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Do you get a fever with your ME?

Jackdaw

Senior Member
Messages
127
Location
UK
This is something I have been meaning to ask for a while.

I have had ME for nearly 15 years and always had the classic can’t raise a fever even when sick, lowish body temp.

This year I was relapsing, then woke up, couldn’t walk, unhappy bowels and fever.

The bowels settled but the fever hasn’t gone. It’s been 10 months plus.

It’s constant and ranges between 37.5c and 38.3c. Sometimes it goes a little lower but only briefly.

Does anyone have anything like this? I’d be interested to hear people’s experience with fever. I am getting mixed advice on how normal this is.

I have had lots of investigations and the next one is a PET scan. I am very severe and don’t know if this is my ME. I do know it is exhausting though.

I rock the flannel on the head look. :redface:
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I have had ME for nearly 15 years and always had the classic can’t raise a fever even when sick, lowish body temp.

I don't know what's happening with you but I have the same symptoms as you had before your relapse. I haven't had a fever in many years.

This year I was relapsing, then woke up, couldn’t walk, unhappy bowels and fever.

It sounds like the fever is related to or caused by your ME. Hopefully the PET scan will find something that will give you some answers.

I have read many posts here of people that get fevers fairly regularly and those, like myself, that haven't had one for years. Both, seem to be related to or caused by ME/CFS.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
I think I had a fever when my ME first appeared, 17 years ago. I don't think I've had a real fever since. Like Belbyr, my oral temp is 36.65 C when feeling well, and rises a few tenths when my ME symptoms are worse, but not by more than 1C.

Have your thyroid hormone levels been checked recently? Can a person have fever without elevated T3?
 

Jackdaw

Senior Member
Messages
127
Location
UK
Thyroid checked.

It’s constant really and just varies in severity. It is so draining which is what bothers me. I don’t know how to bring it down and apart from not wanting to take paracetamol 24/7 I measured it’s effect and it brought it down by 0.1c.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I've had a lower-than-98.6 (37C) body temperature all of my life, and most of my life apart from illnesses here and there plus the last 9-10 months, I have been really fit and well generally.

Flus/feverish colds etc gave me fevers in the past. So did shingles (twice) so did a couple of other infections I got. But never usually above 101 degrees.

However....when I caught that "flu" or whatever the heck it was that set all this stuff in motion, back in early Spring this year, I got no fever, not even a trace of one. I worked hard to try to raise my body temperature wondering if that was the missing link, but it wouldn't go up, even in the summer heatwave!
I actually wanted a fever, but none arrived.
(Oh and Thyroid checked and OK.)

But back to you, @Jackdaw I don't honestly know. This might be a part of the ME, or it might be something else. It's sensible to get the usual checks they might run for low-grade fever if you can make it to doctor's?
 
Messages
64
yes i get fever with my cfs. but nothing consistant. they come and go. when they come they usually stay. but not daily. then when they go, im in remission from them, for a long time. they just came back last month, after being free of them for about 2 yrs. they are blaming it on my gamma globulin infusions, which i think it is. as they are now 102 degrees, around my infusion times. with the cfs they were low grade. so they took me off infusions for 6 wks. to see if the fevers go away. my infusions are for my immune deficiency not the cfs.

joanie
 

i-lava-u

Senior Member
Messages
691
Location
Utah, USA
My ME/CFS started with a bad case of mono and I have had frequent fevers ever since (since 1995). Sometimes they come and go a few times a day and other times I get them 2-3 times a week but I have never not had them.

Sometimes when I feel feverish and take my temperature it runs low instead of high.

I used to think the fevers were from CEBV but I take high dose antivirals for CEBV (famvir) and still get frequent fevers, so now I am suspect that it is just part of the ME/CFS. :confused:

My ME/CFS has never stayed stable or gotten better. It has slowly and continually gotten worse over the years. 2011 was the start of a significant and faster pace of worsening after receiving my first and last flu vaccination.

What I find interesting is that I used to get every cold/germ possible. If my kids had a cold that lasted a few days, it would last me 2-3 weeks. Since the big/fast decline in 2011, I have not had a single cold since. But, the fevers have never left.

This disease is so perplexing!
 
Messages
11
When I first got ill 6 years ago after a bad bout of mono I had a low grade fever for a long time. First 6 months or so there was always some fever, then it started to slowly subside - first I had some fever-free time in the mornings, then that time became longer and longer, until I only had fever in the evenings for a few hours. And then it went away completely about 1,5 years into the illness. That was also the time I wouldnt catch a single normal virus, even when everyone around me was down with it. Last year was the first time in 6 years I actually had a high fever. It was from a nasty flu and I also had the same other symptoms as everyone else (yay!), though it took me a lot longer to recover.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
When I am having a crash I get a fever. I have episodes of low grade fever that is coupled with IBS and pure exhaustion, insomnia and pain. I sweat like crazy with these low grade temps.

On a day that I am not in crushing fatigue my temp runs a little low.

I am sensitive to both hot and cold and am only comfortable in ambient temperature of 70 to 73 degrees.

You could do a poll on this it is an interesting topic. We are all so different!