Unstable SI Joint

Hello,

I'm suffering with an unstable SI joint and have been for two years. Wondering if there's anyone out there suffering with a similar problem and if so, have they found anything that helps.

I've seen several physiotherapists, a chiropracter, and an osteopath. None of which has helped. I'm now waiting to see a pain consultant to discuss possible procedures/treatment options that could help.

I'm in constant pain and have been for two years now.

Any advice or information would be really appreciated.

Thank you.

31 Replies

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  • I have unstable iliac joints (the ones each side of the sacrum) which make all the other local joints unstable to a varying degree.

    Tens used to work until the pain moved to a place I couldn't attach the pads with enough gap between.

    I go to a sports physio who releases trigger points which takes a layer of pain away. Some I can do myself, others are too far round on my back and someone has to do these for me.

    I have recently started using memory foam insoles and these seem to help too by making my walking surface a bit softer. It cushions any irregularity in walking and or surface you are walking on. They are about £7.

    Also found short spells of fat pants help. The elastication takes a bit of the support away from the muscles. Not to be worn all the time though. I tend to use them if I know I'm going to be on my feet alot.

    Good luck. Most successful pain relief is found by trial and error.

  • Hello - thank you for taking the time to post. I was told about the slimming pants last week. Haven't tried too much yet as the osteopath strapped my lower back last week. I also find that tens can help temporarily and I think you're right about insoles - I find my pain gets worse when I walk in very flat shoes with no support.

    Glad these things are helping you. Alas the only thing that seems to help give me any relief (only for a couple of hours at the moment) is the osteopath. He calms all the nerve pathways down, which for me are racing at the moment. When I'm very sore it's almost as though you can feel a pulse in my lower back. Bizarre, but true.

    Hoping consultant may be able to offer something slightly longer term but after doing research and speaking to very experienced physios - the longer term treatment options for this condition have mixed results and can be controversial for women of my age.

    Have you had your condition for a long time? do you know how your problem was caused at all?

    Best regards.

  • Hi Gill,

    I've had my problems for 16 years, but they only surfaced and became a problem 10 years ago. I have had various alternative therapists working on me over the years. I have taken elements from each of them and have built my own action plan. I have also got to know how my body reacts in different situations and noted the warning signs ( eg if I walk for more than an hour my shoulder starts freezing up - knowing what to do to prevent this really helps).

    Mine is a mix of congenital abnormality and accidental trauma. There is no cure (well there is surgery but with a 50% success rate that is off limits at present).

    I am used to re-arranging my life and planning how to do things - even simple shopping on my own - I need to know where toilets are, where I can sit in a cafe to rest, which shops will help you do the shop, parking etc. My whole life is a continual risk assesment.

    I do miss just doing things, life sometimes is more complicated now.

    I also use a coccyx cushion, this supports the lower spine properly when sitting by tilting your pelvis slightly forward. I have also recently started using "go faster sticks" as my family call them, hiking sticks to you and me. Because you hold them high up they brace the upperbody keeping the spine aligned. I balance my pelvis with a pilates rock to and fro before I start walking, and since using them, I can see how unbalanced I am when walking. As I don't want to get dependent on them, I use them for off roading or longer country walks.

    I don't do painkillers unless its absolutely necessary. I used to work in the NHS and have seen the effects of badly managed pain killers too many times.

    My nerves took quite a few months to calm down, and now I have a bit of pins and needles or numbness. Very occasionally what I call the screeching violins or electric shocks. It really does amaze me how much energy and power is wasted in making pain. Really, I'd love it if it could be diverted into weightloss- I'd be pencil thin by now. The pain is not really a problem as it is part of me now, I find I get frustrated when it slows me down or reminds me there are things I can't do.

    Although I fit the WHO definition of disability, I am too able for our government to recognise it. I don't really need anything other than a disabled parking space so I can fully open my door to get out.

    Most of the time its bearable, I also do meditation (think of the pain as a colour and change the colour to switch it off), diversion therapy - immerse my self in arts and crafts, and make sure I have a good mix of activity and rest during the day. I think accepting it and working with it to achieve activities and goals is so much healthier for body and mind, than continually meeting brickwalls and not doing anything about it.

    My email is eildonbears@gmail.com if you want to chat.

  • Hi I am new here and have been suffering from si joint dysfunction for a little over 4 1/2 years. When my symptoms started my hips, butt radiated all the way down to my feet (pins and needle sensations) . I had every test that only revealed mild bulging discs that were not touching any nerves or nerve roots. It seemed like some of these docs thought it was all in my head grrr.

    I went to a good PT who examined me symmetrically and told me that my right pelvis on the right was rotated and had right leg longer than left. But because this was left misdiagnosed so long arthritis set in the joints. Now I do this exercises specifically for this condition. It will take a long time to reset and stay in the correct position. If I turn or bent a certain way they pop out of alignment again and the pain starts up again.

    I had a SI joint injection and as soon as the doc injected the novacaine the pain and pins ans needles went away, he also added a steroid for the inflammation. I use a TENS unit, take warm baths and ice packs to reduce the burning sensation. Sometimes it feels like a knife is stuck in my lower back and can not sit too long. It will really act up if I get stressed out because the muscles tighten up and aggravate the sciatic nerves.

    When I lay on my side pain subsides. Sleeping can be hard because if I toss and turn in bed it wakes me up. There is another procedure called radiofrequency ablation that burns the nerves off temporarily. I never had it done so I don't know what the success rate is on that one. From constant unbearable pain like a toothache, now it is intermittent. Still cannot carry anything up the stairs. Never give up until someone can help you relieve the pain even if it means taking painkillers. I bought a a bottle of joint support called "Instaflex" on ebay its quite expensive at your local drug store. I been on it for about a week and I sleep through the night.

  • Hello - thank you for leaving your post. I had a steroid epidural injection in my SI joint on Wednesday and I'm really struggling. The consultant warned me my pain would flare but I'm just praying it will settle as it's unbearable at the moment. I'm very down and finding it really tough to try and stay positive. My pain has been relentless every day for over two years now with no respite and I think it's really taken it's toll. All my symptoms sound very similar to yours. I think I'm grieving at the moment as I am feeling helpless and scared that I won't get better. I've just read so many horror stories - people don't seem to write about the positive stories enough. Could do with a bit of good news :-(

  • Hi I had a steroid shot on both joints about a month ago> I do special kind of exercises 3x a day for about a month or so and I keep doing them. Today I noticed an improvement. I can walk faster and sit back (with a ice pack on the si joints). The only thing I feel right now is weird sensations in my feet. Don't give up hope. Like I said I struggled with this for well over 4 years before anybody knew where the pain was coming from. It felt like my lower back gave out.

    My physiatrist said I will be alright. Maybe my joints needed to reset I don't feel any popping today . I limit strenuous work except walk my dog where I couldn't even do that. Don't give up the light is at the end of the tunnel.

    P.S. I am sleeping better after the shots. I was only getting 2-3 hours of sleep because every time I would toss and turn the joints would go out of alignment and it hurt and the BURNING like hell ran down my left leg and feet and prickling in my lower back and left hip. It simmered down for now.

    Some people don't understand this debilitating pain.

  • That's good you're seeing an improvement. Please keep me posted on how you are coming on. Day 5 after injection and I'm feeling a bit easier but by no means pain free - more the way I did just prior to injection. So really not sure if it's had any impact at all. I start physiotherapy two weeks after injection so next week. They've said this is the optimum time to start after the treatment so I'm hoping this means they expect it to take longer to settle. Fingers crossed anyway.

    I agree - I don't think many people do understand this condition - even the specialists. It's had a huge impact on my life in every way.

    People have told me the same - that they can help me recover and just trying to hold on to that. It's not easy though. Best wishes.

  • I am a 64 year old woman who fell 2 years ago and landed on my butt. Jokingly I said I landed on my fattest part. I ignored going to the Doctor as I hate MRI's. The nerve pain was so bad, and I could not walk, sit, stand or lay down unless I took a sleeping pill, but when I woke up, it all started again. My mornings were the best part, as gravity had not taken hold yet. 5 months later, I went to my knee surgeon assuming I had done something to my knees. An MRI showed both knees with torn meniscus. He scoped both knees, but the pain was still in my right knee and my hip still hurt. I continually experienced weakness in my leg and thigh pain along with groin pain. My knee surgeon referred me to a Pain Doctor assuming that I had bursitis in my hip. The Pain Doctor did an MRI and found that I had a bulge a L3-L4. He gave me two SI Joint injections, and denervation and 5 Cortizone shots in my hip over a 6 month period. I will not take pain medicine as my Dad was addicted. All of the above helped some, but I felt I could not live with it. Finally in December 2012, they started me on antidepressants. My Pain Doctor said I had more than one thing going on and he strongly felt it was not bursitis. He referred me to a Hip Surgeon and who did an MRI with contrast and I had torn my labral in my right hip. I did good during rehab after having no weight bearing for 4 weeks. I had no nerve pain, just pressure in my low back. I accidentally bounced on the exercise ball and the tilted pelvis (or SI joint pain) started all over again. I can walk better since my hip surgery, however, still have the SI Joint instability that has now morphed into Piriformis spasms and sciatic pain clear down my leg. I am going to a Psychologist to help me try to relax the muscle and to learn to live with some form of this pain for the rest of my life. I went to Pain Doctor again today to followup on the Gababentum that he has me on to keep the nerve pain somewhat mute and the Baclofen muscle relaxer. They are going to do another SI joint injection next week and this should help a lot, now that the hip is better. This is a life long process. Do your stretches that do not cause more nerve pain and core stabilizing bridges 3 x a day. It is hard, and I feel your pain. Continue with your Pain Doctor and continue to get injections. They are there to help you MANAGE the nerve pain for the rest of your life. Good luck.

  • Hello

    Thank you for taking the time to reply to my post.

    I've kind of avoided this site for ages as I tend to find that people are on here for a very good reason...they're in pain and not getting better. I guess that's been tough for me to deal with. I find it hard to find any good news stories as I guess most people just get on with their lives once they are better.

    I too have recently had the same development as you and have been diagnosed with a labreal tear in my hip. However, the consultant decided to try a cortisone injection into my hip two weeks ago, prior to referring me for arthroscopy to give him an indication of how effective surgery might be in relieving my pain. Alas, I am still feeling pain at the back of my pelvis and into my lower back. So now my consultant is saying he's not convinced surgery to repair the tear will have any bearing on my pain as he thinks the pain at the back is not linked to the tear and has left the decision to have surgery as my own choice. Tough call!

    I'm getting married on Saturday and trying to stay as positive as possible but it's very tough as I'm sure you know. I'm 33 and take pain killers every day so I can just try to do some normal activities. I've had to half my hours at work and all I can say is thank goodness I have such a supportive partner or who knows what situation I'd be in. Like you, I think taking pain killers is not the answer and certainly not for someone of my age who has (hopefully) a very long life ahead of them. I'll keep trying though. Maybe next stop is a neuropathic surgeon...Best wishes and thank you for you advice and taking the time to comment.

  • i been suffering for almost 2 years with pain in back, groin,hip and leg...they now thinks is si joints..so i went to pain management and started steroid injectios last thursday and so far im not to bad...hope this helps...if this works i have to get 3 in all injections every year

  • Hello - glad that 's helping you. I've not been on here for ages and things have changed for me quite dramatically. I also get pain in groin (sometimes - mainly when I walk too far) but mostly at the side of my hip and into right side lower back. anyway - through pushing to see a new Consultant, they've diagnosed that I have a labreal tear at front of my right hip (causing groin pain) and a bone impingement which is possibly causing pain at side of my hip where I feel it most. So it's not my SI joint after all, which I feel oddly relieved about as from what I read, it seems tricky to manage. I'm still not great and will go for key hole surgery, but I've found yoga is a great help in aiding my back pain (not my hip pain sadly - but anything helps)- since I started in December, it's made a huge difference to my back pain. I'd recommend it to anyone who is able. I've gone from struggling to leave the house last winter to doing and hr and 30 min yoga sessions. Hope you get on well with injections and that is the right source of your pain.

  • thats good you found out whats wrong....what procedure did they do to find out that you have that tear........do you have any leg pain......i'm asking alot of questions because there so confuse with my pain ....

  • Hi had an arthroscopy where they injected a dye into my hip and put me in MRI. I only get groin pain which can run down inside leg but only when I walk too much. I just pushed to say that I felt pain was more from hip than SI joint. Surgery may not resolve my problem but for me now, anything's worth trying. I totally get where you're coming from. I too found it very difficult to explain where the pain was coming from. I hope you get somewhere with this. I really do understand how you feel. Best wishes

  • thank you...it was nice chatting with someone with similar problems....all my best

  • hey i have the same problem...nothing works only cold pack because it numbs the area.....i had a steroid shot...it ease the pain for 5 weeks and now i think its worst...i can't do anything it flares up...i can't sit, walk, stand in one area, twist, bend, lift....i been to pain management, physio and now going to try chiropractor

  • Hello - I'm not sure what pain you are feeling or your condition or health, so I am no way qualified to recommend anything to you. However, for anyone suffering the way I have done in the past I am going to say a couple of things. Mainly because, at my worst (when I felt like I was unable to leave the house or walk any distance due to the pain in my hip, and felt utterly desperate) I felt very lost and alone and I hate to think of anyone feeling the same way, so I want to share something positive: 1. I started yoga in November last year (despite being too scared to try it and I pushed myself). It hurt the first couple of times, but now I feel so much better. I still can't go for a long walk on the beach (due to the type of injury I have) but I'm not in agony all the time anymore and I'm starting to rebuild my life again and go back to work full time - I don't have back pain anymore. I am a different person - I don't look pale and grey anymore. 2. I have found a consultant who is going to carry out a repair on my hip. He told me something, which at first reduced me to tears and upset me, but I actually realised in time that he was speaking wise words and he was right. He told me that if you ask anyone who is in pain 10 years later if they are still in the same pain as they were before, they will say no. He assured my the human body can achieve amazing things when it comes to injury (not chronic disease and this is very different). I burst into tears because my first reaction was - 'I'm going to just have to live with this for a very very long time and this is me for the next 10 years'. Less than a year later, I have found something that helps me manage pain and I didn't think this would be possible from where I was. I hope anything I've said here gives you some comfort or food for thought. When I was in my worst pain, I started to look online for other people in my situation and everything I read was so negative - not one single good news story about 'I got better and don't give up hope'. So I want to share my experience with anyone who might be in the same situation as I was. Good luck and all the very best.

  • Hi Gill,

    Thanks for sharing your story. I have found, like you, it is difficult to find 'happy stories' about SI joint pain. I have had my first injection done yesterday after a year of unsuccessful treatments, after a fall surfing last year. After the injection I did not get to see the doctor who performed it and I have been told I would get a follow up assessment in three weeks...which I find to be very long. I also have not been told what to do in the meantime (the doctor did say to stretch but not over-stretch otherwise I may make 2 steps forward and 3 back, but did not give me specific exercises to do!).

    From the experience you shared I was wondering: 1. is it normal to start a course of physio sessions three weeks after the injection or will it be too late (i.e. I am expecting the pain to come back, although not really gone now, so I want to make the most out of the time I have to exercise and have a chance to get better) 2. which type of yoga did you do that helped your back feeling better?

    Thanks and I keep it up!

    Nat

  • SI Bone surgery

  • I have a similar problem I am living with the pain at the moment as I am 59 and not working - I had to give up as the pain became too bad and as my work involved lifting and a lot of walking as I was a care assistant, I also have just been diagnosed with Fibro, which makes me very tired etc.

    Anyway, what I want to say is if you go to an alternative practicioner,, I'd have a few words with your GP before any treatment, I have been warned not to go to an osteopath or cyropractianor as my spine is not strong enough to take the treatment. I have tramadol and amotryptoline . I have good days and bad days. I know a lot of people have said t my why don't I go to see an alternative practioner but , feel it would be tempting fate to go against the doctors. It may be fine for you, but please ask medical opinion first, just to be on the safe side check it out. Good luck

  • I have SI Joint Dysfunction and have had it for the past 15 years but was only diagnosed last year. I fell down stairs and went down on the bottom of my back/ bum. I started having a pain in my hips. I've had internal and external scans, x rays, you name it I have had it. also I have been on that many different meds I can't remember half of them.

    It wasn't until I went to pain clinic that I was diagnosed with having SI dysfunction, I have now had three lots of steroid injections, two in my back and one near the coccyx. I take 4 slow releasing morphine tablets a day, 2 lyrica ( neuropathic pain)tablets a day, 800mg ibuprofen tablets a day plus a high dosage anti-depression tablet a day. And if the pain gets so bad I have morphine liquid.

    Nothing seems to get rid of the pain, I tend to deal with it better than I did and only use the liquid morphine when i am in unbearable pain.

    Take Care & Good Luck xx

  • S I bone

  • Please see if Intermuscular Stimulation will work for you. I had hip pain for 3.5 years and no one could figure out what was wrong with me (numerous doctors, med students, physio, acupuncturist) and discounted the pain I was in all the time. Turns out my whole lower right half was slowly seizing up to compensate for 1 part of my lower back. after 1 treatment all my muscles are waking up. I am still in pain, but the pain is more evenly spread out and I can feel that after my second or third treatment it will be ready to release is that makes sense.

  • I had a high speed car accident where I hit a tree, very lucky walking out with fractured vertebrae, collarbone and extreme bruising on left leg. after suffering with the pain for over a year and a bit only now have the doctors said SIJ pain. Im 33 and I was told I was 'guarding' 'referred pain' etc. i'm a pretty tough chick, work hard, love my job. Gets old when the pain is always there. I go for my first injection tomorrow so hopefully that will give me some relief. I'm on Targin, Endep, Lyrica. Work my butt off at physio and now realise that I may have been doing some exercises that have made the condition worse. It does get me down but I am so thankful to be here and for me the pain is better than having no leg function at all. I do meditate and use cat cuddle therapy. (Whether he likes it or not) usually have some good tunes playing and try to watch as many comedies as possible. My heart goes out to all of you and its disappointing to see how many years people have gone without a proper diagnosis. I'm already angry after 1 1/2 years. It is also an extreme adjustment from where I was before the accident. Moving slowly, not being able to lift much, do much at all. Fingers crossed the injection gives me some relief.

  • March 2015 had SI Bone surgery. My pain was 20+. After surgery it was 1.

  • Cynthia58 what were your symptoms before? Where was the pain? My gram is 79 years old and it's been a long road. She has a slipped disc in her back which docs initially thought was the source of pain. She's had an ESI in her back and hip. Neither provided any relief. Next step is a sacroiliac injection. I'm assuming to diagnose sacroiliac joint disfunction. Her pain is in lower back and hip and buttocks and radiates down back of her leg. The pain usually remains above the knee. Never passes the knee. She says it feels like someone is hammering on her leg. She takes lots of pain pills right now and they barely touch the pain. She's getting discouraged naturally. Could it be her SI joint?

  • If the SI joint shot works. Call SI bone.

  • If it is determined that it is Si laxity causing the pain, Core stability exercises and manipulation would be a starting point. An SI belt might help. Epidural injections give some people relief and allow some to work on core stabilization. Myofascial work from a physical therapist or D.O. can bring relief. Prolotherapy can be extremely helpful. My doctor also had me take magnesium.

    IF NONE OF THIS HELPS ENOUGH There is a minimally invasive procedure and when done by an experienced doctor to stabilize the joint has Success in the area of 97%. To research it look for SI BONE. It changed my life.

  • This sounds awful to ask you. My SO joint is in question. Where do you feel your pain the most? I mean does the pain go down your leg or your lower back and do you have walking trouble.?

  • All above. SI bone helped. No back pain. 3 months no leg pain walking better.

  • I had 20+ pain in my lower back All these painful years it has been my SI joint - left. SI Bone surgery was done and no more pain.

  • Hi Gill,

    I've been on pregabalin and oxcarbazepine for years for TRIGEMINAL and occipital bone neuralgia and it really helps that by slowing the blood flow which relieves the nerve pain, it might be worth asking about?

    I also have back problems I'm not sure if it helps with that as I always have back pain but it might be worse if I wasn't taking them.

    Sorry to ramble hav'nt slept 😞

    Regards Sue x

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