I am on fire!

[ac489]

I feel like I am burning up under my skin but I don't have a fever. Does anyone else get this? At night I sleep sometimes with ceiling fan on plus a small round fan at my face and a tower fan toward my body but need socks because my feet are cold. My poor sweetheart says he is freezing even with blankets on, lol.

[loopy-lou]

Hi ac489, I have had this on/off for 6 years. My face burns like I have been exposed to mid day mediterranean sun that I have spent all day in. My face at times goes red at other times it feels like this and no redness. I too sleep with a fan at my face even in the winter but under a warm duvet. I don't have a fever with it either. I am very careful to avoid all forms of lighting/sun and keep to bite size times in front of the computer screen as it can set it off. I have found it slightly better since being on methotrexate but it still happens. It is very annoying to live with. You are not alone with this. Keep well.

[ac489 in reply to loopy-lou]

Well, relieved I am not going crazy lol

[littleeffie]

Hello and yes from other folks previous posts including a couple of mine as lot of us have the joy?of this experience. Hence the hot cold Hot cold line in my latest post H is for ...

If you find a cure you will make a lot of people really happy.

Take care .Sending some cooling thoughts

Effie

[Ellenkay55]

Hi ac489. I too have to wear bed socks at night because my feet are so cold - and also 2 pairs of socks and warm slippers when I am home reading or watching tv etc. during the day. Like you, mostly when I wake up in the morning, but sometimes also before I fall asleep, I feel as if my body is on fire. Forever sticking my feet out of the bed to cool down as sometimes my feet also change from freezing to burning. Not sure what causes it. Possibly peripheral nervous system though I was recently told I my p. Nervous system was OK because MRI had shown I had spinal stenosis and my severe pain in right leg and numbness/cold in both feet and right leg was caused by this. Had an op in March to decompress the nerves that were causing the problem and IMMEDIATELY pain stopped. Still have cold feet nd numbness though, but that's bearable even if uncomfortable. Not sure if the burning sensation started before or after op but do remember having it severely about 2 years ago when I was rushed to A&E with what turned out to be pancreatitis. Whether burning or not, I am always HOT day and night, but have occasional bouts of shivering, too, which usually last only a minute or too. Don't know if this is helpful or not, but at least you know you are not alone in feeling you are on fire. Hope things will improve for you in time.

Ellenkay55

[Whathappned]

Hi

It was worse initially for me. It comes and goes now and I have had to put 2 single quilts on the bed as hubby can be freezing whilst I boil. I thought I was going through the menopause.

It has improved but some days I just heat up. Most people think it's the change but I don't. I have to keep myself cool or I find I get achy and less able at work. Things trigger it like hot food and drinks. Showers and baths drain me and I often feel I need to have another straight after unless the water isn't too hot. I used to love hot baths and showers.

I was actually confused the other day because I was cold. I thought I must have a bug as it was so unusual.

Last Xmas I was in our local cold church watching the school service. Everyone around me had big coats on I was comfortable in a thin top!

[ac489 in reply to Whathappned]

I was also getting confused wondering if it was part of menopause but I had night sweats before and I would wake up drenched in sweat around my neck and chest. This is different because I am not always sweating when I feel hot, it's just like I feel flushed and burning up like a fever. It's worst at night I notice but comes and goes throughout the day too. I also notice it gets worse if I do anything physical like just walking out on the porch when I let the dogs out sets it off or jut doing dishes I get exhausted and hot.

[Wendy39]

Hello. I get a few, less severe heat problems. My butterfly facial rash is permanent on my face anyway, (as scarred) but it can burn up worse than normal, at night for no apparent reason and this can last a few hours. I also get " hot flushes" in my legs, where the heat sensation travels around them, feels very strange and again can last a few hours with no obvious trigger. However I have to sleep with socks on, I can't sleep with cold feet. I'm not sure where you are from, but Marks and Spencer's apparently sell a duvet here with two different tog ratings on either side / so one side is winter tog 15 and the other a summer tog 5. I think it is called a His and Hers, where the man is supposed to have the 5 tog and the woman the 15 tog. Worth googling to see if any other companies sell them? Best wishes.

[ac489 in reply to Wendy39]

So sorry to hear about the face rash. I have never had that and am scared to get it. All these other symptoms are bad enough. I live in Texas and not sure but will look into the duvet.

[Tinky52 in reply to ac489]

Hi ac489, I don't get the butterfly rash either. My face turns red at times. I live in Missouri and have to dress in layers. Does anyone deal with the stomach bloating? One day it looks like I'm 8 mos preggo the next, my stomach is flat. It's so crazy. Please help if anyone knows Merry Christmas xx

[ac489 in reply to Tinky52]

Yes, my stomach does some weird stuff like that too. I never had problems with stomach before. I have very little appetite a lot now but when I do get hungry and eat, I get indigestion and am always burping now too so I get embarrassed when I am around people.

[georgie63]

Reading what all of you have written it seems you are describing what I go through daily as well.

I get weird looks too, as whenever I go out I don't wear a coat, even when it snows I've been out without a coat, as I'm just so hot. Everything that you all have said you suffer with is exactly the same as me.

When I go shopping my face and arms are red hot, and my hair is all wet, I look like I've just stepped out of the shower. But it's the looks other people give you that makes you feel awkward. It's got to the stage now that I only go out once a fortnight, and even that's changing as I'm ordering off the internet so I don't have to go out then.

It's so nice to hear that you are not weird, as other people are going through exactly the same too. I too thought I was probably going through the menopause, but I've had this for well over 10 years now....lol

At least we know that we're all in this horrible illness together, and we can come on here and rant to each other. Nobody else outside of this illness just don't understand what we go through daily, however much I've tried to tell my family it's fallen on deaf ears.

Xxx

[ac489 in reply to georgie63]

Sorry to hear you have been going through this so long. I am so glad I found this group and agree that nobody really understands what we are going through except others who are experiencing the same. I just started this and hoping I can go into remission quick because I can't imagine having it for years. It really makes me depressed so the only thing I can do is come rant on here like you say.

[Tinky52 in reply to georgie63]

Hi georgie63, I feel the same way you do!! I hate going out of the house cause I look like I haven't taken a shower in weeks! I do a lot of shopping online as well. My husband drives school bus and whatever he has breathed in, I will get sick and it affects mainly my upper respiratory. Do you suffer from sore throat or hoarseness? Soft hugs and have a Merry Christmas xx

[lupusinflight]

Yeah, we are the fire girls with frozen feet and fingers! Maybe we should start a band?

It is a peripheral neuropathy/form of vasculitis that causes our complicated response to temperature shifts, whether it's being abnormally hot or cold.

The lupus body is an uncomfortable body to inhabit! It alienates us from our own self... And on that note, Happy Halloween! 👽😋🤗

[ac489 in reply to lupusinflight]

We could have smoke swirling around us in our band, lol

[lupusinflight in reply to ac489]

Definitely! Except then our eyes would get dry and we'd be flailing about falling off the stage... oh dear :/

Yup, have to joke. First rules of survival!

[ac489 in reply to lupusinflight]

I guess we have to joke to keep from crying and giving up...

[Hidden]

Hi. I have a diagnosis of RA rather than lupus but am convinced I actually have lupus. My feet and legs are either wet, toes feel like ice blocks and go white.

Then all burns and throbs - hands and feet and gums and lips - all night so that I don't sleep. My face used to burn too but I had an early menopause and don't get this anymore, I wake drenched in sweat often - but during the days I am usually feezing cold. I used to always be hot in my extremities - my sons and husband would hold my hands to warm theirs up.

Now it's the other way round except at night when I feel as if my feet, ankles and hands have been dunked in burning oil. There's nothing in the middle.

I've noticed extreme temperatures make it worse and eating spicy food makes my mouth burn too. But it's a daily occurrence regardless. Too weird to have icy, numb, wet feet while my hands and mouth feel scalded. Sometimes it's the other way round. In fact I im often burning and freezing simultaneously.

I'm assuming it's all part of having a connective tissue disease although I can't get my rheumatologist to prescribe me any more immunesuppresants for it unless I have swollen joints once again.

[ac489 in reply to Hidden]

So sorry to hear you are suffering from this. It sounds like what I feel off and on. I would say it sounds like Lupus. Sometimes I just feel like under my skin is burning but not sweating and other times my feet are frozen and I am drenched in sweat. It is quite frustrating for sure.

[Hidden]

Thanks. It all just adds to my conviction that I have lupus when I read posts like this. X

[ac489]

Same here as far as the symptoms. I have not been to rheumatologist because I do not have insurance and it is very expensive for all the labs they will want to do. All the symptoms I am having that so many people who have actually been diagnosed on here, make me pretty certain I have Lupus. The only problem with it is I am not able to get medicine but I want to try to find alternative medicine anyway as I do not like taking medicine.

[ac489]

Is there anything we can take to help regulate body temperature?

[Tinky52]

Hi ac489, I suffer with this same exact thing. I thought it was hot flashes but it's not. I sleep with the fan on and my husband freezes, but sorry, I come first! Lol. I've had sle for 15 yrs now and several surgeries but it sometimes takes years for a Dr to actually say "YES" you have Lupus. I hope this eases any questions you may have. Hope you and yours have a Merry Christmas and Happy New Year. xx