I don't know very many AS'rs who take heaps & piles of drugs and/or hoping for a wonder pill to "take it all away."  The majority of my community has tried/does practice Physical Therapy, alternative therapies, simple exercises and even diet modifications.

For some of us, even that isn't enough to ease the pain.  So yes, we take medication. Specifically, medication prescribed to treat the disease, the symptoms of the disease and the pain that is an unfortunate reality of having this disease.

For some, the recommended NSAID therapy is enough. Some, like me, cannot take NSAIDs because of serious GI issues. Not sure if I'd call NSAIDs "wonder drugs" but I suppose for some they are.

The only "wonder" drugs I've tried are not pills but a shots or infusions (have you researched Enbrel, Humira, Simponi, Remicade?).  There are several and they are all serious drugs with serious risks.  Yet many of us take them.  Because at some point, if you do have this disease, you'll do anything... ANYTHING... To be able to function like a human being again.  And if these "wonder drugs" allow you to move, exercise, rejoin society and be a parent to your children, or wife to your husband... Some of us choose that over just waiting and hoping that this disease miraculously goes away.  Which it will not.

Long story short, exercise is CRUCIAL. But some of us simply cannot get out of bed without medication, much less exercise. So sometimes, it is a combination of both. And above all else, a serious determination to win the fight. And to win this fight, you need all of the weapons you can get... No matter what form they come in.

Thank you.

Nicola, I think sometimes your tone is a bit hard for some of us to digest. This site is meant to be a resource to get & give support so when you phrase your inquiries the way you do it can be upsetting to some. I know we all wish exercise would make things all better for us but unfortunately for most of us that's really not a reality. I know for me AS was a rude slap in the face, I went from hitting the gym 5 days a week for 1 1/2 hrs a day & doing yoga several times a week to waking up with herniated discs & inflammed si joints making it impossible for me to walk, stand or sit! My doctor ran some tests & I got my AS diagnosis & life hasn't been the same since. I miss more than anything being able to be as active as I used to be & suffer from some crazy FOMO (fear of missing out) so believe me when I say I push myself physically as much as possible to keep up with everyone but wouldn't be able to do that without Enbrel, NSAID's, & pain meds. On top of that I still endure crazy amounts of pain & try to suck it up & continue on. I truly hope that you continue to get relief from hydrotherapy & hope you can also open your mind to the fact we all endure & manage our pain differently. A little compassion goes a long way:)

Wow!  Sorry I upset, stressed, psd off the AS community that was not my intention. What I was meaning was when I come on this site or get email updates is that I see so many people talking about taking so many drugs, injections, but not much about exercise or other alternatives. I have been told that in USA & Canada they don???t have hydrotherapy classes or even believe in it, only have support groups, but UK, Europe, Australia & New Zealand do and are feeling alot better for it.I understand we need to take medication (and yes I do have AS ) and everbody is different and at different stages I???m not saying you shouldn???t take them they help us alot, I was just asking do others out there do hydrotherapy or exercises or just use drugs? Yes I do have AS, when I was diagnosed, I was in so much pain, I could barely walk, sit in a chair, I was sleeping 1hr a night, couldn???t even bend to put my own pants on, doctors having no answer, cortisone injections never worked, no painkillers worked, stressed, depressed & emotionally & physically drained, so yes I do understand the pain.Once I was diagnosed I started taking my 1 anti-inflammatory (celebrex) daily, I joined the AS hydrotherapy class. It hurt like crazy but each week it got better, I could not believe how beneficial it would be and actually work. If I get lazy and don???t go to this swim class I last about 3-4wks until I???m back to barely being able to walk and move and in so much pain I wouldn???t want my worst enemy to feel it. No pills stop or take the pain away for me.I still see my chiropractor ever few weeks and take my 1 anti-inflammatory a day. I now have AS in my feet and jaw, and yes swimming can???t really help with that. But it helps ALOT with everything else.  I???m going to start the starch free diet and keep a food diary and see if I notice a change as I do notice I feel horrible and aching after eating carbs, heavy, stodgy food, researching AS & IBS might be linked makes alot of sense, anywho  I???ll give it ago, anything is worth a try.Thanks, Nicola :)

I just have to say I take a ton of different pills & if I didn't I wouldn't be able to move at all. & yes when I'm physically & mentally capable I do a lot of different stuff in the pool.  But I also have to say without the drugs I wouldn't make it to the pool. I told my Dr once I take pain pills & muscle relaxers to exercise. She told me that's what I needed to do. I am 46 years old & have been fighting this since my teens even tho I wasn't diagnosed until my 20's. So I've been playing this game a long time. Do I wish a miracle drug would come along? Sure. Who doesn't? Do I  sometimes take pain pills & lay back down hoping for relief?  More than I would like to admit. But I do get up & move when possible. I think that's all we can hope for.

Try mmj/ pot/weed!! I use a ton of medical pot.
It helps so so much. Wait what was the question?
Oh ya, & I workout 3-4 times a week. The pot helps
with getting through the day w/out being a pill
zombie...

Hello all. I swim (especially when the weather is warm) and walk. As summer approaches, I plan to alternate between swimming and walking. If the pain is really bad, I take Tylenol for Arthritis. I also go in every eight weeks for Remicade infusions. The worst thing anyone with AS can do is be sedentary. Being active eases on some, if not all discomforts of AS.

Nicola:

I truly hope you didnt mean that as insulting as it came across. Hydotherapy is recommended by many doctors in the usa, but many do not have easy access to to a pool, driving taking bus can all be a challenge some days. I went back and read some of your older posts seems as maybe your AS is not as advanced as alot of people on here, so traveling can be an issue for many. So that is why the dr. Gave me a prescription for warm water therapy my husband and I decided to invest in a pool for our home we took our garage and put it inside it is called a H2O or like endless pool so I control the tempature and not have to drive everyday and it is inside so I dont deal with the weather. A 30 mile drive to an indoor warm water pool is not practical. I do take Enbrel injection and daily mild pain pills, I think the pool makes a great difference for me so that I can exercise stretch or just float on bad days. My AS effects every part of my body back neck feet knees hips etc. As you know from your post it has worked on your feet imagine that pain in every jopint of your body as it is for many of us here. AS attacks differently for all many slowly other unfortunately quickly so please take all this into consideration when posting here your pain is small area where many are fused do not have mobility to swim exercise and so forth maybe a little further research and what possibly you will have to deal with some day.

I sorry but people who don't know how we feel act like we can jump up and be super heros.  When you get to the point you body is taking over and you can't stop it and someone comes along and says be positive, what the hell does that mean.  They don't know how our life was before AS, and I think that people that don't have it should shut the hell up.

I do take heaps and piles of drugs, but have also tried dozens of other therapies inc. Swimming, walking and stretching.  And Myotherapy (a trigger point therapy with no injections, just pressure), relaxation techniques, hypnosis, massage, physical therapy, TENS unit, many types of counseling, chiropractic, physiatry, Botox injections (for headaches) - oops, that's a drug of sorts, and many more.  They've all either served their purpose for a period of time until they either no longer helped, exacerbated my problems, or the effort (and sometimes price) was just not worth it.  I also have Fibromyalgia, which exercise is also good for, but having AS and FMS makes for some tricky cause and effect situations where I (and my doctors) don't know which is causing what pain.  Note:  For you to imply that taking meds is a bad thing, well of course it is!  But since you don't know what other people are going through, what their lives are all about, what pressures and responsibilities people have, and on and on and on, I think you should rethink your implications.  Maybe your AS isn't as bad as others' AS.  Maybe people have had no success without the meds and each day is a continuation of the nightmare from the day before.

Before I was on any medication I could barely walk let alone swim, however now that I am it does enable me to swim almost daily which i think helps a lot and my rheumy says you have to try and keep moving to prevent any further fusion so that encourages me to keep swimming..I think the drugs and the excercise go hand in hand to trying to prevent this condition becoming worse and slow the progression down.

I'm very aware that there are no miracle drugs out there (got my a$$ chewed on this site for saying that to someone who sounded like they were looking for one.) But some of us are farther along than others and our ability to do exercises has long passed us by. So I kind of resent the implication that if we aren't doing many exercises that we are lumps waiting for a miracle cure.

Like the question or not I have found it has created a most informative discussion.  It answered a lot of questions I have and it points out to me how different this disease is for all of us but at the same time we have so much in common.  It is such an isolating disease and am glad for all of you who take the time to ask and to write and share your experience.

I have AS and did a strict NSD and was amazed at the results. The diet and yoga worked best for me over drugs.

Was just diagnosed with AS two weeks ago ( had a bout of anterior uveitis) after 7 years of sporadic lower back pain. My appoint to see the rheumatologist is a 5 weeks away, so I will continue to keep working out.  I have a couple of very painful bouts a year so far, but most of the time I feel fine. My last bout was the worst because my hip hurt so bad I had to use crutches to walk for two days! I just figured it was because I walked 30 miles in 2.5 day in San Francisco. I lift weights, do cardio, Pilates, and will try yoga at some point. I am still in the process of feeling angry and depressed. I have always been active and I eat healthy for the most part. I have been trying to eat more anti inflammatory foods and spices lately. My biggest fear are the meds, as I know the risks and do not want to take them. I already have an increased risk for breast cancer, so I don't want to add to that. Does anyone have any suggestions about alternative therapy and coping mentally?

I know that when I am in pain, and am told by everyone to just stop complaining and I exercise and I take my meds and NOTHING seems to work. I get a bit negative, sometimes ugly. I usually keep it to myself, so I can understand the questioners "tone" I am sure we all would like to know the best way to treat this and find some consistency in our lives. This is a very frustrating condition. Please allow and not take the wrong way. I dont see any stupid questions here. I may ask some at some point and I hope that I will be taken seriously with a little compassion.

Depending on what stage your at with the disease exercise and hydrotherapy will help but won't cure AS. If your in the early stages I would advise do as much as you can and keep loose . If you are older then all exercise and hydrotherapy is going to do is keep you more mobile but I find I have to suffer the pain as a result . I was diagnosed 30 years ago and hydrotherapy has always helped but ive still needed the drugs. Enbrel was brilliant but had too many side effects . Just remember this disease affects people in different ways and drugs work for some while exercise works for others .

I feel heaps better on days I exercise! A bit of cycling is excellent.

But first I had to radically change my diet to allow me to exercise more without pain. For me changing my diet has been incredible! Gluten free is commonly mentioned but I feel that a gluten free diet doesn't go anywhere near far enough (but is a good start at least, & might be sufficient for some people), as it seems it is the *starches* which you need to reduce to very low (thus gluten free still allows a LOT of things which I would not eat). And because it is bad to have too many simple sugars too, this basically means you end up with a low carbohydrate diet which you should follow.

Now before people start jumping up and down calling BS I shall point out:

A) Yes I do have AS indeed as diagnosed by a specialist rheumatologist and x-rays too, at points I've had it so bad I couldn't even get out of bed and stand up.

B) I'm not claiming it will work for everybody (but what is there to lose? When the possible gains are so massive! Thus I'd say everybody with AS should at least *think* about giving it a *serious* go, after seriously investigating it further for themselves to make up their own mind)

c) this is NOT a quick fix easy cure. It will take time for you to get enough practise in being strict enough on yourself and not in moments of weakness "cheat", and will take time for you to learn exactly what not to eat and what is ok (I spent HOURS at the supermarket checking the labels of everything I buy carefully, of course with time and practise this is now becoming faster and easier :-D ). Will also take time for your body to heal yourself, thus you should see improvements spread over many months I'd expect (I've been doing this since just before Christmas last year and I'm still experiencing gains from month to month, getting better and better). But I'd kinda expect you would see significant improvements within the first month or two. (unless you're doing something wrong? Like I said, this isn't an easy diet to stick to when you're surrounding be the food of the world all around you which is exactly what you should NOT eat!)

d) I'll repeat again everybody is different, thus I feel an important part is experimenting on yourself to test and see what works or doesn't for you personally. For instance I LOVE cheese, but I gave up all diary for months and months on end to cleanse it out of my system then I started eating it again as normal and watched my reaction.... None! I feel no different that I did before. Thus I'd put cheese into the "ok" column for me. I'm still in the midst of going months without eggs, but I expect after this month I'll then try the same with eggs and start eating them again while watching my body's response. You'll need to check yourself out like this for a whole range of foods.

E) don't treat this as a conventional "diet", which you'd do for a few months (if that). Treat it mentally as a major lifestyle change which you're going to carry on for the rest of your life, as if you find it works for you that is how long you'll be doing it for!

F) I won't deny, this is not the cheapest diet! Not compared to what I used to live on of porridge + sandwiches + noodles! Lol But when you compare with the cost you're currently experiencing (quality of life, lost hours at work, doctors, medicine) then I see this as a trivial cost. Although if you look around for the lowest cost meat and freeze it, and get the cheapest in season vegetables then you can make the costs very manageable (in fact I'm sure I'm eating cheaper than many other people! Even though I have a *massive* appetite as cutting out eating out & all snack foods are just two massive cost savers).

G) personally I've seen a very clear link in what I eat and don't, early on when I was not quite so strict (either due to being new and not taking it seriously, or maybe internally I just didn't believe in it as much as I do now) I would "slip up" now and then (for instance I went to a geek event with lots of free pizza on offer! I couldn't resist having some. But then the next few days I felt CRAP, in pain) only to feel awful afterwards. Only took a few of these incidents to happen before I learned to resist and not break my diet!

I) the benefits I've seen are H-U-G-E! Gone from taking a heap of all sorts of medicines, to only taking painkillers, to only taking one painkiller per day, to only taking painkillers on some days, to now when I have not taken a single painkiller or anything else in just over a month!!

J) Mentally I'm a whole new person too, no longer the quite the same drowsy / dull / slow person I was while on medication and back to my sharp old self. Able to sit for hours on end at the computer working for longer too, without the same back-pain and need for breaks after only doing short spurts.

K) Now I've left the most exciting point (for me personally as a former hardcore competitive athlete) for last, I'm getting back into my training! Cycling is now my regular form of transport again to wherever I want to go, along with a few hours most weeks of cycle training. Just starting into my running too, did my first running race in years last month and got a free t-shirt for completing it! :-D I've already paid for my entry into Ironman NZ in the first week of March next year, so now setting high goals for myself! Watching the Olympics has inspired me to set doing a Decathlon as a goal for next track season (which I suspect for a distance runner could be even tougher for me than an Ironman! Lol).

I`m sure the person who asked this question didnt mean anything..its just the way youve all read it..its obviously the way this person talks..I do lots of exercise, but for the record there are many ppl who do not do exercise and constantly try different medications hoping this will be the answer..you can tell this person just wants to know all your different stories of how you deal with this illness..just tell them how you deal with it instead of taking this comment as personal.

The thing that has helped me the most is eating as many of the right things as possible, blender drinks with veggies and fruits, all organic. While not real easy at first, if you research it really helps!

I do take a lot of drugs for my AS, but I do water aerobics 3 times a week.  It really helps with the pain and I don't have to take my pain medication as much.  I know there is no "magic pill" and I will have this the rest of my life.  
Incidentally, my Rheumatologist told me not to see a chiropractor as if you have the calcifications built up on your spine, chiropractic adjustments can break them and cause severe pain.  I don't know your circumstances but I thought I'd pass that along.  Please don't take offense, it's just what I was told by MY doctor. :-)

I do not take many drugs, and I find that when I can get up and get active it helps a LOT. That said, this is a progressive, incurable condition, and until recently there was little understanding of it. AS is different for everyone who has it, and not many can get by without some form of pain relief. I have successfully used the no starch diet to control most of my pain, but everyone has to work out their own way of managing their symptoms.

Hi Nicola,

I am mainly affected in my SI Joints and my rhemy believes that the reason I have the flexibility and mobility that I have is because I have been a swimmer for the past 30 years.  I had lower back pain and an episode of iritis in my twenties ( following a period of high stress) and then I did not have another exacerbation until I was 45 years old.

I believe that our bodies are a delicate system and it doesn't take much to throw them out.  When I turned 45 I had a hip replacement and 6 months later a back injury at work - I think that these two events triggered off my AS again.    I cannot get out of bed without waiting for my low dose NSAID to kick in in the mornings.  If I do get out of bed before this then I am in significant pain for the rest of the day.  I know that I cannot bend, carry, lift etc in the mornings.

I keep hoping that the AS  will go into remission again and that future treatments/medications will become more refined with less side effects - I hope that this is the case for my children's sake as this is a genetic disease and I don't want them to go through this as well.  In the meantime I exercise regularly but sometimes the pain is so bad I cannot consider this. I watch my diet ( being overweight is only going to put more stress on my joints) and all the other triggers that seem to affect my pain levels.

Good Luck - we all look for what works for us so we can get through the day.  I hope that you find what works for you.

Sheri

I walk when I can.. Would like to try swimming but don't often have the energy after working 40 hours a week or more.. I rest on the weekends often bc I don't have a choice. I have to recover from the previous week and rest up for the week to come. It sucks.. I'm sure I might feel better  if I started doing it. I should start it soon.

I work out three days a week now. I take no medications, but has modified my diet with enormous effect on my spine & joints.

I understand that different treatments help different people different ways .
Looking back to Nicola's previous posts and answers she apprears to be pushing her swimming and hydrotherapy.  If that works for her that is great, however she also appears to be coming across as condescending and belittling those who,do nor bow to her thought process of treatment.  I find swimming, well actually for me walking, moving and stretching in a pool is less,stressful,on my joints, but for me it is not the be all end all.  Excercise is needed but it must be done under close doctor/pt care.
Maybe after living with this disease for over 30 years makes me understand that new people have great hope and promise as we all should but sometimes their zeal can be offensive.  They tend to get carried away and forget this disease affects everyone different and there is no "cure" or 1 way to "fix" it and many of us have tried just about everything to treat our pain and experience should not be ignored or dismissed.
Just my .02

Wow! How did you get on this site? What a question to be asking some real very ill people! How do you sleep at night to be so arrogant? None of us need the stress of sarcasm, as stress is one factor that sets off our disease and makes it worse. So if you have nothing nice to ask or say or contribute you will bring smiles on our faces by leaving. If you do not suffer from this disease (or the many other ai diseases as you never have just one) then you have no clue how so many suffer. By the way, i wrote this in all caps for a reason.. I am relieving the stress you caused by yelling. Thank you for asking.

The tone to this question is just really unbelievable.  MOST of us do physical therapy, and many of us also work out in addition to that.  The pain and joint deformity is still there, though, and it still hurts like hell.  In fact, it often hurts worse after my workouts, but I keep doing it to stave off further deformity.  If exercise alone works for you, you obviously don't have AS.

Dear whoever, I have to add my two cents worth. Does this person, you really have AS. If you do I would suggest you research this disease and realize what your future is truely going to be. I'm 50 years old but my disease has progressed to the level of someone 70-80 years old and my spine is completely fused. I did physio and excersice as it was fusing so that I fused in an upright position instead of hunched over. I've dealt with serious pain from the age of 20 and in the past 13 years almost out of control. You are absolutely out of your mind if you think someting magic is going to come along and fix you to the point you don't need pain killers in your life. Again if you understand AS it gets worse with age it's just a matter of how long it takes to fully affect you. As some previous answers your qustion is insulting to people who have lived with this disease as it becomes full blown. Good luck to you and your attemot to stop what's happening without any drugs.

I am on meds and devote 1.5 to 2 hours or more to exercise every day.   I've turned into something of a gym rat and have my own home setup as well.   But the meds are what allow me to exercise effectively.  Swimming/hydrotherapy can be useful, but (very gentle at first) plyometric and land-based load bearing exercise should not be neglected- they can release and strengthen spinal joints as well as stabilized posture in ways its very difficult for water-based exercise to accomplish. Osteoporosis is paradoxically a risk for a/s patients.   Again, I'm compelled to add that it should be approached carefully especially if there is any fusion.

I do both. Humira is my wonder drug, because although I'm not pain-free, it has given me my life back. I wouldn't be able to exercise without it.

Nicola, I'm dissapointed that I need to remind you that this is not a place for judgement. I understand that you are frustrated by people who are too lazy to take proper care of themselves, wanting to just pop a pill to make them better, but I assure you the majority of people on this website do not fit that description.

Without enbrel, there is no way I could do more than half of what I do. Exercise by itself doesn't do much for me - without the meds, I pay for every activity. With the meds, I am able to keep pushing to be physically active (or to dress myself, cook, do laundry....). That said, I do know that inactivity makes me worse. There are some days when I just can't push through, but if I sit around and try to wait out the flare, it gets worse.

Swimming and pilates have done wonders, as well as stretches specific to the SI area. Remicade is pretty much a wonder drug in my book. Heaps of painkillers when required.

Yes, I do aquafit classes 3x per week and I walk 45 minutes daily. Aqua keeps me moving and no impact on bones and joints which is key. When I first started, it was pain and agony but I kept with it and now no problems whatsoever. Water exercises are a great option! BTW, I'm on Simponi and thankfully have not suffered any of the serious side effects. It has enabled me to 'get my life back'. Like the previous poster said, you get to a point with pain in this disease that you're willing to try almost anything in hopes that you can regain your former self and experience life again. I was really worried about taking  a TNF blocker but it has worked out for me. :)