Insomniacette

Hi Angelx01x

Raynauds can sometimes happen with auto-immune conditions. I have raynauds so find myself wrapping up extra warm in the winter months to keep the heat in, paying particular attention to my extremities - hands, feet and nose in my case all go ice cold sometimes if I'm not keeping the heat in. It has led to the opera buffs in my family singing "che gelida manina" from La Boheme at me... which somehow always makes me giggle. Family at christmas eh...

Here's the NHS page on Raynauds in case it helps:

nhs.uk/conditions/raynauds/

Spanielmadlady

I can often feel chilled to the bone and the only thing that helps me is a bath.feeling cold is also a symptom of auto immune thyroid disease (hashimoto's) and b12 deficiency anaemia..people with sle often have more than 1 autoimmune illness. X

Mrsgem

Hi Angelx01x

I have mild SLE and when I’m having mini flares/ increase in symptoms I tend to have evening chills also. Like you I need to wrap myself up in jumpers and under blankets (and I live in middle east where it’s certainly not cold!!). I like you haven’t got Raynauds but do get these cold chills and have had them for a few years now. It’s only since diagnosis this year that I’ve really noticed a pattern with them linked to flaring up of symptoms (mouth ulcers, joint pain, fluey body aches, fatigue etc).

I think lupus expresses differently in all of us and this is just my experience but hope it helps.

Take care 💐

Mrs Gem x

Lizard28

I buy those little hand warmers, I put them in my gloves and they stay warm for hours, my hands are always cold, possibly raynaulds.

foxglove in reply to Lizard28

If you don't mind would you tell me where you buy the little hand warmers ? Thanks

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Lizard28 in reply to foxglove

I bought them from amazon but I think Home Bargains sold them as well. They stay warm for about 8 hours. They were a godsend for me when I was getting chemo as my hands were so cold because the medication was so cold going in, my hands were white without them. I even had them in my gloves to keep my hands warm before the cannula went in, kept the veins plumped up. Hope this helps

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foxglove in reply to Lizard28

Thank you very much for info, I will check Amazon and we have a home bargains a short walk away, got a feeling I saw some in Tesco but they sounded too good to be true and I didn't purchase, must look again but I expect all gone, I'm taking nifedipine which helps a lot but doc. didn't put on repeat script I'm waiting for a call to see if he will

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BeeManShrop in reply to foxglove

Our kids (both heading for 50) bought us each --- "ocoopa hand warmers rechargeable, 7800mah"--- from amazon they are very good with variable heat and lasts a good time before a recharge is required. You also need a 5 amp usb charger though.

You may also be interested in Warmies -- also from amazon. Like teddy-bears that you put in the microwave to warm up. We have bought some for Christmas presents.

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foxglove in reply to BeeManShrop

hanks for reply, I think warmies maybe the answer!

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miccika1

You do jave raynaud's if your fingers turn white and toes purple. Not sure about feeling cold but usually if you have low grade inflammation you would feel cold. I attribute my feeling of cold to lupus so i take tylenol and feel better.

nellie_4132

I haven't had clear symptoms of Raynaud's with my fingers turning colors, but I am much more sensitive to the cold than I was previously. It takes me so long to warm up once I get cold, I am sleeping with two thick blankets at night now and a room heater!

TwitchyM

Yes I get this too, glad it’s not just me! I’m not fully diagnosed as yet but under investigation for SLE. Runs in the family. At least once a day I will suddenly become icy cold all over, struggle to warm up, and I start shivering violently. That being said I do have movement disorder which amplifies my shivering. It usually takes a good twenty minutes of shivering badly under a load of blankets before I warm up. I don’t have raynauds either.

Angelx01x

Thank you all so much for all of your advice and sharing what you are experiencing. It’s hard being in between investigations and not having definitive answers. I’m experiencing so many different things and don’t want to blame everything on lupus but it does seem it’s all connected. Possibly I’m having a flair? And that’s why I am sensitive to the cold. I also had a swollen and inflamed and red ankle a few weeks ago, it only lasted about a week. I also feel very tired, have brain fog constantly, feel drunk almost and my anxiety it through the roof!

Kelbol1

I few cold constantly unless I’m having a hot flush 😂 even thick socks on I can’t warm up - hot shower is the only thing that helps. The brain fog and sinusitis issues were the worst for me to the point I couldn’t remember where I was going on the way to work and couldn’t remember normal words people would finish my sentences. It took years to be diagnosed once I was put on meds it got better but there is always something new never the same recently been started on mycophenolate as the brain fog was so bad. I couldn’t comprehend when people were talking this seems to of done the trick but then I’m now suffering with dry mouth and still get flares but not as bad as they were. Hold on in the diagnosis is in sight - don’t be disappointed if they dont diagnose for a year though as they weren’t quite sure if I was lupus or MCTD because I had a certain antibody they decided lupus x

Willow1414

Hi Angelx01x

It’s worth having your thyroid tested (bloodtest) done .

Before my diagnosis of thyroiditis I could not got warm , among several other symptoms . I would have a sheepskin coat on and the heating . It was unbearable .

At least rule this out . It is quite common along side SLE .

🦋❤️

Cas70

Dear Angel - I have the same illness as you with the Discoid, scarring and alopecia. I have the opposite to you though in that I burn ! I break out in very hot sweats like menopausal flushes, at night my feet burn so much I can’t sleep. We all react differently to the drugs we take too.

I have so many odd symptoms as do others in my support group. Get in touch with Lupus UK and find yourself the local Support Group it will really help to talk with other sufferers of this awful illness Good luck

Krazykat26

Yes Angel both extremes..hot n cold..perfectly described here a while ago as "my thermostats broken" 😹

For cold I love my hot water bottle coz I can put it wherever I'm the coldest..I've got a soft furry cover on it too 👍

Make sure your core is warm..u can wear up to four layers of clothing..I find this time of year..a long sleeved thermal top..with a t-shirt over it helps me manage it a bit better..but that's not all..I've got a big cosy dressing gown..poncho..n warm wrap that I put over my shoulders. Not at the same time though 😹🌈😽😽xx

SurferGuy

Angelx01x the way you describe the cold symptoms, you may well need to get a double check for Raynauds. I have the same symptoms and most definitely do have Raynauds. For my hands, I was advised to wear rubber gloves under a pair of normal gloves when it's very cold outside. Also, make sure your fingers and toes are well moisturised as the cold can cause digits to crack and become sore.

In fact, the way I found out was when I was visiting the Space Museum in Leicester a few years ago. They have machine that detects body heat and I was playing around in front of it. My friends and family were teasing me about how white everything was in my body. Then when I walked away, a gentleman approached me and said something along the lines of "Hi, I'm a Dr and I noticed your body temperature on the machine. If you don't mind my asking, have you seen a GP ever about feeling the cold"?

It was after this that I was told I have Raynauds. I'd never heard of it until the visit to the museum.

Angelx01x

Thank you again to all of you for your advice and tips I really appreciate it! I have my next rheumatologist apt in the new year so I will talk to him again about my symptoms, I’m sure I will be having more bloods taken. I’ll talk to him about raynauds too! It’s not the whole of my fingers that go white tho, it’s the palms of my hands and then I slowly see the colour coming back when they warm up. Whilst I’m asking things..I’m currently on hydroxychloroquine, have been since June since I was diagnosed with DLE I’m finding I have itchy skin, it’s not all the time but it’s just something I’ve noticed...could it be the hydroxy? And does anyone experience a drunk feeling? It’s not a nice sensation...wouldn’t be so bad if I had a drink lol 😂 Is that a symptoms of lupus/fog/cognition type of symptoms

SurferGuy

I personally don't get itchy skin from the hyroxcyhloroquine. Have you checked the side effects list that accompany the meds?