Chronic Sciatica with Lupus

Has anyone experienced chronic sciatic pain with lupus? I'm in agony at the moment with it! I can barely walk and am in oromorph for the pain. My GP would not prescribe steroids for the lupus and I've had to beg my rheumatologist to let me have some. Has anyone got any ideas on how to deal with the pain? Thanks xx

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  • I think I have sciatica caused by degenerative disc disease/ lumbar arthritis. I have primary Sjögren's. Sometimes it's extremely painful in my groin, knees and feet - other times I get locking where I just can't move.

    I can't stand still now for longer than a minute max - but I haven't yet found a painkiller I can tolerate. I have a very high pain threshold but a very low drug tolerance. Steroids cause me to gain a lot of weight so I know this would only be counterproductive for my spine as I still am battling the weight gain from two years ago.

    I don't know if it's inflammatory arthritis (which I've had before) or would respond to a steroid injection perhaps. I see my rheum a week today - am on 3g Mycophenolate. Planning to raise this question with her - although I suspect she will tell me it's osteoarthritis/ wear and tear in which case a steroid injection wouldn't help.

    Of course I don't know if your sciatica is caused by arthritis but if not then I believe it often passes after a few months. At least my friend who has had sciatica found this. She doesn't have a rheumatic disease though but says it was excruciating while it lasted - for 6 months in her case. She found a good chiropractor who helped a lot and it's resolved. I do Pilates and I find that piriformis stretches do seem to ease it - as does walking.

  • Many thanks for the reply and I'm sorry you've got so much going on! I've got achilles tendinitis as a result of the sciatica to which I had a steroid injection. This hasn't worked for whatever reason. But the sciatica has made my lupus worse! I had been off work but then had to go back as I don't get paid. Life sucks right now. X

  • If it is true sciatica i.e. nerve pain then gabapentin really helped me. I slipped two discs in my back and had tried all the usual NSAIDS, but then orthopedic consultant put me on that and the relief was immense. Plus physio once a week and swimming as much as I could tolerate, then Pilates when it eased after a few months

  • Personally I couldn't tolerate Gabapentin at all - made me see double and SO angry! I was put on each of these nerve pain drugs in turn for a very widespread neuropathy - but not one of them have been tolerable unfortunately

    But I mostly do just cope okay. When it's particularly awful I try to just keep to gentle movements, breathe deep and do Pilates stretches if I can. Night pain keeps me awake but not that often nowadays compared to other Sjögren's symptoms- I think the high dose of Mycophenolate must be helping with tendon and neuropathic pain.

    The main problem with this degenerative disc disease isn't pain for me - it's when my leg gives way - or my back locks tight, or both! The thing about nerve pain is that it's not always due to systemic inflammation so it's hard to know what's what for all of us isn't it?

  • Years ago I had chronic Sciatica and was off work for 3 months, I also have SLE. My doctor told me to walk for an hour each day. At first I could only shuffle but gradually I was able to walk and it subsided. I still get it but not so bad. Hope this helps

  • Hi - like another responder I was to advised to walk a little each day. Do not sit for very long. This helped a lot and then I found a Chiropractor who used a TENS machine to deep massage. I found I was ok with Co Codamol.

    I do not suffer with sciatica since Chiropractor- and see him 3 times a year.

    Good luck

  • Many thanks for all your replies! I managed to get a course of steroids from my GP (not without a fight!) which fingers crossed seems to have helped enormously! Hopefully I will now be able to get help for the sciatica now.

    xx

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