Low-grade fever & POTS

[plaster89]

Hi everyone!

I have been diagnosed with POTS a couple of years ago and also have low-grade fevers (between 37.0-37.6C) all the time. This is a pretty uncommon symptom in POTS as far as I know. I have found out an article presenting a case of a POTS patient with the same issue and concluding the immune mechanism is at fault. Furthermore, and perhaps most importantly, this patient has been treatment by "steroid pulse therapy" (I have no idea what it is) and the symptoms abated. I have also underwent an immune disease almost a decade ago that has been cured but since then I developed POTS symptoms and low grade fever.

https://www.autonomicneuroscience.com/article/S1566-0702(07)00411-0/abstract

Do you have similar problems? What do you think?

 

[jklass44]

Unfortunately I am on the opposite end of the spectrum - My normal temp sits around 36C but I’ve had temperatures as low as 33.5C before. Have you and your doctor been able to rule anything out? Chronic infections or inflammation?

[StayAtHomeMom]

What do you mean an immune disease that was cured?

[plaster89]

Big thank you for your responses! I hope you are doing well!

4 hours ago, jklass44 said:

Have you and your doctor been able to rule anything out? Chronic infections or inflammation?

I have been tested for various viral, bacterial and immunological diseases. All came out negative. This "fever" is not an infectious fever per se, it is in hyperthermia mechanism, a set point stays elevated all the time (so no drugs work), it only goes down at night and goes up quickly after I got out of bed.

3 hours ago, StayAtHomeMom said:

What do you mean an immune disease that was cured?

Acute parapsoriasis. The treatment was successful but dysautonomia/POTS symptoms started since then. Also my lymphocytes are above normal.

https://en.wikipedia.org/wiki/Pityriasis_lichenoides_et_varioliformis_acuta

[bunny]

My normal is about 35.5C, and it's also where I feel the best.  

Have you had any thyroid tests performed?

[plaster89]

9 hours ago, bunny said:

Have you had any thyroid tests performed?

Yes, they came out normal. UCG was also normal. The only abnormal results are significantly elevated DHEA-S (I am 23 year old male) and relative lymphocytosis.

[StayAtHomeMom]

On 2/2/2019 at 2:08 AM, plaster89 said:

Big thank you for your responses! I hope you are doing well!

I have been tested for various viral, bacterial and immunological diseases. All came out negative. This "fever" is not an infectious fever per se, it is in hyperthermia mechanism, a set point stays elevated all the time (so no drugs work), it only goes down at night and goes up quickly after I got out of bed.

Acute parapsoriasis. The treatment was successful but dysautonomia/POTS symptoms started since then. Also my lymphocytes are above normal.

https://en.wikipedia.org/wiki/Pityriasis_lichenoides_et_varioliformis_acuta

This sounds like there is not cure. Only remission. If that is the case you may have an autoimmune disease which can cause your low grade fevers. And POTS. 

When they did your thyroid testing did they check T3 and T4 or just you TSH?

[p8d]

My autoimmune disease causes this.  Treating that has helped.  

[plaster89]

4 hours ago, StayAtHomeMom said:

This sounds like there is not cure. Only remission. If that is the case you have an autoimmune disease which can cause your low grade fevers. And POTS. 

When they did your thyroid testing did they check T3 and T4 or just you TSH?

They checked T3, T4 and TSH and all were in normal range. Once one of them was elevated but it was a one-off result and UCG confirmed no abnormalities.

[StayAtHomeMom]

Is it possible it could be a simple ANS malfunction?

[plaster89]

21 hours ago, StayAtHomeMom said:

Is it possible it could be a simple ANS malfunction?

It's possible. When I stand up straight for a few minutes, my feet and hands go purple. It is not happening when lying down. Doctors said this is a sign of autonomic dysfunction.

[StayAtHomeMom]

3 hours ago, plaster89 said:

It's possible. When I stand up straight for a few minutes, my feet and hands go purple. It is not happening when lying down. Doctors said this is a sign of autonomic dysfunction.

My son's skin does that. Mine not so much. It is kind of fascinating when so many people have different symptoms for the same thing. 

[plaster89]

On 2/5/2019 at 4:27 AM, StayAtHomeMom said:

My son's skin does that. Mine not so much. It is kind of fascinating when so many people have different symptoms for the same thing. 

I hope you are both doing reasonably well!

My guess is that I suffered an immune illness 9-10 years ago and that tipped my ANS out of balance. My age is typical of getting dysautonomia/POTS. I have blood pooling if I stand up for a few minutes and have orthostatic intolerance. I am doing much better after lying down for some time, and ofc there is no blood pooling when I lie down. I can say go out and do normal things for a one or two but I am gonna pay the price later so it is impossible for me to sustain normal activity. Currently I try to walk on fresh air for some time every day to improve my fitness, it is probably the best way I can improve my symptoms!

[StayAtHomeMom]

16 hours ago, plaster89 said:

I hope you are both doing reasonably well!

My guess is that I suffered an immune illness 9-10 years ago and that tipped my ANS out of balance. My age is typical of getting dysautonomia/POTS. I have blood pooling if I stand up for a few minutes and have orthostatic intolerance. I am doing much better after lying down for some time, and ofc there is no blood pooling when I lie down. I can say go out and do normal things for a one or two but I am gonna pay the price later so it is impossible for me to sustain normal activity. Currently I try to walk on fresh air for some time every day to improve my fitness, it is probably the best way I can improve my symptoms!

Last year I noticed my son's skin turn purple and "lacey" looking. Freaked me out so bad I brought him to the doctor. Doctor looked at him and the pictures and she said "it is normal, you have it too". She told me the name (can't remember right now) and told me to look it up. Thought it was funny when she compared me to " normal". I think it is odd that his skin will turn such a dark purple but lay him down and it disappears within minutes. It happens from his neck down. I have added it to his possible POTS symptoms and when he sees the specialist hopefully he can explain it. For me personally if I take a hot shower I will get out and my legs will be red. But not the "lacey" pattern. 

Doing something to "force" me to be active has helped. I work at least a few hours a day. On my days off I go to my friend's house. Even if it is just to sit and play cards for a few hours. I have noticed on those days I feel better then if I spend a day sitting on my couch and doing nothing. Neither of those things are physically demanding besides driving to where I have to go, so my fatigue is only slight. 

[plaster89]

5 hours ago, StayAtHomeMom said:

Last year I noticed my son's skin turn purple and "lacey" looking. Freaked me out so bad I brought him to the doctor. Doctor looked at him and the pictures and she said "it is normal, you have it too". She told me the name (can't remember right now) and told me to look it up. Thought it was funny when she compared me to " normal". I think it is odd that his skin will turn such a dark purple but lay him down and it disappears within minutes. It happens from his neck down. I have added it to his possible POTS symptoms and when he sees the specialist hopefully he can explain it. For me personally if I take a hot shower I will get out and my legs will be red. But not the "lacey" pattern. 

Doing something to "force" me to be active has helped. I work at least a few hours a day. On my days off I go to my friend's house. Even if it is just to sit and play cards for a few hours. I have noticed on those days I feel better then if I spend a day sitting on my couch and doing nothing. Neither of those things are physically demanding besides driving to where I have to go, so my fatigue is only slight. 

I guess it is called acrocyanosis.

It is very important to get exercise IMO. When I stay inactive, the symptoms came back with a vengeance. It is also important not to over-do things.

Do you or your son have dilated pupils?

[StayAtHomeMom]

15 hours ago, plaster89 said:

I guess it is called acrocyanosis.

It is very important to get exercise IMO. When I stay inactive, the symptoms came back with a vengeance. It is also important not to over-do things.

Do you or your son have dilated pupils?

No dilated pupils. Doctor called it something else. If I think of it I will have to put it on here. 

[Delta]

3 hours ago, StayAtHomeMom said:

No dilated pupils. Doctor called it something else. If I think of it I will have to put it on here. 

Livedo reticularis?  (The lacy pattern).  Edit:  I actually had this happen to me maybe 20 or so years ago.  I was out walking on a very hot day, wearing long jeans (which I usually don't wear in hot weather, but it was Casual Friday at work) and when I stopped at the girls' room after getting back from my lunchtime walk, my legs, at least above my knees, were, like, striped!  I was only diagnosed with POTS this past summer after four months of bizarre symptoms, but this makes me wonder if it might be related, even after all that time.  I now have very little tolerance to heat.  So much unknown to this stuff. 

[StayAtHomeMom]

On 2/8/2019 at 12:18 PM, Delta said:

Livedo reticularis?  (The lacy pattern).  Edit:  I actually had this happen to me maybe 20 or so years ago.  I was out walking on a very hot day, wearing long jeans (which I usually don't wear in hot weather, but it was Casual Friday at work) and when I stopped at the girls' room after getting back from my lunchtime walk, my legs, at least above my knees, were, like, striped!  I was only diagnosed with POTS this past summer after four months of bizarre symptoms, but this makes me wonder if it might be related, even after all that time.  I now have very little tolerance to heat.  So much unknown to this stuff. 

Yes!! That's what she called it. But honestly my son's is really scary looking because it gets that dark purple. My youngest son has it as well, but I noticed my hubby has it on his hands (same place as my youngest) and they don't have symptoms of POTS or anything. I get it mostly on my legs but I can get it on my arms too. 

I have looked back and there are things that really make me wonder if their are related. I don't think there is an answer. But have POTS has made me watch my boys a lot more carefully. Tomorrow (hopefully) my oldest will be getting checked out for POTS. He has too many symptoms of mine for it to just be coincidence. My specialist agreed to see him. The pediatric cardiologist I brought him to a few years ago was useless. Only one in my area. 

[SeekingTruth]

On 2/1/2019 at 12:20 PM, plaster89 said:

Hi everyone!

I have been diagnosed with POTS a couple of years ago and also have low-grade fevers (between 37.0-37.6C) all the time. This is a pretty uncommon symptom in POTS as far as I know. I have found out an article presenting a case of a POTS patient with the same issue and concluding the immune mechanism is at fault. Furthermore, and perhaps most importantly, this patient has been treatment by "steroid pulse therapy" (I have no idea what it is) and the symptoms abated. I have also underwent an immune disease almost a decade ago that has been cured but since then I developed POTS symptoms and low grade fever.

https://www.autonomicneuroscience.com/article/S1566-0702(07)00411-0/abstract

Do you have similar problems? What do you think?

 

I’m so happy to have found this group. It calms my fears seeing people discuss symptoms I also have.

I have POTS, recently diagnosed, and I have been having low grade fevers for at least the past 6 months. I’ve been to the doctor and tested for illnesses excessively and tests always come back negative. It’s especially terrifying in the age of COVID. I’m certain it’s been occurring for years but I only began regularly checking my temperature because of Covid fears.

I frequently have a low grade fever of 99-99.5F (37.5C) and ocassionally a bit higher. Rarely does it pass 100F. 

This always occurs with flu symptoms, and often a feeling of a sore throat, but not full blown like with a true infection. This includes leg pain and tingling, body aches, joint pain, night sweats and occasionally headache.  

Looking back I’ve had POTS symptoms most of my life, but they worsened considerably after a concussion (almost disability level) but quieted after a year of strict dieting and rest. 

Now I am just experiencing the flu like symptoms very frequently, along with chest pains and breathing issues occasionally. This is especially true after being subjected to high heat (only in low humidity temperatures though, likely because of issue of moisture leaving my body). I actually do quite well in humid hot environments.

Since the time you’ve posted this, have you found any further reasoning or support for the fevers? I see them anecdotally in many POTS patients yet can’t find much science on it.

People used to ridicule me for feeling ill constantly and I was on track in HS, which felt like I would have a heart attack but pushed through. So it’s reassuring to find this resource 💕 I’m not crazy. 

[Pistol]

@SeekingTruth - have you been evaluated for autoimmune disease? Your symptoms and low-grade temp COULD be related to that as well. 

BTW - welcome to this forum!!!! 

[JFB]

On 2/1/2019 at 1:20 PM, plaster89 said:

Hi everyone!

I have been diagnosed with POTS a couple of years ago and also have low-grade fevers (between 37.0-37.6C) all the time. This is a pretty uncommon symptom in POTS as far as I know. I have found out an article presenting a case of a POTS patient with the same issue and concluding the immune mechanism is at fault. Furthermore, and perhaps most importantly, this patient has been treatment by "steroid pulse therapy" (I have no idea what it is) and the symptoms abated. I have also underwent an immune disease almost a decade ago that has been cured but since then I developed POTS symptoms and low grade fever.

https://www.autonomicneuroscience.com/article/S1566-0702(07)00411-0/abstract

Do you have similar problems? What do you think?

 

Were you able to find the cause or successfully treat the fevers? I’ve been struggling with low grade fevers, joint pain, fatigue, etc. since last January (2020). After seeing numerous specialists, I was diagnosed with Lyme disease in November, as well as POTS in January. My doctor believes Lyme is what caused POTS for me.

Every day, I experience low-grade fevers typically in the 99.5-100.5 range. I’ve often joked that my thermostat is broken, but I’ve begun to wonder if my fevers were initially from Lyme and have persisted as a result of POTS. Like you, my temperature drops back to normal around bedtime and begins to rise as I start to go about my day. I have elevated DHEA-S, as well, so my adrenal function is currently being evaluated (PCOS has been ruled out for me). Interestingly, I also experience hot flashes with my fevers instead of chills. 
 

I appreciate any help or guidance you can offer!

[p8d]

@JFBLyme and autoimmune diseases are differential diagnoses. Have you been checked by a rheumatologist for any autoimmune diseases? I was misdiagnosed as having Lyme and was treated with a load of antibiotics that did nothing when in fact I had an autoimmune disease (or a few). Once I started treatment for the autoimmune disease I improved and the low grade fevers are a rare sign of a flare now. Just FYI you need a really good rheumatologist that won’t say you don’t have it based off the lab work alone which is what most do. After many years of suspecting I had autoimmune disease and many ANA tests the third one in 18 months after I developed full blown dysautonomia came up positive. Keep pushing for the testing if there’s no improvement with the Lyme treatment. 

[HOTLIKEFIRE]

On 2/1/2019 at 2:20 PM, plaster89 said:

Hi everyone!

I have been diagnosed with POTS a couple of years ago and also have low-grade fevers (between 37.0-37.6C) all the time. This is a pretty uncommon symptom in POTS as far as I know. I have found out an article presenting a case of a POTS patient with the same issue and concluding the immune mechanism is at fault. Furthermore, and perhaps most importantly, this patient has been treatment by "steroid pulse therapy" (I have no idea what it is) and the symptoms abated. I have also underwent an immune disease almost a decade ago that has been cured but since then I developed POTS symptoms and low grade fever.

https://www.autonomicneuroscience.com/article/S1566-0702(07)00411-0/abstract

Do you have similar problems? What do you think?

 

Sounds exactly like my symptoms although I havent been diagnosed yet, non stop fever , weak tired , nausea, etc, and some days disappears at bed time have no idea why and most of my days the degree of my symptoms are different. Would love to know any treatment options especially without diagnosis 

[Pistol]

@HOTLIKEFIRE - have you been checked for Viral infection like Lymes disease etc?

[JFB]

@p8dthank you so much for sharing your story! It’s crazy how long we have to keep advocating for ourselves before getting any real help. 
 

I went through pretty extensive autoimmune testing both with a rheumatologist here in Chicago (where I live), as well as a dual rheumatologist/infectious disease specialist at Cleveland Clinic that he referred me to to see if she could uncover anything. Most specialists were convinced I had an autoimmune disease after hearing my story and finding out that I’m also photosensitive & have Raynaud’s (onset of both of these was years before getting sick). Every time, my tests would come back clear and they were stumped.
 

My Lyme testing was done by IGeneX, which showed I had positive IgM and IgG bands. I’m really hoping this treatment works, but will definitely go back to the rheum if I don’t see any progress. I’m so desperate to feel like myself again.