Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Next Step?

Okay fairly new to forum, hoping I'm not overstaying my welcome by posting about the same flare-up twice but I trust you all and am still establishing a relationship with a new doctor so I kind of feel "stranded" and you guys are a great help!

Going on week 3 of some pretty bad swelling in the SI area after stupidly trying to move a couch out from the wall and following up with my regular PT visit which likely made things worse.

Worse swelling I've had in probably 20 years but it did go down marginally with 2 dose packs followed up by a doctors visit where she tried a shot in the of steroids in the arm (one week ago today).

Symptoms did get slightly better, lump of swelling is still there but less painful and angry. Burning sensation in SI joints only intermittant.

Within the last couple of days I've been able to move around a little better and actually sit up for longer periods of time (even sitting on firm couch was too difficult/painful at teh beginning and could not find a chair that did not make it worse) but I'm still pretty miserable. I'm sure the stiffness isn't helping. My life is reduced to walking around the house in short bursts, going to the pool and doing some slight walking (exhausting but feels great).

My anxiety attacks have been brutal with massive muscle spasms and lots of twitching in the legs, both I've recently learned are side effects...considering the spasms are taking place the same places I hurt is just icing on the cake.

I've called my rheumy back to see if she can squeeze me in for a visit this week.

My question is do I just soldier on and see if this goes away with continued work on my part by moving around a little more each day?

The doctor I'm guessing will surely offer SI injections and I have to say I may be desperate enough to take her up on it. My body is generally starting to slowly feel better but I'm worried that this prolonged swelling (I'm assuming that is what the lump is) might have repercussions down the line.

I'm grateful for any input, I have had nothing but back to back health problems/issues for 2 years now and am physically and mentally exhausted.

Hello

I am just not at all familiar with swelling from the SI joint. I honestly didn't know an SI joint could swell. What does the Rheumy say about that ? This is a chronic disease and pain is part of it. I have had my SI joints injected before with good relief sometimes, and sometimes no relief. You have had a lot of steroids in the last month, so not sure that is your answer. Could you try an ANTI- TNF drug ?
I have anxiety also , and it can be terrible. Have you considered something like Cymbalta for the pain and for your anxiety.


Janet

I'm also not familiar with swelling of the SI joint. This is the first time I've heard of such a condition, which makes me think it may be something other than AS. Where are your muscle spasms: around your rib cage?

Is your PT versed in AS treatment? Not all are. I had one PT who suggested I use a back brace, which has been deemed detrimental to AS. We need all the muscled support we can get, and a long-term use of a back brace can lead to muscle atrophy.

Can you get any relief with heat or cold on your back? Exercising in the pool sounds like a good treatment, as long is the pool isn't too cool.

I think we all have to sometimes just soldier through the pain. I do suggest that you avoid any overly strenous activity until you feel better.

Take care,
Greg

Hello Ritachick,

Sorry to hear about the SI.. been there as well after over doing it in the past as well. When my SI was at the worst, I had SI steriod injections to settle things down... they help short term, but pain always came back within the week.

Some things I had to do for my SI when at worst:
- Avoid stairs or take the steps one at a time... good leg first.
- Sleep on the opposite side/shoulder of the SI joint with pain
- Get something to carry my work in (like cart) with wheels... could not lift anything heavy
- REally watch the type of chairs I sat in... anything that was beveled towards the center really hurt

Hope some of that helps you.

Tim

Hello, ritachick:



I would not approach the problem this way at all.

And I will say that in AS, we are most vulnerable to increased activity in those tissues recently injured because our Osps are exposed to our agent provocateur; within the surrounding lymph, so perfusion ensues.

There are myriad more things You could be doing, and I hope You discover them soon,

HEALTH,
John

I second what John says. Still sounds like a disc to me.

I wonder if the "swelling" / "lump of swelling" is that "marbly feeling" I know I get when my SI is inflamed and I get "fluid" in my joints. Its not a lot like "sausage digits" that some people get. But its enough that the PTs, chiros, physiatrists, and interventionalists can feel it. And have taught me what it feels like as well.

Maybe its not something that everyone gets? but for me, I can relate to it.

May I suggest Ice packs?

Even with the flector patches, ultrasound, nsaids, and even if I take a course of steroids (dose pack) or get a steroid injection, I still use a lot, and i mean a lot, of ice.

or alternating the ice and heat. sit on ice. take hot showers. but mostly ice.

for me, ice is:

1. a great pain reliever

2. a great anti-inflammatory

3. a great muscle relaxant

heat is good for relaxing muscles as well

as is a good muscle relaxant (i take zanaflex). normally every night. but when in a flare, i'll take it every 6 hours if i need to. it helps, but really, for me, ice helps the very most.

ultrasound through a PT can also help.

i tend to approach it from all the angles i can. all the things you are doing. plus the other things i mentioned.

it used to take 1-3 months to recover in the past from a bad flare.

Now it takes more like a week.

Also as Tim stated, every day I avoid the following as my SI has gotten that sensitive, but by avoiding the following, its often nearly pain free now:

things i avoid:

stairs, i always take the elevator

hills, i just try to avoid walking up or down them, thankfully i don't live in SF

sweeping, mopping, vacuuming, shoveling, raking (swiveling the pelvis)

sadly swimming is out as well (though if i didn't do breast stroke kick maybe i could swim?)

bending at a 45-90 degree angle at the hips for more than a few seconds

lifting or more importantly bending over slightly and setting down chairs

lifting anything too heavy

i know that sounds like a lot to avoid, but you just get into habits and its not that hard.

lucky my husband will do the house chores i can't do. not everyone has that luxury.

so, if i were you, i'd use some ice. maybe see a PT for ultrasound (manual PT, not someone who thinks you just need to exercise, as john says, you don't exercise something when its in an acute flare). and if there is an nsaid you can take for just a few days, i know Aleve will help me for a few days when i use it rarely, though others do argue that it contributes to leaky gut, but for me, sometimes i feel i have no choice. i'll do the steroids first, but if its been too recent since the last course of steroids, i'll use aleve for a few days. and still, always lots of ice.

did i mention the ice

Thanks everyone for your input it is greatly appreciated.

I've always had issues with "swelling" in the sacro area. Whether it's the joints themselves...I don't know. Right now it is very pronounced and concave. My first rheumy told me it might be the muscle itself standing out and avoiding the SI joint..not sure I can get on board with that.

In '92 when I was finally diagnosed it looked like I had a tumor on my back (over cleft and across sacro area) the normal curvature you get in your back was just about gone. It was really huge and awful looking and hurt/burned like hell. It took a long time to get that swelling down.

However, it is always a little puffy and swells slightly from time to time very visibly. I usually tell a new Rheumy how badly I can swell there and I can tell they don't really believe me...it's kind of funny to see there eyes pop when they finally see it...and then I tell them that's not even at it's worse.

The SI joints right now don't hurt too badly they just feel a little bruised. It's the lump of swelling or whatever it is that has mostly been hurting although I have to say it is less so each day and I have been able to skip putting the lidocain patches on it.

The backs of my legs burn and hurt some of that tends to come along with the swelling but I think I also aggravated the muscles when moving the couch. Those symptoms are slowly going away though especially after a trip to the pool.

I thank everyone for the tips on avoiding more pain/discomfort. I've discovered them all over the years and have learned to use them or suffer the consequences!

Thanks John. I've learned over the years when to move and when to rest, especially when flared. Non-movement for me is the enemy however I'm very careful if not to aggravate tissue/joints further by doing more then I should. For me it's usually move/rest/move/rest etc...

It's a fine balance and took a long time to learn.