Anyone else with sacroiliitis?

[martymoose, BSN, RN]

Hi all- I have a long hx with sacral pain. I ended up requesting that my doctor send me to a pain management clinic. It took time, but I had all the steroid injections under fluoro(boy, they did hurt at the time). After they would work for a period of time, the doc felt I was a candidate for RF neuroablation. I had that done and it has lasted the last three years. It was scary tho after the procedure, as I was unable to stand any weight in my rt leg for a day or two, and got sent home on vicodin. The first two weeks were very sore, but after that, I was able to function almost normal ie: stand for more than 20 mins.I also found that some of my muscular spasm problems were related to trigger points- I have tons of them- the therapy for that can be excruciating too, but after they are worked out, my legs were actually both the same length. It also did help that I stopped the type of work I did(repetitive factory work), and I just finished nursing school, and have tolerated that quite well- no problems bending, walking, standing.I still get sore if I overdo it, such as working out, or riding my horse(I know, Iknow), but i haven't had to take anything more than advil for the most part. I've been told the procedure can be repeated if need be. Hope this helps- I think a pain management clinic was a key part to making this tolerable. All my doc said was Nsaids and live with it. I had to request the pain mgmt referral, but I am glad I did. If you all have questions, I'd be happy to answer them. Good Luck- Chris

[blondebritbrat]

What is this illness ? Sorry if it seems like a dumb question but my dr. is testing me for that if there is a test for it. I am not a nursing student yet so I am fairly clueless as to what it is and how to find out if you have it or not.

[sfamom04]

What is this illness ? Sorry if it seems like a dumb question but my dr. is testing me for that if there is a test for it. I am not a nursing student yet so I am fairly clueless as to what it is and how to find out if you have it or not.

Hey, there are no dumb questions. Sacroiliitis is inflamation of the sacral and iliac joints of your pelvis. It basically is arthritis. My Dr. had a x-ray done on my pelvis and then moved to a CT. Are you having problems with lower back pain? That is how mine started and I was diagnosed with herniated disc but this last Dr. thinks it has been the sacroiliitis all a long. Good luck!

[sfamom04]

Hi to all fellow sufferers -

I started this thread in October of 2003. I can't believe it has been that long since the MRI. I continue to suffer with pain. My ortho never suggested the cortisone injections, though I often wondered about them. I am quite the baby when it comes to pain or needles, so the thought scares me. I can't imagine how much worse the pain could be though.

After that MRI, I started PT. It went on for several months and did seem to help. The PT thought the low back pain and sacral joint pain may be related to too many c-sections (3) and crappy abdominal muscles. There was some thought that the sacral pain was really low back pain referring into my sacral joint.

This sounded plausible to me. But, by this point all I knew was that the pain was debilitating and there were days I could barely walk.

I manage my pain with the following: good shoes, abdominal exercises, and medication. I can rarely get through a day without some form of NSAID. My sleeping has improved but I have to be careful how I move at night. I have found that if I roll up a small hand towel and wedge it under one side of my butt, it lifts the joint up and the pain is relieved. It is almost like I am crooked.

Some days, despite all of my best intentions, the pain is excruciating! On those days a heating pad and Darvocet are my best friends. I have tried almost every conceivable pain med, but Darvocet works the best.

I also was tested for lupus and rheumatoid arthritis - both negative. How the hell I ended up with this I will never know. I have been suffering since about 1998. A friend gave me a book called, "Healing Back Pain - The Mind-Body Connection" by John E. Sarno, MD. I have only read several pages, but sounds interesting.

When I was in nursing school, one of my psychiatry courses discussed psychosomatic pain and its causes. I will never forget reading that sacroilitis can be connected with unresolved grief. My second child was born severely brain damaged and died at 7 weeks of age. It was a very difficult process that I did not handle well. I have always wondered if it was related. I will read the book and learn more.

Anyway, I have seriously gone on longer than I intended, but I was glad to hear there are fellow sufferers out there. I am currently corresponding with another nurse who found me at this site. It is encouraging to know others hurt like I do.

I am so glad I found this website. It is really comforting that I know I am not the only one with this pain. My pain level right now is not bad, the flare ups are the worst. I am wondering if the unresolved grief thing is really true. I have lost a lot of people in my life to not to pleasant circumstances. I am suppose to be going to get a SI joint injection. I am hoping that it works. I am really nervous about it though. I did PT for a herniated disc and it made the pain worse. So I am grasping at straws at what to do. Maybe I should get the book you are talking about. Have a great weekend.

[bacherp]

jrwest et. al:

I too have a long hx. 20 yrs to be exact. Done *everything.* 10 yrs. chronic pain. 5 yrs. pain mgmt. Have had RF ablation on 3 facet joints, and after two diagnostic injections, am going to have the SI joint done.

I'm SO glad to hear you've had relief for 3 years! The nerves can grow back as quickly as six months.

This is the only place I've found on the web with a support forum, and I'm grateful for it.

After SI "rhizotomy(s,)" the only options I've seen are to have the nerves severed far enough apart so they cannot find eachother to grow back - though this can cause "knots" and scar tissue, or fusion. Gak!

One website "microspine" seems to think SI joint problems are the ligaments, and may have an alternate approach, but they are alone.

I'd really appreciate hearing from anyone who's had the RF ablation done on the SI joint, or any referral to websites with success rate statistics. I have cold feet.

Thanks all,

Pamela

[merkaba22002]

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.

I just found out that I have Sacroiliitis too. I've had it for 2 1/2 yrs and did not know it because I had surgery done on my left side:L5-S1 for a herniation, so after my surgery when my back continued to hurt I thought maybe it just wasn't strong enough, and possibly didn't heal properly. This is horrible for all of us. It really makes life more difficult, I find mainly because of the decrease in range of motion. I got my first shot (neoprene/steriod) about four days ago. The first couple days that area was really tender, but now it's starting to feel better. Is there a cure? Can it be healed? I feel like I have all these questions, but no answers. I am still young, and want to enjoy my life without wondering where this is going to leave me 20 yrs from now. If anyone has a decent website to go to for info., or if you have info. from your own experience with it, please reply. It at least feels good to be able to communicate with people who share the same problem. Thanks Much!!! Peace.

[stidget99]

I was dx'd w/ the same several years ago. Have run the gamut in treatments. Cortisone injections worked but only for a relatively short period of time. About 6 months ago, I started seeing a massage therapist for pain management. What a difference! For the first time since my initial dx, I am actually able to sleep on my belly or back! Now, more recently, I had an acute injury of the lower back. Did the doctor thing. Same old..same old. PT was a waste of my time. And, I couldn't work while taking narcs and muscle relaxers. Felt better but only if I did absolutely nothing! As soon as I went back to work, I was walking w/ a severe limp by the end of my shift and would be off of work for another few days. I couldn't afford to be off of work any longer financially nor could I continue to risk my job due to excessive absenteeism. So, what did I do? I saw a chiropractor. OMG!!! I was able to go back to work that same week - after only 2 treatments. His treatment process included 8 minutes of TENS therapy followed by the chiropractic adjustment itself. Now I only see him prn. He will always squeeze me in...no matter what and will even see me on a holiday or weekend prn. Now this whole road to a painfree life has been expensive. Massage therapy is ~$45/one hour session and initially saw him 2x/week but that gradually dropped down to once every week or two and now only see him prn. Chiro care was $30/visit and initially saw him 3x/week. Insurance doesn't cover massage therapy and there is a $2000 deductible for chiro care. But ya wanna know what???? I would gladly spend that much $ all over again!!! I can work and play without being stoned on drugs. :)

[bacherp]

Below is my history, but I tend to agree w/previous poster that chiropractic may be the best way to go. I got some relief years ago, but my chiro retired.

2 weeks ago I had an SI rhizotomy, but also stopped bextra and started water therapy. Had an awful flare & took prednisolone. Range of motion returned w/rhiz (actually w/first diagnostic injection.) A chiro will do this too.

Am hoping rhiz/ablation will work, hard to tell yet.

Does PT or excercise help anyone?

Ultracet & skelaxin are no longer enough for me. I'm going to give water therapy the full month, unless I go into excruciating pain afterwards like last time.

Don't think there is much a rheumatologist can do.

Anyhow, I'm currently debating between the 4 choices in the title. I'll check back in & give full report on relief from rhiz.

Tx,

Pamela

Age 16 - low back pain w/period lasting weeks afterwards sometimes.

Age 25 back pain lasting 6 months at a time.

Age 30 back pain continual. Advil controlled.

Age 35 could no longer play tennis (had played on 4 teams.)

Age 36 chronic pain out of control. 12 liquid advil / day not enough.

Tried:

- Creams (bengay & aspirin stuff)

- Invertachair (hang upside down)

- Slept w/heating pad

- Glucosamine sulfate

- MSM

- Chiropractic - No motion in right sacroiliac joint. Chiropractor got it moving after one month of manipulation twice a week. X-ray showed "some deterioration."

- Orthopedic shoes.

- Emergency room.

- Acupuncture

- Went to osteopath Dr. Ira Fisch. X-ray showed nothing. 2 epidural injections. First one helped a little.

- TENS & newer RS Medical jacket.

- Physical Therapy

- Ayurvedic medicine

- camphor oil (Edgar Cayce remedy)

Age 41. In Pain Management with Dr. Justin Wasserman. X-rays and MRI show nothing. Tried many, many drugs. (Neurontin, Pamelor, Mobic....)

Age 44& 45. In Pain Management w/Dr. Bobby Dey. Two (3 levels vertebrae) lumbar facet joint rhizotomies.

Age 47. Right sacroilliac joint rhizotomy.

20 mg. Bextra /day and 2 ultracet + 2 skelaxin every 3 hours. Lie on Ceragem (heated jade roller massage) bed when I can take it.

Water therapy to be followed by land physical therapy.

[MomNRN, BSN, RN]

Okay fellow sufferers, has anyone found a correlation between a severe pain flare-up starting with your menstrual cycles?

Also, I am finding a connection between stress, inflammation, and pain.

I have been pain-free and pill-free for over a month now. Of course there are always those days that are worse than others. I am feeling happy for myself and sad for those of you with chronic pain. I KNOW how bad that hurts.

Lets try to support one another and continue to share our tricks!

Good luck!

Laura

[bacherp]

Laura,

Triple & quadruple the pain during menstrual cycle.

I'm just shy of narcotics but have not tried the following:

Cataflam

Votaren

Arthrotec

Lodine

Nalfon

Ansaid

Indocin

Ketoprofen

Meclomen

Ponstel

Relafen

Naprosyn

Anaprox

Daypro

Clinoril

Tolectin

Anyone have experience/knowledge?

Tx,

Pamela

[MomNRN, BSN, RN]

Pam -

The meds I have tried in your list include:

Indocin - induced a migraine from hell and I am not a headache person. I had to go to the ER. It was miserable. The headache occurred after about 2 weeks on the med. The med was OK, but side effect not worth it.

Arthrotec - induced extremely heavy periods. I became anemic after about 6 months on the med. No doctor (rheumatologist/gyne) could diagnose the reason. I discovered the Arthrotec connection in a new PDR received at work.

I also took Diclofenac which is Arthrotect without the stomach buffering medicine which causes the heavy bleeding. It didn't really do a whole lot for me.

Naprosyn - no affect on pain at all

Relafen - occasional relief on "easy" pain days. I use it for twinges of pain.

Bextra - occasional relief. I know these have been taken off of the market, but I have some samples around here somewhere.

For my worst pain days, I use Darvocet. I really get the best relief from those. I try to limit my activities, use my heated corn bag, and take my friend Darvocet. I have tried Vicodin, but it makes me whacky and I had a reaction with it one time.

I am happy to say I haven't had a Darvocet in a couple of months, but you just never know!

I have also tried the chiro route. I really don't find much relief. Water therapy is good for me.

I am tempted to investigate some of the holistic methods of decreasing inflammation. I know there is some herb/spice, maybe tumeric, which has claims of reducing inflammation. I need to do some more research.

Hope everyone has a pain-free day! :wink2:

Laura

[teeituptom, BSN, RN]

For my chronic and long time ongoing SI pain

The best for me is Magnet therapy, also a Balance bracelet heped. Also Tai Chi every morning.

PS The hell with drugs