Painful, stiff, swollen legs.....any advice?

Hi, my sister was diagnosed with LUPUS about 4 years ago. Over the last 4 days her legs have become extremely painful, so much so she is struggling to sleep because of the pain. She is taking Ibuprofen and Paracetamol but they dont seem to be helping. She says they feel really tight and she cant bend them. Walking is painful and she is just so tired but cant sleep because of the pain. Does anyone else suffer from this, is it LUPUS related and if so do you have any advice on how to ease the pain and how long does it last?

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8 Replies

  • If they are that bad, I would take a trip to the nearest casualty for a check up, or at least out of hours as sometimes people with Lupus can develop complications with blood clots, best to be on the safe side, and at least rule it out. MaryF x

  • Thanks Mary, thats what I am telling her but she is worried that she will just get the response "You have Lupus, of course you are in pain!" I wish there was a specialist that she could speak to as and when she needs to. Each time she goes the doctor the answer is always the same, oh that will be because you have Lupus..........................its so frustrating for her!

  • You need to be her advocate and go with her and firmly remind them that you understand that Lupus is fairly rare but that you are sure they are medically aware that a percentage of patients have Hughes Syndrome: Here is a website for the charity which shows symptoms, many members are on Lupus UK for excellent advice and also on HSF as many of us have both: - be very firm and polite! MaryF x

  • You hzve described my symptoms too but i do get relief if i take ibubrofren and paracet tog. Wish i could help more. I find walking painful however i must continue to do so as i am overweight

  • I had swollen legs and went to casualty and got told I don't know what you are doing here.(wasting 8 hours of my time)so went to gp and he confirmed my legs were swollen but said nowt P----d of with getting fobbed of and being told everything is fibromyalgia and taht I don't have lupus or thyroid or oc despite symptoms.

  • Hi snaz

    I too suffer thigh and knee pain constantly I'm not over weight so I can't blame that I try very hard to keep as active as I can even when in lots of pain, but my biggest problem is getting doctors to listen and help me, my last rhuemy visit said I'm just over doing it and he could be right (sometimes,but not always). I used to be able to ride my push bike regularly to help with stiff legs but this winter I haven't been Able to once which has Sadden me.

    Like your sister I too have had bad nights sleep due to the constant squeezing and aching thigh muscles and yes it's true pain killers don't help much.i now sleep with a pillow placed between my legs so my knees don't touch and I find this helps a little.

    I have tried being more pro active to see if they can strengthen muscles to ease pain that most defiantly did not work made it much worse so, this week I have really rested where I could (had to take two days off work though) and sat when I could and kept my weight off my legs and slowly they are improving.

    I also went to GP and got bloods done (he always does them when I'm worried) and they have come back ok ( meaning nothing more serious is going on) however no one can tell me why I hurt so much I have my suspicions that it's fibromyalgia but my GP won't confirm that he wants my rhuemy to do it but I have to wait till march for that.

    It is so frustrating but getting bloods checked by GP might help with piece of mind if worried or at least if something more sinister is going on.

    Hope she feels better soon.

  • You mentioned that her legs are swollen. Swollen feet/lower legs can be a sign of kidney failure. She should give her doctor a call. If the pain keeps her awake, then she needs adjustment in her medications. Immunosuppressives, anti inflammatories and/or pain medication should be evaluated.

    When my lupus was at its worst, I have trouble walking and bending all of my joints. Warn baths were always helpful. I often took several a day.

    Even though it painful and difficult to move the joints, movement actually lessens the pain and inflammation in the long run. This doesn't have to be intense exercise. If she stands up every half hour and walks in place for a minute or more, that will help.

  • Hi, sorry to hear your pain, I suffered something similar and was told it was caused by water retention, caused by kidneys leaking proteins, so I suggest that, yes, go get checked out for that or DVT, both can be serious. Good luck.

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