Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group All Flared Up!

Hello Everyone,
I really need some insight here! My wife Sherry has had AS for awhile now,diagnosed in the end of 2011. Okay now heres my question< what is the deal with these "flares". Just yesterday (saturday 14th) she was feeling pretty good and wanted to actually get out and do something but it was raining sooo.. we stayed in. Today(sunday 15th) she could barely get out of bed,and then when she did she just come to the couch and sit down and said*with tears in her eyes that she thinks she hides so well*"It's gonna be another bad day. We are doing everything by the book, doing what the doctor says, even exploring alternatives. WHAT GIVES???Anyone else like this?I mean do you only get a day of relief every once in a while? Has anyone ever gone like a week without flaring and feeling awful? Sherry is a great person,she used to be so happy,ready to do anything!Is there light at the end of this tunnel of hell? Thanks everyone,I'll be waiting to hare from ya soon.

As people here will tell you, it is like spinning the roulette wheel all the time. Suddenly the ball falls into a flare slot and it starts. AS is very unpredictable.

Many of us, also try to hide a lot of the pain from our partners, since we don't want to upset others. Most people who don't have such a disease find it difficult to appreciate what is going on. A lot of people will judge those suffering to be "lazy", when actually it is the fatigue and pain that often grounds us.

we're all different in how often / how much we flare compared to when we're in between flares. and for me, that has even fluctuated year to year. when it first hit me, i was in bad shape for a few years. looking back, i don't know how i got through it, other than it was new so i knew no better, and i wasn't emotionally exhausted by it yet.

back then, i went to PT twice a week for months, then once a week for several years. The PT did lots of ultrasound and soft tissue work. slowly eased me in to mild strengthening exercises (therabands and gravity, weights were too much for my enthesitis and would cause me to even more easily tear tendons and ligaments) but the therabands and PT exercises slowly rebuilt my strength so the muscles didn't spasm quite so readily. and the thing that helped my neck the very most was swimming a few times a week in a therapeutic pool. and for the rest of me, walking as much as i could, on the days that i could. i also took a yoga class for a year, but gave it up because i was always pulling something in there, but continued with the yoga positions i could do, on my own, combining yoga and PT exercises (so many very similar anyway).

the last 2 years of that, i was also seeing a physiatrist and between putting me on zanaflex, injecting cortisone into my SI joint, and lidocaine into my triggerpoints, by the time we had to move, i was good enough to manage on my own for the next three years.

2003-2006, my SI flared about every 3 months, as badly as one can imagine every year or two. i'd go to the physiatrist for triggerpoint injections when needed. i'd go to the PT for ultrasound when needed.

then in 2006, things got worse again. the story gets a lot longer at this point. but to make it shorter, if you look below my name, you'll see all the things the doctors have me taking and doing.

and right now, i seem to only flare every few months with some very good months in between.

its either all the things they have me doing / taking, or its where my body is at this time.

and even with all this good care, and all these very good, compassionate, smart doctors, and they and me, racking our brains to figure out "why do you flare?", the flares still come, we are still trying to figure out the triggers of the flares so we can stop them, if we can.

but in the meantime, lots of stuff to feel better in between flares (see below) and right now, because the flares are several months apart, 6 day pred tapers as needed. if 6 days won't cut it and/or its more than 2-3 times a year, we'll move on to ssz or a biologic.

but when we're in a situation where we flare all the time, pred is not the best solution (not even sure its the best solution for someone like me taking it a few times a year - jury still out on that one).

so what to do? everything that she can.

when at our worst, there are things that can make us more comfortable. at our best, things we can do to make us stronger inside and out.

but like someone said above, its like spinning a roulette wheel, to me at least. after a dozen years of this, i still couldn't tell you what triggers my flares. and after a year of working with a very good rheumy, the two of us still can't tell you what triggers my flares. he has some ideas, but still, we don't know.

hang in there, there is light at the end of the tunnel. on her bad days, just be there for her. on her good days, go out and enjoy them with her. yes, it is highly unpredictable.

but if she is that bad, that often, then i'd think the doctors would want to try her on something like a dmard and/or biologic.

if i were in a perpetual flare, my doctor would have me on ssz or humira.

Flares can be caused in various ways, from something eaten, physical stress, emotional stress, or impact to the back (such as from a bump or sudden/excessive movement). Before I started the no-starch diet (NSD), one day without pain was a rare blessing. If you want more info about NSD, check out this site or just ask.

--Greg

Hi jmh...big hugs for Sherry... And for you too, for being such an awesome spouse!!! As others have said, flares are so unpredictable and many things can trigger them, it sounds like you are doing everything you can to comfort Sherry and quiet her flares but sometimes even when we throw everything we've got at a flare, it yields little to no relief, all one can really do is stay at it until something gives...hang in there, my friend, there is light at the end of the tunnel...and you always have us to lend a shoulder, a hand and a heart...!!!

Welcome to the unpredictable world of AS. My heart goes out to your wife! What she is experiencing right now is normal. I have experienced exactly the same thing and it used to exasperate my husband, but now we both understand this is an AS reality (and yes--I have hidden my symptoms from him in the past, hoping it will go away and it just gets worse).

The best thing you can do as a loving partner is be helpful and understanding. We can go from great to not-so-great rather on a dime, but there are some things we can do to manage the day-to-day and help prevent flares:

Medication
Proper nutrition
Exercise
Good Attitude
Good Support System

The first thing I recommend is ensuring she has the medication that works best for her. I was very pushy with my rheum. I didn't want his recommendation, I wanted about five of his recommendations, in order, "why", and also what ALL the side effects are of each. Something that works for one may not work for another, and of course, since dr.s are human beings they have biases.

I positively could not control my AS until I was medicated. I chose Indomethacin, despite the negative side effects, because my father has taken it for over 40 years with no side effects (he has AS - fully fused naturally). After listening to the meds list and all of their side effects, I took genetics into account and then rationalized this would be my best option. All the NSAIDs seem to have negative side effects. I found that I can get away with taking half of what he prescribed (75mg 1x/day, instead of 2/x day). So that counts for something.

Once it is under control, she needs to back off on certain physical things....as there are activities that may feel fine, but she'll most likely pay for it for the following days or weeks. Things like gardening for more than an hour at a time, jogging, simple things like cleaning out closets, etc.

Regular exercise in the form of long walks is beneficial. Cutting back on alcohol, eating more green leafy things.

The good news is that once controlled, flares will become less frequent in the coming years. I used to flare 4-5 x/year. Now it's maybe 1 or 2x/year, especially if I don't overwork myself in the yard or on a boat, etc. I might get an occasional mini-flare now and then for a day or two--but nothing like it used to be (bedridden, using bedpan for a week or two).

So if she finds a med to control it, it will even out in time, although it won't go away completely. It is simply unpredictable.

Kudos to you for looking for support! My husband has been my biggest supporter, and it means the world to me. I feel understood and less afraid, and I know that I can count on him to help me around the house and with the kids when I need it. And he never, ever makes me feel guilty about it. He is a saint.

Also, I never allow myself to wallow in misery or focus on my condition, or speak of it to get attention from strangers (I call that "woundology") because it doesn't help, and it only gives it more energy. Focus on the good things as much as possible and focus on the wonderful understanding and support. Soon, it will become manageable.

With meds I still drink coffee and the occasional cocktail without guilt. All in moderation. The meds are really what help.

Hope you two find something that works for her. Good luck!

--SusieMac
44 yrs-old

Hello there,

Where does she have the pain? My worst days where when my SI joints flared and I could barely walk... few things could really set it off... sleeping on that hip, beveled chair, walking up the stairs, or carrying something heavy.

Other items that can cause flares are stress, overdoing it, changes in barometric pressure and for me different foods I eat.

Hope she can find some relief... AS can be a struggle at times.

Take care,

Tim

Thanks a million everybody. I think it always makes Sherry feel better when she can read the things you say.Sometimes she says "maybe I'm crazy and nothing's wrong with me",and then I say "Welllll you got the crazy part right"(ha-ha) she just gets really ticked off about this flaring and everything associated with the AS.

while we don't know what triggers my flares (doesn't seem to be stress, weather, barometric pressure, food? (maybe the casein? but probably not. casein probably just causes the lower level inflammation between flares).

there was one time last summer where i fell very hard in the kitchen on the hard oak floor, and that "physical trauma" caused me to go into a very bad flare. but that was also around the time of year when i lately always go into a very bad flare. so the fall may have just triggered what was coming anyway. we'll never know for sure.

the trigger that my rheumy thinks, that i never see mentioned on here by anyone else, is (seasonal) allergies. no proof of it, but something my rheumy wants me to keep considering.

i think if we figure out our triggers, we can start to get this a bit better under control.

i think our triggers differ, person to person.

a lot of people (in the world, they are finding) seem to have gluten and / or casein sensitivities. for me, its not the gluten, but does seem to be the casein (as determined by blood work).

and the person above mentioned a list of things that help. meds are important for many.

others here have found a lot of relief with diet (no starch or low starch for many) though things like dairy and sugar should also be considered. a food / symptom diary was important for me to figure out which foods were flaring my gastritis and IBS, but for me, the arthritis doesn't come on that fast, so i could only tell through blood tests that casein in dairy and eggs were the culprits for me.

and to merely deal with the symptoms, ice is so important for me. heat for the lower level muscle spasms. but ice for the inflammation, pain, and more severe muscle spasms. when in doubt, contrasting heat and ice has great benefit. i still have not found a drug that reduces my pain as well as ice does......except for the prednisone, as it takes away the inflammation.