Anybody else in a flare?: I think I need a... - LUPUS UK


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Anybody else in a flare?

littleeffie profile image

I think I need a rotisserie bed with my head in the fridge and feet in the fire.

Think its a Lupus/RA flare but any body else have the horrendous temperature changes more than normal,sticking to bed or clothing,day and night but whilst feet are colder than the usual Raynaud's cold and hair and head dripping then body cold then hot then sopping wet and feint then dithery.Its not the menopause as that was a doddle compared to this.

Had similar time after time but this is in the extreme and wondering if it's the azathioprene ,a flare,a side effect of the nerve damage or me just being a big boo baby and noticing it more than normal.

Any ideas or suggestions please let me know.

Thanks in advance and hope you're all having an OK as possible weekend.

25 Replies

All I can say is, I have the air conditioner on, but I'm in bed with a heated blanket on my feet. So I know how you are feeling.

Denise1219 profile image
Denise1219 in reply to AnnNY

Yes exactly me too so strange

I am so glad to know it is not just me. I am hot and cold regularly now. Although I've noticed I am more cold lately. I drip in sweat, hair sweats (cant keep a style ). I have no solution but looking for one. I have an appointment with my doctor in two weeks if she tells me anything possible to deal with the sudden changes I will post.

Hi Littleeffie,

If it's any slight consolation I have been exactly the same for the last few weeks, in fact since the first signs of Autumn. It is the same every year and my whole heating system becomes totally haywire. Like you my feet are freezing yet my vest is sticking to me with sweat and head and face dripping. I am 62 and went through the menaupause years ago which was nothing like this at all.

Unfortunately it lasted much of last winter. If I went out in a chilly wind, instead of feeling like wrapping up I sweated, just like my heating system was totally out of kilter and did the opposite. At the same time my feet and hands would be painfully cold even although in warm boots and gloves.

It must be something to do with our autonomic nervous system though with me it feels like a flare lasting the whole winter.

At the same time I am overheated I get increased tinnitus in my deaf ear and blurred vision in my troublesome eye.

It does improve a bit after my depot Medrol injection but the improvement just lasts a few weeks, then it returns.

Oh to be normal !!!!!

At least we can have a mutual moan about it! X

in reply to cuttysark

What is normal? I forget.

Thanks everybody I am sorry you are all feeling the same but reassured its not just me. We really do need to get the doctors to grasp all the weird and not so wonderful stuff we have to deal with.

Also cuttysark I have the tinnitus thing I didn't mention it because couldn't believe it would be associated but from your reply it is.As you say at least we can come on here for a boo hoo and reassuring replies as the walls have no useful responses!

Randa_lupie ,

If your doctor does come up with anything it would be really great as mine are understanding but have no ideas on most things.As for my hair hair it is styled by evaporation and gravity,in other words I wash it and leave it hanging until it is dry before it gets all hot and yukky again.

Lupus and associated really do not play fair.

Hope you all have an OK day.

I think it is called the "lupus fever". It could mean that a flare up close on its heals.

I feel exactly the same although as yet I have no positive diagnosis. Rheumatologist so suspects seronegative lupus. Last couple of weeks I have been burning up, dripping in sweat but my hands and feet are freezing. Also been getting bouts of nausea and just feel unwell. Back at my rheumatologist in 4 weeks so will talk to him then. First time in seven months as I have been started on Hydroxychloroquine. Wanted to wait that long to see how I got on with it.

I am also suffering nausea ,lack of appetite,back pain and extra fatigue so think it is a flare although today it feels more like a huge great flame thrower .lol.

Hope we all feel a whole lot better real soon.

Looby profile image
Looby in reply to GloomyEeyore

I think the brand name of the drug you have started on is Plaquinel. I don't want to put you off, especially if your Consultant has prescribed it.

However, if your hair starts to fall out - advise the hospital. I also had a really sore skin reaction to this drug, which put me in hospital. This was after I had been in a really hot country (Spain) - so it may have been a combined reaction. A few weeks after I stopped taking Plaquinel, these symptoms ceased - and my hair grew back (thank goodness) - so I am pretty certain this was the cause.

I am now very cynical about being prescribed rheumatic drugs and steroids, having felt like a guinea pig for over 6 years on a "suck it and see" regime by the various medics. Some folks are on a staggering cocktail of different medications, and having worked in Pharmacy for over 5 years (prior to having to retire early) I am now convinced that some of the symptoms we Lupies experience are not helped by some of the drugs.

I'm now choosing the more "natural" treatments and habits, like:

Acupuncture, gentle exercise, eating non processed foods/drinks, more bottled water, avoiding polluted areas where possible, avoiding aerosols and toxic cleaning products, sleeping in 4 hour segments using an orthopaedic comfy pillow, cool pads, wearing socks in bed,relaxation techniques, and having a fan by the bed that can be turned on and off.

Not sure what others think - there must be SOMETHING (S) in our modern world that is causing thousands of people to have these symptoms!

I also suffer terribly from four or five hot, dripping, spells during the day. i have had lupus for several years, and am on plaquinal, medrol, etc, i was recently diagnosed with myeloid leukemia as well. The doctors thought maybe these hot spells (cold feet) were due to the leukemia. Now I see you all share the same problem. If anyone gets a solution (medrol reaction?) over active immune sysytem, I Would love input.

Yes that's what I am going through for the last two years and dr said side effects and told me to hang in there

Absolutely. You describe to a few how I get sometimes and I don't know if its a flare either. The freezing/tropical contrast is so frustrating. I found a cold,damp flannel around my neck helps but the icy feet is still a problem. Sincerely hope you get relief Effie, as do I ❄🌕

I am uncomfortable mostly at night, I heat up, but not to the point of sweating all over, just at the nape of my neck sometimes. However, I ate a Mexican rice and salsa that my daughter is very good at preparing and paid dearly for it. It seems tomatoes and chili pepper mixed together are not good for me. My back and neck were swollen and achy! They felt as if an alien was creeping around on the inside, and my back actually felt as if I had something riding on it! I love that rice and salsa, but I clearly can't eat it. I hadn't experienced a flare up since being on med's now going on four months.

My big right toe felt as if someone was drilling it! This is some crazy type of disease to have, but I know by the blood of Christ I am going into remission and will be healed. I claim it now.

I have exactly the same and posted on this board and was told that an answer for night time is an electric blanket that automatically adjusts to your body temperature .have a look in Boots I will get one when at home as in Manchester for tests. Good Luck


Just noticed you posted on pregbalin a while ago and was wondering if you gave it up or kept using it and if not what else has been working.Just asking as tried it ages ago ,one dose, and had an adverse reaction but pain clinic consultant wants me to try again for the CRPS pain as running out of options due to allergies.

I was also on Pregabalin. Was gradually was increased from 25mg to 200mg a day. Had a bad reaction at the 200mg. Felt no benefits at the lower dose so was gradually weaned off it and am now off it altogether. Since stopping I realised that one side effect was weight gain as I have lost over a stone in weight!

Hi littleeffie

Just wondering have you had your thyroid tested recently?. It can upset your body's temperature system amongst other symptoms.

I have also tried Pregabalin and couldn't tolerate the side effects. It's stronger and gets into body quicker than Gabapentin. I've gone back to Gabapentin on an increased dose!.

Good luck if you try Pregabalin again, very brave. X

littleeffie profile image
littleeffie in reply to misty14

Hi and thanks for reply.

I have my thyroid checked every 3 months following thyroid cancer 4 years ago and am on oversupressive meds but same dose and results for the four years but will ask them to double check all thyroid function.

Haven't started pregbalin yet as very wary but going to try at weekend when dfont have to drive .

misty14 profile image
misty14 in reply to littleeffie

Hi littleeffie

Good luck for trying Pregabalin at the weekend. Hope your starting at the lowest dose and building up gradually?. Let us know how you get on. X

littleeffie profile image
littleeffie in reply to misty14

Got call to wait and seee gp before starting on them as they aren't happy with idea after last reaction so will see what Monday brings.

misty14 profile image
misty14 in reply to littleeffie

Hi littleeffie

How did you get on with your GP and Pregabalin?. I had chest pain/symptoms from it and as I do with Lupus too couldn't stay on it!. Oh the great juggle we have!. X

all I do have co-codomol keep tempreture down lots of layering clothing. sleep helps if you don't have kids take to school. half term next week. Again. heating back on again. flu jab when I feel better???.

littleeffie profile image
littleeffie in reply to tracyxx

My kids ADHD and other probs kind of negates the bonus of half term but at least won't have the 12 mile round trip twice a day.

Hi Effie - only just read this post but derive great comfort from it because I too have exactly the symptoms you describe. I am increasingly convinced, as was my old GP, that I have seronegative Lupus, rather than RA as I was diagnosed with four years back.

One of my main symptoms is this feeling of icy cold in my feet/ toes alongside burning and sweating inappropriately. In the night my peripheries throb and burn but during the day they feel wet, cold and crawly. I have sweats exactly as you describe too after a year or two of being unable to sweat at all. My old GP wrote on my patient summary sheet that this is autonomic peripheral neuropathy or dysautomia. I am hypothyroid and take 100mcg Levothyroxine.

What with this and the Hoover nozzle sucking on mouth sensation we share - I think it's all adding up - for me anyway - even if not for my new rheumy. Interesting about the mattress I might try one of these when I get my old bed back.

Take care, Twitchy

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