Normal Temperature???

[Jonchri]

A couple years ago, probably around when I was diagnosed, I developed a higher temp. All my life my temp has been 97.8c. Now it ranges from 99.8 to 101.5. Does anyone know if this is a common affect of SS?

[Carolina]

Hi Jonchri,

Many of us have temperature dysregulation (too hot, too cold, sensitive to ambient temperature).  This is one of the conditions of Immune Disorder(s).

And one of the most common is a 'normal body temperature' that is higher than normal, or lower than normal.

My body temperature is usually around 97.5.  At 98.6 I'm running a low-grade fever.

Just know what your system is, normally (ha!), and use that to judge your results.

Hugs,  Elaine

[Jonchri]

Thanks Elaine  ! That was one of the most irritating questions I hadn't gotten an answer to. Now I can relax a bit about it. Hugs!

[Carolina]

Hi again Jonchri,

There is a reason for the temperature dysregulation, related to the Immune System.  It is a sort of Autonomic Disorder.   I have heard the explanation, and read it, but I'm not medical so it doesn't stick in my mind.   Here is an explanation related to mitochondrial disease, but Dysautonomia is the same across disorders.

http://www.mitoaction.org/blog/dysautonomia-body-temperature

One common and confusing result of dysautonomia for many people is related to body temperature. It is not uncommon for mitochondrial disease patients to have some abnormal regulation of body temperature, resulting in either a lower or higher baseline body temperature (commonly 96-97 degreees) or a marked inability to tolerate heat or cold. In this way, abnormal sweating is another characteristic of dysautonomia. Sweating as an autonomic nervous system function occurs in order to cool the body (sweating independent of environmental temperature is related to the sympathetic nervous system, as a response to anxiety, fear, stress, etc.). The absence of sweating occurs in some individuals, making them very sensitive to over-heating in warmer climates. Conversely, some people may sweat excessively regardless of the environmental temperature. Hydration is useful in both instances. Keeping the body well-hydrated with plenty of liquids is a very important preventive measure for the majority of people with mitochondrial disease. Recognizing that probability of heat and cold intolerance and the potential consequences (often fatigue or pain) makes it important for patients and families to use good planning when going outdoors, getting into a hot car, swimming or bathing, etc.

Some people are troubled by changes in blood pressure and heart rate. Dizziness, lightheadedness, fainting, changes in heart rate, nausea and anxiety are a few of the most common and troublesome complaints. Dr. Holtzman emphasizes the importance of identifying how these symptoms could be related to actual anxiety as opposed to dysautonomia, as anxiety symptoms are more easily treated. Sometimes changes in position can also be difficult, such as sitting up from lying down. This is also called postural orthostatic hypotension (POTS) and affects many people with and without mitochondrial disease (learn more at POTS place).

"I just thought I was crazy for feeling this way," said one MitoAction member on the call. Be assured, you are not crazy, and the symptoms associated with dysautonomia can be very confusing and really challenging as they affect how one feels and even how well one can function! There are patients whose primary symptoms of their underlying mitochondrial disorder are related to autonomic nervous system irregularities. Still, many people wonder when to react and seek medical help. First, know the patient's baseline. For example, if a person's baseline temperature is around 97 degrees, a temp of 100 degrees is more concerning than in a person with a normal baseline temperature of 98.6 degrees Farenheit. The same idea applies to heart rate, blood pressure, and daily function. Second, always respond by consulting a doctor the first time that any unusual symptoms occur. In addition, rest and good fluid intake are two keys to managing mitochondrial disease, as well as autonomic nervous system dysfunction.

- See more at: http://www.mitoaction.org/blog/dysautonomia-body-temperature#sthash.kAStb2wM.dpuf

The key is to point out the deviation from normal to those who are treating you.  There isn't anything to 'do' about it.

Regards,  Elaine

[Nancy1950]

I am so glad to read this information about temperature and body regulation problems. I always joke that I have a comfort range of 1 degree! I've always blamed my thyroid problems, but the tests always come back in normal range (I have Hashimoto's and am on levothyroxin). Trying to discuss these issues with physicians is always difficult because they seem to assume I'm complaining about small things, and/or want to prescribe many drugs, and I'm not ready for them. For now, Restasis is enough. Anybody else have night sweats?

[Carolina]

Nancy, Physicians find this topic difficult because;

1.   Sometimes they just don't know much about it.

2.   If they know, the also know there is no cure or treatment.

3.   And finally, as a general rule it isn't dangerous for you.  Although it can be part of other difficulties yet to come.

We are here for everything, and we really do 'sweat the small stuff' because the worst thing is realizing something is going on but being completely 'in the dark' with no one to answer or care.

We care.

Hugs,  Elaine

[Nancy1950]

Thank you Elaine! Good advice, and thanks for caring - having Sjogren's is frustrating and it's good to read about the experiences of others who suffer from these sometimes-vague symptoms.

[SJSman]

Hello,

I have temperature disregulation too, as part of my SJogren's Disease.  I also have a very major inability to tolerate either extreme heat, or extreme cold.

I just wanted to add that elevated temperature could also be a medication side effect, or a side effect of some combination of medicines.

You could also have some mild fever caused by something other than Sjogren's.  It could be mitochodrial as Caroline suggests, or could be something else.

We all have to pick our battles with our doctors. If you going to argue that you have frequent low grade fevers to your doctor, as I have done with my Rheumatologist, he requires that I make a temperature log sheet where I have recorded my temperature numerous times over a few weeks or a month.  Without the data, he simply won't discuss it at all.