I just wondered if anybody else never really runs a temperature even when they are ill?
I have infections and I even had sepsis but my temperature never really runs high which can delay diagnosis as Drs seem to rely on you having a temperature to establish you are ill.
I honestly think it's a regulating issue as I am always clammy sweaty on a daily basis but never have a temperature and it only raised slightly even though I was gravely ill.
Just wondering if anybody else has ever come across this and if so is it a lupus thing?
Thanks
Nicola
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Nickyt79
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That just about describes me as well. I am learning that if I feel clammy that is probably my version of feverishness.
If I take vitamin c in high doses at this time it seems to help.
Hi I am the same. When I am feeling very unwell (flu like symptoms?) I feel roasting hot, like I am burning up yet my temperature is always fine. My gp relies on taking your temperature so everything must be normal.
Have you ever checked to see what YOUR normal temperature runs at?
"Normal body temperature varies by person, age, activity, and time of day. The average normal body temperature is generally accepted as 98.6°F (37°C). Some studies have shown that the "normal" body temperature can have a wide range, from 97°F (36.1°C) to 99°F (37.2°C)."
If YOUR normal temp is at the low end of the range it can be raised but still "in normal range".
It also doesn't help that they use these "in the ear" things - my husband's department did a study on them before they were widely introduced in the NHS and reported that they were very unreliable. But of course - that was ignored!!!
Yes the tympanic (ear) thermometers altho measure the core temperature aren't used correctly I've had drs put them in my ear and basically all they have done is measure the temp of the skin of my ear!! They haven't directed ithe probe in towards my tympanic membrane (in the ear basically!) X
Thanks for posting this. I'm often hot and clammy too but never have a temperature over 37 (or only a point or two) and if I take it when I'm ok it's often nearer to 36. I was beginning to think it was my thermometer, but having read PMRpro's post I think that's just my normal temp. I have a normal thermometer and one the in the ear things (which I got as I thought it would be easier with the kids). It's rubbish and gives different readings from different ears. I thinks if they're a bit waxy it doesn't work properly!! So I think the study shouldn't have been ignored, but what can you do?!
I have bought a few different thermometers as I thought they weren't accurate. I feel very feverish a lot but never raised temperature. Maybe just another lupus thing 🙄
Like I say I was so poorly last year after contracting sepsis and due to my temperature only reaching 37.8 at it's highest they nearly let me die as I didn't tick all the boxes for sepsis.
I am literally on a daily basis so clammy and flushed and just cannot cool down once I get warm or regulate my temperature.....my family thinks im crazy and I'm sure Drs do too. I'm sure it's got to be a hypathalmus issue or something.
No when I had sepsis my temp 43 /44 not nice what I can remember of it never new you could get infections and no temp do you get night sweats for no apparent reason...?
I don't really get night sweats as such but I am hot all the time....like I have a sheet and window open yet my husband has double quilt to keep warm.
Yes the sepsis had really set in by time they actually realised because my temp just didn't spike....I've recently had pylonephritis too and no temperature.
I have had that problem, as well. Before I had lupus, I had normal fevers and normal recovery time from cold and flus. Now I only very rarely get fevers (even accounting for my low normal body temperature of 97.4) and it takes me forever to recover from any health problem. I do emphasize to health care providers that I don't get fevers, and my usual team is very good about taking that seriously. That is remarkable given most people in health care and outside it consider fever the feature that makes a health problem "real".
Thank you Paloma25 yes the sepsis was terrible, I did literally think I would die. But that's behind me now...It's just very strange this temperature business as when I asked the rheumatologist he said that it's not s symptom of lupus and that fevers are usually seen with Lupus flares. It's like you say if you don't have a temperature then you are not really that ill.
Yes I have the same issue. I can be in pain an agony, shivers, chills, headache all the symptoms. I have even had several bouts of pneumonia, yet my temperature rarely rises above 36.5. It drives me crazy because it makes people doubt my illness even more.
Something else with me. When I am really cold I may be in bed with my partner and he says I feel warm when I am freezing. I will be there in double or triple layers to try to warm up though.
Yes I rarely get any kind of temperature and when I say that to docs they just ridicule me and also delay diagnosis of infections. I've had a normal temperature and a really bad bacterial chest infection.
Hi Nicky, research for my book confirmed that low level feverishness is a hallmark of lupus. It can be accompanied by clamminess, full blown sweats
and shivering and shaking. When I am having a bad day and night with pain and nausea I can have to change clothes several times ..... Urg! Shaking is also a sign that I need to rest. With very best regards, Lily
I try to explain this to my rheumatologist yesterday and that my Ent specialist is sure that my constant sinus issues are caused by inflammation from lupus and he just said to me that neither of these symptoms are lupus related.....I could have cried when I came out because it's like banging my head against a brick wall
Hi yes the Drs can tell you are ok but you are not. I too have problems with my temperature and yet they still say I am fine. It must be a lupus thing as I was once told I can’t control my body temperature at hospital yet Drs said my temperature was fine. Always question what you are told by your drs as they don’t seem to understand the strange way that lupus presents itself and most if them have no clue how it can effect you nor would they recognise most of the strange symptoms that we can present with. See if you can get better information from your hospital and go online to do some research. I hope you feel much better soon.
I am so sorry that you have experienced a "brick wall" and this degree of frustration. Unfortunately, it is common and one if the main reasons I have written the book is to provide a manual for all the basic signs and symptoms of this poorly misunderstood illness. I can only reiterate that feverishness is identified as a lupus mainstream symptom and I explore the whole story behind it. Just know that it is 'not you' here. With a hug, Lily
They are just polishing the cover and design so it should be published in approximately four weeks but there have been delays by the publisher since I submitted the final draft for editing in October. However, fingers crossed! I will make a general post when it is available and where because this forum has been very helpful to me and it contains direct quotes from some members. I will also let you know individually. Hope you are having a good day today, with very best regards, Lily
Yes, and from what I’ve been told it’s very common in Lupus sans those with organ failure. I know if I am running a temp something very serious is wrong but even then I haven’t gone above 100 in 10 years. Have had three major infections including a superbug. Also, this tends to be associated with low WBC. We can have a bad infection but our WBC counts are still in range. I just know my normals and inform treating docs. I usually have to catch it myself which is frustrating sometimes.
Me too exactly the same (I have complex longstanding autoimmune issues but not diagnosed with Lupus). I’ve always had great trouble with temperature control apparently from a baby when I used to worry my mum by turning blue for no apparent reason. My normal temp is just above 36 and anywhere near 37 is an indicator of fever for me. But docs just don’t listen. Ever. I was in hospital on IV antibiotics for persistent cellulitis and I had to fight daily to be allowed to continue the course - in spite of obvious and worsening cellulitis because I “didn’t have a raised temp” . Ironically the day a different doc saw me and discharged me on the spot because I “didn’t need antibiotics of any kind” the nurse questioned my discharge observations telling me that their protocol suggested I may have hypothermia because my temp was down to 36.1! I explained again that this was normal for me and she said she’d never seen a normal temp so low! I also have had times of literally shaking with cold indoors wearing coat, hat, gloves, under piles of blankets with several hot water bottles when temp was about 80 degrees outside but no corresponding temp drop and even when quite poorly my temp rarely goes high enough to concern the medics. I find the thought of being as ill as some of you have been but not to have it recognised because our temps don’t reflect what’s happening really scary.
Yes i did. The gp takes my temperature too and it's always normal. Is that a lupus thing?
No me neither. My temperature is constantly changing. Are you the same?
My normal temperature is 97.4 degrees Fahrenheit instead of 98.6. This always creates skepticism when I go to the doctor. I will run low grade fevers with night sweats and still only be 98.6. Take your temperature for a number of days to establish what your normal temperature is on good days.
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