Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Daily pain level vs. flare

I'm pretty new here, and have spent most of my time trying to play catch up - so please pardon if this has been discussed to death.

My daughter was diagnosed with undifferentiated juvenile arthritis (with the rheumy saying most likely AS) about two years ago. We tried the recommended treatments for the first 9 months, which seemed to just worsen her situation. So we've gone the alternative route for pain control. But here's what I wonder sometimes: what is the typical daily pain level for someone with AS?

She always has the back pain, either in her si or thoracic region, at a daily level of about 4-5.

Since the introduction of a low starch diet, most of her migratory joint pain elsewhere has gone away...no more daily report of "it's in my right ankle. It's in my left hip. My hands hurt today. My knees are killing me."

She used to have really bad days, which I would consider a flare, where her pain level went as high as 7-9. Again, pre-low starch.

But I've seen others refer to their pain level getting better as the day goes on, as far as stiffness goes. Since she doesn't seem to experience that, I wonder how many of you would report an improvement over the course of the day?

Also, how does your daily pain level compare to while you're in a flare?

It's just one of those things they don't seem to tell you in all the reading materials, because obviously it's different for each person.

Great questions, and I am sure we are all different.

For me, I wake up most days feeling a little bit stiff, so I just get out of bed slowly, stiffness in rib cage mostly, but once I walk down the hall and get outside with the dogs, the pain is gone.

I have the least amount of any pain, pretty much pain free the first half of most days, then if I am working hard, catering, preparing a lot of food for an event, and hunched over the kitchen counters, the pain slowly creeps in, mostly do to posture, being fused up my spine and the compensating my body and muscles have to do each day. I would rate most days 0 to 1 on pain (10 being hell).

Then if it is a hard work day, I creep up to a 2 or 3 by the end of the day, but not always that bad!

And if I eat starchy stuff (like cauliflower, zucchini, fried brussel sprouts, you know "living life on the edge" over here!) I might wake up the next day with more stiffness, and possibly a stabbing pain in the upper back, rate it like a 2 or 3. I can sometimes get away with one slightly starchy meal, maybe some cauliflower, but after a few days in a row or cauliflower/carrots/zucchini the pain really does creep back into to be at a 3. And it can take a few days to phase it out. It will turn into an overall body pain that is like fibromyalgia, just general achyness & fatigue compared to a normal day.

To me a true flare is when I hit level 8, pretty close to living hell, getting dizzy from pain. The last time I was at level 8 was before a 14 day green juice fast almost 2 years ago, was also eating low/no starch then too, but had only been at it a few months.

In the past year and a half, I don't think I have really gone above a level 3 much at all. But I have had active AS for 14 years now, and in the early years (pre-diganosis) I was easily at level 8 many different times, where sciatica/SI would kick in so bad, I couldn't walk, I can remember just lying in bed during a couple different 24 hour flare-ups, unable to even turn over, and would spend hours dreading moving, and eventually had to crawl to the bathroom, but haven't had anything like that in so long now!

If I hadn't all this damn fusing in my spine, SI, ribs, I swear I would forget I even had AS most days. But now that my body is a bit contorted, I just don't get around as fluidly as I did so many years ago. Also, I get shortness of breath these days if I push it too hard, as my ribs are fused and no longer expand when I breath. But if it weren't for going too long w/o this diet, with no idea what was causing all the dreaded pain all those years, before finally getting properly diagnosed, I would be unstoppable!

The low grade "pains" I now feel on a daily basis seem to just be from my body compensating for damage already done, but yes, I do also sometimes get a very low grade inflammatory response that will set in for a few days at a time, and this would be just general body fatigue and achyness, but nothing I can't push through.

The pain level gets better during the day because you get really stiff while you sleep. It can take quite a bit to loosen up. Sometimes a hot shower will do the trick, but other times it won't help much. Severe changes of weather make my pain worse. I can hurt about two days before a rain storm. It's good for letting the Weather Channel know when they are wrong. The pain from stiffness showed up in my late 20's/early 30's so maybe she hasn't progressed to that point yet.

You might see if her doctor tested her vitamin D levels while her knee was hurting. I always know when mine is low because my knees start hurting. I got to the point that I couldn't really walk for 9 months until my doctor finally saw I was deficient. I thought my AS just progressed to my knees and I actually quit my job because that was the last straw to let me know I needed to take the time to figure out if I could improve things.

I don't know how long she has been treated for arthritis and on meds, but a lot of my peripheral pain (or migratory pain), especially in my hands, was actually caused by an anti-inflammatory they gave me for my AS. I think it was sulfasalazine. The Dr switched me to Mobic and that seemed to help my peripheral pain and my SI joints (though I think my peripheral pain improved just because I quit taking the other med).

I really don't like those pain rating things they make you do though I could see how it would help you understand how your daughter is feeling. I have a pretty high tolerance for pain, but even still I think 10 would be cut your arm off pain. I used to rate myself close to 10 until I had a root canal gone wrong where they got fluid into the sinuses which causes extreme nerve pain. I cried all night like a baby... and not just tears. I do get... dare I say... "please kill me now" pain with AS. But that's because I have headache involvement when it's in my neck and shoulder. I don't dare cry then because it makes the headache worse and I start throwing up from the pain

I haven't tried the low starch diet yet but I'm about to. I'm glad it seems to work for her. I'm also happy that your daughter has a rheumy willing to acknowledge that a young female most likely has AS. That's a rare thing. Most of us don't get a diagnosis until our 30's. Hopefully that means you have a good rheumy and that your daughter isn't already that bad.

Welcome, it's a great group!

Sharon

Well I have to take drugs before I get up just so I can walk...one of those is immidiate release oxy...I wait about thirty minutes then get up I'm fine for a few hours but as the evening goes on or I know we have plans I have to take more oxys and prednisone and I am currently on the biologic Actemra...I have had this for 23 years and know there is damage that will never be healed I'm just trying to improve my quality of life and hopefully keep walking
Lisa

I could go into lots of detail on this, but I'll keep it short for now:

my pain levels between flares are a lot better since starting Humira.

my pain levels when I flare are often better than they used to be since starting Humira.

But in a bad flare, the pain is so much worse, sometimes nearly unbearable, whereas in between flares its generally bearable.

I hate to give numbers to my pain, so I just think, can I function like this or not? can I put it out of my mind or does it keep making itself known. Bearable? unbearable?

And as you said, we're all different. I am a bit stiff when I wake, but nothing to write home about, I get in the shower and that's all it takes to get going on non-flare days. But as the day progresses, my body kind of wears out: if I sit too much, stand too much, its worse. So, I wake with some pain, a shower and I'm a bit better, and then i go downhill throughout the day, typically.

On flare days, I just hurt all day long.

My pain was always at an 8, no lower but certainly higher. I did want to die from my pain. The Dr. said that by then I had what is called intractable pain. Pain where no drugs can longer bring the pain down to a comfortable level to function. I then had a pain pump put in and have a constant level of medication going straight to my spine and it blocks all the pain (except for feet and hands) before it hits the brain.

It sounds like you are doing the very thing you should be doing for her. Take her off of starch and keep her off of it. Do all you can to be proactive.

Flares are when something hurts all the time, usually in a specific area. I can still tell when my feet are flaring or my hand is flaring and still need a course of steroids.

When my symptoms were worse, before starting mobic and sulfasalzine, moving made the pain worse. Now, when everything is much calmer, moving makes me feel better UNLESS I overdo it, and then I feel worse. I think for me, when I had more inflamed joints, even the slightest movement irritated them more and triggered more inflammation. Now that nearly all the swelling is gone, they are not so easily irritated, and moving loosens them up and makes me feel better because I mostly just have stiffness now, but not pain. I used to be confused when my dr asked me if I felt stiff, because I just always felt pain and inflammation, but now I definitely feel stiffness as the primary symptom. My pain used to also be constant throughout the day or it would get worse. Now with the meds and diet, I either get better as I move more or I get worse if I do way too much.

When I'm in a flare, my pain is much worse. Like from a 1 or 2 to a 7. The joint feels swollen and I can't use it for everyday activities without irritating it further.

Thanks for the responses, everyone. It's hard for me to figure out what is her normal, vs. what they give you online and in the dr's office! So all the input is greatly appreciated. I only have a couple more years with her at home to work on diet, and then we'll see. As of right now, she doesn't show damage on x-ray or MRI, but the rheumy can feel it...so we're trying to control the rate of damage now with diet, and pain levels with no-side effect methods.

I hope she gets the help she needs and listens to you with your experienc
Lisa

What I personally consider a flare is when I am exhausted, my regular pain is worse and I hurt all over in places that don't always hurt. That is when I overdo it and with wet cold weather changes or just wet changes in the warmer weather.

My pain is not as severe since surgery. Usually about a 6 now but meds will take it down to a 3. I can do this.

Best wishes.