Lupus : Hi I have had lupus for nine years now but... - LUPUS UK


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djsema profile image

Hi I have had lupus for nine years now but recently I have been suffering with back ache day and night dose any one have bad back with lupus?

15 Replies

yes! I've had problems with my back since I was a teenager, but this last year my lower back has been much worse. If I have too much uv exposure my legs and lower back ache a lot. Along with random pain in wrists and feet the increasing pain in my lower back is a sure sign of a flare up.

Had some wonderful hydrotherapy sessions that helped my lower back. I am going to try some simple floating in my local swimming pool, my physiotherapist is nagging me to get brave and go...also to do walking in the water.

Thanks for your reply.xx

I have had quite a few bouts of back problems over the years. It has seemed to coincide with periods when I have been feeling generally run down or fatigued. Coincidence or connection, I am unsure.

Thanks for your reply. Xx

There was something in the news a while back suggesting antibiotics may be a useful treatment in some instances of back pain. I have wondered whether it might be have been a useful treatment for me, as maybe there could have been something underlying that triggered the back pain.

The next time it strikes, as I am sure it will, I may enquire with the GP.

Thanks for your reply. Xx

have had bad back for the last ten year or more 24 hours a day permanent lack of sleep its into my neck now to have spondiltis with nerve damage so have to take meds for nerve pain and had to give up work so between all the tablits and more rest the back.s not so sore feel better now than i have for quite a wile hope it lasts have a word with your doc there.s bound to be something that can be done good luck g

djsema profile image
djsema in reply to farmerfester

Thanks for your reply, do you have lupus as well as all the back trouble?

farmerfester profile image
farmerfester in reply to djsema

yes have sle raynauds etc diagnosed finally in 2004 .

djsema profile image
djsema in reply to farmerfester

Thanks I'm glad it's not just me having back pain with SLE!!

Hi, I have had SLE for almost 13 years, and for the past couple of months I started having severe back pains. Never thought about the Lupus being responsible..... Hmm thanks for your message am now going to make an appointment and have some tests done to see if it's got anything to do with it.

Best of luck to you.

Gentle hugs.

Hi,I had to have extensive back surgery over 2 years ago, I now have two titanium rods 8" long at either side of my spine along with the nuts and bolts and the Surgeon said my spine was twisting so much he though it was at risk of it severing my spinal chord. Yes I now have a nice straight back BUT,I can not lay down at all without Morphine as a nerve touches one of the nuts and bolts - which the surgeon thinks is a 'minor' problem! I can no longer swim as I did and have had to learn back stroke,can't do hardly any house works and gardening (which I loved) can only walk with either two sticks (and not far) or my Zimmer frame with wheels. My husband says well at least I am not in a wheelchair which is true, but on nice summer days how I wish I could just go for a walk or swim without people complaining I am splashing them! So if they say you need a spine opp put it off as LONG as possible, try Everything else first. Sorry it is a downer, and I am probably one of the 'bad' cases but you need to know the bad as well as the good.xx

sorry to hear you are still in severe pain after surgery i am in line for surgery on c spine but it is difficult to find someone who has had similar surgery .

I have recently been getting severe back pain especially when i stand. I have been diagnosed with avascular necrosis of the hip bone due to having lupus and my kidney transplant. I take paracetamol and put my feet up a lot. Lower back pain is the worst. Also been trying to lose weight as i am on steroids since my transplant which is difficult. Take care. x

Hi sorry to hear you are suffering so much right now, I have been a lupie for almost twenty years and have had several problems with my back some requiring surgery but one thing that is always tested before the actual muscular skeletal problems in my back are looked at is my kidney function sometimes I get a little dehydrated which causes my kidneys to struggle resulting in back pain which is remedied by flushing them through by drinking plenty of water. I can only take morphine due to allergies to other drugs so generally try this automatically now. It might be worth just checking how your urine looks if it seems very strong try flushing your body through by drinking extra water it might help.

All the best hope the pain eases soon

Madmagz x

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