Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Worsening of Swelling in SI region/Need advice

Hi All new to board!

I'll try to be brief.

I have AS & Fibro was diagnosed with both at 24 (45 now). In my teens and early 20's the swelling from the AS was pretty bad on and off which would lead to bursitis. However, luckily I have not had damage as of yet (accept slight SI). Mostly over the years it seems the Fibro has been causing most of my pain and discomfort...although it can be hard to tell.

It's not unusual for me to have some slight swelling/puffiness/soreness over the SI joints. But if it gets out of hand some rest usually takes care of it. Plus, I'm on Voltarin for inflammation.

Well on 3/13 I stupidly pulled my couch out slightly from the wall and realized right away I aggravated something. Back of my legs starting hurting pretty bad followed but some pain in lower back.

Followed up with Physical Therapy session which I started about a month ago for slipped discs in neck...I really think that session just aggravated things further.

A few hours later my entire body was screaming in pain and the lower back was visibly swelling and stinging/burning. Not a good sign.

I immediately start a dose pack. It seems to help but by the following Sunday seems to be getting worse again.

I'm on a second dose pack now and swelling is still there although I think it is helping to keep in in check.

Here's my questions?

Did I wake the beast so to speak? I'm so worried that I've "woken up the AS" which has largely to the best of my knowledge been relatively quiet.

Also, I have a relatively new doctor who advised me over the phone to come in for a Cortisone shot in the SI joints...my old doctor has always been anti-injection. So I'm more then a little nervous about that option.

What are my options? See if it goes away on it's own? Shots? more dose packs.

To say I'm freaking out would be an understatement. I'm having the worse anxiety attacks and am taking Xanax to control them.

This has been a very bad week for me I would welcome any input. I'm in tears just writing this and just need some support!

Hello ritachick !
Welcome to the kickas community. I am sorry to hear you are in so much pain. Do not be so worried though, it is not going to help ! If the AS has been relatively quiet up until your mid-40s I would see that as a good sign, and it will probably remain that way. You have obviously damaged something by pulling that couch, but whether or not it's linked to AS it won't be irreparable. So you need a lot of rest, and to get the inflamation down with whatever helps : NSAID, water exercises, diet..., whatever appeals. Concerning the shots, I know my cousin (also diagnosed with AS) has had a couple and has reacted well to them, she has been relatively pain-free for a few months now. I've heard that there is a school of thought that they could damage the joint but I think you need to have them repeatedly. So personnally I'd give it a shot (no pun intended), I don't think just the one can do much damage. YOu could also go and see another rhumatologist and get a second opinion.
Also, is the pain quite bad when you wake up and then seems to get a bit better as the day goes on ?
Anyway, stay positive, there are lots of options out there to manage AS !
And you'll find all the support you need on here !!
All the best !!
Marion

Rita, hi and welcome to KA.

What you describe sounds an awful lot like SI pain to me, and from the pain shooting down your legs, it also sounds like you've aggravated your sciatic nerve. Never fun.

Did the pain shoot down your legs from your butt? Do your sitbones (really, called the ischeal tuberosity) feel like they're going to poke a hole through the seat under you? Then, it's probably sciatic nerve involvement, which is a classic SI symptom. You're on a whole lot of anti-inflammatory action, but it sounds like you need to ramp it up a bit. Try sitting on an ice pak of some kind. And try alternating it with heat to relax the muscles in the area. 15 minutes cold, 15 minutes heat. You'll know pretty darned quickly if the heat is going to help. At least, I usually do.

I find that sitting with my feet up and a pillow under my knees helps take the pressure off my lower back. If I have to stand for any length of time, I find that having a footrest for one of my feet helps take the pressure off.

Do deep breathing, relaxation breathing. This will help lower your stress level and will help deal with both the pain and the anxiety you're experiencing.

And as little as you want to, every so often, get up and walk. This will help keep the area from stiffening.

By my count, it's been ten days since you did this, so you need to get the pain and inflammation under control pretty darned quickly. I've never had a Cortisone injection, but many here have. I know it's helped a ton of people. You might talk to the new dr. about a new NSAID, as from your condition, the Voltarin doesn't seem to be helping.

You should be stretching and doing range of motion exercises every day. Don't stretch your lower back until this flare is under control, but relaxation exercises and walking should take care of that right now.

You cry all you need to with us. You aren't alone anymore.

There are all kinds of things you can do to help yourself, some will suit you more than others. You'll figure out what works on the Spondy Monster through trial and error. This place is great for learning what your options are and learning to assess them to see if they are right for you.

Warm hugs,

Thanks Marion! I have been alternating resting and moving about. With some trips to the pool.

I'm just so worried about the shots as I don't want to cause further damage but realize I need to get the swelling under control so may not have a choice.

The pain actually is mostly in the swollen area, seems to me the tissue itself is just sore as hell and VERY angry. Not too much sciatica going on thank the lord.

Pain/discomfort seems to vary through out the day depending on how much I move around and such!

I am definitely thinking about going back to my past rhuemy for a second opinion as he's known me for over 20 years!

Thanks so much for reaching out I don't feel so alone any more!

Thanks Inanna!

To answer your questions I've had some slight burning down the sciatic in the left leg but it seems to have gone for now. The pain in the back of the legs felt to me almost like when you over do it exercising and it's just sore as hell (fibro?). No feeling like the "poke a hole" your mentioning although I do believe I've felt that in the past.

Been keeping up with range of motion exercises as best I can and tooling around the house and walking outside a bit here and there/and light pool exercising to keep everything moving.

Thanks so much for your input...! It's truly a blessing to be able to speak with others who go through similar things!

I'm just so mad at myself about that couch and then not cancelling my therapy appointment...my kingdom for a time machine!

Ritachick - a shot in the SI area will not do any damage. It could well ease the inflammation. Cortisone in the shoulders is the area to be very aware of. Shoulders are tendons and ligaments. Tendons and ligaments can be injured by cortisone. BUT even in the shoulders, a single shot will do no damage. So, don't be afraid of 'a' cortisone shot in yr SI area.

Now, as far as voltaron, ensure you take a stomach protector. NSAIDs have a known risk of upsetting the gut when taken over a long time period. And yes, there other other different pain killers and antiinflammatories that can help.

Suggest that you contact yr rheumy, discuss and decide a best course of action. Hope you are through this soon.

Take care -

I might be completely wrong here but one of the main characteristic of AS pain is that it is at its worst when you wake up and slowly eases off as you start moving about. I used to be working as a waitress, and I'd have a very big limp when I was serving breakfast, but would move around just about normal for lunch service. So I'm thinking if your pain doesn't follow this pattern maybe it's not linked to AS and you just pulled something ??
Any case just get the inflammation sorted out, and then you can have a think about what long-term strategies to put in place, if any are needed.
Keep us posted !
Marion

Hello, ritachick:

It would seem that You are in a flare; the cause is always the same (AS is a foodborne illness). We do things that aggravate AS locally, but it is always active (lurking) at some ambient level--systemically.

I always broke my flares by fasting, and wish I had never even heard of NSAIDs, which greatly accelerated my AS--obvious, once the cause of this disease is made clear (gut bacterium).

Sometimes it can take five days water-only. The Edgar Cayce Three Day Apple Diet can also work wonders in four days.

Regret drugs seldom actually 'treat' AS, but only mask symptoms at best. Treatment is diet.

HEALTH,
John

Hi


This is obviously an injury, in the SI area . I am not sure why you are taking steroids for it X 2. It needs time to heal and steroid decrease our ability to heal. The Voltaren is fine, and physio may not be what you need right now, unless they are doing Ultra Sound. Ice and heat is a must right now. Don't underestimate the use of ice . I have had SI injections about four times over 30 years with good relief. I would much rather so that then take an oral steroid.

Xanax is not a good idea for anxiety. Have you had anxiety for long ? I take an antidepressant for depression and anxiety works well. The antidepressant helps block pain really well. They don't all do that however.

I just think you need to give this more time to heal. Lots of ice is a must .


Janet

Welcome Ritachick!...Been there done that...last time it was a foam mattress...We've all likely done it at some point...You think, oh I can do this...Now all my furniture is on little feet and I have wood floors so I can slide it around.:)

I have had to have quite a few cortisone shots over the years and it does give me quick relief, I don't have any damage from the injections...Just the disease...but I understand your worry...Makes sense if you still have access to your old Rheumy to be reassure about taking the injection and or anything he/she would recommend.

Sounds like you are doing all the right things...like others have said it will take time, I would keep at the gentle pool movement and alternate heat and cold...If you can breathe...You'll be ok...Think back to other times you've flared and do what you have done to get thru.:)...This too shall pass.
I totally understand the confusion...I too have AS and FM...and the pain is so confusing...seems if it's not one it's the other...
Take care, hope things settle quickly.