Probably a strange one, but does anyone get chills at night in bed, sort of like the old saying, someone walking over your grave? This has been quite persistent recently and wakes me up, passes, no fever, no temperature. Happening one or twice in the day. I had this right at the beginning of my diagnosis and my consultant called it nocturnal shivers, and did not know why it happens, but could be signs of disease activity.
Anyone?
Hi Karen, i have been suffering with SLE (LUPAS) past 27 years. Recently i have had had successful kidney transplant. I had and still experience of sudden chills. Even though in suni feel the chill. That's why we need to be prepared for the weather as you can't predict, I carry light cardigan in my bag. I hope it helps
Thank you blessed for your reply, much appreciated.
Yes Louise I have had Thyroid checked, full panel, normal. Plus Thyroid scan, which did show multiple nodules, deemed non-suspicious, though investigations in this area, continue.
Thanks for the replies Louise, no not that I have identified, having said that this last 15 months I have had my meds pulled due to peptic ulcers, so that means a restart, I'll have a chat with my Consultant when I see them next week, anything useful will post here.
Hi LupusKaren,
Experiencing chills especially, 'night chills' can be a symptom of lupus. Symptoms tend to be persistent when there is higher disease activity within the body. You may wish to speak to your GP/rheumatologist about this to see what they advise.
Dear Chanpreet, thank you so much for the information and advice, this is going to be very interesting at my appt next week with my Consultant, she has always stated 'nocturnal chills' can be a sign of disease activity, but recently this was dismissed by a Registrar as 'fanciful' and that I should put another layer of clothes on in bed, I kid you not. I think a rethink of my medications possibly is on the cards, as Cellcept and Plaquenil are not seemingly working for me atm.
You're welcome. Please let us know how the appointment goes and what the outcome is. All the best 
.
I’ll be interested to hear how your review goes as my meds literally never change. Do your bloods show uncontrolled lupus activity?
Clare, no my bloods aside raised ESR, on recent admissions for PE, were considered normal, until my Consultant pointed out, that bloodwork does not always tell the whole story, and should not be relied upon totally to say no disease activity.
Totally! My rheumy says the same however my fluctuations of esr (between 5 - 50) were not considered to be big enough numbers to be of any value when the chips were down. He did mutter about tweaking my meds but it’s come to nothing. Unfortunately, the step up from mtx/myco/aza is a large and expensive one and that’s when blood tests do count as evidence.
Sigh, Clare do you ever get weary of hearing about 'cost' it is so frustrating that in order to step up to the next med range, you blood results have to count, even though we are so terribly unwell. Something seems very wrong, and personally I blame big Pharma and their greedy price tags on the medicines, but the the NHS could so better at sourcing cheaper alternatives if recent tabloid exposures are true.
It doesn’t sound like rigors. Rigors are an almost convulsive shivering as the body is frantically trying to raise its temperature very fast to stimulate more white blood cells. Ive had rigors many many times and there is no mistaking them.
Shivering, yes i get that too. I always know because i get goosebumps on the inside of my forearms unlike normal shivering when I don’t.
Clare your right, I don't shake, and I absolutely get the goosebumps.
Omg, I get this, seems to be worse when laying down/at night, around my chest & back. Told my cons I thought I was having some sort of pancreatitis attack, not that I have pancreatitis (that I'm aware of anyway!).
Hi LupusKaren
Wow I'm so glad that you've mentioned this problem. I suffer with this a lot especially at night (on occasion in the day) when I've mentioned to my gp or consultant they look at me as if I've lost the plot. I'd even go so far to say that this occurs between midnight and 5am and despite putting on layers, covering my head and hot water bottles ( I sleep with 3 or 4 a night) I just can't get warm!!!! It also happens during the summer and winter. If anyone ever finds out why this happens or what it is called please post again. Keep warm LupusKaren xxxx
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