There is a strong possibility I have Lupus and saw the Rheumatologist recently so I'm awaiting some blood test results and results of some X-rays. Recently I've been excessively overheating. It's as if there is a furnace inside of my body and I am burning on the outside. I feel the excessive heat on my trunk, face, arms and legs. I then eventually cool down. It happens in bed or at anytime during the day. Is this a symptom of Lupus? Just to add I had a Cortisone injection in my shoulder this week.
Hi Matron
I posted a similar question last year as this was something I was struggling with. One minute I felt normal temperature, the next I was on fire, this happened at any time night or day, with no apparent reasoning. I have Mixed Connective Tissue Disease, one of which is Lupus. I was diagnosed last year, after struggling on being ill for 7 years. I am now taking hydrochloroquine with gabapentine (along with other medications for my other "mixed" diagnosis, which has helped. I still do get excessive heat episodes, but think this is just one of the things we have to "bear"!! I do, however, dress in layers, so that I can take clothes off when I feel it coming on........don't despair it's good for winter!!!! Just a suggestion, keep notes on how you feel on a daily basis so that you can report back to your Rheumatologist how you feel - you will know more about it than they do!!!!! Take care and keep your chin up.
Hello Jean thank you for responding to me. I was very concerned about these episodes of over heating. They do appear to be getting less frequent but they occur day or night without any warning. I will mention it to the Rheumatologist at my next appointment if they continue. I think your idea of writing down how you feel every day. I intend to start that as of today. The problem I have is that once I get in the consulting room I always forget something, then remember it on the way home! When I was researching these over heating episodes I came across something called Lupus Fog. My memory lately has started to concern me and my husband. The other day he remarked that I used to always be on top of things and in control. Not any more unfortunately.
Hi Matron
The memory fog is one of my major concerns....I have quite a pressurised job where I used to be able to rely on my memory but now I rely on "post its"....the same goes for when I type things, I used to be able to type and know it was correct, now I constantly have to go back and check. My partner and I try to laugh at my lack of recall but sometimes it can be distressing, especially on days when I don't feel good - those days you have to dig deep and become very resilliant. In the early days I used to get quite upset, but I have been like this for quite a while...it doesn't get any better... I just don't beat myself up about it!! Be kind to yourself!! I always say just because you can't see anything wrong with you, it doesn't mean there isn't. Rest when you can and be honest with your husband as to how you feel, it will help him understand it a little better!! X
Hi jean. It was such a relief in a way when I read about the Lupus Fog. I retired almost 4 years ago from a very stressful job in the NHS. When I look back I was struggling with my memory then. It's a long story but it's taken me almost 3 years to persuade my GP to refer me to a Rheumatologist. I feel quite bitter about that. My husband now understands why I'm the way I am. I think he's quite relieved as well as he couldn't understand what was going on. Just got to wait now for the results of all my tests to come back. Thank you jean for replying to me.
You are very welcome. You clearly have a loving husband and that helps! Always bear in mind everybody who suffers with autoimmune diseases are slightly different. Don't assume your Rheumatologist knows how you feel, we are all different. Make the list before you go. I used to assume joint pains were from too much exercise when I was younger - I have arthristis in my joints.Take into account things like dry skin, dry hair etc. I understand from my Rheumatologist it is very difficult to diagnose, so let him be guided by how you feel. Good Luck and take care - hope your tests show something. X
Thanks again jean. A lot of my symptoms point to Lupus. I took your advice and started a diary noting down how I feel and how much pain I have etc. and yes I hope my tests do reveal something. My Rheumatoid Factor was raised last August but they aren't repeating that. So fingers crossed and you take care.
I have a number of autoimmune diseases including lupus, and I find that I do suffer with overheating, there is no pattern to it either. I tend to swing between very chilly to boiling hot, and my rash is very pronounced when I'm warm and bright red all over my face, neck & chest when I'm really hot. It's very annoying and uncomfortable, and my rheumatologist says there's nothing I can do to regulate it other than put on or remove clothing! You have my sympathy, I know how it feels x
Thank you kate. This overheating really took by surprise and like you I can be cold one minute and then without warning I am so hot it's unbearable. It's worse at night when I'm in bed and throwing the bed covers off. I don't have a rash on my face though just on my hands and wrists. The rash is painful so I was thinking about seeing my GP to request a suitable cream. Thanks again for your reply.
It is so infuriating, I know...I spend most nights throwing off the duvet and then wrapping myself in it! My rash also affects my hands, the rash itself doesn't bother me much other than it looks awful, but the hotness is a real bother. I hope your doctor can help you x
Thank you kate. Take care.
Hi just reading this thread now. I have the same thing too, it is worse when I'm trying to get off to sleep, but does happen sometimes through the day. I have a rash on my trunk, back and chest and I have been taking an antihistamine ( cetirizine) which does help the itching, so I don't scratch so much at night, but I need to take it twice a day to help. Drives me mad sometimes! I took photos and showed them to my consultant too, trouble is , I think sometimes they look at me as if I shouldn't be moaning about this as at least my kidneys and liver etc are still ok and I am not SERIOUSLY ill. Sometimes I think they don't realise the impact of every "little" thing, and how it builds up. I hate taking tablets, but it seems like my life now just revolves round making sure I take my meds, if I don't , I suffer! But yes, I too now think, oh well, get on with it, and if I can't do it, I stop. 20 years in NHS too, I can't see myself lasting though!
Hi guys,
I'm in the process of being diagnosed lupus or connective tissue and was just reading this thread. I also have trouble regulating my temperature. Thought it was linked with the menopause as I had a full hysterectomy at 40 and was forced into an early menopause which was quite violent at times. Nearly ten years on and I'm still patched up with HRT. I wonder if I'm barking up the wrong tree? The 'fog' is also a major worry as I'm a Teaching Assistant and have started struggling at work.
Ali
Hello. I like you started to confuse the overheating with the menopause, but it's different. It's difficult to describe but I can tell the difference. Regarding the Lupus Fog I do feel for you. Fortunately I'm retired but if I wasn't I think in view of the job I did I'd be really struggling. I saw the rheumatologist last week. The blood test for the antibody that relates to Lupus was basically scrapped by the laboratory. Said there was insufficient blood to perform the test. Nobody rang me from the clinic to ask me to go back and have it repeated and if I hadn't pushed it would have been ignored altogether.
When do you go back to see the rheumatologist? The sooner you start treatment the better for you really especially with you working.
Hi,
not for 3months as she said she wanted to tie it in with a referral for an op on my foot to clear out in inflammation. The waiting is the Pitts!
I know this might sound insane but I kind of like that I may have a diagnoses now. Don't get me wrong. I don't want Lupus! But, it makes sense now. I no longer feel like a hypochondriac.
Have you re done your bloods? Not to be told is not good is it?
Ali
I feel the same as you. I'll be so glad of a diagnosis because I've been feeling so unwell for a long time now and my joints are particularly painful.
I had cortisone injections in my hips last week. I can now lay on them, just. They were so painful I used to jump when anyone came and sat next to me incase they touched me. I wish I'd had one in my shoulder now too. Maybe next time !
I had one in my shoulder at my first appointment. It was like a miracle. I'd actually forgotten what it was like to be pain free, for 4 weeks anyway!
Hi - I read your comment about your hips with great interest. I have MCTD including lupus and I am having a greal deal of pain in my hips. I cannot sleep as I am in pain no matter where I lay. Could you tell me if the cortisone injections made a difference? I am not due to see my Rheumatologist until October, but if I thought it would help me I would go and see him sooner.
Thanks
Hi yes they do help. Though I was told today by a friend that you can only have up to three in each site. If that's true then I'm up to my limit on my right hip already. I've had two in my right shoulder and one in my left hip. It has taken a couple of days but I can now sleep for a couple of hours on my side before I awake and have to turn. Before the jabs my hips were so painful I could hardly touch them.
Hope that helps. 😌