just be sore now with small pain. I personally do not see it ever giving up but if it does I will truly enjoy it. However, for the time being I will continue on and take it whatever way it comes. Good luck to you. Take care.

Rickey

Hmmm...

Guess I've been diagnosed about 25 years now. Only 40 though. AS dies down when you find the right DOc, you get the right med's or your body becomes so screwed up that it is nearly immune to pain.

DOn't wait it out. Get good medical help. The flares can last long and the damage even when your not in a flare can persist.

 
stevec-they also serve who stand and wait

hey dan,

I read your response and saw a nasty word (wheelchair) I am already using a cane because it is getting harder and harder to walk on my own and the thought of a possible eventually using a wc is very extrememly scary. but that is my personal fear and I am going to have to deal with it I guess.....oak