very bad back pain

hiya everyone hope you all are coping with your illness i have had lupus for about 18 years now have many symptoms the one i have now is a very bad back justing waiting now for my appointment to have needles in my back one in my facet joints and one in my sacroiliac joint if that dont work they are going to give me a epidural injection if that dont work not alot else they can do for me cannot walk very far because of the pain anyone else had this done everyone talk care xxxx

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10 Replies

  • I didn't, sorry to disappoint - I just wanted to say that it sounds horrific what you're going through!! I hope the injections work!

  • Yea I do I scream n cry everytime a travel cant lay on my back at night was stuck on couch n even travel in wheelchair kills me I am on mophine help lil bit but still crying n screaming I am only 21 wiv two children there not sure wat to do has its affect my muscle n legs down one side bin like this over a year

  • Hello else5

    YES: I do believe i've had exactly this done to both my cervical (neck) spine & to my lumbar & to my sacrum. My Pain Consultant calls the procedures "bilateral facet joint denervations", but these ops are also known by other names. In my case, these procedures have been done in an operating theatre with full staff, by my consultant who is also an aneasthetist.

    He is well known, works for the NHS & privately. He uses radiography, electric current & a cocktail of steroid + other chemicals through fine needles to destroy the fine nerves in the facet joints. He has been treating me for 15 years now, but my spine pain + associated soft tissue pain + SLE- related pain, has been going on all my life. By the time i finally had my first denervations in 1998, i could hardly walk and was feeling very depressed. My spine pain had just got a lot more constant in the early '80s, and became chronic, affecting all my limbs: oh dear: very hard to live with.

    I've had SLE all my life, but it has gone unrecognised until 2 yrs ago. So, when my spine denervations began, we were unaware I'd been diagnosed with lupus in my infancy & teens. Even so, these spine denervation procedures did help reduce my spine pain significantly....although this long term pain had become so chronic that I needed a lot of rest & physio to achieve full benefits from the ops. I've had 2 sets of bilateral denervations to all the facet joints I've mentioned above.

    Anticipating my first procedure, I WAS VERY ANXIOUS! The first procedure was called "diagnostic facet joint injections", which are only temporary (like steroid injection in any other joint, but in spine cases, done in operating theatre). The consultant, in my case, felt it appropriate to do these procedures before the full on more permanent denervations, in order to prove I could respond effectively to denervations. I did respond well, but the effects wore off within several weeks. I WAS MUCH LESS ANXIOUS for all the denervations ops that followed...the experience itself wasn't as painful as I'd feared it could be. I'm hoping the same for you: courage! Am vvvv much feeling for you.

    My denervations were done over the course of 10 years. My consultant had warned me that in chronic cases, denervations may need to be repeated several years on. He was right! But, over the years before these denervations, my spine pain had only been treated with NSAIDs, Rx pain killers, Alexander technique (basically posture training), osteopathy, Pilates, rest etc....only the alexander technique & rest helped much. The BIG surprise was that when I was (re) diagnosed with SLE 2 yrs ago, and started plaquenil 400mg daily + amitryptiline 20mg nightly & eventually 3x 4 wk 10mg pred tapers per year, any residual spine & soft tissue pain pretty well settled down.

    I feel as if I'm loading you with a lot of info. I'd very much like to do anything I can to encourage and support you...if only there had been someone back in 1998 to do this for me...haha! So, please feel free to stay in touch, and do message me here on the forum privately if you feel like it

    I hope at least some of the above is helpful

    Take care

  • hiya barnclown thank you very much for all your info it sound like i have a long road to go i hope you are feeling abit better now days thank you keep well xx

  • This is what the pain consultant had me lined up for.....then rheumy called halt cos he thinks I may also have ankylosing spindylitus.....mri to settle the debate. Desperate for relief

  • Good: glad to help

    Yes I really really am feeling better in big ways: i.e. less spine & muscle & joint pain than I've had since the early '80s.

    But, decades of progressive damage in my feet, due to untreated SLE mainly, means the feet are v painful due to a typically complex set of conditions affecting them. So, now I tell myself: we fixed your we can fix your feet! And my pain consultant has been working on my feet for several months now....

    Take care

  • I did forget to say I did hav scoliosis n had two operation done same time 8 years ago so neulogist kept saying it was tht but when I saw spinal specialist they sed it wasn't tht causing the problems thts why I am having more tests done

  • Hi All had S.L.E. for about 20 years and only really just started getting bad back pain rheumy said its mechanical and put me on tramadol, I felt awful so stopped taking them, can't find a pain killer to help and doc's won't send me for test. What else can I do. x

  • Hi Else5

    I have been having trouble with my back for nearly twenty years it was one of the first parts of me that was affected by the sle, I have had accupuncture which I found quite effective but unfortunately no longer available on the NHS here I looked into other forms of pain relief as I have allergies to many pain killers and have to rely on morphine. I was so thankful to have been introduced to a TENs unit. It is the difference between being able to walk and not being able to walk and is worth it's weight in gold dust. I was introduced to it by the team in the pain clinic so if you can get a referral to a pain clinic it may be worth asking about one. I put the pads on my back and the battery pack and wires in my pocket then I can walk about quite easily, I even manage to go out with a fold up stick in my bag in case I need it instead of relying on it all the time. You can buy these but I do think that it is a good idea to have all the settings explained to you properly so you know how to alter it to suit your pain.

    Good luck with your up coming needles I hope they work for you if not I would definately recommend a TENs as the only expense I have is the pads when I need new ones and I replaced the original batteries for rechargable ones,

    Madmagz x

  • I've tried tens over the years: sorry to say, tens never helped me...not even a little bit. But, I know tens really can help: there seem to be lots benefitting from tens. So, it's good to hear your advice, madmagz: some day I may give tens another go...

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