What is Sacroiliitis?

I am 36 and was told I have sacroiliitis today. I had sciatica for the first time around nine years ago but have been lucky in that I very rarely get the pain.

Then, about four years ago, I was told I had ulcerative colitis. The last three years, it has flared up intermittently, but the flare ups only last about a week or so.

Unfortunately, eight weeks ago a flare up started and shows no signs of going away. This coincided with sciatica returning but although I could feel it, it wasn't that sharp excruciating pain. That came four days ago in my right buttock/lower back, and then, for the first time ever, I had the pain in both buttocks/lower back, as others have said. It literally takes me 10 minutes just to climb the stairs (usually crawling or holding banisters and not particularly great when you have colitis and need to get to the toilet quickly).

I spent all day in bed yesterday but that only seem to make it worse as it stiffened up. Today I made the decision to be active, so I tidied the house, kept moving, etc., and the improvement was there but it still hurt. I went to the doctor, who examined me and gave me a drug beginning with G that settles the nerves down, plus co codemol for the pain, but I stopped taking it after two tablets as the pain was the same.

Then an hour ago, the pain went away from my right side so I was happy, thinking it's getting better, only for the left side to get severely worse! Sorry I’m going on a bit. Anyway, I would like to know the link between colitis and sacroiliitis, to see what caused what? I assume the colitis caused the sacroiliitis.

Anyway, hope you all manage with the condition as best you can. I definitely feel for you as it's surely one of the most painful conditions a person can have. I’m a postman and now worried about being able to do my job.

My husband has recently been diagnosed with sacroiliitis and I have done what I know to do, which is to recount the promises of God for health and healing in his body. God's word and His promises do not return back void; they always bear fruit. There are no nasty side effects and it costs nothing to recount these blessings, just an investment of time - daily. You can find the promises of God in the Bible. I use a little purple book by Joyce Meyer called "The secret Power of Speaking God's Word". It has brought help, peace, hope and joy to me and others for whom I repeat the promises daily.

We read God's promises for health and healing daily, sometimes twice and thrice a day for my spouse and he is reaping the fruit of healing. He continues with the advice of physiotherapy and other recommended exercises.

If you have tried everything, try God. He cannot deny what He has promised to His creation. You do not have to have a huge measure of faith -- just a tiny bit will do. God bless each of you.

I'm a female, age 21. My injury began with a separate injury in my ankle, then by overworking my right side by dancing intensely for a year, and then finally taking an extremely hard fall on my right hip. My body somehow corrected itself for about a month and a half after my fall, and once I started dancing again for the following production year, I landed myself in the hospital on crutches.

My first encounter with sacroiliitis was a whirlwind of depression, oral steroid medication and eight weeks of physical therapy. I stopped dancing because that is what seemed to initiate the most intense pain and allowed my body to rest.

I had been pain free for about five months until I returned to school to begin dancing again. I felt like I really had a handle on my pain maintenance at this point. I could dance for up to six hours at a time, ice the joint later, and be perfectly fine. However while working for my catering company, I was required to serve wine while standing in one spot for five hours one evening and it really pissed my sacroiliitis off.

Since about a week ago (for my catering job) I have not been able to sleep at all, and rolling over in bed seems to be the worst pain imaginable. I'm really worried about the future.

I am an extremely active person who is employed by various jobs that require a lot of manual labor and lifting things.

This site has given me the insight to look into a gluten free diet, (which kills me to think about. I think I probably love gluten containing food items more than just about anything), yoga, and glute strengthening exercises. I also am going to look into seeing a therapist for my mental health as I notice when my sacroiliitis flares up, I tend to really hold a lot of anger towards myself.

Anyway, I'm just very glad to have found this site. It's reassuring to know that something worked for somebody and that I'm not alone in this excruciating pain. Best of luck to all of you.

I have been suffering with this condition since I was 9 years old. I am now 33. When it first started, I was playing basketball and fell flat on my butt, causing severe pain. My mom took my to our GP who diagnosed me with a pulled muscle and treated me with ultrasound heat therapy. I got no relief from the pain,

In time, the pain subsided but would occasionally flare up. When I became pregnant with my first child, the pain came back with a vengeance. I was told that during pregnancy, your body releases a hormone that allows your pelvis to widen.

After I had my son, I had occasional flare ups, but with each subsequent pregnancy (I have four kids), the pain would come back stronger then ever.

Recently, after my right leg gave out and I fell down a flight of stairs, I decided enough was enough and demanded that my doctor run tests. I had an MRI and was diagnosed with a Pars defect in my L5 vertebrae and possible Sacroilitis. I'm wondering what exactly can be done for this?

I was referred to the UC Davis Spine Center and was given a variety of exercises to do at home but was told to use pain as my guide. In other words, when that particular exercise starts to cause me pain I should stop and move on to the next exercise. Well, they all cause me pain so what am I to do? I was even told by one doctor that my pain would lesson if I lost some weight. I maybe slightly overweight but I'm not obese and I've been having this same pain since I was 9 years old and skin and bones.

I'm just at a complete loss. With all of today's medical advancements, you'd think someone, somewhere would have found a cure for this.

I was told at 14 years old I had Bilateral Sacroiliitis after two years of pain in my hips and lower back. (I am now 33.) I suffer with pain in varying levels on a day to day basis.

I have physio regularly and do exercise to a level my back can cope with. I am in my third trimester of pregnancy and have found the pain and discomfort has increased since being pregnant.

I was called into the hospital yesterday to talk about meds while in labor and was told a lot more info about this condition and pregnancy (which has been difficult for me to locate on the internet). I was told I am currently producing a hormone that relaxes the pelvic bone ready for labor and because I have this condition it increases movement causing pain. The pain will also start at the front of the pelvis as the baby gets bigger (I already suffer with this, but it was good to know why I suffer with such pain at the front of my pelvis).

I was also told this pain will also increase during labor and be worse than other women's but a natural labor is better long term. I hope this helps somebody, as i have not been able to find anything myself.

The Internet is truly magical in the sense that there is a forum where everybody can share their experiences and benefit from it. When you come to think of it, where else would you find such a large pool of people who have the same disease and are from from all over the world? This is the true power of the internet.

I have read almost all the comments. Thank you so much for sharing, everybody. It makes me more informed about my condition.

Anyway, I am an IT professional, 34 years old and my occupation involves sitting for long periods of time in front of a computer. For the last 10 years, I have been experiencing the moderate to severe lower back pain off and on. I believe it was probably because of poor sitting posture (which I never paid attention to until recently). The pain always lasted two or three days with pain killer medicines. But this time it was so severe that I could not walk or sleep. I could not turn over while sleeping. The pain originated in my right lower back and radiated to my knee.

So, I decided to consult a doctor, and he did the four-figure test but it was negative (probably because I was on medicine). Then I went for an X-ray and he diagnosed inflammation and widening of the right SI joint. To confirm this and rule out any possibility of AS /slipped disc, I went for an MRI test, which also confirmed Sacroiliitis. He recommended Indometacin- SR every day and I have had enormous relief, which kind of confirms the diagnosis was right.

Now I have a few fears. For instance, the inflammation is relieved but how do I make sure that the widening is also narrowed? Can this condition reappear? Will this condition become arthritis when I grow older? If I take good care of my posture, will I be able to lead a normal life and walk, play, sleep, dance, etc.?

I know what you folks are going through.

In 2004 I was wounded in Iraq and had back trauma. It took me 18 months to get back in uniform.

After my last tour, I was injured again, but the pain felt different, lower down in the pelvis area pain in back of my thigh and in left hip, which brought tears to my eyes. The burning, stabbing sensations were unbearable, and after three weeks in rehab, my condition was worse so I had an X-ray that showed a shadow in the SI joint. Then I had an MRI which confirmed the diagnoses of Sacroiliitis, however the orthopedic surgeon who saw me last thinks more is going on further up in the lower lumbar. He thinks it's disc degeneration in L4-L5?

I'm on Indomethacin for the inflammation, Co- Codamol 30/500 for the pain. I'm just waiting out for my second scan so they can decide on what treatment (physio, surgery, etc.) they are going to give me. I've noticed while taking the Indomethacin there has been some improvement.

I don't know how long this will last for. With me the pain increases with standing, or walking too far. I just have to take it one day at a time, I suppose.

Though I was never diagnosed with Sacroiliitis, I had many of the symptoms: pain radiating from back to hip, buttock pain, shooting pains to my ankle, popping sounds when I bent over or sat down, pain day and night. I had this for four months and was beside myself.

Finally, I was prescribed diclofenec potassium, which I took despite the risk of side effects. I took it for a week and it reduced the pain significantly. I also bought an inversion table. It cost only £80 but has been wonderful. You hang upside down by your ankles and it stretches out your spine. Basically gravity traction. Within two weeks I was back to running and horse riding again.

Check with a doctor first before trying an inversion table. It worked for me, though. Good luck, everyone looking for relief and a return to mobility. Best wishes. Michelle

Most of these comments are very discouraging! I hurt my back at work this morning and my doctor said it was sacroiliitis. I told my doctor that I had my son naturally, without the use of pain meds, and didn't shed a tear. When the pain hit my back this morning, tears came to my eyes.

As those who are dealing with this know, the pain is intense! Now, through reading these comments, I am finding out it may never get better. Ugh! I'm on a muscle relaxer and Lortab for pain and inflammation right now and if that doesn't work, I get to have a cortisone injection in my back. How do you people deal with this over the course of years when I have only been dealing with it for 11 hours now and am already at my wits' end?

Everybody here: Have a gluten intolerance exam (celic) and an HLA B27 exam (spondylitis). Maybe you are taking the wrong pills.

I have been in pain since 1985 every day. I have low back and right hip pain. I've been to bone doctors, had an MRI and pain management and still have no relief. I've taken all kinds of pain pills and they will help for maybe a week, then it does not help at all.

So now, the bone doctor thinks therapy will help me. Sometimes when I walk it feels like someone is stabbing me in my right leg on the inside and I can't even take a step because the pain is so bad. My right hip just throbs. I can't lie on my right side and when I sit I have to put all my weight on my left side. I'm just in pain all the time. Anybody else with these symptoms please let me know.

I have had severe sacroilitis for eight years now. Medications help a bit, but cause side effects and can't be taken forever. I found a set of posture/exercise routines that nearly fix the pain. Diet also has an effect (salt and starch are bad), but the exercises are the #1 thing that keep me mobile and functioning. Look up the Don Tigny method, and your whole life will improve!

I was diagnosed with sacroiliitis seven years back. I had one round of medicines. After that I got Rheumatoid Arthritis (RA). After that I was fine and normal for a few years. I was able to do all kinds of activities. After about six years I got sacroiliitis for the second time. I also had medicine for some time and suffered from RA again. Now I feel the same pain again. I don't have any clue about why and with what frequency sacroiliitis affects the body. Can someone help me out?

Wow! A lot of great information here! Thank you everyone for sharing. I have suffered with this for over 30 years, since I was 25, and it comes and goes but for the past six months, it came back and has stayed and the pain is worse now than it has ever been.

I appreciate all the information and will be trying a few suggestions in hopes of finding something that will help. I also have fibromyalgia and arthritis. Thanks!

I have recently been diagnosed with Sacroiliitis. I have been attending a specialist regarding Paget's Bone Disease of the pelvis and clavicles and osteoporosis. I have been in so much pain in my left hip that I haven't been able to sleep - the feeling is a sort of numbness and tingling coupled with extreme pain whichever side I lay on. I get up the next day feeling like a zombie.

My periods stopped at age 35 leaving me with very brittle bones. I was unable to take the pill as I had a dvt with my second pregnancy. Is there anyone else out there with a history of Paget's and sacroiliitis?

Four years ago my doctor said that i have sacroiliitis. i had pain for six months and I was using salasopyrin and the pain stopped in this time so I stopped the treatment. i was better and could do everything, like play football, work and live a normal life, but for two years, the pain started again.

Now i have lot of pain in my whole body. I'm using salazopyrin but I'm not better. Can you help me with another treatment that can reduce the pain? good luck all of you. thanks.

After five sessions of Trauma Release Exercises I had my first pain free day in a year. Have a look, find a practitioner in your area and give it a try.

I have had sacroiliitis and low back injuries for 21 years as I was 19 when I injured my spine and I'm now 40. I have been through GPs, specialists, two lots of surgery (laminectomy and spinal fusion) and my sacroiliitis is now worse than ever. There is no cure, just pain killers and rest. Good luck all.

I've had sacroiliitis for already 3.5 years. I could not walk from the second week of that disease. I had acute periods of sacroiliac pain every four to five months, but they were sensitive to the non steroids. But the last acute period I have been "enjoying" for already five months. Painkillers give no effect. Sometimes I have absolutely sleepless nights. The only thing which reliefs the pain is the physiotherapist's manipulations and exercises.

I am 40 and have three children; all cesarians and have the most chronic problems: excess burping, indigestion (after almost whatever I eat and after every meal), chronic UTI problem, skin problems. All the mentioned problems have been going on as long as 13 or 14 years.

Recently I was diagnosed for Sacroiliitis, and am going for my therapy to my physiotherapist. It gradually became unbearable to sit in a squat position while performing my daily prayer. Is there any relation between any of my chronic illnesses? Should I consult a good dietician or should I go in for Ayurvedic treatment and yoga? I am scared after reading all the postings. Please help. Pragya, India

You have to understand the philosophy behind allopathic (M.D.) medicine to understand why they do what they do. The allopathics "cure" disease with the introduction of poisons that will kill the disease but not the host. Great if you have pneumonia, bad if you have a chronic illness.

Find a practitioner of natural health to discuss lifestyle changes that must be made in your case. Perhaps gluten or some other allergen is triggering your problem. Remember you should be looking to change your lifestyle to change your body.

Perhaps you need to stop eating meals out of a box and start eating fresh fruits and veggies? Or maybe you should give up pork and fatty foods? Disease just does not happen, there is a trigger, whether genetic, allergic, or lifestyle, maybe all three.

My point is take control yourself, don't allow yourself to be a victim, rather attack what has attacked you and you should find that environment, lifestyle and food have more to do with disease than "bad luck."

I injured my sacroiliac ligament lifting a heavy object from the ground and trying to move it with a swinging motion. Sometimes I injure it and have the blinding pain you all describe here. It refers through my buttocks and down my leg. I think the inflammation must put pressure on the sciatic nerve.

The thing that works best for me is to take long soaks to my waist in the cold ocean. I have to stay in the water until I feel almost hypothermic for it to give a day or two of relief though (water temp between 55 and 70 is best.

Afterward I take a hot shower and use a heating pad for an hour or so. This therapy is amazing, but you really have to tough out the painfully cold water. But worth it! No meds required is the best part. A few hours later the pain is gone so you can do some gentle stretching and take a pain-free walk. If you don't have an ocean nearby, maybe try a bit of ice in cold bath water with some epsom salts.

Good luck to my fellow sacro-sufferers out there!

To post no 88 i have had rhyzotomy and it didn't help. the stats on it are about a 50 percent success rate.

God help you if you work for the drug company that makes Arcoxia.

i have had ankylosing spondylitis for 12 years. over the nine years i was misdiagnosed with severe muscle spasms and the severity of condition increased with time.

I was diagnosed three years ago. before then i couldn't move at all, no position rested me and i even got to the situation where sleep became impossible.

I took a lot of medication that decreased pain 20-30 percent, but the pain was still unbearable and not leaving me at all, but there is a magic drug that decreased the pain significantly from the third day.

I feel that it's good enough to reduce the pain to a level that i can tolerate and go back to my life but guess what? After three weeks the pain become a bad memory, and there was no pain at all, even the certain movements that killed me i could do with out any pain. From the past three years until now i feel excellent without pain and without even one pain attack. the drug is arcoxia 90 mg once daily.

I went to a new pain medicine doctor for a problem other than low back/buttock/hip pain, but during the initial examination, he pushed around on my low back and sacrum area and decided since I winced a little that I have sacroiliitis and recommended a diagnostic injection of lidocaine to confirm the diagnosis. He was going to proceed with a rhizotomy if the test gave me some relief, but I've been in an inordinate amount of SI, hip and buttock pain ever since the injection, so much so that I think the injection actually caused my present problems.

Every day it seems the pain worsens and nothing gives even slight relief. My question is, have any of you had a sacroiliac rhizotomy, and if so, was it effective? Thanks.

I have just read lots of your posts and feel for you all. I have had sacroiliitis for five years now and am managing. I can relate to lots of you. Having doctors say nothing is wrong with you despite not being able to walk properly, sit/stand for long, dress or do anything physical!

I take Tramadol twice a day and endep for pain (at night).I was on anti-inflammatories for a while but nothing compares to tramadol! Have tried cortisone orally but possible problem with weight gain,osteoporosis and diabetes with these. My biggest breakthrough was having sacroiliac cortisone injections under general anesthetic with someone who does hundreds of these. Don't have it with anyone- I had a doctor do it without sedation (excruciating!) and it was 1cm out of the joint and caused more pain and immobility! The Metro spinal clinic in Melbourne is fantastic -they do SI injections all the time under sedation.

The injections gave me part of my life back and I can now walk up to 30 minute ( still take tramadol with it). Before I was lucky to walk three minutes! The SI injections can be repeated. I have recently had the nerves burnt as I want more long term relief - si joint with Radiofrequency neurotomy. They burn the nerves that feel sensation. Therefore, no nerves, no pain! It is meant to work in 2/3 cases and can give you a year to a year and a half of pain relief before the nerves grow back. It is not meant to touch nerves that are used for movement.

It takes four weeks to feel pain relief and I am hoping it will allow me to get to the gym again and get very strong in the year or so I don't have pain. If not, I have adjusted to this life with lots of pacing! I suggest reading up on the benefits of pacing, relaxation and positive self talk. Great book called "Manage your pain" by Nicholas, Molloy, Tonkin, Beeston on the market. Also get a good physio (to strengthen core muscles and stretch) and occupational therapist (to teach you how to still do stuff with less pain). Also a good counselor to grieve the loss of your old self and aid adjustment to your new self can help too.

Otherwise, a pain management program where they do all of the above may be worthwhile but they are expensive. I can say that despite the pain I am happy. I have not given up any of my goals in life and am slowly working towards them. Did give up my figure though! Good luck everyone -skye

Magnets and ice!

Today I was diagnosed with sacroiliitis. Two months ago I was in bed for three weeks with severe pain! I couldn't walk to the bathroom without holding onto the wall. Even with a lot of vicodin the pain was still at a 7 or 8. I did Chiro and PT -- didn't help.

Finally, my MD sent me to an orthopedic doc who took x-rays, said nothing was wrong. Then I broke down into tears because I knew something severe was wrong, so he sent me for a bone scan which revealed a severe "uptake" in my SI joint, which means there's something going on there. Then he sent me in for an MRI which revealed the sacroiliitis.

One month ago, my dad made me promise to use his back magnet for two or three days. So I did, along with ice packs five times a day. I could not believe the difference in just a few days: from tears to walking one foot in front of the other; from four or five vicodin a day to none! I continued to rest it, ice it and use the magnet.

Now it's two months later. No pain meds, and I can walk and feel relatively normal, except for a constant light to moderate ache, which I've gotten used to because it's not the severe pain! Now they want me to go in for a cortisone shot, which I have heard is very painful, and they have to do it under x-ray. I'm a little scared.

The word "itis" means inflammation, so I would recommend ice instead of heat.

I'm 27 years old and for the past six years I have had constant pain every day. a couple of years ago after doctors did x-rays, MRIs, blood work and so on, one doctor said it was sacroiliitis.

The only thing i get instant relief with is going to a chiropractor and getting realigned as well as using hot packs but the pain never goes away. I have great difficulty moving around and I'm allergic to anti-inflammatory drugs. So if anyone has a miracle cure please share.

Hi, I'm 28 and was only diagnosed with Sacroiliitis, Fibromyalgia and Ankylosing Spondylitis a year ago after having problems since I was 15. Perhaps because I have fibro I am highly sensitive to most medication and so do not take anything for my conditions.

I was just wondering whether anyone has had any success with certain gentle exercises re: the sacroiliitis because I have lost quite a lot of mobility over the last five years or so and am looking for a bit of hope.

Here are a few tips to reduce pain and then strengthen the area so that it never arises again.

1)take enough alfalfa sprouts into your diet.

2)start taking alfalfa tonic.

3)flax seeds.

4)it would be good if you can eliminate citrusy things from your diet and few other things like potato, cauliflower, rice, onion (esp raw), tomatoes (esp the tangy ones).

5)if in excruciating pain take R11 bk formula by dr reckeweg every half an hour.

6)also take aesculus 200 (homeopathy medicine) twice daily but six times every two mins in one go.

7) hang on, one more. homeopathic medicine natrum sulhuricum (mix it in 1/4 cup warm water 4 -6 tablets)

8)also go and see a good tibetan doc. tibetan medicines and therapy really work.

9)when pain subsides start doing yoga and strengthen your back. good luck.

Sacroiliitis is something I have had for years in varying pain levels. I discovered it was associated with ankylosing spondylitis.

The relief some people get by reducing gluten in their diet might be actually reflecting the levels of starch in those foods.

For me, starch in food triggers off the pain. The work by Dr Ebringer (London) linked the bacteria Klebsiella to it. It eats starch. The diet works for me quite well. Otherwise I expect an antibiotic might help. Research is needed. Has anyone heard of any?

A cure for sacroiliitis: I have been suffering from sacroiliitis since I was 20 and am now 27. It was so bad at times that I had to be hospitalized. I suffered from pain all day and night and eventually had to stop all physical activities.

I had tried every chiro, physio and doctor around and then was introduced to a remedy that has completely changed my life. I now feel no pain at all.

A doctor who researches and specializes in sacroiliitis put me on a course of 1 Trepiline tablet and 1 Veltex tablet at night after dinner and 1 Trepiline and 1 Prednisone tablet in the morning after breakfast. This, together with five minutes of stretching every day has taken my pain away - completely!

I am so so grateful for this that I thought I would share it. I now surf, swim, dive and run with no pain at all, can touch my toes and pretty much lead a normal life. Hope this helps!

Hang in there everyone. I'm 21 and have been in constant pain for over two years now and have been ignored by every medical professional I've tried to talk to.

I've recently been diagnosed with Ankylosing Spondylitis, and have the majority of symptoms associated with the other HLA B27 conditions. One day i hope to join the research effort for this and other similar conditions, as I'm currently studying to be a Biochemist/Molecular biologist.

I know that many of you are experiencing greater pain than me, and that is truly a sad thing. I wish you all the best of luck and for all of our sakes hope that science solves our problems within 10 years.

In reference to the person with fibromyalgia and sacroiliitis I was just diagnosed with sacroiliitis and have had Fibro for about 15 years. This is the most painful combination. I can't even believe it exists, but it does, so here we go. Stay positive as much as possible -- it helps.

I'm 22 years old and I've had sacroiliitis since i was 15. when i first got it, it hurt so badly that i couldn't move at all without help. for several months i took Voltaren and Naproxen which helped a bit (nothing perfect).

I took up running this time last year and over the past few months the pain has been coming back. I've been taking astronomical amounts of voltaren, occasionally take prednisone if it's really bad, get massages, and try to do stretching.

So two things: does anyone know of anything else that might help (that doesn't involve going overseas). and secondly just wanted to say sorry guys, you might be stuck with it for a while. --

rach.

I was diagnosed with sacroiliitis about a week ago following weeks of uncontrollable pelvic pain! The docs thought I had a kidney stone!

Now I am faced with the dilemma of what treatment to go with. There's too much conflicting advice out there. I have also been saddened that there are so many other people suffering the same pain. Good luck to you all. --Kirsten

I've never been to this site and probably won't find it again if I wanted to, but I just wanted to leave this behind for sacroiliac sufferers. I looked into a procedure called prolotherapy. I've had five sessions since late December 2009 and have found great relief. My sixth session is next month and quite possibly, my last session. Although insurance doesn't cover this, it should be a consideration.

I've been going to Dr. Pomeroy in Phoenix, AZ. Hope this helps.

My name's Amy and i am 19 years old. I was diagnosed with Sacroiliitis today. I had my baby about eight minutes ago, and since then, when i would bend over to get something, or pick up my baby, i would get this tingling in my back and it scared me, but it didn't hurt at the time.

It was more like "whoa, what was that?". Then yesterday, i bent over for something and had a pain on the bottom of my back on the left side.

I was just kind of trying to forget it, but then this morning, i turned my upper body to reach for something and felt a sharp pain on my back on my left side, then i turned to face straight again and felt a pop.

I called my mom and told her about it and she made me go to the hospital. So, long story short, they told me i have this, and i got it either from my pregnancy or labor, but it's starting to hurt more.

I'm scared to bend over and feel that pop again. I want to also clean the house, but am scared to do that also, and from what i read on here, you can't get rid of it? could i still work? Does anyone here know more about this than me? help me out. Thanks.

I'm a 14 year old girl, and today I was diagnosed with sacroiliitis. I've been hurting for the past week in my right side of my lower back and hip, and have been almost unable to move at all without screaming in pain. Even just sitting in a car and it turning causes me to scream.

The pain fades a little when I'm laying down with a pillow propping me up some, but I've been in nonstop pain since the first time I started to hurt over a week ago. It's horrible.

I can barely move right now, much less run or play sports do anything like my friends. I can barely sit for five minutes because it hurts so much.

My orthopedic doctor has prescribed be a few things and told me that he had a daughter who had this, but the way he said it sounded nowhere near as bad as it is for me. Everything on my right side from my lower back to my hip hurts.

I hope that it will go away in time, but when I take ten minutes to walk three feet (no lie) I don't see how I'm going to be able to do any of the jobs I want to do when I get older.

I won't be able to be a vet, doctor, or be in the Navy when all of those jobs require me to be able to move easily. I'm only hoping that I can get better and that what my orthopedic doctor is giving me will help.

I'm 58 years old and female, suffering from left hip joint pain from past three months. The pain is not so severe to stop me from routine work but it hurts me lot during some movements. recently it is diagnosed as sacroiliitis, only piroxicam and a muscle relaxant is given as treatment along with physiotherapy. Is it the right treatment? Please suggest.

i'm a 31 y/o male with lifelong Fibromyalgia. It is truly wicked; it even amplifies the brain's pain perception/response by three times the average for any/all pain felt.

i've also had severe recurring pain in my right hip for as long as i remember. it feels as if the joint is "burnt-out" like a fried rotator and is aggravated more and more with each step i take. the pain also goes through my whole leg, knee, ankle and foot. the foot ultimately hurts the worst.

in second grade i was playing kickball and jumped up only to land my right foot on top of the ball, ripping up the tendons/ligaments and landing me on crutches for seven months. Yesterday i saw a new rheumatologist for my fibro and he had me have three quick x-rays to look specifically for 'Sacroiliitis' as i've had a flare up in my right hip-to-toe since Dec 27 that has put/kept me in level 10+ pain and unable to walk without s severe limp at best and hip/knee giving out on me.

there is a secondary uncomfortable 'sensation' that is not quite like most pain i've felt but is still maddening. my leg's been through a taffy-pull, steam-rolled and more.

my main question is if anyone else has had Fibromyalgia running at the same time as sacroiliitis? i had to nearly beg my doc to give my nasty and sudden increase in hip/leg pain any attention, as he was going to write it off to the fibromyalgia alone.

The x-ray results come in tomorrow but from all i've read (and felt for so many years in that leg) i am already sure both conditions are concurrent, that they exacerbate each other, and that i would never have known this nor perhaps even have heard the term Sacroiliitis if i didn't really push my doctor (people, please never be afraid to push your docs, if you are they will ignore you and still take your money).

I am 22 years old. Last four months were full of pain in my right hip and disability in walking after sitting or walking along. Fortunately, the doctors could diagnose sacroiliitis as soon as i went to them and now i am having psychotherapeutic treatment for it.

Also it's much better now, but i constantly have an annoying feeling in my right hip. Seems it will never be totally cured but only suppressed.

I was advised to immediately stop going to sports at least till the pain is there, but instead to ride bike, to go swimming. But riding a bike caused pain so i am not sure it's a good idea. I will try with swimming.

Anyhow, one should strengthen the muscles of the lower back. This is very important, so I am trying to find appropriate exercises to do it without causing more pain. Can anybody help with it?

My physiotherapist says there is no exercise I can do without him, but I am not going to him for the procedures my whole life. So there should be something I can do myself, even at home.

I have been similarly diagnosed. I've tried anti-inflams, injections, etc., and none of them made a significant difference. I then read about a connection between gluten intolerance and sacroiliitis, I removed gluten from my diet and seven days later my pain decreased by 90 percent. Within a month it was gone.

Whenever I get the joint pain (it does happen from time to time but is more of an annoyance instead of a functional immobilizer), I only need to look at what I've been eating for the past few days to realize that I've somehow added gluten to my diet (either through weakness or by accident).

There are many studies on the problems gluten can cause to those that are allergic or highly sensitive. Give it two weeks and see how you feel, and be very vigilant, as gluten seems to be almost everywhere.

It's a high maintenance diet, but beats intolerable pain any day of the week.

i am 32 years old and just diagnosed with sacroiliitis after pregnancy.

my friends all thought i was being dramatic with all the talk of "back pain," but when my x ray showed the problem, i secretly wanted to kiss the doctor, not because i was glad to have a problem, but because he finally told me what the problem was.

my question now is: how do i live with this forever? i can't stand it! pain meds help, but i feel like the docs think I'm pill-seeking and i can't just be on pain meds forever.

who just lives with excruciating back pain their whole life? and I'm terrified to have more kids! someone make me feel better -- please!

I went six months without a diagnosis. Doctors assumed I was a)Lifting my children incorrectly, b)A junkie out for prescription pain meds, or c)Suffering from a herniated disc.

It is nice to finally have a proper diagnosis and a plan for getting better. It was also nice to wake up without debilitating pain for the first time in six months, thanks to the injection.

Unfortunately, having multiple young children, it will be a cold day in Hell before I actually can get adequate rest.

I wish there was a quick fix for this condition. :)

I am a 24 year old female. Just currently found out i have Sacroiliitis. I have terrible pain in my lower back and it hurts to the touch. I cannot be rubbed on my back or sides without having extreme pain.

I also have had a baby recently and suffer from UTI's and skin problems. i have read these are all symptoms. I am now on meds and i have to go see other doctors. I'm relieved to finally know why i'm in pain all the time. I hope everyone else with this problem seeks help and can soon be pain free.

I hope i will be pain free in time without having to take a bunch of pain meds.

I was diagnosed with sacroiliitis about one year ago. Just had my second set of injections. The doctor told me that the dye used before the actual prednisone injection leaked on the right side. He said that was due to some torn ligaments. I take two Tramadol in the morning, two Bayer aspirin in the afternoon, and two Tramadol and one Amrix (extended muscle relaxer at night. So far, I have had about 28 days of relief. The pain is only mild and I can stand it. The nights are the worst. There is no pain like it. I read all the comments and totally understand. I wish we could all get better.

I have been diagnosed with sacroiliitis and was hospitalized where I was treated with anti-inflammatory drip. I am now on Celebrex. I want to know if anybody can tell me whether this would cause loss of reflex in the knee with pins and needles from knee to ankle, and loss of feeling on my knee cap, with loss of muscle strength in my thighs. for example if I go down on my haunches, I cannot just stand up without assistance. Is this common with sacroiliitis and will I have this problem for the rest of time?

I too suffered from sacroiliitis, I believe. My tailbone even seemed to shift out of place two times. I could not sit to work or drive. I also noticed a correlation with being constipated. Well, I've since learned it is directly and totally related to what I ingest. And, after taking all the IgG, IgE, IgA blood /fecal tests, I now know I am intolerant of gluten, dairy, soy, eggs, bananas, and more. I have done a complete elimination, and I am getting younger all the time. My joints were totally locked up and I had numerous problems overall. It is now ALL gone. Best of luck to you. Jeanne in Austin, TX.

Dear All: I was diagnosed at the age of 28 years old with spondylitis, with the onset of sacroiliitis. After a few years of cortosone, had decided to try the natural route, and went off to India and was treated via Ayurvedic methods. I have changed my diet, and the relief has been phenomenal. There is a place for both western medication for their accurate diagnosis, but I found my answer in Ayurveda. I personally think one should try everything available to them. This disease is unfortunately very expensive to treat the symptoms. Good luck all, try abstaining from meats, gassy drinks and gassy vegetables. It has really worked for me. GB

I'm a 55 year old female with my share of aches and pains. but one that is really unbearable at times is in my right hip. It feels as if it is between my spine and the right hip joint. I may be wrong. It may very well be in the joint. Anyway I have been living on over the counter arthritis pain killers. 3-4 at a time, that can be some pretty potent medication for most, but that's what it took to knock out the pain for the time being. I now take the Glucosamine Chondroitin-double strength. I noticed the next morning I was able to get up out of bed with such ease. I stopped for a moment when I realized this and had to ask myself what was going on? That was too easy. Why didn't that hurt like it usually did? To get up out of bed was a painful chore in itself that had to be done by stretching and holding onto the door frame in order to just stand up. But that morning was such an easy thing to do, and it was without pain, which was wonderful! I would take 2 pills at night and 2 pills in the morn. After awhile the pain began to come back, so I gave it a booster of Coral Calcium. I take 3-4 pills at night before I go to bed and then I also do a hip exercise daily. Easy to do! Stand behind a chair to hold onto, and then kick to the right with your left foot and then kick to the left with your right foot. Start out with 5- 10 times each foot and then progress from there. No more than 20 times each side. But believe me please this will make a world of difference for you! This one little exercise was told to me by the highest source available. I prayed on this for so long a time because I was afraid I would be a cripple and I knew it had to be something so simple to do. I did this exercise even before the pills and it worked at the time. So now I call it my Combo Cocktail and it works for me! I hope it will work for you! God bless.

I am 59 years old and I have been diagnosed with multilevel disk bulges N.B, facet arthritis, spinal stenosis, L3, with a small cyst or hemangioma,and sacroiliitis. I had injections, cortisone shots from 1999 until 2005, taken celebrex and percocet. I had this problem for 11 years, alone with other health problems. Can anyone help?

I have read several of these postings and it seems like many are on a wild goose chase. Seek the opinion of a chiropractor. Simply put, the chronic sharp pain in the SI joint is likely the result of stretched/strained ligaments as a result of a slightly out-of-placed joint. A chiropractor is trained with the dexterity sense to determine this problem and fix it with an adjustment. This is the most common cause of sacroiliitis and with this treatment you should notice a drastic improvement in 2-3 days. Do yourselves a favor and go to someone who sees this condition almost every day in their office. --Jim

Hi! i'm 24 years old. One year ago i suffered from sacroiliitis acutely. Still i could not know the cause of it. I can just predict that it could be due to due to urinary tract infection but i never had suffered from an very severe UTI. it was just once i suffered and i got treated by drinking a lot of water and i didn't take any medication for UTI and the reason i predict to be the cause is that i had a fall from a terrace while i was a little child of around 3 years. I want to know among this what might be the cause? And i want to know will i have this problem for my whole life? Or will i have any complication in my future life? one more curiosity is about my future pregnancy. I came to know that pregnancy is one of the cause of sacroiliitis so, will i be able to become pregnant in my future life?

Thank you

I thoroughly recommend trying Reflexology - make sure the practitioner is IIR trained (International Institute of Reflexology).

Hello I'm a 15 year old female, I found out I had this around a month ago and have had it for around 2 or 3 years now having been a mystery to all the doctors I had gone to see. The past years have been filled with excruciating pain and frustration. Finally now that they've diagnosed me I have began physical therapy which really hasn't done much for me but triggered it even more. I've been in so much pain and I can't even sleep at night because of it. I don't know what to do anymore; not even the strongest of medicines are working now. -Advice?? (thank you)

I have had sacroiliitis for the last year and a half. The worst thing for me is the pain in my right hip. I don't get more then 2-3 hrs of sleep at night; no matter what position I lay in the hip starts to throb. I have had the whole gamet of injections, and abalation now my doc suggested a nuerostimulator. I am thinking about it but this sounds pretty drastic. Can someone comment on this.

I am a 26 year old male. I have had this condition for the past 6 and a half years. At worst I couldn't walk and at best I hope to be playing sports again soon. I've had everything done to me but nothing really helped. I’ve been with my physio for the past year now who has help stretch out my muscles and massaging around the buttocks. Along with stretching this has eased most my pain. I do know its still there but I can’t really call it pain that is there. I do not believe in tablets yet because I’m too young but I also know others will not have this choice. I only found out last week that I had this condition but the doctor is testing my blood to see how serious it is. A good physio can do a lot of good. I’m now running 3 miles 3 times a week and having no problems. The physio is confident that he can have me back playing rugby during this in coming season. I hope everyone can find some comfort like me.

I am 41 and have just been told that I have this wonderful condition. I had ulcerative colitis (which is directly related!!) for 22 years and had to have my colon removed. I was on steroids for the majority of that time. Last year I had a cat scan done because of back pain and found out I had a herniated disc. I had surgery in December which fixed the disc and then realized I have different pain. I have been told this is what I have - sacrilitis - so off I go to have the cortisone shot in my back - *very little relief* - I can't take anything to move inflammation - I am allergic to ASA and related ingredients - I haven't slept in my bed for 2 and a half years - can't work, walk, lay down, move - what is a girl to do?

Well i am so glad i have found this website and no longer feel alone with this crippling problem, mine started after having lots of kidney infections then i became pregnant not long after.

It took ages to diagnose until i saw a private consultant who conducted an MRI on me since then i have had one course of cortisone injections which helped take the edge of my pain but i still have quite unbearable flair-ups usually when my period is due or if the weather suddenly changes.

other factors that flair it up are sitting for long periods walking etc.

I try and deal with the pain alone and believe me it really hurts but i hate taking pills.

It is so reassuring that other people are in the same situation as me and it isn't just me being soft, i know the pain is really there and in a way feel disabled at times.

I've tried swimming to ease the pain which is OK while in the pool but the moment i come out i can feel it.

all i want to say really is that i'm so happy i have found this site.

i'm 18 years old, i was in pain for 5 years in my right hip and lower back, and found out last march that i've got sacroiliitis, my doc says that it could be in my DNA.

I can't walk far and sit down for a long time, at night time it's so painful does any1 else get pain when they lay down at nght and turn over in bed?

If it's any consolation sacroiliitis can be a long term condition that never completely goes. I had a broken left fibula in 1961. Throughout my 20s and 30s I found playing rugby often left me with a pain around the SI joint only I didn't realize the significance then. I gave up most sports around about 1979 because of the pain but kept fairly fit. When I had a year out to do my masters I commenced sport again, only tug-of-war and swimming but back came the pain worse than ever.

I visited an osteopath who diagnosed SI and rotated my joint and advised a lift in one shoe having identified my left leg was shorter by about 1/4". He also adivsed I climb into my car in a manner that didn't open the pelvis, both legs together and swing them in. This eased the pain and made it more bearable for a few years. Now it is back with a vengeance and I find one activity like a bit of gardening is enough to cause severe pain radiating down my leg and spasms of the back. Anti-inflams are some use but I've just had to have those strengthened.

The medics are now starting an investigation to see what is going on. Mind you at 62 will they find much they can do? I was told many years ago that the joint could be stapled but I've seen no literature about that and I'm not sure that wouldn't cause as many problems as it might solve. Maybe I'll be back with a progress report as the case continues.

Has anyone tried Omega-3 essential fatty acids to treat this condition? The typical American diet is completely void of this essential nutrient. Omega-3's mediate the inflammatory response in our bodies. Without it, inflammation can get out of control and start to cause a host of other problems.

A classic symptom of Omega-3 deficiency is skin disorders like eczema which is also a symptom of Sacrolitiitis. It'd be worth trying!

What's the connection between sacroilitis and ankylosing spondalitis? If I have SI, does that necessarily mean I have AS?

Hi, I was rushed into the hospital 16 years ago (aged 10) with severe pain in my stomach, pelvis and legs. I was diagnosed with Mesantericadonitis (?)until further tests were carried out, with a brief scary moment of appendicitis. Then was told that I had irritable hips and was threatened with traction.

My parents took me to an Osteopath to help loosen my hips and alleviate some of the pain, it was only then did I get sent for an X-Ray which showed the infection and that It could be treated.

I was a dancer at the time and had to stop all of these activities for 2 years due to my bones being so young.

Now I stiffen up whenever I travel for long periods of time, carry out too much exercise or high impact movement and am caused great pain when the weather gets cold or damp!

I am due to run a half marathon in 5 months, the training (not too aggressive) seems to have alleviated some of the discomfort, but if pushed too hard I can be crippled with the pain!

I am not sure of the long term affects this infection has caused, but 16 years on I am still pushing myself to ensure that it doesn't immobilize me just yet!

I just found out today that I have sacroiliitis. I haven't slept for more than an hour or two straight in days. The doctor gave me Tylenol with codeine. The first dose helped me to sleep for a few hours. The second dose has done nothing. I go back for blood work tomorrow. Maybe it will be an infection that will clear up with antibiotics? I'm not even sure I understand this disease.

I hear almost everybody with my same story, I went to hospital and 15 days later no doctor was able to find out what it was, Ended up been a massive inflammation on the sacro illiac joints. *very* Painful. The best medication is Embrel (Etanercept)

I hope you don't have to suffer what I was suffering before I use this medication.

Thanks

Hello all:

Had this condition, verified by MRI for 6 years. I am in my 50's and always been physically active.

I am sick of this, I'm always in pain. But when I am doing yoga and swimming, I have some relief. I will not get the cortisone injections because they destroy the joint. However, I do take pain medication and would like to stop or lower that.

Yoga is good for relaxation and getting your core more stable. I've tried every kind of doctor too and now am doing my own thing. Doctors frustrate me.

This site has shown me that I was on the right track and should continue with strength training

Hi all, I came across this website and after feeling so alone for the last 3 years I found that there are people out there suffering the same way I am. My story began in February 2006, I slipped getting out of the shower. The onset of symptoms was immediate. I have pain after sitting, standing, driving, walking for short periods of time. The pain is in my left is joint and radiates down my leg into my small toe. Its extremely debilitating. I've had 9 cortisone injections, only one of which gave me any relief and even that was short lived, it only lasted 6 weeks but the symptoms began returning after 3 weeks but was bearable until week 6. That was in March of this year and since then Ive had 2 more si joint injections both of which were unsuccessful. I feel so alone. Ive seen physiotherapists, orthopedic surgeons, rheumatoid specialists. Ive tried acupuncture, swimming, walking and nothing seems to help. Im on very strong painkillers - oxycontin, oxynorm and arcoxia none of which kill the pain they certainly take the edge off the pain but so far there has been no miracle cure. Im off work as I can sit long enough in the car to get to work and then when Im there I have trouble walking around the office and sitting at my desk. Im 26 and I feel like my life is no longer in my control. Im at the mercy of this inflammatory illness which haunts me. Im scheduled to go into hospital for more tests in 2 weeks time. Ive had 6 MRI scans, a bone scan, a CT scan and an Xray...where do I go from here? I want my life back....

Try doing glute strengthening and rotary lat exercises.

Well after a friend fell on me recently and having spent a week in hospital, I have been diagnosed as having sacroliitis, I am only 13 years old, can I expect this to continue this was bought on by the trauma of having my friend fall on me and up until then I hadn't really felt anything!! Can I expect this to be with me forever now, this terrible pain at the beginning, high temp and vomiting! at the moment I am walking with crutches, it was diagnosed with 2 MRI scans and blood tests and at the moment we are waiting for my blood levels to come down!

Hi guys, I'm 21 years old and have a problem with sacroilitis for about 2 years now. It started in August 2006, when the pain was too severe and i could hardly sleep in the night. I was hospitalized too for a while, but as usual the docs could hardly diagnose it. I was on pain killers, and the pain went around November. From then on, i was totally pain free, and could even play football and other sports till about August last year, when it all came back. I haven't been pain free since, and even though its much better now and isn't severe, it's still there. I still can't play any sports or run for more than 5-10 seconds.

I recently visited a doc who's like a chiro, and he told me he could cure me completely. He realigned my back which instantly took most of the pain away. He also suggested accupressure(a chinese method), in which i need to stick a few magnets to different parts of my hand overnight. However, the pain was never cured completely. Since im studying outside of my hometown i can only see him once in six months, and he said that once he has 5-6 regular sessions with me he'll completely cure me. Do you think it's possible? This really is a handicap and i can't tolerate it anymore, as i see other people of my age doing things i can't do. Any suggestions?

I was diagnosed with sacroiliitis after my second pregnancy. In the beginning, the pain was so great that my entire left leg would give out. Sleeping was difficult as well. After reading some of the discussion postings, it sounds like physical therapy does help, so I guess I'll start going. I have been doing yoga, stretch exercises and ab/glut exercises and the pain is less frequent. I always feel more pain shortly before and during rain. I also take Motrin about 3 times a week. It works for me. I really do recommend yoga.

Hi I have been in pain for about a year. I thought it was my scoliosis. then the pain got unbearable. I found out that I have sacroiliitis. My wife thinks that I'm just lazy. I can't do anything for long periods of time. I can't go to class because it hurts to sit for to long. I have been taking a lot of vicodin. I have been drinking a lot too. I don't have insurance, I'm a full time student. I have two young children 3yrs. and 1 year. I don't know what to do. I don't want to live the rest of my life like this, but I can't give up because of my kids. I need some help and I don't know were to turn to. I'm 27 and feel like I'm dying.

Along with the above, try this exercise:

Standing with feet shoulder width apart, swing your arms together from side to side at shoulder height, twisting your torso as far as you can while keeping your hips stable. More effective is holding a rod across your shoulders and doing the same twisting movement, keeping head and hips facing forward. I have been doing this exercise and I am the closest to being pain free as I've been in 3 years! (Note: doctors recommend treating sacroiliitis with lat rotary and glute exercises.)

You will also see improvement by doing glute and lat strengthening exercises.

Dear chingcu

Thanks for sharing your experience with us, for almost 2 years I've thought I had sacroilities, but for the last 2 months I've started to visit doctors again and took many MRIs and blood tests, my problem was that I am having much pain and swelling in my hip but all my tests say that I am normal!! the hip joint is in it's place all dimensions are correct but no one knows why I'm having this pain and why it's swollen!!

As you said i always keep warm, when I feel a little bit cold my pain increases!

So 2 weeks ago one of my doctors advised me to visit one woman, she is a Bioenergy therapist, with crystals and herbs and laser.... so because I was just looking for a diagnosis, I was ready to do anything, so I went there and she checked all my energy paths using a device that is connected to a program in her PC. this device measured my energy and found there was a problem with my gallenblase, in the program all my inner organs were shown in different colors, each color indicates something. İt was clear that something was wrong in my gallenblase, and this has caused a kind of bone infection that hit the tissues between the skin and the bone and she gave me the name of the bacteria that was responsible for that. that was a great relief. she gave me a strict diet. All the things I used to eat are now forbidden, and I'm eating different things now. next week I'm going for my third seance, she told me it will take time but be sure it will go a way....next time we will start with herbs that are good for me along with the laser therapy.....

Silva

I am posting to share some of my success with dealing with sacroiliitis.

I am 30 years old and have had the condition since I was 18. It was misdiagnosed at first until I was 20 when I was involved with a car accident that aggravated my back. After the doctor analyzed my blood and x-ray of my back he was able to determine that I had Sacroiliitis. The joint specialist prescribed vioxx which was later banned and I moved to celebrex. Read a lot of bad things about anti-inflammatory so I tried not to take it unless I got attacks so bad where I basically can't move due to the severe pain. So I suffered for a long time, but like most everyone here, you find your ways to deal with the pain (i.e. certain movement, positioning when you sleep, not sitting too long, etc. etc.)

The one thing that worked very very well for me so far is keeping my legs and feet warm. I basically wear thermal socks and thermal pants all the time (no shorts except for when i'm vacationing in a tropical climate or it's a very very hot summer) otherwise I never ever get my legs and feet cool. It really works for me, my doctor never prescribed this and it was my mom who told me to keep warm (as asians, we don't like any cold in the body, drink hot water, eat hot food, dress warm). I used to like wearing shorts and no socks around the house but I don't do that anymore. Ever since I kept warm, I've not had an attack. On occasion I would think that since it's summertime, I'll wear shorts around but then at night when the temperature drops to about 10-20degC, I start feeling the tingling sensation on my SI joint. That tells me to put something warm on. You slowly get used to the warm and start to be afraid of the cold. The only drawback is that sometimes my privates gets too hot but you get used to that too.

The other thing that I suffered is I would wake up with a stiff lower back in the morning and sometimes it was so stiff that I have a hard time breathing. What I found effective is sleeping on an air mattress. I have to reduce the air pressure a bit to the point that my entire spine is supported when I sleep on my side. After about 2 days of sleeping on it, I get full relief from a stiff back.

Finally, I stayed in beijing china for 10 months and during that time I was determined to find a cure (through alternative medicine) for my sacroiliitis. Like here, I had a hard time convincing the doctors that I have that condition because I walk normally but after they saw my xrays they are convinced. After going to the top alternative doctors there, I basically learned that there is a way to cure it, it will mean having to drink bitter chinese medicine from exotic ingredients for months. and they said that their is no guarantee that it will not come back. since this is autoimmune disorder, certain things may trigger it again. I tried the medicine for a few weeks costing me $40 a week of medicine which wasn't cheap over there. I did feel relief but I decided to stop because my stay there was about to be over and I could not get these ingredient where I live in Canada and the fact that there is a chance that it will come back. I've not had an attack for a while (except for the occasional pain when I forget to keep warm) so I discontinued. During my conversations with the alternative medicine doctors there, they told me two things that I laughed at at first but soon realized that there is truth to it. This doctor claimed to be very knowledgeable of this condition and he is very old and seem to have a lot of experience and is apparently well known over there. He said that I should not drink cold beer at all because it will go straight to my joints. Also, I cannot have extended sexual activity or masturbation as this will cause too much loss of fluid around my hip region. I know it sounds funny but I observed that this was the case. Now I don't drink beer, and since I have a girlfriend, I do have to have those extended sessions and I find that afterwards I start getting tingling sensation on my SI joint, at which point I do whatever I can to keep extra warm and drink lots of warm water. Sounds crazy I know but definitely works for me.

I been meaning to post my experience in hopes that it may help someone out there. It doesn't hurt to try my suggestion and I would love to know if it will work for you just as much as it is work for me. I know how painful an attack feeling like you just want to cut your legs off and be done with the severe pain. I am so scared of having that experience again and when I read a people suffering from this condition on these forums, I can't help but feel very very sorry.

Take care everyone,

chingcu

I have a question about sacrioliitis. Is it true that once you have this condition that you will have it for life? That sometimes it may feel better and other times will get worse? I have had this problem for about a year now. I am going to physio therapy, have just been put on Celebrex, go to Chiropractor, use heat and Tylenol. I guess I am wondering if a job that is physically demanding is appropriate for someone with this condition. Will I be able to return to my job or will I have to look into another type of work? Thanks so much! Hope someone can answer these questions for me!

Hello Anon9066,

I'm curious to hear how your doctor explains why exercise works only temporally to relieve pain. I have been strength training and am progressively been getting better without meds. What meds has he been prescribing?

Hi everyone! I’m 17 years old and the last month I was diagnosed with sacroiliitis. It all started 2 years ago, when a strong pain attacked me, it was difficult to be sitting or standing for a long period of time, and almost impossible to lay dawn, for me the night was a whole nightmare because the pain in my lower back was really strong and at the morning when I woke up it was even stronger. Because of the pain I started to visit doctors and physical therapists, but they all said it was cause of the stress product of my school, and told me to do some specific exercises. It was hard but usually the pain left me for a few hours after I exercise, then it came back, stronger. Because of the pain I started to do some movements with my back that make me feel just a little bit better, so now the pain is located in my upper back because of those movements, that’s when I decided to go to one of the best orthopedists in my country.

When I visit the doctor for the first time he practices a physical test on me and found the real diagnosis, sacroiliitis. He explained to me why exercise made me feel better for a while, but told me to be careful because what I needed was rest and a strong dose of medicines. He told me to put over my sacroiliac zone wet towels, and over them a bag with hot water, which really helps me to reduce the pain. Also he prescribes me a series of medicines, some pills and some injection. Now, one month later, 80% of the pain is gone, and I haven’t finished all of my meds. Once I thought I would have to live with this pain for the rest of my life, and I’m sure you too. But now I know there’s a cure.

Chris,

I really feel for you, because 2 1/2 years ago I suffered a similar debilitating pain that left me barely being able to move for a few days. Just laying on the couch was agonizing, and crawling to the bathroom was a journey through hell. I told myself I did not want to live the rest of my life like this. Fortunately, I improved to the point of being able to stand, but I still could not support my torso on my hips without help (I borrowed my mother's walker!) As I mentioned earlier, it has been recommended that one should do glute exercises for sacroiliitis and I have seen a trainer to learn some. I have discovered that compared to my "good" side, my glutes and quads are extremely weak. I have always been physically active doing cycling and power walking, but still I developed this "imbalance" that can only be improved with strength training of the affected side. I am still not out of the woods, but I at least have good days now...and hope.

Dear ladies,

I am in my 3rd trimester, my second pregnancy. I was diagnosed w/ Sacroiliitis after my first pregnancy. I wasn't even aware that I had it...I just thought that my hips were out of alignment after my delivery and that is why I am unable to lay on my back. I was diagnosed after an MRI. Well, it doesn't go away w/ pregnancy...the pain for me has only worsened. I have had to crawl myself to the bathroom at night or lay on the floor until I get the energy to try to get up. I can no longer clean my own house or do anything on my own. As you know the pain is so debilitating. When I bend over to pick up a toy, I fall to the floor in pain. There is nothing I can do other than light physical therapy once a week, my only relief. Talk to your physical therapist or your OBGYN about pain relief and healing your body before you become pregnant. I did not follow my doctor's advice before I became pregnant for the second time and now I am most certainly paying for it.

Dear Natie

What you have said had helped me a great deal. because I want to have a baby it will be my first child. but I was afraid. I have been to 5 doctors and each one gave me a different diagnosis. My first doctor told me I had sacroiliitis. and after 6 months of medications I went to other doctors who told me I didn't have sacroiliitis, now I'm just looking for an answer! the last doctor I have been to told me it could be a disk in your back that's affecting my hip and leg, so tomorrow I'm having my MRI for my spine, I really hope I don't have sacroiliitis !

I believe that the issue of pregnancy and how it will affect Sacroiliitis depends on the individual. I am 29 years old and I have been suffering with SI now for almost 6 years. I just recently had a beautiful baby boy who is now almost four months old. My pain is usually at its worst during the colder months (October - April or May) with the occasional onset during the remaining months of the year. During my pregnancy I experienced very little to no pain and have only had two small episodes since my baby's delivery this past October. Both my GP and Rheumatologist agree that in some cases the miracle of pregnancy takes over and pain disappears possibly as a protection to the fetus. It has also been noted by my doctors that they have seen this before and that it will usually last (being pain-free) for up to six months after the birth. I hope that with this being said that some of you may consider the wonderful experience of pregnancy, childbirth and loving a child. Even if I had suffered through it all... I am going to take that chance again! There is no love greater than the love a mother has for her child!

I suffered from chronic back pain for 18 months. I could not stand for longer than a few moments, I had to physically lift my right leg or left leg into the car, I couldn't sit or sleep comfortably. Then my Doctor suggested Bio-Kinetics. I went to a Bio-Kineticist and today I am pain free. I was given exercises to do and as long as I do them on a regular basis I am totally pain free. It cost me a bomb, but it was worth it. I was also given exercises for my knee to strengthen it because got osteoarthritis. I recommend Bio-Kinetics any day.

ELaine

Hi Wendyh,

Have you been checked for lupus?

Re: sacroiliitis, what I'm reading here is that the best results in alleviating pain is through strength training of the glutes and quads!

Suzanne, I don't remember what website that I was on (and cannot find it now), but it related sacroiliitis to behcets syndrome. My Doc also mentioned Reiter's Syndrome, but I only have one of the symptoms, so I know that is not it. I do have several different issues with my body, mainly skin disorders. My doc told me that they are all related to each other, including the sacroiliitis.

I was diagnosed 6 months ago with Sacroiliitis and immediately went to the PT. He gave me some core strengthening exercises to do and some stretches. I am 100% pain free with an occasional minor flare up. The most effective exercise was to stand sideways on a step on one foot so that the other leg is hanging in the air. Relax the hanging leg as much as possible to allow it drop bellow the level of the step. Then raise it up by lifting your with your hip. Kind of like a belly dancer. The only movement in your body should be in your hip. Repeat this for each leg 10 to 15 times. I think this stretches the muscles and tendons of the SI joint and promotes healing. I also have been sleeping on a heating pad which has helped quite a bit as well. Good luck!!

Agreed, celiac's disease is not uncommon and a cause of a myriad of undiagnosed health problems, and granted people who have sacroiliitis may be celiac, but I have never heard of celiac's causing sacroiliitis or visa versa, and I have read a lot about both health issues. If you have celiac's disease DON'T eat gluten, if you have sacroiliitis do leg presses or one legged squats! If you are celiac, dropping gluten, who knows, may clear up your sacroiliitis, but ridding yourself of sacroiliitis will never cure you of celiac's disease if you have it.

I have been reading that sacroiliitis is closely associated with celiac disease, which is an autoimmune disorder in which gluten is perceived by the body as foreign. It destroys the small intestine villi. If you have sacroiliitis, it is worth checking into testing for celiac disease. If you have it the only cure it to not eat gluten for the rest of your life, so that your intestines heal. Many other symptoms are associated with it as well--mouth ulcers, abdominal pain, diarrhea, depression, etc. There is a long list of seemingly unrelated symptoms. Good luck to all of you!

Hi Wendyh,

I have never heard of this behcet's syndrome, but it sounds pretty serious (skin ulcerations, inflammation) but I didn't read anything about hip pain associated with it. I have, however, heard of eye inflammation associated with sacroiliitis. All kinds of inflammatory diseases are can be linked to excess weight though. Don't let pain keep you from moving! I have been doing those one legged squats for a few weeks now and I have very little of the leg/hip pain I suffered with for 2 1/2 years. I can do yoga again and I plan to start going to the gym to do leg presses with machines. Has this exercise working for anyone else with sacroiliitis?

Thanks Suzanne for the info. I will definitely be trying that!

Hey everyone. I was diagnosed with sacroiliitis about 5 years ago. I am currently 26. It started off as just a tightening pain on my left hip, and when I sat down for periods of time, my left leg would go numb. My doctor gave me a corticosteroid shot and it helped for about a month and then I gained about 30lbs. I went back last year cause the pain was getting to be too much and he gave me another shot that made me gain 30 more lbs and did absolutely nothing for me. So I am stuck taking NSAIDS with acid reducers to control the indigestion. I have done some research on it and found behcets syndrome. Some of you need to read up on it and see if it matches your symptoms. I have talked to my doc about it and he agrees with me that that is what I have.....

Good luck to all! Oh and p.s., I am never getting pregnant....I already figured it would hurt and after reading everyone's stories, I know now I was right!

Silva & others,

Every day gets better! The "tightening" pain I had in the area has been replaced by a sore muscle pain, the type you get when you haven't worked that muscle for awhile. That tells me that that those muscles are finally getting some blood to them and are being reconditioned. I have been drinking lots of water to flush the released toxins away. Thank you Dr. Mirkin!

Thank you Suzanne. I will try that exercise. hope it will work for me!

I am 51 and have been living with pretty much constant agony for 2 1/2 years now after "throwing my back out" doing a lot of cycling. I have seen every professional "...ist" there is out there, with only minor results. A rheumatologist gave me hope after prescribing core strengthening exercises to help with degenerated discs in my lower back, but that hasn't really touched the problem. It feels like a tightening, twisting feeling around my left sacroiliac joint with pain that sometimes radiates to my toes and my body feels "out of kilter" or "corkscrewed". Sound familiar? I googled "sacroilitis" and came across your web site and another posting by Dr. Gabe Mirkin (well respected US physician) who wrote: "Move your hands from the top of your pelvis at your sides around to your back where you will feel a bump just to the side of your spine. That's the sacroiliac joint where your pelvic bones attach to your spine. If it hurts to touch that spot and when you bend forward or backward, you probably have sacroiliitis. This research shows that people with sacroiliitis have an overactive gluteus muscle in the buttocks below that painful joint and an overactive latissimus dorsi muscle in the back above the sacroiliac joint on the other side. Special rotary exercises that strengthen the latissimus dorsi on the other side and leg press exercises that strengthen the gluteus muscle on the same side were effective in controlling back pain in the sacroiliac joint."

I have started with leg presses: Stand with arms at sides (hold on to countertop on one side to steady, if necessary). Cross lower leg above knee of supporting leg. Squat down as low as possible. Extend knee and hip until leg is straight. Return and repeat. Continue with opposite leg. You can try this later holding on to dumbbells. Range of motion will be improved with greater leg strength and glute flexibility. Forward knee should point same direction as foot throughout movement.

This exercise is working for me and for the first time in months I went on a power walk without being in agony after!!! Please let me know if this works for any of you.

Hi, everyone,

I'm so sorry to hear how many of you have this problem too. At least I'm having it at age 60, not when I'm really young. It has taken me 1-1/2 years and many doctors to get the diagnosis of sacroiliitis, and I'm hopeful I'll get better now. My main problem is that I can't tolerate sitting. It is SO painful after about 10 minutes. And I'm a psychologist, so it is seriously affecting my work. I understand from my orthopedic surgeon that the best treatment is physical therapy, injections in the SI joint, and high doses of non-steroidal anti-inflammatories. Physical therapy has really helped me temporarily but the minute I sit for a half hour, all the symptoms are back. I'm hopeful about the injections. Will keep you posted. In the meantime, take good care of yourselves, and have faith that somehow we'll find a way to take care of this problem.

Dear friends

thanks for your replies. just last week I went to an Orthopedic doctor and got a new MRI, the doctor checked the results carefully, the results showed some fluid gathered in my hip and other than that everything else was normal. the doctor didn't care much about it and told me I should apply ice bags at that area (knowing that when the weather is a little bit cold my pain increases) so I don't know how I'm going to apply ice! İf there is BONE CYST shouldn't it be clear in the MRI? And I really want to have a baby and all my doctors said pregnancy will not cause me any problems, yet I'm too scared. Also I'm reading about acupuncture, some say it helps with decreasing the pain, others say it doesn't. I wish there was a doctor here reading these posts!!

I am 30 and have just been diagnosed with Sacroiliitis. I have had intermittent pain for almost 8 years. I started to notice it after my first pregnancy. I had my second child about a year ago and the pain was so horrible throughout my entire pregnancy. My personal experience is that pregnancy increases the pain and intensity of the condition. Just recently the pain returned out of nowhere, and I cannot seem to get rid of it. I am now under the care of a neurologist who took xrays and an MRI and all was fine. He also gave me a prescription of vicodin which does nothing for my pain. I am about to begin 4-6 weeks of physical therapy and injection at the site. I will keep you posted with the results.

Dear Sylvia-

I had the same problem in my right hip for almost eight years. I went to a dozen doctors, including a rheumatologist, and everyone missed the problem. Finally, my new OBGYN told me that if I thought I had a problem in my hip bone, I probably did. She sent me to an Orthopedic doctor who looked at my most recent x-ray, and told me I had an enormous BONE CYST in the bone that was causing the swelling and pain, and that I'd have to have emergency hip surgery because the bone was almost all eaten up. The cyst was as big as a golf ball. Then I found out that most doctors don't usually look at your actual x-rays, they look at a typed paper report that has the opinion of the radiologist who took the x-ray. That was last year, and now I always ask if they've looked at the actual x-ray, or the paper report. I'm better, but I have sacroiliitis in the lower back, and I don't think that's ever going away unless they prescribe something stronger than Aleve or Tylenol. I have been told it will get worse with pregnancy because it will stretch the sacroiliitic joint out more. That doesn't encourage me, because it already hurts plenty.

hi

Well there is one thing for sure that all my doctors have agreed on. they've told me that pregnancy and birth will definitely help me. Because having birth gives a chance for the woman's body to renew itself. So I have stopped my main medicine and now waiting for 6 months till my body cleans itself.Then I can get pregnant (this is all under my doctor's supervision.) I am willing to take my chance. I would like to have a baby soon and if it won't help I don't think it will make me worse! What does your doctor think about it by the way?

The doctor I have mention before stays in Jordan. he has a website but not all information are translated to english.

right now I am willing to try ANYTHİNG just to get better..

Dear Silva,

It is the same with me. I've cried so much to see it, and I don't know what to do with it.

Can you send over some more information about the doctor and his idea of controlling the food, does someone know what to do with it and what is happening when women try to get pregnant?

Hi, it's me Silva. has any one of you noticed a change in the shape of the hip? I'm still having pains and now I have noticed that my right hip is bigger than my left one. İt's somehow clear especially when ı wear pants. it hurts me much to see that!

I have read about one doctor and sent him an email. He basically treats his patients by controlling their food. So, I think ı will join his list, after all I have got nothing to lose.

i am 27 years old. i just made it back home after a 2 week stay in the hospital. i have been diagnosed with sacroiliitis. it started off as a crap in my left butt cheek/hip one afternoon. i woke up in the middle of the night and couldn't walk. i had to crawl on the floor in the worst pain of my life just to get to the phone and call someone for help. i have never felt such pain in my LIFE! i was in the hospital for about a week and a half before the doctors finally diagnosed me. i'm basically having to learn to walk again. i'm really hoping things are going to get better, and quick. i can understand everyones pain and hope no one ever has to experience something like this.

I'm 17 and when I was 12 I got a regular flu shot from a free clinic. Later that evening I began to feel pain in my lower back, only on the left side. The next day I could barely walk, and the day after I couldn't walk at all. I was this way for a month. Undergoing a lot of tests at the hospital. They eventually decided that I had sacroiliitis and they gave me pills to take for a month. It went away within a month and now I feel pretty good except for the random pain I experience at night usually. Sometimes in the morning. It's not completely gone, but I can walk again :). I used to be a pretty good runner, but it hurts now when I run for too long or too hard so I only do it for fun now.

I'm 28 years old, from México. About 7 years ago I began to have this pain. A Dr in UNAM Medical Center told me I had Sacralgia, she told me take Complex B Vitamin and rest, because it was caused by stress... and some laser therapy. I have suffering about 1 and a half year this pain every day. But I found it was associated with sleeping on a wood bunking or lying on the soil, I stop doing that and the pain almost disappears. It appears some times, now I'm suffering it again.

And because of my work I knew about the sacroiliitis and I'm worried about having this disease... Do you think I could have it?

I just turned 19 years old and was just diagnosed with sacroiliitis. It is so painful. I can't walk, sit or move at all for very long. I can't lift anything. Is this curable? or will I just have to take pills for the rest of my life to control it?

I was told I have sacroiliitis about 10 years ago. I am now 32. I suffered with pain from my lower back all the way down to my toes. Some of by toenails even turned black. My specialist told me my sacroiliitis is linked to colitis. I used to take anti inflamatories, they did not work and now I can not take any because I have grown allergic to them. I have gone for many treatments of acupuncture this did seem to help me over time about 9 treatments. Or it could be that I started to eat high fiber and oatmeal everyday. I have not had acupuncture now for about 2 1/2 years. My pain seems to be keept at bay for the last 2 1/2 years. However I do have small what I call tightening and mild pain.

hi. I'm 26 years old I come from Syria. now moved to turkey. 9 months ago at night a strange pain started at my right side. and since that day the pain never left me. 3 months after the pain started ı went to many doctors and never knew what was wrong with me. my pain was so great ı couldn't even talk. the pain was mosly on my right side then started to go down to my hip bone. then one doctor asked for x ray and some blood tests and told me ı have sacroiliitis. and gave me one cortizone injection and some pills for pain and one medicine called SALAZOPYRİN. and said ı have to take it for 6 months. but the pain never left me. some times ı wish to die. I'm still very young I don't know how it happened. ı can't sit for long ı can't walk more than 20 minutes. then ı went to other two doctors one of them told me ı have extra Uric acid (level 5)and it causes me pain and the other one said nothing is wrong with u. just infection and it will pass. its almost one year ım living in constant pain. can acupuncture help me to stop the pain. do ı really have sacrolities? what should ı do? I am ready to give all my blood tests results. new ı found ı have 197 level of B12 vitamine and ı started to take B12 injections