Unable to walk without pain in SIJoint

Hi I am continually in pain radiating from my sacro illiac joint. Doctors are not interested, beyond an Xray a few years ago. Sometimes it abates and I consider it basically 'hiding' because as soon as I do something like lift a small thing it comes back. The other day it felt like I had burst or slipped a disc in my back about four or five inches above the SIJ now that pain is subsiding but the SIJ is getting worse. The NHS in Wrexham "do not do backs" when I was admitted to A&E six years ago, they just gave me morphine and a leaflet on how to get out of bed with a bad back. The morphine just made me puke as my wife drove me home at 2am when I was discharged.

Can the leakeage of fluid from a disc cause further pain in the SIJ?

I am also gluten free and lactose and fructose free also many other foods either cause problems from kidney pain and joint pain to great big boils taking eight months to subside, I wonder what the hell is wrong with me, and why no one other than my wife can believe it? The last visit to my doctor had me wondering if I was being seen as insane, from the questions put to me.

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  • I'm assuming your SI and lower back pain isn't from an injury. If thats right, then check out the information on nass.co.uk/about-as/ Sacroiliitis (with back pain usually starting from the bottom) is one of the main symptoms of ankylosing spondylitis. If you think you meet the criteria for "inflammatory back pain" that is also listed on this site, then definitely insist that your GP refers you to a rheumatologist for evaluation. If possible, get referred to an ankylosing spondylitis specialist rheumatologist or a specialist spondyloarthritis clinic, rather than just a general rheumatologist, as it can be a very difficult disease to diagnose. Thats mostly because it can take 8-10 years for the signs to show up on xray or MRI, and you need to show evidence on one of those to get a diagnosis. Its a very badly understood condition.

    To get taken seriously, you really need to push the point of needing to be investigated for "inflammatory back pain" rather than mechanical back pain. Also, don't be concerned if your GP does blood tests and your "inflammatory markers" aren't raised - both ESR and CRP can be quite normal in spondyloarthritis, and its considered "seronegative" so none of the rheumatoid arthritis type blood tests will come back positive either.

    If this does sound like a match, then google "ankylosing spondylitis forum" and check out one of the international forums, as they have really great advice and support. The two I know of that are both good are the spondylitis association of america, and kickAS, as well as the forum on the NASS (UK) website.

  • I have had pain in my sacroiliac joints for years getting worse over the last 12 months. Walking became increasingly painful and like you - the simplest task became impossible. Visit to my GP he referred me to physio. Started with her last week and when she touched that area I ended up on the ceiling. She explained that posture can have a lot to do with the pain. Being a carer for over 20 years, with all that entails, + a gardener all my life. All made sense.

    She has given me some simple exercises - which hurt at the moment - but hopefully will help and to see me again in one month. Oh yes an my GP prescribed Paracetamol to be taken first thing and as required through the day up to 8 max. I certainly know when I haven't taken them.

    So maybe a referral to the physion could help you?

    Good Luck

    Pat x

  • Maybe ask for a referral to an orthopedic specialty. These days it will not be direct from gp but via some intermediary like physio. Ask for an mri lumbar spine. 2 years ago I started having pain from what I thought was a SIJ, but I also had frequent urination so I put it down to water works and kidney pain. Eventually I went to gp who took urine which 2x came back clear. Referred to physio (msk) along with my left knee which swells up. After 4 weeks (not consecutive but when I could get Tuesday as day off) they refer me back to gp, despite me requesting help on back. Eventually referred to back to MSK service (Buckinghamshire musculoskeletal service includes physio) with complaint from GP! Specialist there very quickly found a spondylolisthesis 4/5, and pointed out a big dent in my back-surprisingly it was nothing to do with SiJ, but pain was down legs too now. Only then did I get an MRI, and finally, referral to secondary care- the disc-space by this point was 'obliterated' and the vertebral slip over 50%. THIS TOOK 7 MONTHS. Only then, I waited 2 months for nerve block and then PLIF 10 month later. Go to gp and as for referral for an mri- just to rule out any nasties like that. Especially if you have done sports like weightlifting, football, javelin or any activity where you extend spine ect- even as a kid. Pars defects, lysis and disc issues can then be viewed. There is little info about these conditions, even some physios are ignorant about it. I would obviously rule AS out. Unfortunately when backs are complained about, the first thing you will be treated foe is a soft tissue problem and be dismissed with 'muscular' pain. Even if it is joint pain, it is deemed to be due to poor lifting techniques or just old age. Either way- exercise is prescribed as a cure all as no one in the nhs wants to spell a 'spondy' disorder nevermind try to treat 1. Good luck- ps I like exercise and it will still help with movement.

  • Thanks for your replies, I am sitting here still in pain, I did not want to get out of bed as while laying down there is no pain. According to the AS site it is NOT AS? as there is no pain in bed.

    I am 56 and been active all my life Mechanic most of it, always said 'my hobby is lifting heavy things' also cycling, and walking. NEVER running, my knees would never stand it. The knees have both been operated on yet the left knee is always puffed up. If I eat anything on my dodgy list my knees and lower back become so tender even walking is a very delicate business. I think maybe this latest bout of pain maybe a reaction from lifting my mother off the floor last week, after which I was ok ish and the straw that broke the proverbial was working on the gears on my bike (awkward lifting again) which is when it popped.

    Strange you mentioned kidney pain, I was getting constant kidney pain and a large lump above the left kidney on the surface would ache when ever I had drunk alcohol or eaten meat , both of which I gave up a few years ago the pain is no more but the lump stays but does not ache now.

    I will be exercising again very soon even if only in bed.

  • does sound more like mechanical pain then, if lying flat relieves it. AS typically causes more problems the longer you stay in the same position, making it extremely difficult and painful to start moving again. Your history of heavy lifting could have caused some damage somewhere, in which case seeing a good physio who is well experienced in back pain could do a lot of good. Wouldn't be a bad idea to try and get an MRI done, but I know that does tend to be the last resort for GPs, as they generally try to treat back pain as conservatively as possible for as long as possible (i.e. do nothing and hope it gets better on its own).

  • Hi I would insist on a referral to a specialist or physio referral who would then refer to specialist. GP's vary in how good they are so ar least a referral to someone who knows will start the ball rolling. Do you have private health insurance? If not would it be worth paying to see a specialist? It could be many things from facet joint or disc injury to pelvic problems. A dismissive doctor is no good for you. Good luck

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