Anyone else with sacroiliitis?

[mattsmom81]

I have found Mobic to be very helpful, although I have to take it with food so it doesn't tear up my stomach.

Yes, mine stirs up with periods. Must have something to do with the swelling/pressure in the area I figure...my uterus is retro and I had back labor with kiddos...

Warm baths loosen the area up, and I also alternate ice and heat when its stirred up.

[martymoose, BSN, RN]

I have found Mobic to be very helpful, although I have to take it with food so it doesn't tear up my stomach.

Yes, mine stirs up with periods. Must have something to do with the swelling/pressure in the area I figure...my uterus is retro and I had back labor with kiddos...

Warm baths loosen the area up, and I also alternate ice and heat when its stirred up.

Interesting point mattsmom- I have a retro uterus and had terrible back pain with son ( that was worse than the labor itself!), and he ended up getting stuck and we had c sec. I wonder if there is a hormone connection. hmmmm.- chris

[bacherp]

Interesting point mattsmom- I have a retro uterus and had terrible back pain with son ( that was worse than the labor itself!), and he ended up getting stuck and we had c sec. I wonder if there is a hormone connection. hmmmm.- chris

My uterus is tipped as well! Hmmn. I looked into the Uplift Procedure which laproscopically repositions it, but I'm close enough to menopause to wait.

This feels like more than coincidence to me!

Pamela

[emt-b118]

Hello,

I am new to this site and am not even a nurse but this site seemed to be the best for information and getting questions answered.

I have not been diagnosed with anything yet but did talk to a doc in the er where I work who said I might have this problem. I have done alot of research over the last couple hours and some things are true and many are not. I am just looking for answers.

Here are my symptoms and age when they accured and I am 39 right now:

Have had tendonitis since about 4 or 5

Started having knee joint pain around 2001 (about 1 year after working full time in EMS)

Injured my latisimus muscle around my scapula in 2003 (won't heal, or is it another symptom)

Started martial arts lessons in August last year (rotating hip!)

2 months into that the latisimus muscles acts up and while on the massage therapy table for that my entire body freezes up with major pain and some spasms, localized pain in buttocks and L4, L5 area

Go to chiroproctor for solution immediately

After 2 appointments of him adjusting rotated hips, and upper back leave, come back with total waist down spasms, dragging R leg, he puts me on tens like unit and after about an hour the spasms subside enough to leave

many bouts with body spasms for next several weeks

never have had debilitating pain? have had major discomfort and scale pain of about 7, even that is few and far between, most pain would reach 3 or 4

my problem is bilateral but mostly on the R side

having what seems like bone catches I have to pop then feel better

the biggest problem i experience right now is excessive movement causes my R leg to lock up and I have to drag it behind me and force a step, have to literally pick my leg up with my arms to get into my jeep but sitting my leg works so I can drive without much problem but at times I don't feel the gas peddle under my foot. have no problems moving from gas to brake

have tightness in all muscles from buttock to knees after a hard day which starts the spasms

the worst pain which is bearable at this time acts like sciatica, mostly bilateral

i have had diarrhea for so long i can't remember not having it, very seldom have solid stool

x-rays show nothing

mri to check if bones where pinching nerves showed nothing

lab tests (cbc, cmp, protien, and a few others i can't remember) all normal

we have degenerative bone disease and rhemitoid arthritis in family

curious about this gene HLH-B27 thing

pressure on my head or shoulder causes buttock pain but low again a 3 or 4 on pain scale, may cause spasms

diagnosed with mild scolioses in elementary school

reverse curve of neck due to major trauma 3 times in my teens

the thing that gets me most is the low pain scale for my pain? everyone of you express high pain, it makes me wonder if my tolerance is high due to high pain scale for so long as a child with tendonitis

almost misdiagnosed with arthritis in 7th grade, after many years suffering and many doctors (military doctors) that is when they decided it was tendonitis

most pain is at iliac crest, sacroiliac joint, or cocyx

my popping manuever is at iliac crest

ibuprofen doesn't work as a preventative measure

had a decadron shot today which helped some (tightness and spasms didn't happen, walked ok, still had some discomfort)

this condition in research is supposed to present with fever and eye problems which have never happened

i have taken robaxin and something else (don't remember what but an older drug like vioxx) used heat and ice, elevated my legs

heat seems to be the most comforting, the elevation helps some, decadron seemed to help most preventing the spasms and leg lockup

i am trying to self diagnos because I am casual at the hospital so I don't have insurance and can't afford a doctor, emt's make very little

I would appreciate any feedback that someone can give.

I am going to make an appt with the doc I talked to today because he is the only one that even came close to what might be wrong. the university med center doc just pissed me off and offered vertually no solution besides a steroid shot which helped some.

any help from those that suffer what i think i have relaying the symptoms is appreciated.

I just want to move on from this, have had 2 bad incidents at church in the last 2 weeks and it can be very embarrasing. by the way that is the one thing i did not see in this forum. the embarrasement can be unreal. i can see why those suffering would want to bow out of public activities for fear of a flare up. you know i walk really funny when things are bad, the nurse at work today was making fun (all in good humor) of the way I walk when I have a flair up. i laughed so hard. he was really good at it but had to give him a few pointers to make it exact.

oh, this morning thing, sometimes I am stiff when I wake up sometimes not. that has been going on for many years. anyway!!!

firewalker118@hotmail is where you can contact me

[MissDanielle]

I just got the call telling me I have suspected sacroilitis. I am not a nurse, but this is the only forum I have found so far that talks about it.

I am due to meet with the doctor next week. Reading your posts will help me to determine what avenues I will be interested in that he may suggest.

I was wondering if anyone also suffers from a digestive illness? I suffer from IBS, and my brother suffers from Crohn's. Thing is, sacroilitis from what I've read is also linked to Crohn's as well...so perhaps my IBS has been misdiagnosed (surprise surprise).

My history includes problems with dislocating joints and constipation from the age of 2. Severe back pain throughout my entire life. Doctors found nothing. Finally when I was around 10 someone diagnosed me simply with "childhood onset arthritis".

Have struggled with chronic pain and digestive problems for all of my 30 years.

I hope people come back to this thread and continue posting updates. And if anyone has any good links on this topic, please share them.

Danielle

[bacherp]

The SI joint rhizotomy returned enormous range of motion, but did not help the pain :-(

I'm looking into something now called Anklylosing Spondylitis. Somewhat rare type of arthritis typically starting in the teens - 20's and it's hallmark it always starts w/the SI joint.

-P

[hollyster]

I had my SI injected May 2. Flared up for about ten days still hurts.

[Khristina]

I had my SI injected May 2. Flared up for about ten days still hurts.

I had my first SI injection on 4/26 after being hospitalized and subsequently diagnosed with sacroiliitis. I had true relief for about 5-7 days, then I blew up like a balloon and gained 10lbs from the steriods. The SI pain is now back with a vengence. I am hoping to have surgery for this as I have researched this diagnosis extensively and it seems as though the only option other than surgery is to have injections every few months which I am not willing to do. Does anyone out there know about Sacroiliac fusion surgeries and has anyone with sacroiliitis had one? Success with it?

Thanks, Khristina

[hollyster]

I had my first SI injection on 4/26 after being hospitalized and subsequently diagnosed with sacroiliitis. I had true relief for about 5-7 days, then I blew up like a balloon and gained 10lbs from the steriods. The SI pain is now back with a vengence. I am hoping to have surgery for this as I have researched this diagnosis extensively and it seems as though the only option other than surgery is to have injections every few months which I am not willing to do. Does anyone out there know about Sacroiliac fusion surgeries and has anyone with sacroiliitis had one? Success with it?

Thanks, Khristina

Hi Khristina

I went in 5/24 and had a trigger point injection to try to calm the area from the SI injection. I have had a lot of pain and thought that it was due to the two herniated disk, a cracked vertebra and another torn disk. I had surgery in Jan to fix those problems. I am miserable now. I ask my MD about a rhizotomy but in my case he feels it would not work(I have quite a bit of nerve damage.)

Understand about the steroid bloat, I feel like the Staypuff girl.

I would not have a fusion. The first two neurosurgeons I went to wanted to do a four level fusion with cages. I refused, I have seen too many failed backs. I will not get my SI fused, I will try The SI injection again and wait for the new procedures to be approved.

[gretta collins]

Hi Khristina

I went in 5/24 and had a trigger point injection to try to calm the area from the SI injection. I have had a lot of pain and thought that it was due to the two herniated disk, a cracked vertebra and another torn disk. I had surgery in Jan to fix those problems. I am miserable now. I ask my MD about a rhizotomy but in my case he feels it would not work(I have quite a bit of nerve damage.)

Understand about the steroid bloat, I feel like the Staypuff girl.

I would not have a fusion. The first two neurosurgeons I went to wanted to do a four level fusion with cages. I refused, I have seen too many failed backs. I will not get my SI fused, I will try The SI injection again and wait for the new procedures to be approved.

I was diagnosed with sacroiliitis in September last year. Pain control was difficult and inadequate for some time. I had my back first injected in early December with only "some " relief.

The next time was on March 2, 2005, and I got almost instant relied and so far so good. I am not sayting that I don't have any pain but now I feel good enough to do what ever I want to do and I take usually one Tramadol in the morning and in the evening another. And I think this is wonderful and I finally feel like myself. Fortunately I didn't have the bloat problem but face gets fiery red for several days.

My doctors and P.T.'s were both very cautious about any surgery being successful and neither recommended it. Maybe another opinion before having something done that would be permanent.

Just wanted to mention that I also started taking Glucosamine/Chondroitin and while I know that probably doesn't have any effect on the inflammatory part of this--I feel better than I did for over a year and I am so grateful for this. Good luck.

[Khristina]

I just received results from my recent MRI - acute sacroiliitis! I knew I had suffered this in the past, but my orthopod said it was rare for it to show up on the MRI; that mine was an acute case.

Does anyone else suffer from this? There are no surgical options, only meds and PT.

Would love to hear from you if you experience this and how you relieve your pain.

Hi, I have had Sacroiliitis for close to 8-9 months now and have been off of work for a year due to a MVA. I have had facet injections, SI injections, steroid injections, and now and trying prolotherapy which is supposed to tighten up my torn and loose ligaments. I am now looking onto Radiofrequency treatment where they ablate the nerve that is firing too much and causing my constant pain. I am on Oxycontin 10mg 1tab po BID, Oxycodone 10mg po PRN, Neurontin 3000mg po qd, Tylenol 3000mg po qd. i have been on everything and nothing is working. The physiatrist I have been going to has said that there is really nothing else they can do which I don't believe. I brought up the radiofrequency option and he said that that was a treatment but it wasn't a for sure thing. I am up in arms-I am 25 yrs old and in constant, pulsating pain. Anyone else out there like me or am I the only one?

[not4nurse]

The 4 in my name should be the letter a notanurse

I was told I have sacroiliitis about 9 weeks ago. I got sick in Oct of 04. Back pain, upset stomach, fever and rapid weight loss. It took about 6 months before I was found to have Chrons. I have had blood and high amounts of proten in my urine. I have tried every thing Tens, PT, Remicade. Nothing has helped yet. I am going to Cleveland Clinic to get a 2nd Injection in my SI joint. I have had 4 prior to that. I am also on my 7th treatment of Remicade. I have been off of work this whole time on disabality. My total weight lost is 45-55lb and I am still losing weight. I am taking 1 tramadal and 2 tylonal 3 times a day. This just takes the pain off. Setting, walking and moving causes pain. I can't even sleep at night. This has been a long road just to get to where I am. I have been on at least 40 different Meds. And seen 2 Docters in every field. I has been a constant battle with the disability company to keep me covered. Right now they are reviewing my clame to see if they will continue to cover me. This has not been fun and it has been very painfull. I hope everyone else Is doing better than me.