New Dx: Sacroiliitis

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NoblePath
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/16/2008 12:08 PM (GMT -7)   
This is about my experience with this condition, sacroiliitis. It all started about 7-8 mos ago. When I was walking at work, (I'm a student nurse and I'm 23) I'd feel a sharp pain shoot down that joint and only lasted a few minutes. I'd even go weeks and it wouldn't happen. During my finals week, which was the middle of May it became a daily occurrence. I went to see the campus physician who diagnosed me with sacroiliitis on my left side. I was utterly shocked, and I went home to do some research on the condition. It was very nerve wracking to read all the info about the condition. I first thought, "Will this affect my career?". "Will i eventually be a burden to my family?" It was very upsetting and I had a vacation planned in just a few days. She gave me a steroid shot and I took a steroid dose pak. It was a little better, and the whole time I've been able to work and walk. It just bothers me a lot of the time. I just worry about it getting worse. I saw an orthopedic doctor who took an xray and said everything was fine and as long as I can function I should just take Advil and "live with it". I was very disappointed with this idea, and went back to the original doctor who recommended physical therapy. I got evaluated today and they noticed that my pelvis is rotated which contributes to the problem, and they isolated a certain muscle that they think is involved. I feel better that they found a problem, because now hopefully they can reduce the discomfort. I'll be getting therapy for 4 weeks, and after that I have to just hope that it will not get worse or interfere with my schooling, career, or my life.

Krissi

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/20/2008 8:28 PM (GMT -7)   
Hi Krissi,
 
The title of your post caught my eye, and I wanted to offer some support to you.  I have bilateral sacroiliitis. Affects both sides for me.  It's clearly, the most excrutiating pain imaginable, isn't it!  I can hardly straighten up some days, and rolling over in bed is near impossible sometimes. There are days when I just want to cry it's so bad. 
 
It does affect my career and lifestyle.  I'm a wedding photographer..... I'm in my busy season now and it loves to flare up on me when I'm workng hard.  It's brutal.  So I understand what you're dealing with in that regard.  I too, have lots of months where it doesn't bother me at all, then wham-o!  I get hit hard with a flare up, out of the blue. 
 
What has worked best for me so far is physical therapy (good to know you're going!), and a topical steroid cream.  It's super powerful stuff.  You can only get this dose by prescription.  But it works amazingly well.  I can't get the steroid shots because I'm on blood thinners.  So if you want to try an inexpensive and very effective treatment, the steroid cream (10% cortisone) is really good.  I also find that a slow walk is helpful.  Just keeps things from tightening up. 
 
My diagnosis came from having a bone scan done.  I hope you get relief quickly Krissi,
 
All the best,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Brie1979
New Member


Date Joined Apr 2009
Total Posts : 3
   Posted 4/6/2009 7:21 AM (GMT -7)   
Hi there ... Im a 29yr old female and dx with bilateral sacroiliitis... And finally somebody who knows the pain Im talking about!!! For me it is excruciating. I have been continously to a chiropractor, physiotherapist who practises acupunture. I have also been to an oesteopath. I have been on anti inflammatries and pain killers for months . I dont sleep for more than an hour at a time, because as soon as I move the pain is enough to wake me. I use heat creams, heat backs, warm baths, ice packs, sleeping with pillows between my knees, no lifting, minimal bending, had a week of rest off work, but to not much relief. I bent over and emptied the dishwasher and almost immediately pain returned. I some rlief from the acupuncture as it releases the tense muscles I have in my lower back, buttocks and thighs... I am the process of trying to get an appointment to have cortisone injection, which I am not that keen on, but I dont know where to turn. Im too young for this and it is effecting my entire life. Ive become a burden to my family, boyfriend. I cannot perform my job properly (I manage a liquor store, alot of heavy lifting which lead to my sacroiliitis). I dont know if I really had anything to help you with, I seem to be rambling. I just had some relief when I realised there are other people like me out there. It is so hard to get anybody to understand the pain Im in 99% of the time, I have very little time without it... Im sorry if this has made you feel bad or worried you, but its just one persons experience, unfortunately its not a good one. Im crossing my fingers yours is not like mine, I wouldnt wish this on anyone. I am wondering if you or anybody out there since these posts have been made, have found anything to relef their pain and discomfort? Even the tiniest 'tricks' they use. Or what treatment has worked the best? I really would like to discuss this further and hear other experiences.
Thanks for listening/reading... Hope to hear from someone.

NoblePath
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 4/6/2009 8:06 PM (GMT -7)   
Hi there,

Sorry to hear about your pain. I have been really lucky. The physical therapists really worked on getting this under control. I still have pain every once in awhile for a few hours, but it's not like it was. They told me I had to strengthen my core (abdominal) muscles and stretch because my muscles are naturally tight. They got my pelvis in alignment, but I am soo glad I didn't listen to that ortho doc. They did some type of muscle release. The muscle right over that joint was super tight and painful. It was kind of embarassing but luckily I had a physical therapist who was female and dealt with this all the time. She did say that it was rare with someone who wasn't or never was pregnant to get the condition, like me. She said that pregnancy loosens the ligaments, but she didn't know why it happened to me. You can find me on yahoo under nobilitypath. I will let you know all I know and have tried.

Chris0410
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/18/2010 11:21 PM (GMT -7)   
I was diagnosed with ankylosing spondylitis when I was 18. I am now 27 and the worst part of disease is the sacroillitis that comes along with AS. I don't think people understand how severe this horrible disease can be. The pain is so extreme it interupts everything in my life. Sometime I can't get out of bed because the sharp pains are just too severe, and I don't want anyone to help me out because any little movment feels like it will kill me. The pain sometimes is gone for weeks or even months, then it hits you when you least suspect it. I've seen 3 rheumatologists and none have been able to help me. I've tried steriod injections into my s.i. joints, Vicodin(for 10 years), prednisone, enbril(injections at home), and even nasty cancer medicine methotrexate. So far not a single thing has helped me. One doc told me the meds will kill me before the disease will so I don't take much except when I have a major flare up. I just wish people understand what kind of pain we go through, because we're young and we shouldn't be living with this kind of pain.
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