No evidence of SI joints fusing but lots of pain

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So I've been undergoing diagnosis for AS for over two years now. I went for an MRI over a year ago and was told I had 'shiny bones' in my back, from how this was explained it means my bones are growing. I am in alot of pain, some days are better then others but I am never pain free. I am constantly tired because of the level of activity I do to try and alleviate the pain. Went for a second MRI a couple of months ago to see if I could go on TNF therapy because painkillers aren't working anymore and the pain is now affecting my day to day life. I got a letter this morning telling me I have no inflammation in my SI joints yet I am in agony most of the time. Could by condition be anything else? I am HBLA negative, don't have much stiffness on a morning but my pain does get better with exercise.

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  • Posted

    I was also being tested for AS and everything came

    Back ok but I couldn't explain the pain I was in and thought they must have this wrong. Anyway what I found was I am vit d and magnesium deficient and after a few weeks I noticed a difference, I was also put on Celebrex for back stiffness and recently

    Stopped them because of excessive weight gain in a short period and found that the stiffness is also better, all my joint pains have gone that I suffered with for years, I have other problems going on but the biggest change for me was the tiredness, that has improved massively which also helps with your mental state,

    Go back and see your GP and see what else can be done, I hope you find some answers soon 😊

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  • Posted

    Hi katy2296

    Did you have an ESR blood test? this is an Erythrocyte Sedimentation Rate blood test along with a CRP blood test a C - Reactive Protein blood test and an ANA blood test an Anti-Nuclear Antibody blood test these three blood tests confirm inflammation in the body.. You may not have inflammation is in your SI joints but may have it elsewhere in your body.. check with your doc and ask if you had these tests..also you can request  a copy of your blood test results under the 'Freedom of Information Act' if you are a UK resident......best wishes...

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  • Posted

    Hi Katy, I'm sorry to hear of your difficulties. Many of us go to various physicians over many years before receiving a proper diagnosis. I did. My symptoms began at age 7, real problems arose in my early twenties, and I was diagnosed at age 33. I am also HLA-B27 negative, but was very fortunate to have a GP and rheummy willing to look past that. I have seen numerous rheumatologists wanting to throw out my diagnosis simply because I lack that marker.

    I am not a physician. And a physician will look at many factors before an AS diagnosis for someone without the genetic marker and/or fusing in the sacro area. That said, I have experienced all symptoms you listed with my AS, but also many more over my lifetime (I am 52.) I am hoping you do not have AS, or possibly experiencing a temporary flare with a mild condition.

    I have personally experienced in the past 5+ years that physicians are very hesitant with categorizing auto-immunity illnesses. I don't have any fusing (many never fuse or fuse late in life.). Other categories include: Spondyloprathies (sp?) Peripheral Ankylosing Spondylitis, Psoriatic arthritis, reactive arthritis, and so on. AS and Spondylitis have identical symptoms of pain and inflammation and identical treatment. I do not understand why many rheumatologists hesitate with diagnosis and especially treatment. Some people weave in, out and between various categories.

    You didn't mention if you have been prescribed any treatment. Typically patients start with medications that are least damaging to the body: OTC NSAIDS / pain relievers. While you are waiting for the doctors, it might help to start non-prescribed treatments. Low or no impact excercise (pool and gentle yoga are popular and effective.). There is also massage, acupuncture, etc. I try things until I find something that works. One new thing I'm doing now is CBT for chronic pain. Most stop working for me at some point and I try more things, etc.

    AS is very frustrating in regards to getting help. I have looked to doctors, even begged for help. There have been a few very low points (flares) where doctors have flat oout told me there's nothing more they can offer.

    Some day's are good, some are more painful. One thing is certain: it will change!

    I wish you well and hope to hear how you're doing.

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    • Posted

      I have been to see them this afternoon, I have tried multiple NSAIDS and get relief for afew weeks then the pain comes back and comes back even worse. I was basically told today there is nothing more they can do but I feel like they are not trying, all my bloods came back with positive rheumatoid factor and they started testing me to go on anti-TFN but today I was told that because my MRI came back normal I can't go on it and there is nothing they can do. But I'm constantly tired, I can't do things I used to, I was very active (I am only 21) and try to be as much as possible now but I'm not as flexible and get tired easily, even doing things like yoga (which helps with the pain)

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    • Posted

      That's ridiculous! An MRI is not a definitive answer to AS and it could take years for the damage to show on MRIs and by then it's advanced, go find a new GP and start again if you have to your only 21 I'm sure there is something they can do, good luck 😊

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  • Posted

    I absolutely agree with Caroline!! A second opinion is usually a good idea.

    I don't believe any insurance company in the USA will cover the biologics without considerable proof of disease. My rheumatologist told me last November I could not get coverage from Medicare unless he presented X-rays proving fusion in the SI joint. A 20yo diagnosis is not enough. These medications are very expensive. They are thousands of dollars every month.

    Do you want to go on ant-TNFs? They can be risky. And there is no information regarding long term effects. They have been miraculous for some. It can take months to years for some to get the right one. And some people do not have significant improvement.

    There are other approaches. Some good European AS sites have excellent info. Also, information on chronic pain management can be helpful. I recommend trying the least invasive options first. I'm dealing with damage from 30 years of meds, in addition to AS. Also, there are many discussions here where people have posted their medications and other treatments. It has brought me hope.

    I'm hoping I can try Sulphasalazine soon as the NSAIDS aren't doing as much.

    Its great that you are being proactive. It should really benefit you!

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