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Sacroilitis Questions

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Rheumatoid Arthritis
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Posted 3/27/2011 4:19 PM (GMT 0)
Those of you who have sacroilitis, what do you do to ease the pain? I can maybe lay down in bed for four hours before I am hurting so bad that I have to get up and go sleep in the recliner. I have been dealing with this for quite some time and it is wearing on my physically and emotionally. Does a particular stretching exercise help, massage, heat,ice, meds? Please just share any info you might have. I'm desperate!! Thank you all!
Posted 3/28/2011 1:33 AM (GMT 0)
Hi WantRelief, not sure exactly what sacroilitis is, but assume it is inflammation of the sacro-iliac joint (?). Anyway, I think from my FM (fibromyalgia) , I had left hip pain for about 8 mos. last year. The only thing that seemed to help was cold packs. I would put a cold pack on the hip and another below the knee (referred pain, I was sure). Finally it went away. I have very little residual now. We even went on a driving trip from Colorado to Minnesota during that time. I kept cold packs in a cooler and some days had to just keep replacing them. Other days were not so bad. Heat did not seem to help at all, just the cold packs. I think this was because I believed it to be a nerve pain (went down the leg and to the front/below the knee). I had a P.T. work with me, but he was too aggressive. Because my range of motion improved, he increased my exercise. I dont think he has worked with too many FM patients because he would have known that you have to treat us pretty gingerly or bad goes to worse (which is what happened). Good luck.
Posted 3/28/2011 2:50 AM (GMT 0)
When I develop sacroiliitis, my rheumy sends me for steroid injections into the SI joints. That will calm things down for 6-9 months. One time I went for an entire year between injections. I have good insurance which is good because the injections have to be done under fluoroscopy in the outpatient hospital wing. Last bill was over $5000. My co-pay was $25.

When my SI joints flare I can only lie down. The only way I can walk is using a walker. Last time I went to have my SI joints injected, my daughter had to drive with me lying down. I hate those flares!

I hope you can get some relief!
Posted 3/28/2011 3:16 AM (GMT 0)
Ides it's funny, i can't lay down. I feel much better when I am upright. It takes almost two hours in the mornings before I am moving somewhat normally. I have Crohn's disease so GI and Rheumy say it is all related, weird to me. I've wondered about have SI joints injected, kinda scared of that but also scared of Imuran and all these other crazy drugs.
Posted 3/28/2011 9:29 PM (GMT 0)
My problem is I cannot sit for longer than 15 minutes at a time without getting severe pain and muscle spasms. I type this standing up. I stand all day, even to watch TV in the evening. My only sitting is to drive the car. I have Crohn's too. I also have ankylosing spondylitis.

Investigate the SI joint injections. They work very well for some.
Posted 3/29/2011 9:06 PM (GMT 0)
WantRelief, are you able to do any physical therapy? I got a lot of great advice about my SI joints years ago from a physical therapist. I tried SI injections last year and didn't get any relief, but I am able to manage bad SI days with a good twisting stretch and keeping my hamstrings and groin muscles loose. I go to a weekly yoga class to try and maintain my flexibility. Having strong core muscles will also help support your pelvis and relieve the sacroiliac joint.
Posted 4/14/2011 4:37 PM (GMT 0)

WantRelief,

Have just seen your post (and on other thread).  Am sorry you're suffering so.  I have the exact same question as you so am glad you posted.

When it's really bad (i.e. shooting pain) the only time I'm in no pain is when I lie down.  However, this seems to make the issue worse as the shooting pain is so intense when i do try to move. 

One thing I find helps for overall maintence is taking tumeric daily.  Obviously you'd need to ensure it wouldn't irriate your stomach as I see your other health issues.

Oh and I have been given a prescirption for celebrex but was told to take with caution as per my stomach (past colitis and currently ahve a jpouch). 

I do put ice on my joints.  Not sure if it really helps or just numbs the pain (if joint pain...shooting pain is still there). 

I was given cortisone shots, but found the relief was short lived. 

I've been told to try physio but have yet to do so as I don't have much personal time for appointments.  And to be honest I'm a bit scared of PT of aggrevating things more.

For daily maintenance, i find taht I cannot sit for long periods of time.  I have a desk job and am constantly standing.  It's an issue when driving or in meetings.

One of my biggest issues is I have a daughter under 2 and lifting can aggrevate things, but I can't avoid lifting her. 

I hope things get manageable for you.  It's really tough living with this.  I was always an active person but yet can't even do regular exercise anymore without paying for it the follwoing days.  And even without exercsie, I'm in pain everyday.  Not fun.

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