Sacroiliitis: My Story

Hi Kate,

I to am a sufferer from sacroiliitis.  My symptoms started in my early 20s at the end of university (I put it down to carrying very heavy knapsack all the time whcih triggered it).  I am now 38 and it's gotten pretty bad.  I'm sorry you suffer from this too.  It's so unfair to be in pain all the time and when others don't give it a second thought.

To answer your question, I have 2 kids and in both pregnancies (second one 2 years ago), my sacroilitiis was great.  I was in total remission.  Saw a PT yesterday and she said it's because the hormones relax the joints.  Both my kids were born via c-section so I cannot comment about birth.  My thoughts though...and this is just my personal pain...that having to straddle my legs for a natural birth may cause issues (but then again, my joints were great during pregnancy so maybe not).

I don't take Enbrel or TNF blockers as at the moment, I don't have any deterioation of my joints or spondilitis and so am just on celebrex at the moemnt. 

I did have one cortisoid injection in January.  For me, it helped, but was short lived.  (I did try exercising which may have sped up the loss of effect).

I am so sorry you're joint through all this.  It's tough to live wtih as it limits things and its frustating.  I do hope you get some relief.

it's just hard. i was recently diagnosed with sacroiliitis but at the same time this is the farthest i've ever been diagnosed and hopefully this new doctor will find out what the real problem is.

Hello

I'm new to this forum, I wanted to tell you of a natural cure for Sacro pain.

I have had it for 29 years and recently had it x-rayed where severe damage is seen from Sacro and a nearly closed other SI joint.

In all that time, 29years I never went to the Doctor except twice ---once in 1983 and once in 1984 where I was offered pain killers and advised to rest..........of course this is no good.

So I have found the cure for relieving the terrible pain. Or I should say that Reflexology holds the cure.

I discovered that if you manipulate the back of the heel area where the Sciatic nerve runs under the heel and each side of it and apply DEEP heavy massage (up to 20 lbs of pressure to be applied in the denser areas on edge of heel area) until the pain around the heel has gone, you will discover the SI pain will have gone or be barely noticeable.

One thing for sure is that area of the heel is very painful on the side of the SI damage...try it .....and the worse the pain in the SI joint is, the worse the back of heel pain is. It takes me about just 10 minutes to get rid of the pain completely. I do have serious damage and still get it .....BUT NO PAIN KILLERS EVER Of course, it will come back, just do it again, you will soon get what I mean when you try it

There was a period of 8 years where I didn't have any pain whatsoever. The reason is this:

In the same area of the heel on the side of the SI pain and on the flat of the heel closest to the edge, press very hard to locate anything that feels like Needles deep in the tissues. You MUST disperse them. You do this by gradually applying as much pressure as you can stand and sustain it. You will feel the needles break up or they will be in a tiny skin sac and MUST be dispersed/popped...................These are Uric acid crystals and collect in sites in the feet where people have a problem. When you find them, if you find them, by dispersing them will give you instant long term remission of SI...............also, interestingly, he found a small painful area where the Gallbladder is located on the foot and much later down the line, an x-ray found a gallstone. I haven't had any probs with it.

Please try these techniques yourself or try a professional reflexologist and make sure they apply the right kind of pressure around on on back of heels otherwise it isn't effective enough..some people have stronger fingers than others and you need strong fingers to do it well xxxx To you all

Hi all, I am a 22-year-old female from Australia. I have been suffering horrible lower back and hip pain since my 16th birthday. I was born with clicky hip (hip displaysia) and was in a harness for the first few months of my life. The doctors told my parents that I should be able to crawl and walk but when I turn 15 or 16 I may run into some trouble with my hips. On my 16th birthday I couldn't get out of bed, pain was radiating in my lower back across the hips and through my groin. I started seeing a physiotherapist straight away for 5.5 years. The process was pretty much wake up, get out of bed, hear a clunk then go to physio who would essentially click me back into place (which I later found out was subluxation of the SIJs). I was satisfied with that process then found out about chiropractic care so left the physio and saw a chiro for 6 months of this year who did the same manual manipulation but informed me I had a pretty bad scoliosis that had caused all this including the clicky hips as a baby. I finally went to my GP a couple of months ago and told him what I had been through for the past 6 years and he sent to a sports physician who immediately got me to a physio who specialises in lower back and hip issues. I have just finished 6 weeks of physio treatment which hasn't really helped as I can't do basic exercises using a fit ball (squats, bridges etc) and have since been given hydrotherapy exercises which are more manageable (just walking up and down the pool which is wonderful as summer just started here). Had a review last week with my specialist and was sent for a bone scan earlier this week and have finally been diagnosed with sacroiliitis. I can't believe it has taken 6.5 years to finally get to the bottom of this. A referral was sent to an imaging radiography centre yesterday arvo and I managed to get an appointment for a cortisone injection just 30 mins later. I didn't have a lot of time to build up the anxiety but I was terrified. The cortisone injection was administered via CT scan in my left SIJ. It was the most excruciating pain I have ever been in. I already have a phobia of needles and after the traumatic ordeal I wouldn't let the doctor do the right SIJ. The left SIJ has always been far worse anyway. It's been just over 24 hours since I had the injection and am feeling okay. The local anaesthetic has worn off so it hurts to sit but that's just from the needle. I am taking it really easy as it also hurts to walk a bit but I have faith in the cortisone injection. I am a journalist and it's been hard having to take time off work or leave early as I just can't sit any longer at a computer. It sucks and the worst part is that my social life has been impacted so heavily. I hate it. I hate this pain. I hate my body. I am 22 years old and didn't have an injury that caused this, my scoliosis is the cause. Although the diagnosis of sacroliitis was pretty scary, it provides some closure, knowing that this pain is not in my head, that this condition or dissease, whatever you want to call it is, as people have indicated in this forum, manageable. I am seeing a rheumatologist in January to deal with the pain meds NSAIDs side of things. I just pray that this cortisone injection helps as I am terrified what the next step is. I am a vivacious, fun-loving gal personality-wise but just want to be a normal 22 year old who can have an active social life and have fun again. This pain is debilitating at times where a simple trip to unload the dishwasher leaves me bedridden for hours. Thank you to all who have posted here and helping to show me I am not alone.

...I will also look into a good reflexologist...

So this is the story...
When I was 19 I took a job in Dorothy Perkins in Jervis street, took it upon myself to sort out their stockrooms, I was pretty fit and strong at the time so I thought nothing of hauling heavy deliveries and stock boxes around the place. Anyway, went to lift a bar full of clothes one day on the shop floor and really hurt something in my lower back, got a taxi to the gp beside my college. Diagnosis- severe lower back strain, muscle relaxants and painkillers, rest.
Never really recovered the strength I had in my back after that.
After college, went into teaching, visited gp on and off with pain, nothing came of it. Moved to Ardee, got a new gp, referred my to ortho in Dundalk, diagnosed tilt in sacroiliac joint, slight bulge on l4, l5. Physio and difene. Physio was pathetic, no interest, just "clicked" me back into place when I went, difene was murder on my stomach too.
Tried physio (private) she was good but after 4 sessions said I needed something more, sent me to chiropractor in mullingar, he did some clicking, acupuncture and drugged me to my eyeballs, on dec 23, can hardly remember Christmas 2005.
No joy, pain returned. Started getting "stuck", even at work. Began attending osteopath in Ardee, he gave the best relief I had up to then, made me wear belt for sr joint he got from new Zealand, but again after 5/6 sessions he had to say, look Paula this isn't working you need to see a consultant. So what happened, I fell pregnant!
Strangely on my first pregnancy the pain improved slightly, gp said it was pregnancy hormones loosening the joint. Rob was suction delivery, all fine. Breast-fed for 6 months, no real pain. Almost as soon as I weaned him pain returned with chronic pms, mind you that didn't last too long, pregnant 3 months later!
Paulina was a difficult pregnancy, very sick, admitted to hospital for a week at 6 months with "virus" couldn't control my high temp. Very weak and I'll until Paulina was also suctioned (she was a very long 9lb 1), kept in hospital for 1 week with retained placenta but home then, all well. Pain returned again when Paulina was weaned. Difficult year 2008, lots of pain, not helped by pushing double buggy and managing 2 year old and 5mth old! Started getting to the stage of 5/6 in the evening I could do nothing with the pain. Gp prescribed lying down for 20 mins every two hours!! Ha ha, clearly he never stayed at home with kids that age! Pain was significantly worsened by sweeping, hoovering, mopping, bending and lifting.
Returned to a private physio who was excellent, got me working on "core" muscles and recognised continuous spasm mid way up my left side of the spine.
Fell pregnant jan 2009, from the very beginning I had terrible pain in my lower back and down my left leg. Couldn't walk some days, obviously could take nothing for the pain, after 12 weeks I tried homeopathy, baths, hot water bottles. Physio in the Lourdes my obgy sent me to gave me crutches and an exercise ball to sit on, as bump grew so did the pain. Delivery was tough, fintan was a wide 8lb 12, forceps to avoid emergency cesarean, but I panicked, when I heard the words emergency c I pushed like my life depended on it. Apparently that pushed my disc out onto the nerves. I was in excruciating pain, couldn't sit, walk or stand only lie on right side. After MRI ortho surgeon said I needed to go straight to the mater by ambulance for disc surgery. I refused, I was managing to breastfeed but was on regular injections of pethadine. Ortho was not happy, but I was determined they find some way to hold off surgery. So as luck would have it a very nice man, radiologist I think offered to do an epidural block, if it didn't work surgery was the only alternative.
It sort of worked, 50% relief, I could cope. 2x50g tramadol and 5mg Diaz every 4/6 hours when I got home. I was a zombie, but I was home feeding my newborn, back with my 2 and 3 year old.
Not surprisingly I ended up with depression, I couldn't feel anything, I was exhausted and in pain. My husband was in the throws of starting a new job having been unemployed for 6 mths, I was put on anti depressants suitable for breastfeeding and sent for Councilling. The councillor I got happened to be a renowned expert, who coincidently had recently recovered from a spinal fusion!
She was amazing, got me over the hump, convinced me to ask friends and family for help to pay to see Ashley poynton privately in dec 2009. He was sympathetic but firm, I needed surgery, he would schedule a pain relief injection for jan but put me down for surgery (on public list!) in Cappagh.
Prof Stephen Eustace did the injection, after a poor student failed 3 times and I almost passed out. It was the best relief I had, lasted 3 months. May 2010, surgery in Cappagh with dr Poynton. Had to take a break from paying our mortgage for 2 months to hire a nanny. That was torture for me but I did it, I did everything I was told.
Back to outpatients 10 weeks post surgery, explained I was improved but still feeling pain. MRI was ordered, showed surgery was a success but prof Eustace diagnosed sacroillitis, so I was transferred to dr grainne Kearns, rheumatologist. She did bloods, high inflammatory markers, but pain worse at evening rather than morning makes her think, not ank spon. She transferred me to Beaumont, no other signs of major problems in other joints just slight stiffness in hips, wrists, feet.
I was put on Enbral injections, an anti tnf, horrible allergic reaction, changed to humid a jan 2012. No benefit as yet.
Attended gp in feb, almost my entire body was in spasm, she phoned dr Kearns who saw me in Beaumont and discovered bursitis on left hip, injected with steroid, ordered MRI as she believed my back problem had returned.
Driving children home from school last thurs, as I turned I to our gateway I felt a twist and awful pain with momentary loss of power in my left leg, got emergency app with gp, could not walk or sit. She sent me straight to Lourdes a&e, they treated the pain / spasm with pethadine. Said if they admitted me I might get an MRI within 2 days and see an ortho. The place was packed, it was like a mad house, I just said write me a script for whatever will get me through this, I'd rather be seen in Cappagh.
I phoned Cappagh MRI dept and literally begged the radiologist for an app, got cancellation for this wed at 2.30, gp said bed rest until then and she would write to prof Eustace to please read my MRI as soon as possible. I don't care if I have to fund raise, go to another country, whatever it takes. I have no quality of life at the moment, it is very sad and very hard on my husband, children and family.

My daughter is in the procress of being diagnosed but so far we're told she has sacroilitis.  She has been having back pain most of this summer and last and she is very active.  We had her at a few chiropractors with no positive results and have been taking her to a physical therapist with moderate results (a few days of lowered discomfort).  Currently we are waiting on a bone test to help determine the cause of the SI which we are told will help determine the best treatment.

As a father it's difficult to watch my daughter of 16 in such pain and reading the threads here it seems it's only females who are impacted (or at least writing about it).  Is this a predominantly female affliction (is that even the right word?)

It was helpful to see the replies here knowing that its not so unusual gives hope that there is good sources of information on treatments and ideally relief.

Can anyone tell me if this goes away?  Has anyone else had a bone test?  They said they inject some radioactive stuff and then run a test to see where it collects and they can tell something from that.  Radioactive stuff in my daughters blood makes me concerned if that will cause problems too?

Thanks for listening and I would love to hear folks responses. 

Thanks for the info. We are waiting on a call from the hospital to get the test completed. Her doctor seems to be well versed in this so first things first, get the test results and then determine what to do. I will be sure to ask him about a rheumatologist when we meet though so thanks for that info.

We had her at a chiro for over a year with no improvement so we switched to a physical therapist and massage which helped a bit. She is very active and is playing sports at a competative level and it was at the last game that it went from being painful/annoying to debilitating taking her out of school and sports and laying on a bed crying despite codeine.

Hi!
I am so happy to have found this site and thread... the last two years have literally been hell and I am so angry that it has taken so long for a diagnosis. Today I was finally given an explanation as to what has been causing my pain - Sacroiliitis. In the last two years, I have done every test imaginable... blood tests, x-rays... even bone scans.
My pain has been there for many years, but has become worse in the last two, especially after having my daughter a year and a half ago. Before even any tests were done I was prescribed Percocet for the pain. As all my tests kept coming back normal, my doctor just kept prescribing the Oxycodone. I escalated from Percocet to pure oxycodone and oxycontin and worked my way up to 460mg/day. The pharmacists looked at me funny and other doctors couldn't believe I was still functioning on that much oxy and not drooling all over myself. I later found out that stage 5 cancer patients are usually not prescribed more than 60mg/day. Long story short, I became severely addicted. I decided to stop cold turkey and detoxed at home... with 6 children. It was hell. I now recieve addiction counceling and go to AA and NA meetings. I have been clean for 7 months and still crave like crazy, I can't even look at a darn Advil bottle without being triggered. So, now, having been off the drugs, deep depression has set in and the pain is excrutiating. I am only 30 years old. Because of my tolerance, most drugs, anti-inflammatories, etc. do not work and we are considering injections. I am constantly nautious, have terrible heart burn all the time and crazy indegestion, diarrhea and upset stomach. I have read that Sacroiliitis can be related to/lead to Crohn's disease. Could this be the reason for all my other symptoms? I am not sure, and I am tired and fed up with feeling sick and pain all the time.
Has anyone esle here gone though anything similar? Any advice? Any information at all would be so much appreciated!!!

HI everyone,
Although I don't have RA, I noticed this post when I doing
research on Colitis and Sacrolitis. I have Osteoarthritis, and
Ankylosing Spondylitis (hence the reason for the Sacrolitis).
Anyway, I am experiencing terrible pain from my Colitis flare up.
I certainly feel pain in my lower back to the point where I just don't know what to do anymore!!! I am assuming it could be the
Sacroli***, but I was wondering if lower back pain happens to any
of you from a Colitis flare??? That is if you have Colitis.

THANKS SO MUCH!!!!!!
Jules

I see this post is old. But, I'm some what in Kate's spot too. And if you see this, you get all theempathy in the world from me.
I'm 22 and suddenly started having all over body and joint pain when I was 19. I still have no definite diagnosis other than connective tissue disorders, hypermobility syndrome and just had surgery on my wrist a month ago for dequervians tenosynovitis.
However, I found out a few weeks ago that my aunt has anklyosing spondylitis, and perhaps this could finally be what the doctors and I have been trying to find out for the last three years...I hate being in the "prime of my life" and having to to take over ten pills most days, wear braces for support, have surgeries, failed steroid injections and live in pain daily, not even knowing fully why. There's things I'd like to be able to pursue and can't and I'm resentful of these limitations.
Sorry for the rant..I hope Kate and everyone else is doing well!

I have been diagnosed with sacro ilitis too. I am taking inti inflammatory medicines. I am not able to sit for long and also not able to sleep properly. Please advice me the treatment that took you to 100% cure for this disease. Please advice