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Back pain is outrageous any ideas ??

Hi all another moany post and for that I apologise but it helps to have like minded people. Got my appointment with rhumey in 4 weeks consulted her and she's asked me to persist with my medication plan until I see her. My problem is strong painkillers nerve blockers steroids and my lupus meds are having no effect as of present and the pain in my back neck and shoulders is absolutely uncontrollable nothing is having an effect and constant flare is being a pain with no avail and now even having trouble getting mobile, and I am seriously beginning to think there is no light at this horrible tunnel thats taking complete control over my whole life sorry for the moan.

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Hi hun. I really feel your pain i too am in full flare after 3 deaths in my family within 4 mths and i too am suffering with my neck my shoulders left arm and hips 24/7 plus im on megga morphin ect ect with no affect. What meds are you taking???


Hi Rupert74, I too went into my worst ever flare after losing my Dad, and then Mum in Law within weeks of each other. 18 months on I'm improving, it's slow but I'm getting there.


I'm really sorry to hear about your losses the stress with all that alone can't be helping, currently I'm taking azathioprine hydroxy chloroquine ampitriptiline sertaline pred morphine co-codomal naproxen and laprozole so a nice little cocktail .


Hi Squeeshy, I can't give any advice apart from to say I've been where you are and feel for you. For anyone who hasn't had the pain they can't appreciate what you are going through.


I know and I think that's what's so nice about being able to have a moan on here it doesn't fall on death ears it falls on people who can understand and that can be comforting.

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Hi people, keep with it until you see your rheumy as it will give them an idea of your pain on that level of painkillers for that long. However, hate to sound all hippish but other things have helped me and also my friend with ms like acupuncture also relaxation stuff. As the tension adds to it all. As said by the others who have posted re their loss and flares. Whatever you decide to try keep with it as it takes time but worth it. All the best.


Not hippish at all rhumey recommended me for acupuncture last year worked a treat for a few months then just stopped working.


You've got some good replies...and johare's rings a bell with me!

Am vvvv much feeling for you...have spent a lot of time, years, in my own version of the place you're at.

The OTCs & heavy duty prescrip meds I was on at the time hardly helped at all...and my Drs thought the persistent excruciating pain was all down to my spine injuries but failed to spot the part played by SLE underlying everything (yes, only the v top vertebral joint, and the 2 sacrum joints are synovial, which, as I understand it, means these are the only spinal joints directly affected by lupus...but, even so, my medics tell me that lupus does get involved in sites of inflammation (especially soft tissues involved in repetitive strain inflammation related to any chronic pain syndrome)).

So, I coped via alternative & complimentary therapies, + intensive lifestyle management & using orthotics (cervical collars), canes, wheel chairs...I was v lucky to have an understanding & cooperative employer...and family who were relatively tolerant. Finally neurosurgery referred me to Pain Clinic, where a brill consultant gave me a series of bilateral facet joint denervations over 10 years...which have numbed the source of pain in my non-synovial spinal joints....but my lupus remained unrecognised, and continued to cause big trouble for years

Since my infant onset lupus was recognised 4 years ago, and systemic lupus meds begun, referred soft tissue pain & the residual pain related to my synovial top cervical joint & my sacral joints have gradually become much less of a prob. Yes, I do have to continue all the lifestyle management conscientiously, but that's easier because my meds are making such a positive diff.

My hope is that rheumatology will help you towards a better understanding of the complex of causes involved in your pain...then you & your medics can focus on improving your treatment plan...waiting for this spot is really tough, though....have you phoned the dept about getting in earlier via a cancellation?

Wishing you relief from this awful stuff🍀🌻


Thankyou, my rhumey is amazing couldn't wish for a better one to be honest she wants me to try and wait till our next scheduled appointment as she's changed meds and what's to give them time to try and take effect just wish they were.


makes sense.....glad you like your rheumatologist a lot! the trying out meds & the waiting really are tough...hang on in there!


I used to use hot water bottle but i got burnt to i now use electric blanket to with pain. I hope it helps


sorry hear of your loss and flare,im currently in similar situation back feet knees wrist pain just lost my father suddenly.

losing a relative is top on list of stress on any ones health hopefully your rheumatologist can help do they have a nurse help line at all to call to be seen sooner.

phsyiotherapy and hydrotherapy helped my back pain plus bought new bed and heat pad for stiffness.mine locks into spasms ended up out hours gp more than once.

so i do relate feel free chat more anyway can help or just listen.


Hi there, just a small suggestion which may be helpful - make sure you take all your medications at regular intervals throughout the 24 hours. Depending on what you are on, this could be complicated but most modern smartphones have an alarm function which you could use. That way, you have the optimum level of all meds in your system at all times. Hope it gets easier soon.



Can I ask if you've looked at some other factors; i.e., how old is your bed? I've been having really horrible back pain for the last year (and it even hurt to sneeze, my spine and ribs were in such a state). I was often in tears, begging for pain meds (and getting nowhere b/c of my GPs pathological fear of ZOMG ADDICTION. I then had a really good look at my bed, which I'd owned for years, and there was a marked dip in the centre. I bought a new one and it has made a huge amount of difference. So if you haven't considered that, maybe give it a look?


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