Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Level of expectation?

Hi everyone. I have been living with AS for a couple decades now and still not sure what level of comfort I should expect. If I keep my lifestyle fairly sedentary, i don't suffer much, but i'm in my 30's and have two young boys, i need and want to be active. Even the less active activities cause a lot of pain like crafts and gardening. Am I suppose to keep adjusting my lifestyle to accommodate this stupid disease, or should I expect more? I'm on Mobic, and although I am in a decent amount of pain, I don,t have any arthritic changes and my inflamtion levels are hardly ever elevated in my BW. I'm not a severe case, but I think I should be able to jump on the trampoline with my boys without suffering for days after. Any suggestions? I tthink with a disease like this, you have to be willing to make some changes, but do i really need to give up everything? Help, please.

i believe that this question generates a huge degree of variation in answers. i've learned to live with a lot. have learned to modify my life, avoiding the things that really bother my body, especially if they are things i don't mind to give up. but a few i wish i didn't have to give up. but i like being in lower pain in my day to day life, so i've mostly accepted the compromises. still there is a part of me that believes i should still strive to have as much as possible, do as much as possible. so for me, its kind of an emotional / mental balancing act.

my current rheumy, when we were discussing my success on methylpred dose packs, said i should feel like that most of the time, and if not, then we should be talking other drugs. but i never feel as good as when i've been on the pred. but since i had to deal with all of this without (antiinflammatory) drugs for a dozen years prior to finally finding a rheumy who would dx and treat me, i've learned to accept a certain level of pain and disfunction. i've learned how to accommodate so i can live my life day to day pretty well for large quantities of time. the only time it becomes a huge problem is when i go through a flare that lasts months or longer and then i'm not so sure.

i've been to lots of doctors (and PTs and chiros) and still have a lot of different doctors. and each has different beliefs in what i should expect regarding pain and what i should expect out of life regarding what i can do and what i "need" to just let go. i do appreciate those doctors that are motivated to make me as pain free and functional as possible. those who seem to admire how hard i work at this. vs those that think i need to just learn better to "accept my lot in life".

so i really think it depends on what each of us thinks. i don't think any of us can put ourselves in each others' shoes. we each need to feel as happy as possible and as satisfied with life as possible. and that's going to mean different things to different people. some people are very accepting of their circumstances. some always strive for more / better.

i tend to go between the two. trying my best to accept the way things are. but always holding out hope and striving for more. so while i try to accept what is, i also try to do as much for myself as i can: exploring diet, supplements, various drugs, exercise, acupunture, chiro, cortisone and triggerpoint injections, PT, etc. while i'll never give up trying to have less pain and more function, i also try to accept where things currently are. but just because we accept something doesn't mean we don't keep trying for better.

so maybe i don't so much go between the two as much as hold both thoughts in my mind at the same time: accept what is, but strive for better, at the same time.

the things i gladly avoid:

any housework that hurts me. i'm fortunate hubby can do those things.

it was tough for the few years when he had to do all the prepping of fruits and veggies as i didn't have use of my left hand due to a torn ligament. but he'd peel and chop and i'd do the rest of the cooking one handed. that thankfully finally got mostly better, as i really love being in the kitchen preparing food. i find it very therapeutic.

but doing the dishes, cleaning the bathrooms, sweeping / mopping / vacuuming / shoveling (anything that rotates the pelvis) i gladly give up.

i'd like to garden more, but hubby does such a fine job of it. and i have my little herb garden so that is manageable and keeps me happy enough. i don't really have time to do more gardening anyway, so its ok.

running, playing tennis. i used to do both, but kind of gave them up before i had to anyway. i'm satisfied with being able to walk most days and bike some as well.

sitting at the movies, in theaters, at concerts, etc.
i never really cared about those things before, so why should i care now.

the things i kinda accept :

not being able to sit except in very flat chairs (due mostly to my neck).
not being able to eat a restaurants that don't have the right chairs (we do takeout more than eat out, i'm ok with that)
only being able to walk a certain distance.
driving with ice packs everywhere i go.
not being able to swim because it irritates my SI.

the things i can't accept:

not traveling (i want to travel the world and yet mostly i can sit on a plane for about an hour and sit in a car for less time than that, but i won't give up the dream of traveling the world)

flaring badly (that's why i'm now taking pred when i flare. if taking it just a few times of years works out, we'll do that. but if i need it more, then we'll have to look into other drugs)

i'm also one to believe that we can often find solutions if we keep at it. like i have to sit quite a bit for my job. it was a real challenge. then i found this thing called a swopper chair (stool on a spring) - now, so long as i'm not in a bad flare, i can sit almost as much as i need to. it took about 8 years to solve that problem. but i finally did. or i found a flat chair i can sit on here at work, so i drag it all over campus whenever i have a meeting or teach a class no matter where on campus it is. i feel kind of silly carrying a chair around, but gotta do what one's gotta do. the swopper is too heavy to carry around or i'd do that. i do move the one i have at home from room to room. its on a rug and i just slide it across the floor. yeh, sitting is my biggest challenge most days. if only i could find a new car i could sit in as long as i can sit in my 1995 saturn with over 200,000 miles. but at least i bought a car that would last and that i can sit in, before i started having problems. thus i do feel lucky for these small things.

My answer is both. I've had to adjust my lifestyle AND keep fighting it. Wish there was a better answer.

Many of us with AS never show elevated levels of CRP in our bloodwork, so don't necessarily use that as an indicator of disease activity. I gave up on my doctors, as they could not agree and only promoted drugs as the answer. Well, Enbrel gave me MS, so that was a problem, and SSZ is incompatible with my gut. As far as deciding if giving up some things (starches) in order to gain some things (having fun with kids), that's your call. For me, I gladly gave up starches to gain freedom from pain and to get into a healthy state. Just don't blindly trust in doctors who only know what they are taught by the big pharmas.

you might get your answers here.. it is how i have adjusted and what motivates me..

http://mypartnerspondylitis.blogspot.in/2012/06/learn-to-be-happy-with-as.html

http://mypartnerspondylitis.blogspot.in/2012/06/i-will-win.html

Hello, ewoodct:



EAT TO LIVE.

Ditch the NSAIDs; they can turn a mild condition into a severe one--a minor diversion into a career!

HEALTH,
John

this all reminds me of how two very public people dealt with being in a wheel chair. christopher reeves never gave up looking for answers to being able to walk again, never gave up that hope. teddy pendergrass said that he learned to accept and embrace his condition. i've obviously paraphrased. think i even remember pendergrass talking against the first approach. both have passed away after each person's brave fight to find meaning and purpose in their lives. who was right? i don't think there is one right or wrong way to be. we are each individuals and i think we have to find our own paths. i respected both of these men greatly, and yet their philosophies seemed very different to me.

If you are just on mobic, then perhaps it would be worthwhile having a talk with your rheumy about whether you might expect significant improvement if you tried something else.

I'd say keep looking for answers, and different ways of dealing with it. And keep checking in regularly with a good rheumatologist because treatment options are developing so fast in this disease you never know what is around the corner.

cemc,

yes, i agree with cemc. there is a lot you could still do that would possibly give you better quality of life and less pain.

only taking mobic, i wouldn't "settle" until i had tried a lot more than that, be it other meds, supplements, PT or something like that, etc. you can see (below my name) all i've done / am doing, and still not at the point of wanting to "settle".

as cemc said, probably time to talk to a good rheumy about what else you could be doing. my rheumy is the one to put me on a lot of the stuff i'm on. other doctors had started, but he's the one that continued the path. and we're still trying new stuff.

that's just my opinion.

ewoodct, please excuse a minor hijack.

@gbash

You have mentioned several times that you got MS from Enbrel. If you don't mind me asking, do you now live with progressive MS, or was it "temporary" medicine induced demyelination?