Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I ask the advice of older, wiser ASkickers . . .

I have a question for people who've had AS for 20 years or more . . . If you could go back in time to the onset of your symptoms, knowing what you know now, how would you change your lifestyle? I'm curious if people would, for instance, force themselves to sleep without a pillow (I'm having a hard time with this one), or pay more attention to their posture, or whether they'd stop being afraid of injury, and take more risks? I don't know how important all these things are in the LONG run, y'know? I'd like to know how you guys'll sound off on this one.

Thanks a bunch . . .

-Bridget

Bridget, I have had this stuff since I was about 20, I am 56 now. I know a lot of folks say there is never a point where the disease has burned out, but I hardly ever have a bad flare anymore. Maybe it is because about everything I have is fused already. I had 10 yrs. of intense pain before I got a dx, and another 10 to 15 while everything was still fusing. If I could go back to the start with the knowledge I have now, I would give Dragonslayers methods a chance and see if I could prevent all of this damage. One other thing I would do is spring for a hot tub right off the bat, even if I had to borrow the money to buy it. I really get a lot of relief from a long soak at about 103 degrees right before bedtime. Good Luck J.R.

Hi, Bridget:


Knowing what I know now...

That's dangerous. The only things I would do are eliminate almost all starches from my diet and walk the fine line with antibiotics and LSD. I would reserve NSAID usage for only very special occasions and 'accidents.'

My posture WAS perfect; I believe that NOTHING I could have done, outside of diet, would have prevented the kyphosis. I was told not to sleep with a pillow; how does this help in the fetal position?

It is very simple for me: Although I would have missed out on many pizzas, croissants, vareneky, and baba ghanouj--avoiding what I have been through lately, thanks to AS, would certainly have been well worth the self deprivation and denial.

I would have (and COULD have) kept going to the chiropractor, sleeping "wrong," slouching over the cpu and engineering bench at my day job, playing racquetball, skiing, backpacking, running, and Travelling, had it not been for my misguided diet and terrible treatment choices.

There is NO SINGLE THING as important as the NSD in the treatment of AS and it is up to each of us to choose: Eat to live or live to eat!

I have had AS for 35 years, and regret that I learned the truth about this disease so late; perhaps others here need not rediscover my footfalls.

Good luck to You,
John

Hi JR.

I have been trying to get another DVD back so I could send one to you to see the Teeshoe film. But, over the last few weeks, we have made a connection with KCTS which up here in Vancouver, we watch this station on Ch 27. but I don't know what channel it will be on in your neck in the woods

Anyway, KCTS will be showing the Teeshoe story on March 15 at 10:00pm. The may run it a few extra minutes to include a few words by our film Director. I hope so, I worry about what she may say about me.

I still have problems watching this film as it brings up memories I am trying to forget.

So check it out by looking for KCTS on the net or check out the newspaper to check the TV schedules.

Sorry I butted in on this thread. I will give you more info if any changes are made but will send a PM.

Regards,
George

I hope I qualify enough to answer this question, but you know I would go back in time. I had AS for 19 years, and the age of onset was 26 years ago. I would go back in time to change things, like not relocating so much so that I have kept seeing doctors like I should have been doing. I would still have problems with meds and I did everything I could to help my posture, so I don't think there is much more I could do to change that. Taking risks, I used to love to do that, but I think that might have what started all of my back problems. I'm not certain they were the problem though. I think I would have also get myself to start taking calcium, back when I was 10.

As far as my parents/rough childhood goes, I wish there was something I could do to change that too. Yeah if I could change that, I think my AS would have been alot easier on me. PM me if you really want to know what I went through as a kid.

well, you have a great day,
I think I will go sit in the dark and think for a while.
Take care,
James.

Ah, the eternal question I force myself to face from time to time...ugh, this one is hard to even face.

If I could go back, would I do things differently? You bet your sweet....uhh, yes, I would do things differently. Based on what several doctors have told me--that when you get it as bad as I've got it, there is really little you can do to ever stop the kyphosis and fusion that occurs in the spine--there is a chance that none of this would have really mattered, but I think it would have.

If I could go back, I would do several things, with absolute certainty. First and foremost, I would get in the pool at the very first sign of symptoms and make sure I got in the water at least three or four times a week, more if I could bring myself to do it. By the time I finally did get in the water, a LOT of damage was already done, and even then finding a pool was very hit or miss, as I didn't take the step of joining a health club, or the Y, or anything. I lived in an apartment building that had a pool for a while, and we also had access to a pool at a local hotel when I worked in downtown Detroit, but I never used the pool more than about once a week, and that was only for a year or two. After that, I didn't get in the water again until I had my first hip replacement in 1994.

Since then, I've had good periods and bad periods when it comes to the pool. There have been two- or three-year stretches where I was very good about getting in the water a couple times a week, then there have been periods like the one I'm currently in, where I haven't gotten in the water at all. I fully intend to start getting in the pool again when I go on leave prior to my cataract surgeries in a few weeks, but only after the worst of the winter weather has ended too. I no longer kid myself--I simply will not get out in the winter anymore just to go to the pool. Well, let me qualify that--I won't START a pool regimen during the winter months, which is why I'm not getting in right now. If I can get started once spring gets here, force myself to get into a regular routine where I go twice a week, every week, then I might be able to carry that over into next winter. Even then, I know for certain that when the weather gets really cold or snowy, as it's been for about the past six weeks here in Michigan, I simply will not go to the pool. The older I get, the harder winter is on me, and I will no longer increase my odds of falling by going out of my house when there is ANY snow and ice outside. That's just the harsh reality of living in a snow belt state--there will be little or no pool action in the winter.

If I had started getting in the water 20 years ago and been religious about it, I know that one thing would be very different--even if my posture deteriorated the way it has, all of my muscles would be stronger, and I have a feeling that my knees would have lasted much longer than they did. I would probably have retained more range of motion in my shoulders and ankles than I have now, too. For anyone "new" AS patients out there who are reading this right now, I can't say this loud enough or too many times--find a nice, warm pool as fast as you can and start getting in the water NOW. The warm is important if you are already starting to experience pain and stiffness from your AS, as doing muscle stretches and other exercises in the colder water that lap swimmers prefer is often not easy and it can often lead to muscle pulls or tears if you overdo or rush things. A lot of YMCAs maintain warm-water therapy pools in addition to their main lap pools, so the Y is a great place to start looking. Also, check your local hospitals and see if any of them have physical therapy pools--most of your bigger ones have some kind of aquatic therapy available now, and those that do have their own pools usually offer reasonably priced access to the pool outside of formal physical therapy appointments. The one I used to go to had one open pool time during the day and also offered several open hours each night. If you live in a more rural area than I do, it might be hard to find any kind of pool, let alone a nice warm-water one, but please, please TRY to find some way to get into the water--even a hot tub will allow you to do some muscle stretches, although you'll need to be sure the water isn't too hot if you intend to exercise instead of just sit there and enjoy the jets. And heck, even just doing that--sitting in the hot tub enjoying the jet action in the hot water--is much better than not getting in the water at all.

Besides getting in the pool, the other thing I would do is to seriously attempt the no-starch diet. By the time I learned about the diet here at KA, almost all of my severe structural damage had already occurred. As a result, I couldn't bring myself to commit to the diet because, frankly, I love most starches and knew I wouldn't have the discipline to stay on what is definitely a difficult diet. Nor did I really have the energy, or the desire, to do the kind of regular shopping and cooking that I would have to do to really follow the NSD. I was--and still am--in pain when I did learn about the NSD, so the argument could be made that I could still benefit from committing to it, but since my pain is pretty much completely caused by the structural damage and ruined posture that I've already suffered, I strongly believe that the diet would not limit this kind of pain at all. I recognize that I could be wrong about that, but even if I am, it still comes back to that "desire and ability to shop and cook" thing and, most of all, that darn willpower thing, so I hold no illusions about my ability to stick to the NSD at this point in my life. Had I learned about it 20 years ago, however, before all this damage happened, and back when I had a LOT more energy and ability to do things for myself, I definitely would have tried the diet as a means of reducing the horrible pain I had started experiencing every single day. So, I would recommend that all new AS patients at least give the NSD a real try to see if it can reduce or end their AS pain.

What else? I probably would have spent more time laying on my back on a firm mattress or on the floor (back when I actually could lay down on the floor and get back up again) to try to keep my spine from curving and fusing. I was told to do this back then, but it really hurt to do so and I wasn't as good about following doctor's orders as I should have been, which is a shame. Again, I've been told that all the laying on my back in the world wouldn't have stopped what ultimately happened to my spine, but I guess I'll never know that for sure, will I? All I remember is that it hurt to lay on my back, so I did it for a few minutes each day, and that's all. I should have been doing it at least an hour a day, but I copped out. Don't make my mistake--if you've been told it will help if you lay on your back on a firm surface, then please, please do it.

That's all I can think of right now. I'm sure there are other things--I haven't even brought up what I might do different socially, or on the job front, but those are far more intangible things that I could dwell on forever, and I doubt that would do me any good.

A tough topic to address, but one that is important to talk about if it helps one person who has recently been diagnosed with AS.

Brad

Hi Bridget,

Well......you asked for it.....!!!

My AS started more than 30 years ago after a car accident, but I only got a dx about 8 years ago. Prior to that I was always told it was "in my head", "depression", mechanical back pain, etc.

Fortunately, a few months after the initial back/knee problems started, my mother suggested we go to yoga classes. I didn't think I'd be able to do the exercises at 1st but, to my delight and amazement, the relief was almost instantaneous! I had to do the exercises religiously, every single day in order to keep moving, but what a difference in pain levels and mobility!
Unfortunately my lifestyle was still quite severely restricted, but I did my best to go back to doing the things I could that didn't aggravate it, and tried to keep the others to a minimum, or give them up completely.....That eliminated disco dancing and most sports, sadly, and I've never been able to work more than a few hours a week since the accident, but at least I was able to maintain good posture and a straight, albeit very stiff, and now surgically fused from L2-S1, back!

I think, if I was able to change anything, it would be my attitude to looking after myself, and not doubting my own sanity. If I'd known what was really going on all those years I certainly wouldn't have persisted in doing things like heavy gardening - digging, mowing the lawn etc., and then suffering unbearable pain for days afterwards, but believing I wasn't doing any damage! Trouble is, when everyone else thinks you're imagining it all, or being a hypochondriac or whatever, you begin to wonder if you really ARE imagining it....
Had I known, I might not have ended up in hospital with a "70 year-old spine in a 30 year-old body" that needed repairing.

I know it's very hard for ppl without these problems to understand what it's like, but.....why on earth would you make it up??? That was always my thought

I don't know that there's much else I could have done differently.....I avoided the medical profession for many years, as far as my back probs were concerned anyway, thinking they'd probably have me certified! When it finally reached the point where I was no longer able to do yoga I had to give in. That was about 15 years down the track, and I was put onto NSAIDs. They helped a lot for a while, tho' I sometimes wonder if they didn't actually do more harm than good by "masking" the problems and making me think it was OK to go back to the gardening etc., until I finally, literally, broke my back and ended up in surgery!

What gets me is that, after all these years of doing the right exercises, trying not to lift anything too heavy or twisting my spine, sleeping with a board under my mattress and with only a thin pillow, I still ended up with all the problems I have now.....I guess it was just meant to be?

So....I think it's good to do the things you love, as long as you don't damage yourself. Don't live in fear of injury, but be cautious not to aggravate your "condition". Try and enjoy life as much as you can - sensibly!

I don't know if any of this helps at all?

Good luck,

Sue

I haven't had it quite 20 years yet, but it is getting there. My condition isn't nearly as bad as some of the others, as this affects us all in different ways. However, there are things I would have done differently...

I would have religiously stayed on my medications instead of having idealistic hopes that I could use homeopathy to cure this. This is what landed me in the hospital and helped to progress to bone growth I have on my spine (as I found out when I had an epideral when my son was born)

I would have diligently attempted to keep extra weight off (something I have struggled with all my adult life, and will continue to struggle with), this does make a difference, as when I lose a significant amount of weight, I FEEL the difference.

I would have educated my partners/friends better on this disease. Support is one thing we need from those significant in our lives, especially during flares ups.

I would have continued with my yoga, the stretching and flexibility helps as well.

I tried the NSD thing, and it wasn't for me. I don't know if the severity of the disease makes a difference or not. I have known people who have had great success with it, and others it make little to no difference in at all. (besides, as Brad can attest to, like him, I am just not willing to give up those starches I love so much!)

Jennifer

Hey there Bridget,
I wouldn't change a thing, really. I've had AS for over 30 years and I lived my younger years, keeping myself active in the pool. That is what kept my AS in check for so many years. I was smart enough to change my career path from machingist to aquatics, the only change I made to accomodate this desease, and glad I did. I was an athlete and always took my sports to extreme ends while I could. I took chances, yes, but now I look back, and I'm glad I did it all while I could, no regrets. I look back and see all the things I would have missed when docs told me to slow down years ago. Maybe I wouldn't be in as bad a shape as I am now if I would have taken it easy on myself, but, even my children would have missed out on some things too. So, the only regrets now is that I have made some surgical decisions the last couple years that I might not have made if I would have known the outcome.
Did any of this help or make sence?
Cindy

Bridget, I've had AS for going on 30 years, but wasn't diagnosed until 5.5 years ago (give or take a month or so).

Interesting you should ask this question at this point in time. I've been thinking about this a fair bit lately.

'Back in the day,' I was taking dance classes three or four times a week and was very active. I've always been anal about my posture (having heard my grandmother telling me to stand up straight constantly from a very young age), even going so far as to check it in shop windows as I walk down the street. I learned relaxation and breathing/meditation techniques in theatre school. Diet, not an issue - ate as a diabetic from a very young age due to my father's diabetes. I was already doing alot of things I do now, yet still showing the first signs of AS from a young age.

It wasn't until I became more sedentary (around the end of the 80s/early 90s) that I went into full blown flare, including iritis and all the other classic symptoms (1991-92). I wasn't diagnosed for various reasons.

Except that's not quite true. And this is why it's interesting that you should ask this at this point in time. I've had a memory come back to me just in the past few weeks. Not sure why I shoved it to the bottom of the brain pan until now, but I did. During my flare of 1991-92, I was actually told by my psychiatrist that she felt I have sero-negative rheumatoid arthritis and that I should go to my GP and ask to be referred to a rheumy. This was directly after I'd been told by my opthalmologist that I would never get arthritis, as I'd tested negative for it in my blood work (trying to figure out why I was getting iritis over and over). I ignored my psychiatrist's advice. Not sure why.

I can say that had my GP, chiro or opthie told me to see a rheumy, I would have listened. However, they were all treating me for the physical symptoms during that flare. And that's the only thing I can come up with - they were my physical doctors, she was my emotional doctor. I remember her telling me that I moved like someone with rheumatoid. I also remember feeling somewhat put out that she would stick her nose in like that. I discounted her opinion completely.

As if that isn't discomfitting enough, I had another,related memory recall fast on the heels of that one. When I was finally diagnosed with AS in Autumn 2001, I told my psychiatrist who reminded me of that discussion from 10 years before. AND I BLOCKED THAT OUT TOO!! It's as if I didn't want to hear this stuff from my psych - perhaps it wasn't her perview or something?? I don't know. Can't explain it and am driving myself nuts trying to figure it out.

So, with that piece of memory firmly back in place, would I have done anything different? Probably not. I was, as far as I can tell, firmly travelling the great river Denial.

Getting off my judgemental high-horse, I can honestly say that I was diagnosed when I should have been. I was ready in 2001 to hear this news and take positive steps for it. In 1991-92, I don't know that I would have done anything differently. I was a different person then, reacting differently than I would today. Had I been diagnosed in 1981/82, when I had been seeing a chiro for about three years and dealing with iritis, things might have been different yet again, as I was still under the influence of my parents then and they would more than likely have taken a very firm stance with me.

All of that said - if I had known then what I know today, I'd like to think I would have acted with a bit more wisdom than I actually did.

Hugs,