Dreadful back pain, is this a symptom?

Hello everybody, I have a terrible back pain in my lower back, just to the right of my spine. I have lots and lots of other auto immune diseases and it looks as if my Lupus "Like" Syndrome is actually SLE as I've had more symptoms, inflammation in and around my lungs with a few clots was the most recent and I was hopsitalised for that and so now I'm seeing a Rheumatologist.

Anyway, I'm writing this whilst flat on my back, having taken 60mg codeine a few hours ago, the pain started 2 days ago but now I just can't move without pain. Is this a possible symptom of lupus? Or is it more likely I have just put my back out somehow? It's just the increasing intensity of the pain that is worrying me...


... An hour or so later...

I took my usual medications just after writing, which are clonazepam, ropinerole, baclofen and some others, but they are the main ones and the pain is still there. It's spreading through my whole lower back. Don't panic - I'm not, I just would like to know if this is a pain that people are familiar with and if I may experiencing a flare up again. Breathing in deeply is painful, but again in my low back. My INR was 5.1 this morning, which is only slightly high for me.

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20 Replies

  • Hi.

    So sorry you are suffering such bad pain. I too had a spell of this bad lower back pain, I paid for physio which sorted it out, my spine was locking into the wrong position, I was taught excersises to do daily which unlocked it, would clunk every time. Touch wood I have been fine again for months, so very painful! I mentioned to my consultant about the back pain and he said that prednisilone can cause this lower back pain and also neck pain which I have.

    Really hope it eases soon

    Jo x

  • Hi. I can totally sympathise with you because I too experience terrible lower back pain. I have recently had acupuncture and it has helped a lot with the pain but I still have my bad days. I tend to have some days where I can't put my feet to the floor and I'm crying with the pain, other days, although its still there, its more bearable. The acupuncture has worked for me where painkillers have not. Ive been on Garbapentin and pregablin but neither really helped. My rheumy told me my back pain is 'from the lupus' and that's all the explanation Ive had but I'm now pressing for more tests etc to try and determine if theres anything else going on. I also find a hot water bottle helps a little and swearing works wonders :) xxxxxxxx

  • Hi Lilly anne,

    Thanks for your reply. This back pain is like nothing I've ever bhad before. Incidentally, how did you cope with Gabapentin? I was on it for a while for something else and it sent me doo-lally!

  • I couldn't get on with gabapentin at all. I felt as if I were on another planet, it was horrible. Plus it didn't really help the pain. My lower back also swells when I have the pain, I was wondering if yours does too. I can't even sit because I can't bare the pressure on my spine. My only ease is to lie on my stomach and not move. Hope you are feeling better soon Annie xxxxxxxxxxxxxx

  • Gabapentin made me anxious, paranoid and moody! I was hell to live with. It was like being on steroids which don't agree with me either. Gabapentin was prescribed because I have a condition called acute generalised dystonia. It helped, but not enough to deal with the side effects. Carbamazepine was almost as bad. I won't be going on anti-epileptics again. They're probably okay if they didn't interact with my other meds... carbamazepine made my INR go wild too. I'm ranting!

    Re swelling, I don't think there is any visible swelling around my back, but it feels inflamed if that makes sense?

    Thanks for listening, it's hard on the family and I don't always want to share every little painful detail with them.


  • hi have you tried very light yoga i swear by yoga i had really bad back problems but started sun salutation i couldnt do it very well at first but started 2 times a day and felt so much difference ,also tree pose but only lightly you will be surprised how a very light yoga becomes so easy and improves your back within a week there are different poses i will find them

  • I would love to, I'm in a wheelchair though! I am sure there is some sort of yoga I could do. I'm still in a lot of pain, I've taken 60mg more codeine and all my muscle relaxants that I take for other things and I'm still awake, but the edge is off the pain - as long as I don't move!

    Do you think this is a Lupus thing?I'm still learning...

  • oh i didnt realize i am sorry i will research and see if there are other yoga things you could do ,have you been in a wheelchair along time ?

  • hI Suki, no problem, I've been in a wheelchair since 2010. Because I have MS (had since 2004) the hospital didn't put my left sided paralysis down to a stroke! I've gained a lot back now, but if only they had thought 'possible clot' then I may not be in a wheelchair. My APS was diagnosed after arterial clots in my leg - (nearly lost it) and multiple PE'S. Then came Pernicious anaemia and a movement disorder... what fun! 2 yearsn ago I 'just' had MS, so it's been a tough couple of years!

  • Hi anniesensi have you ever tried B12 and had your b12 checked .also wondering about your vitamin d ,if you could try to take b12 and start to feel a little better maybe you could try to reduce your pain killers as i feel more prescription drugs can add to other things .Also intermittent fasting helps regulate your insulin

    have you tried any of these mayallbehappy.org/wheelchai... they are supposed to be good

  • Just a thought. It is definitely your back and not your right kidney? Hope you get pain under control soon xx

  • When this happened to me it was a kidney infection! Definitely worth ringing docs and asking if you can send a sample down to be dip-tested. They don't need you (especially not if moving causes that much pain) so if you can send it with a friend (or even if they would collect) that would be easy.

  • Thanks, it's a good idea. Sometimes I just feel like I don't want to end up back in hospital so I'd rather just wait and see for a bit. It's a little better for a good nights sleep; however I ended up taking 130mg codeine, all my usual pain killers and sedatives and my own little herbal remedy to get there!

  • Hi, I wondered, but there's no pain when I wee...

  • There isn't always with a kidney infection x

  • I don't think it is x

  • oh, I just saw you said there isn't always pain! I thought you said there isn't always an infection! Duh! I should get that checked too then :(

  • I have sporadic with no apparent trigger lower back pain when my lupus is flaring - takes few days of anti-inflammatories and either ice or hot water bottle to get rid of it. If it feels muscular, I apply ice pack for 20 mins, then leave it for few hours, then ice pack again and so on for a day or two. If it feels joint related, then I apply heat/hot water bottle for few days.

  • Hi Purpletop, it does feel muscular, I'm moving around a bit more today, in between rests... I'll give ice a go. But there's so much to do! Heaps of paperwork that needs dealing with etc... doesn't help to have all that on my mind.

    I think this is a flare, as I have a sight temperature. I'm still recuperating from the last one which was a double whammy, PE's and inflammation around my lungs and airways. I have a lot to learn about Lupus and APS and how they work together... I find it so hard to try to read my body thee days.

  • I would concur with SarahHeney and Jennie_103. It sounds like it could be a kidney infection. They often go hand in hand with Lupus. That was one of my 1st symptoms. Also the pancreas might need to be checked out. Good luck to you.

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