Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group ? Those w/fused SI joints

Err, no, I've never had radiofrequency ablation... haven't tried a topical nsaid cream thingamee, nor capsaicin. Back in the years I was fusing, I had never heard of these things to ask and they didn't offer any sort of treatment outside of... nsaids (or IV steroid, which they only tried once briefly and yanked me back off).

Mine never relented from 19 - 42 y/o, so I tuffed it out, (not Alan TUFF-ness of course because he is actually very seriously tuff! and can hide pain better than moi. I aspire to be that tuff and have been practicing!) Then Remicade saved me from that daily pain. Now it only lurks, waiting to pounce if I'm late with an infusion or I seriously aggravate it somehow. I only had heel pain once in a blue moon and was spared the terrible feet pain you had all those years. Never stood barefoot in the snow!

I wonder how it would have been if I'd been a more efficient fuser, but then the hot poker pain morphs into headaches and pain from the lack of shock-absorption (which Alan knows too well), so I'm not sure we ever win... unless we can maintain silliness!!

You are such a problem child.

Right, next time you go out jogging let me know and I'll join you - we could race!

I have seen the smirk!

Hi There


I consider me to be more textbook case. I don't seem to have much pain in my SI any more. It was wicked for years, and finally at about 45 it settled down. I do get a dull ache, but nothing like it use to be. I also had terrible rib pain at night and that has also stop for about five years now. I only take Omega 3 Fish oil daily now 6,000 mg a day. If I don't take the Omega 3 I get joint pain quite quickly.


Hope this encourages you

Janet

Hmm.. my SI joints are totally fused and yet I still hurt. Every morning I wake up and swear I feel like I am in my nineties and have to fight my way back to 46. It may be that those particular joints are fused and not noticeable now but I assure you there are plenty of other joints that are still fusing and still causing pain for me to worry about just 2 joints. All I can say is thank God for medication because it is the only way for me not to be on disability.

Can't address the fusing question.

Haven't had the nerve ablation, but due to Rumble's good results with it, its something I'd consider. I hope you and your doctor can petition to get it, if that is what you want.

I started wearing a flector patch over my SI joint a few years back. I wear it 24/7 except when in the water (showering, etc). I change it every 12 hours. If its feeling good and I only change it once a day, I start to feel it. The flector patch is very helpful day to day, when the SI joint is just cranky. The flector patch is no match for a flare.

The Humira has helped it flare less.

Still, when it does flare, if its moderate, I sit with ice, lots and lots of ice. That helps it.

If in a big flare, the only thing that really works is methylprednisone.

I've had the cortisone injections. Back in 2001, it lasted a year. Back in 2009, it only lasted a few months. Decided once a year for full relief was worth it but every few months for only partial relief was not worth it. Then found a rheumatologist who started me on methylprednisone for flares and then finally Humira. Nothing works like those two things, but the flector patch is a nice addition.

Plus I've given up swimming (too much torque on the SI for me). And I don't shovel, rake, sweep, vacuum, or mop: nothing that rotates the SI joint too much; yes, am lucky I have a spouse that will do those things while I do the things that are easier for me.

Until I started the Humira, bending over at about 45 degrees to for example water the plants would kill the SI joint within just a few minutes of doing that. Now on Humira, I can bend again when I need to, though I still try to prevent doing so.

Sorry your SI joint is giving you so much grief. Hope you get some relief soon.

Like Rumble, not sure I'm fusing, not sure I will ever fuse, looking at those relatives in my family who have had this / have this, fusing doesn't seem to be a part of it, so far as I can tell…."just" inflammation and joint damage and osteopenia / osteoporosis (from all the inflammation).

jogging...........you............hahahahahahaha,,,,,,,,,, I would beat you hollow,,,,,,,,,,,so there

I think we're opposite cases--my heels/feet were first to get hit and it was only after enbrel came along that calmed that down. Then a relentless attack on SIs. There's been pain in other places too but I've found those 2 sites to be the most disabling. I wondered if enbrel was losing its effectiveness but it seems that instead my SI joints are finally fusing. For your feet--have you tried standing barefoot in the snow and howling at the moon?? Highly recommend it!

I think some diagnotic tool is needed to look at the SI joints. It's been my experience that xrays are used because they're cheaper but there are plenty of articles on use of MRI, etc. Maybe someone here in the medical field can better answer this.

Hello, first let me say:


The problem with this disease is that in my experience different joints/sites can have relentless pain for many years before changes can actually be seen. For sure ask your dr questions.

I've followed your experience with RFA, had read up on it several years ago, was hopeful that it would help, was all set up to go, and for some reason insurance denied it. Well it was already bad but if possible has gotten significantly worse the past 2 years. So now that I'm back to pain mgmt they indicated my insurance would require a new xray to even prove SIJ injection was allowable. So yikes the new xrays show great change in 2 short years therefore I'm hoping I'll be able to try every tool available.

They asked me if the right hurt worse than left because it apparently looks worse but no they both hurt equally and the right was the one they had trouble getting a needle into. Is voltaren gel over the counter or does it require an RX? I'm hooked on capsaicin even if it only helps a little.