Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group SI questions

Hello all, it's been a while! I have some general questions I'd like to throw out to see what's normal and what works for yall. I'm a 28 yr. old female, 5'7" 125 lbs, been DX'd with AS for about 10 years, on low starch diet with fantastic results, 800 mg of Celebrex daily (and thanks to the LSD barely any pain pills!) I was on enbrel, but I was always fighting an infection, so I haven't taken it in 4 weeks. Have tried other biologics, MTX, and various NSAIDS.

As for my questions, lately, I've been fighting various infections and my AS pain is significantly worse. Does anyone else notice increased pain when they are sick? My SI joints are both flared to the point I can barely walk. Another question, what the heck can I do to ease the pain besides my pain meds? Do those SI support belts help at all? I layer on the ICY HOT patches, and they help distract me a little. Any other ideas of things to do or products to try? Of course I sleep with 8 billion pillows all arranged just so under my hips/legs, but I'll take any ideas yall have.

Thanks so much!!

-Sam

I still had bad rib and hip pains (my SI is totally fused), even on LSD. I didn't experience significant relief until I went NSD. And even then, I kept having odd pains, which could get quite bad at times. I then discovered that dairy was the new culprit. When I got off dairy, I had full, and steady, relief from pain. You may want to try full NSD.

--Greg

Agree totally with Greg. I didn't really see any results until I went NSD. I am hypersensitive to even the slightest amount of starch. Case in point, I thought I'd injured myself recently by doing too much trail running only to find out that my melatonin supplements have tiny amounts of starch in them. AHHHHH!!!! The hip pain I've been feeling for a week was not a running injury but rather a flare due to starch. And I'm talking a tiny little bit of starch.

Good luck!

thus far, the only things that have really helped my SI joint are things that knock down the inflammation.

prior to drugs, ice was it, but that's when it was pretty good in between flares.

aleve does work but i can't take it due to edema and gastritis.

currently i wear a flector patch (dichlofenac) over my SI joint 24/7, changing every ~12 hours. have been doing this since april 2010. the first thing that has made a real difference. but it may be messing with my liver, then i'll have to ask others for advice.

cortisone injections help it too, but are short lived, the last one in sept 2009 only lasted less than 6 months, only a few months completely helpful.

and no, that SI belt did less than nothing for me. i thought "this must be a joke, right?" maybe it helps those whose SI joint disfunction is more mechanical than inflammatory, i don't know. maybe it helps others here? i wore it for several months to see if it might eventually help, but finally did away with it.

and core strengthening might be helpful, i don't know? i do it, but all its really done for me that i've noticed is make it so i don't pee when i laugh, tee hee! then again, maybe i'd be worse without it.

and even though i use the flector patch, i still have to be careful of how i sit, how much i sit (the butt spasms are a good gauge for me), how i lay, how much i lay. but sounds like you've figured this part out for you. for me, if i lay on either side, my SI joint aches. if i lay flat on my back with pillows under my knees, that is the most neutral position for my SI. and i've found i have to limit stair climbing, hill climbing, and had to give up swimming, though wondering if i could try it again now?

physiatrists, PTs, and chiro have been most helpful to me with the SI.

Hey Greg, thanks for responding. I was terribly afraid someone would say that. I thought I was doing ok on LSD, but maybe I have been cheating a little more than I thought. Plus I've been drinking milk like it's going out of style which I don't normally do. I should probably do another 3 day apple fast, it's been two months since my last one and be more diligent about no starch, not low starch. If I can at least cut out milk and ice cream maybe I'll make it. I don't think I can give up cheese. I eat cheese and almonds everyday. Hmm. Thanks again Greg!

Wow, it never ceases to surprise me how sensitive AS is to starch. Do you also limit dairy and or sugar? Thanks bob!

Hi Sue! Thanks for responding. I kind of figured the belts were a joke but I am desperate and wanted to ask. Does the flexor patch have pain medicine in it? I am trying really hard to limit pain meds right now if possible.

For me, it's not limiting sugar so much as limiting type of sugar. For instance drinking white grape juice doesn't seem to have an effect -- it has lots of glucose and fructose, neither of which ferment in the gut to promote bacterial growth. However milk has lactose, which is not efficiently digested by most people and will boost intestinal bacteria growth (of the wrong kind). Even soft cheeses and most store-bought yogurt have enough lactose to potentially cause problems. Dairy that seems to work out for me: home-made yogurt (made from lactose-free milk + cream) and butter.

On the other hand, people who have candida contributing to their gut inflammation end up having to watch even simple sugars like glucose and fructose. It's hard to tell from tests whether you have that problem (for sure the cheap candida tests are hoaxes); best way seems to be cutting out sugar for a while and see what the effect is.

flector patch is just dichlofenac which is an nsaid. no pain med in it, if by pain med you mean narcotics or tramadol or something like that.

i decided to give it a try because i've tried so many oral nsaids and if they work on the inflammation, they give me side effects, gastritis and edema mostly, that i just can't tolerate.

i was thrilled that i get no outward side effects (no gastritis, no edema, no tiredness) from it. it just works.

but it could be causing my liver enzymes to be elevated, don't know if that's it, just saying something to be cautious of. if you were to try the flector patch, just make sure you have your metabolic enzymes (liver and kidney) checked every few months. i already do for other reasons so we've been able to catch it early.

i've been amazed how effective it has been. prior to using it, i was becoming very disfunctional. couldn't go anywhere, couldn't do anything. got my life back with it. just hope i can keep using it, or the doctor can give me something to take its place if i have to stop using it.

takes a few days to a week to feel the full affect. then must be used continually and changed routinely to be effective for me. but when i do that faithfully, its wonderful relief.

except when i'm in a major flare, then nothing helps it but time and ice.

but the doctors are trying to help me prevent the major flares with a combo of drugs, supplements, and eliminating various foods that blood work showed i was sensitive to (eggs and dairy).

Arrggggh! I just checked my melatonin, and sure enough, it has rice flour. That could explain some of the odd pains I get during the early morning. For some reason, I didn't even think to check that. I thought I had checked all of my supplements.