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Anyone have lower back pain NOT lupus nephritis?

Hi. I am new here. I was diagnosed with UCTD fifteen years ago--after positive ANA (homogeneous and speckled patterns), positive anti-dsdna, and positive Lupus anticoagulant and Anticardiolipin. I did well on Plaquenil for years. Fast forward to new job and new rheumatologist. He thought I was in remission and seemed to question the original diagnosis. He convinced me to try going off Plaquenil. I have a problem now that may not be related, but I am in the process of getting referral to a new rheumatologist just in case--and to have someone I trust. I have chronic low back pain, sometimes appears to also be SI joint. I cannot sleep more nights than not. 3-4 hours if I am lucky. My last creatinine was good, though for years I've been a little high compared to most my age. But stable. No protein or other issues. I could be wrong, but don't think my pain is caused by my kidneys. Anyone else experience something like this? Any words of wisdom as I prepare for visit with new doctor? Thank you for this community.

  1. , My heart goes out to you and the frustration, pain and confusion you have described. I'm glad you are seeking another doctor that you can trust to work with you and find you the right treatment to help manage your symptoms. Joint pain is one of the most common and painful symptoms of lupus. This article lists some treatment options to help manage joint pain: https://lupus.net/joints. One of our other patient leaders shared some tips she uses to help improve her quality of sleep while managing lupus pain: https://lupus.net/video/sleep-tips. In terms of preparing for your next Rheumatology appointment, this article lists some things to keep in mind leading up to the visit: https://lupus.net/living/tips-rheumatologist-visit and this one was written by a Rheumatologist with some topics you may want to discuss during the appointment: https://lupus.net/living/rheumatologist-appointments. I hope some of this helps and you are able to secure a great doctor and get real answers soon!
    Gabby (team member)

    1. Thank you. This is very helpful.

      1. sorry that you are dealing with this. It's always hard when the doctor switches up. It seems to be becoming more common for doctors to say someone no longer has lupus more than they work to get it under control.


        I have experienced lower back pain but usually it's some inflammation. I notice it when I am about to flare or already deep I to the flare. Most times if my kid eys are ok my doctor gives a steroid shot. He also tells me to just be aware of any other symptomsike stomach pain and back pain that may mean something more serious like heart issues. That's not to scare you but just to let you know what was told to me about my case.


        My only words of wisdom is work hard to advocate for what you feel in your body. Sometimes doctors feel they know us better than we know ourselves and we have to remind them I live in this body daily. The other thing is to be patient with your body and don't stress ubt yiubget to see the doctor. That compassion can help you so that your pain won't get worse.


        Finally you got this! I know that sounds cliche but look at you here today to tell yuyr story. Help and relief aeebon the way. You are on tbe right path to get yourself the help you need. Keep us informed as to how your new doctor is. ~Racquel~ lupus.net team member

        1. Thank you for the kind words. I have been feeling very alone with this--other than my husband, who is great. But autoimmune illnesses are so strange. As much as I wish nothing were wrong, I think, "Thank God!" when some blood work comes back that proves what I already know--that something is wrong--and I have "proof" for my doctor. It is helpful to talk to people who go through the same things. Thanks again.

        2. not a problem. We are here to support you. If you have any questions feel free to ask. I love your attitude beyond it all. ~Racquel~ lupus.net team member

      2. I have chronic back pain every night I try to go bed I don't last more than half an hour before ime back downstairs on the sofa ...ime up most the night then so worn out and tired the next day X.

        1. it's such a difficult place to be day to day. I am holding space for you to get some relief. Gentle Hugs 🫂 ~Racquel~ lupus.net te member.

        2. Nights are definitely my hardest. Three to four hours tops describes my routine but I consider that related to the fact that I get so tired during the day & sit down, I am out.

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