Hi i recentley went to see my lupus consultant as i have terrible back pain find it hard to bend stand for short periods of time and walk and also sit for short periods of time and in constant pain everyday, she dissmissed it and said that it is nothing to do with lupus i wondering if anyone else suffers with this?
Thanks
hi tinkerbell, have you discussed your symptoms with your G.P and asked for further tests, x-ray, mri scan etc?
Hi Tinkerbell, agree with Sue, get your GP to investigate further, it may be that there is an underlying issue that you are currently unaware of. My husband has 2 damaged disks in his spine and when anything upsets it the symptoms are similar. Just a thought.
Also, be persistent, and if need be change your consultant, this is a dreadful attitude, even if it they believe its not related to the Lupus, they could refer you for tests to identify the cause and then refer you to the appropriate medical professional to deal with it.
Hope you get it sorted soon, being in pain all the time is exhausting.
Silver
thanku yes i am going to go back to gp and investigate into a new consultant.
Many Thanks
Tinkerbell
Thanku Silver yes the pain is awful and exhausting, i am going to go to my GP and ask for help as i cant keep going on like this.
Thanks take care x
Hi, I have recently had sacrolites which is inflamation at the joint at the bottom of my spine - caused me terrible pain. Worth asking I agree.
Yep, I'm in the Bad Back Club too Tink, with damaged/bulging lumbar discs, trapped nerves and the same physical limitations as you. I wish someone had told me when I was younger that's it's possible to wear out your spine! Previously being an active sporty person, the lack of mobility and pain is difficult to cope with on many levels and I know what you're going through. Your Rheumatologist is correct in saying this has nothing to do with lupus but what I can tell you is: in my experience, if you have any inflammation (caused by a problem other than SLE) anywhere in your body, the lupus will tend to jump in and exacerbate it. Up your anti-inflammatories if possible. You need to be referred to an Orthopaedic Surgeon or, preferably, a Specialist Spinal Surgeon if there's one near you ASAP. Forget X-rays, you'll need an MRI scan to see what the problem is but may not get one via your Rheumatologist. If they refuse to refer you (as they did me - in fact there is no spinal specialist in my NHS LHA area), go see one privately - it will be money well spent. If you're on a low income or benefits they'll usually then add you to their NHS list if they feel they can help. I eventually found NHS treatment "out of area" in this way. Good luck and let me know if you need any further help. I'm also sending a hug because I know how miserable you must feel! x
Thanku so much for your help yes its awful the pain is exhausting and feel trapped in a bubble of pain and feel let down by my consultant as i went to her for help and she didnt care or even take any steps to see if it was related to my lupus. I will be going to see my GP tomorrow and get things in motion to find out whats going on.
Thanks again
Take care 
I SO totally empathise Tink - it's a living hell. Meanwhile, the harsh reality is the NHS is so short of funding that we often now can't get the investigations, never mind treatment we need - especially for chronic back pain, which is running at epidemic proportions. There's a tendency for medical professionals (other than spinal specialists) to assume it's normal wear and tear, about which they assume nothing surgical can be done. In fact, I was able to have an spinal implant which protected the worst-damaged of my discs and helped a lot with pain. That disc has since healed a little, although over years rather than months - it's a very slow process. You can also have injections directly into the spine of anaesthetic and long-lasting steroids which may give you relief for 6 - 9 months at a time but many LHAs are now limiting NHS patients to only one set of injections, as they now have in the area in which I'm treated. You're expected to manage with analgesics after that. However, because this rule has not yet been adopted in my LHA I've been able to have 4 sets so far. I gather some LHAs are also now limiting patients to one epidural each when it's well known that a course of 3 brings optimum (and sometimes permanent) relief, depending on your particular problems. Far as I know, GPs can't commission MRIs - certainly mine told me only a consultant could, which is why I was eventually forced into asking to be referred to see one privately. I hope you have better luck than me! If not, here if you need me ... x
i agree with everyone who has given advice, my hubby has had back pain on and off for years,we put it down to his manual work for over24yrs. however the last two times he could hardly walk and moving was very painful,he went to GP and they said its just muscle strain/spasms and to take anti-flams and pain relief. hubs has had 3wks off sick in 24yrs and was told off for it.
one friday eve he was reading fru our local weekly newspaper and saw an ad for half price consultation with a chiropractor and went; after xrays and tests he has curviture of the spine and 3 worn discs that are pinching nearves; spasms and pinching!
in short we would NEVER have known this if he hadnt gone as GP always said rest its muscles nothing more. he is to have follow up treatment as his health is vital,we will find that money from somewhere. please look into it ,its so worth it.
sorry ive rambled on a bit!
Thanku for your help and advise it has really helped and i am going to ask my GP for help and more investigation.
Take are
I've had a bad back since being about 10 after hurting my neck on a bouncy castle. Ive had whiplash 3 times too which hasn't helped. I have back pain that comes and goes but standing and walking for half an hour or more sets the back pain off. It varies in intensity and place. I have been to physio twice and it has never helped. Apparently I have bad posture but I can't seem to change this despite trying. I have times where I am in complete agony for weeks and then it seems to ease off for a while. 3 years ago I went to pick my son up off the bed at my mams house (he was stood on the bed so I didn't need to bend) and my back suddenly went and I just fell in a heap on the floor. I couldnt get up for over half an hour. I managed to drag myself onto the bed and laid there for an hour until I thought I could try and get up. I could barely walk so rang nhs direct and they told me to go to the walk in centre, whch I did. All I got told there was to rest and take paracetamol (they couldn't prescribe me ibuprofen due to asthma despite the fact I have had them prescribed from gp numerous times!). I struggle to walk for 5 days and was in agony. Then it just seemed to ease and I was ok again. Thats just one of many examples over the years and all I ever get off gps is thqt cause of back pain is so hard to diagnose and they just prescribe painkillers that dont work. Think ive just learnt to live with it now. Gave up going to gp about it.
Sorry ive twittered on about myself!! I dont see why just as it is not lupus related why they cant advise or refer you on. Definately speak to your gp, worth a shot. Take care xxx
No thanku it helps to hear about other peoples stories and advise i am going to push for more help as i cant keep going on with this pain.
Thanks again
Take care too X
Let us know how you get on hun xxxx
I have problems too, sometimes it's 2 do with my kidneys & sometimes 2 do with sciatica. It's no good u're rheumy just saying it's nothing 2 do with lupus (ok, maybe it ISN'T) but it's also no good her not giving an explanation about what it COULD be. How would she know it's nothing 2 do with lupus unless she has done further investigations on it? Silly woman. Go 2 u're GP & tell them how concerned u r & that u want answers. Good luck.
Thanku.yeah i know she didnt even examine me so yes off to the GP'S for me as the pain is everyday and its not right.
Thanks
Hi Tink (my favourite cartoon character of all time, by the way lol)
I too have the most horrendous back, lumbar, leg pains. It is constant and has been for m,aybe 2 years now, just in varying degrees. At the moment, thankfully, it is bearable but when angry it gets me to the pont where I dont know how much longer I can carry on living with it, as being in constant gnawing pain is debilitating both mentally and physically. I am for the best part quite an upbeat person and try hard to look on the positive sides but with this......I just cant.
I too have kidney stones and also am very overweight, due to years of hi steroid doses and the increasing lack of excercise, but then am told to excercise to release my back spasms and also to help with weight loss but I cannot even walk for more than maybe 5 or 10 minutes without wanting to drop.
I wish you luck with your GP hun xxx
Hi all
Just too let you all know I went to the gps and had a scan, they found I had multiple bulging discs and offered me an operation or steroid injection into my spine which I went ahead with. I'm on very strong pain killers and have been for over 5 years also . Sorry for the late update guys and ladies , my lovely mother who has been my rock and carer got dignosed with breast cancer and heart breakingly pasted away last year. I am now feeling more alone and lost with my lupus as a young ish lupus sufferer , wondered if anyone new of any support groups in West Yorkshire, Bradford , Leeds area??
Hope all is well with everyone and I can't believe it's been 5 years since I was last logged on.
Xx 😘 TinkerBell xX
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