Sacroiliitis: My Story

thepainisgone- can you give me an update on your condition? Are you still completely pain free with a Gluten Free diet only? If there is additional treatments, please enlighten me. Your post is the only thing I have found which made me feel like someone was experiencing what I am to a T. I was recently diagnosed with sacroilitis by MRI looking for herniated discs for my sciatic pain. I am on week 5 of severe life-altering pain and wish no narcotic pain meds. Your post already had me out to the store for gluten free foods to stock at home. I need help. Thanks.

ScottyCork, have you done any physical therapy or had therapeutic massage to get your pelvis back in the right place?

I have gone to a chiropractor. My issues may not be as serious as yours, but my pelvis is typically misaligned and I've learned some ways to put it back in place when I'm feeling the pain. The chiropractor I saw was a sports-medicine guy and he was great until he decided to help me even more by getting my pubic bone back in the right alignment. That was a disaster (at the time I was dealing with a chronic tear in my hamstring at the insertion point and I think he retore it with that manipulation).

What kind of exercises did you get in PT? And how bad is the misalignment? Usually with lower back issues movement helps relieve pain, even when you are in pain while doing it. Also alternating ice/heat.

My chronic hamstring injury will never be healed and I restrict the stretch of that leg now, but otherwise I am able to do everything I want (except jog for fitness anymore, that's gone). I hope you can get back to a pain-free life.

Ugh, I totally get it.

PT can get really expensive. You might do just as well with taking a good pilates class, but that's not a break in cost really. Either way you look at it, core strength is the key here. I think it's a much better plan that a nerve burning procedure. You really want to get your body back to shape.

A physical therapist many years ago recommended I get an SI belt, which I used pretty much around the clock until I had my core strength back. I think you should look into this too. You can at least give your pelvis support so you don't fall out of alignment so fast.

And don't forget that it is absolutely essential to keep your hamstrings, psoas and lower back muscles stretched and flexible. If these are tight they will pull your pelvis out of alignment too. I'll bet you have a very different range of motion between your legs in terms of hammies and psoas.

If you used this during pregnancy it might not fit right now.

It seems like most of the exercises I was doing are things you can do at home (even though it's incredibly hard to get motivated!). Simple back arches on your back to keep the lumbar spine flexible, mad cat stretches on all fours to keep the abs and lower back stretched, hamstring and psoas stretches, calf stretches can all be researched online and implemented at home.

To build strength back in your legs, you do need to walk and stand. I hope you are able to do that every day, adding more time each day. Wear your belt when you're walking or standing.

Look at Pilates on the web if you can and learn about very gentle core strengthening work, or use what you did in PT to keep building strength in the pelvic girdle.

no harm i think. if it fits, wear it all the time and walk. if there's a pool nearby you can walk in there, too, or swim, carefully.

The immediate issue is to reduce your pain. the longer term question is how to stabilize your pelvis. Hopefully once you can get the muscles to stop spasming and you can move around more easily you can build that strength up. I would be especially careful when carrying your two-year old - I'd be holding my baby on one hip and my posture would be terrible - this is no way to go, LOL! Stick with hugs and kisses when you're sitting on the floor with her and let other people do the lifting and carrying.

hey,

pls read the below article.It will definitely you.

http://www.spine-health.com/conditions/sacroiliac-joint-dysfunction/sacroiliitis-treatment

Thanks

It is both comforting and depressing to read these posts. It definitely helps me confirm that I am not exaggerating my pain as I am certainly not alone in suffering this hell-ish disase. Like some of you I am unwilling, at this point, to try much in the form of drugs. I am hopeful in finding relief through some of the more natural forms some of you have discussed. I know this forum is old- but thank you all for sharing your stories and your willingness to put out there what has and hadn't worked for you.

Hi Kate,

Sorry that you are going thru the cocktails of medication due to your Sacro.

I can empathise with your situation. There was a point I felt like committing suicide.

I suffered from AS(Ankylosing Spondylitis) at age of 17... initially, the sacroiliac joint fused up, then as I grew older, it affected my left hip. Limping for 2 years, right hip also got affected. During this period of time, my only hope is to rely on my doc, which prescribed me naproxen, ibuprofen, sulphursalazine, voltaren, indomethacin, and many many more...

I kept hoping that one of these drugs will control my disease, and i tried traditional methods too.... from going to acupuncture, to going to chung hwa clinic at Toa payoh (prescribe with cockroaches, centipede, wood lice, scorpion), drinking raw potatoes juice 2 full cups a day with empty stomach.

Eventually, I also went thru the stage of taking MTX with prednisolone. Still not working for me... I went for trial remicade, sitting together with the cancer patients in NUH... effective for a week, then all symptoms came back again... Dr said I must continue the remicade and there is a subsidy from government. $3000/mth!!! either I inject myself on the stomach or I come to NUH once a week for a drip. I really can't afford such bill.

THe pain worsen and I walked with crutches for almost a year while working as network engineer... i still can remember the sympathetic look my colleagues gave me every time I walked pass them.

Cut things short, I went for left hip replacement surgery in 2003, then right hip replacement surgery in 2008. and was given arcoxia 180mg (3 times a day) to control my pain from other parts of my body such as neck and shoulder blade pain. Dr again asked me to consider a new improved version of remicade (humira), which is now more affordable. $2000/mth! Mind you, when I was in New York last year Nov 2014, there were TV advertisement on Humira every day! portraying the impression that you can immediately recover and start doing normal things, but at the end of the commercial, it has warning message and said may cause heart failure, and other very scary symptoms , and if anyone experienced such symptoms, please contact the legal hotline on how to make claims... I dont even dare to consider! If can cure my illness completely, yes I will take it. But humira only control your symptoms, and is long term medication.

i should have done my surgery earlier, else my right hip will not be affected. Just that the thought of someone sawing my bone off and replaced with a titanium metal really freaked me out.

Been taking Arcoxia for more than 10 years already, and all it does is to reduce my pain on my neck and shoulder blade, and "reduced inflammation", which my ESR and CRP are super high! 150 if I can remember. Normal people is below 10!

Since 2 years ago, I changed my lifestyle by sleeping early, take soupy food, take more whole food. My ESR and CRP went down to 65, 50, 44, and finally around 20.... and becomes rather stagnant for almost a year. I still take arcoxia, but reduced the dosage from 180mg 3 times a day to 60mg once a day. I read about the side effect of arcoxia, and really afraid that one day I might die of heart attack!

However, just last week, someone introduced me to drink a product which contains concentrated resveratrol, claimed to reduce body inflammation, joint pain, control cancer,diabetes, high blood pressure, eczema, and many many wonders... You can go google it to find out. ITs a break through product in US...

Guess what? I havent been on Arcoxia for a week now. I didn't even on any special diet.I ate fried chicken, laksa, satay at moderate level. I can still feel the stiffness from my neck and shoulder blade but At least I can skip the arcoxia for now moving like a robot the next day cos the neck and shoulder blade are so painful.

Overall, I am feeling better and I hope the effect can continue and I can break free from all the medicine which I have been taking for years.

I am having the next quarterly blood test at NUH on 3 May 2015. HOpe my ESR and CRP improve by 50%! Am I too greedy? ok lah, 20% i think is good enough.

I hope I can share some good news with you. Not sure I can post my blood test results here... so excited...

I've read everyone's post and it's as if I wrote them 5 years ago.I too was diagnosed with sacroiliatis after my birth and had huge sciatica pain and muscle spasms In SI joints, could not walk for 3 months. I was 31 and pretty athletic and refused to believe that my joins were falling apart all of a sudden. I took an initial 10 day treatment with prednisone that got my out of a chair and walking with a cane, but still in a lot of pain. I did research all over the Internet untillike I found a cure. Rheumatoid arthiritis (sacroiliitis is part of this disease family) is an auto immune disorder that is basically your immune system being over stimulated and over
Reacting and attacking your body. These is a blood test that specialized clinics can do to see what your body is reacting to. It's an IgG and IgE blood test and it looks at what antibodies your immune system produces. Many doctors today are not up to speed and also are not interested in it because it would mean you can cure yourself without medication. How? Just eliminate what you're sensitive and allergic to from your diet. That's what I did. For me it included gluten, dairy, beef, soy, green peppers, tomatoes, garlic, and couple other random things.within a week I felt a difference and after a month I felt better than in years. It's easy to stick to a diet if you know what an alternative is! Food might be one of the only pleasures you have right now, but what if you could have all the other pleasures in life back? It's worth it and after couple of months you will learn to make new yummy dishes with your new lifestyle. I did and have been symptom free for 5 years. I cheat sometimes, but I can feel the pain creeping up as soon as I do.I get back on track and poof! back to normal. If you'received willing to do this,you will have your life back. If you want something to try without the tests try the paleo diet or read up on the Dr. Jean Seignalet and ancestral diet. You can do this and I guaranteye you 100% that you will see an improvement in this or any other inflammatory conditions you might have.