Any suggestions?

Hi all, haven't been on here for ages as everything had been under control. I have had SLE for almost 15 years now, but am not sure if the symptoms I'm presenting with now are to do with the Lupus or something else.

Recently I have been suffering with a burning pain in my knees and groin/hip area. It generally gets worse throughout the day and can be completely unbearable if I have done a lot of walking. I have also noticed an ache in my shoulders/neck and more headaches than usual. Have tried taking painkillers (codeine, tramadol, ibuprofen & paracetamol - not all together!!!!) but nothing seems to help.

Last set of blood tests came back clear, only showing up a slight infection that I was recovering from at the time. Does anyone have any suggestions please?

Many thanks


10 Replies

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  • Hello - I posted today to ask about neuro tests. I have RA rather than Lupus but have a small fiber neuropathy - very painful burning in all four limbs - which is currently being investigated. AnnNY replied with a link to new research that suggests people with get a different type of neuropathy to the usual distal sock and glove type. I'm not sure if this seems relevant to you but you mention burning in your knees and groin and it just rang a bell...

  • Thank you will have a read :)

  • Hi Wendy, I have all the same type of pains as you, mainly down my rightside though but no swelling.Unfortunately the only thing to help me is steroids and Im also on aziothyaprine (immune suppressant). My blood tests are usual normal showing no signs of inflammation which is frustrating beyond belief as I feel like a fraud but Im under Guys hospital lupus unit and they just accept that lupus is unpredictable and not well understood.

    Hope things improve for you.:-)

  • Hi I don't have swelling either, and am also on steroids (prednisolone) and immuno suppressents (mychophenolate mofetil). Think it may be yet another trip to the GP's, although not sure they will have any ideas. Hope things improve for you too :)

  • Hi I've got arthritis in lots of places but lat April I had a really bad pain in my groin/ thie area and thought I was developing arthritis in my hip but after x rays they said I wasn't. The pain was so bad I couldn't walk forward or turn to the right. Couldn't even get down or up small steps. Lasted for 6 months. Doctor sent me for physio but it was September by the time I got to see her and it had gone on it's own. No idea what caused it. Thought it was coming back last week as I had a few twinges but thankfully it didn't. Sorry this may not be helpful but thought I'd share it.

  • Hopefully it won't resurface!! I don't know about you but I find physio only works will I'm going through it so tend to avoid as much as I can. It's also nice to hear that I'm not the only one with these symptoms.......sometimes I feel as tho it's one thing after another :(

  • She gave me exercises to do and because I can't walk very well or climb stairs, told me to go out and walk on the patio everyday and do a few steps more each day. Not easy when you have balance problems and bad fatigue . Nothing really works though, no better than I was at walking, just loosened me up a bit. I know what you mean by one thing after another. Yesterday I had really sharp pains in my ankle for a few hours , then it just went. You never know if something is going to come on when you go out. Really annoying.

  • The best help I've recieved is from a great osteopath as she works on my body and tries to re aline my spine and loosen my neck but unfortunately I can't afford to go to her though I've just been awarded PIP standard rate back dated so I might treat myself. Xx

  • I've given up on pills. I've started using natural things apart from a couple of asprins morning and night. Could do with more really. Doctor took me off diclofenac and gave me paracetam which is rubbish. Wouldn't perscribe asprins so I buy my own.also gave me blood pressure tablets which didn't suit me at all. So now I drink beetroot juice for fatigue and blood pressure. Apple cider vinigar to stop ulcers and helps with arthritis and blood pressure. Cinnamon , manuka honey and peanut butter which is also for lowering blood pressure and amazingly helps lose weight as long as you only have 1 teaspoon a day. I feel a lot better than I used to.

  • wended how are you doing? please post how things are going with you ? Thanks

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