All over body swelling

[Emily00]

Hi

I have SLE, class 5 lupus nephritis and recently Sjogrens. I am fortunate that I have never had the joint pain and swelling although I have quite loose joints when flaring but have bad skin and hair involvement. Right now I have very swollen parotid.

I think I am starting a flare now but seem to have put on weight very quickly (10kg in a month) I think I am swollen all over my body but I can only find reference to localised swelling in joints or in the ankles with kidney problems.

Has anyone else noticed swelling over their entire body when having a flare?

[cakerbaker]

Hi Emily, I am sorry you feel so rubbish and that getting information is so hard isnt it!! I only have access to my rheumy nurse for 2 hours a week and then its a queue thing. I am still learning. I do however have bilateral swollen parotids which extend right up my face in front of my ears. They are dreadful and make me feel like I have constant earache. Is this a normal thing that happens with lupus do you know? Its lasted 2 months now and so they have decided to scan them. yay. Do you know what's causing yours? is it the Lupus? I am very wary of putting everything down to that.

Swelling may be due to fluid retention I suppose, I know people who have had it both with steroids and with kidney issues. probably best ask one of the professionals. I too am swollen although i really noticed it when i had to have my wedding ring cut off and after having it resized have gone up 4 ring sizes. The rest of my body has followed suit and my limbs too. My joints aren't so much swollen although they feel like they hurt. Mine isn't related so much to a "Flare" as its never really settled in the 18 months i have been diagnosed. More just generally day to day.

sorry i cant help more. I hope things settle down soon.

[Tykle]

Yes, it was what finally got me to see a specialist. I'd already had a severe skin reaction to the sun and numerous swollen glands as a teenager but in my early 20s, I put on over a stone (whatever that is in kg) in two months. I'd always been the skinny type who never puts on weight and I thought I needed to change my diet and exercise more but a month and an additional two stones later, I decided something was wrong and went to see a GP , who probably thought I was worried about getting fat and dismissed it. By then I was waking up with a swollen face and end the day with swollen feet as gravity did its work.

A second GP took it seriously and referred me to a dermatologist, who was excellent and listened to the whole picture . I was in hospital for three weeks for numerous scans and tests, which resulted in my diagnosis of SLE and Sjogren's, I had water in my lungs, which with hindsight I should have realised when I'd been gasping for air while running up stairs (thought I was just out of shape!). Steroids sorted it out and I was back to normal a few months later. I don't think anyone really knew what triggered it in the first place but it hasn't happened since.