Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Recommended Posts

I was out for 2 hours Monday because I had a doctor's appointment. And I am feeling tortured in recovering. It comes in waves. I have a small fever. I notice I get small fevers here and there. Sort of feels like the flu is coming on but never does. It's hard to sleep feeling so ill. Any idea on what this means? or am I just screwed up and nobody knows and it's part of the game? lol.

Share this post


Link to post
Share on other sites

Hi @Derek1987 - I used to get low temps of about 99.4 or so when my POTS was bad. Also feel like fevered when bad, with aches and hot eyes etc. My PCP never was able to figure this out, I am not sure if this is typical for POTS. I do know that low grade temps can be a sign of auto-immune conditions ( which can be a cause of POTS ) or of chronic inflammation or infection. In my case my urologist feels it COULD be because I have ICS, a chronic inflammatory condition of the bladder, which is caused by POTS in my case. 

Share this post


Link to post
Share on other sites
2 hours ago, Pistol said:

Hi @Derek1987 - I used to get low temps of about 99.4 or so when my POTS was bad. Also feel like fevered when bad, with aches and hot eyes etc. My PCP never was able to figure this out, I am not sure if this is typical for POTS. I do know that low grade temps can be a sign of auto-immune conditions ( which can be a cause of POTS ) or of chronic inflammation or infection. In my case my urologist feels it COULD be because I have ICS, a chronic inflammatory condition of the bladder, which is caused by POTS in my case. 

I felt feverish and achy and body pain. Then my wife just woke me up because the car tire was flat. So I inflated it. Now I'm sleep deprived and nauseated lol. But yeah I get random fevers. Low fevers, nothing bad but I can tell I have a fever, aches. I can't remember if being out of the house for awhile is triggering this or it's random. I've felt horrible since my doctor appointment.  Not just in the fever department. Feel like I'm recovering in the hospital somewhere. 

Share this post


Link to post
Share on other sites

I get low grade fevers when I am flaring from over doing it and sometimes just for fun (ha!).  I get the bad fatigue, malaise, aches, pain feel horrible.  I felt this way for 2+ years before my autoimmune disease was diagnosed which was after my pots diagnosis.  I still get this way if I overdo anything.  My Drs and I believe my dys is autoimmune and I saw my first improvement starting meds for that.  Keep asking for tests for autoimmune disease.  

Share this post


Link to post
Share on other sites
1 minute ago, p8d said:

I get low grade fevers when I am flaring from over doing it and sometimes just for fun (ha!).  I get the bad fatigue, malaise, aches, pain feel horrible.  I felt this way for 2+ years before my autoimmune disease was diagnosed which was after my pots diagnosis.  I still get this way if I overdo anything.  My Drs and I believe my dys is autoimmune and I saw my first improvement starting meds for that.  Keep asking for tests for autoimmune disease.  

I will bring up the autoimmune stuff to my specialist. What autoimmune disease were you diagnosed with if you don't mind me asking? 

Meds I currently take.

Carvedilol, alpha lipoic acid, Lisinopril hctz, midodrine, Xanax. I think that's it.

 

Share this post


Link to post
Share on other sites

When I was working M-F 8 hours, I would always wake up with a fever around 100.3 on Wednesdays. Every Wednesday. I would be achy and faint when I stood up, so I was starting to miss work every Wednesday. This went on for months. I eventually had to stop working and now that I don't have to push my body like that, the fevers are less. It is real. It is dysregulation of your autonomic nervous system. My doctor STILL doesn't know what to call mine exactly. 

Share this post


Link to post
Share on other sites

Undifferentiated Connective Tissue Disease (UCTD).  It’s a catch all diagnosis when some things come up positive but not enough of any one thing for a definitive diagnosis, at least that’s my understanding.  In my case my rheumatologist calls it pre-lupus but also said that at my age if it’s going to morph into something full blown it’s more likely RA.  I had more positive lupus antibodies though so I don’t know.  I have stabilized on plaquenil and SCIG but I still get flares.  I had been checked roughly every five years for thirty years for autoimmune disease and it wasn’t until 18 months post-pots diagnosis and the third ANA in that time that one came up positive.  

Share this post


Link to post
Share on other sites
2 hours ago, KiminOrlando said:

When I was working M-F 8 hours, I would always wake up with a fever around 100.3 on Wednesdays. Every Wednesday.

Kim - that is so weird!!! I never heard of anything like that!  Have they found anything auto-immune with you? 

Share this post


Link to post
Share on other sites

Yes. I have Mixed Connective Tissue Disease. At the time they didn't know that and my ANA was negative. I was later positive for lupus for 18 months, but now negative. I'm currently positive for RA for 10 years and being treated with methotrexate and an IV biologic. 

When my body got run down, it responded by running a fever. It still can happen, but now that I don't work, my body doesn't get put through that kind of stress anymore. 

Share this post


Link to post
Share on other sites

Wow @KiminOrlando how interesting.  My Dr sometimes refers to me having MCTD too, he uses UCTD and MTCD interchangeably with me.  I didn’t realize that you could test positive then negative for a disease and then have a different one.  Freaky.  Thanks for the info.  

Share this post


Link to post
Share on other sites

If anything my temps are below normal, especially in the morning. 96.8-97. Sometimes it goes up to 99 after dinner. I don't know why and it's only after dinner and not all the time, only once in awhile. 

Share this post


Link to post
Share on other sites

@JimL I can run a temperature of 96.8 too. I use my temperature as a barometer of how I am taking care of myself. If my temp is 98.6, I am well rested and as hydrated as possible. When things start to get off one way or the other, I take it as a sign to immediately change my ways. 

If I am legitimately sick with the flu or something, my temp will be 103 or something higher. When I am sick, I get scary high temps.

Share this post


Link to post
Share on other sites
22 hours ago, Derek1987 said:

I was out for 2 hours Monday because I had a doctor's appointment. And I am feeling tortured in recovering. It comes in waves. I have a small fever. I notice I get small fevers here and there. Sort of feels like the flu is coming on but never does. It's hard to sleep feeling so ill. Any idea on what this means? or am I just screwed up and nobody knows and it's part of the game? lol.

What is your actual temperature when feel off colour.   GP practice waiting rooms can be a nightmare if you are prone in picking up bugs easily.  Many years I dreaded my son getting sick after hours because when I took him to the after hour doctors I would end up very ill the next day with not my son's bug but something I picked up the the waiting room.

In my late teen's I got a severe bout of glandular fever (40.3 C/104.5F)  and early twenties I used to have high spikes in temps with sometimes feeling off 39C/102F but not always.  It was felt that the wide range of temperatures where due to a brain stem reset as my breathing was also affected.   In my 30's these temperature spikes ceased.  Not long after getting diagnosed with dysautonomia I by accident discovered that these non-infection related temps had restarted again 39C/102F

If achy maybe you picked up some bug some were.  Hope you feel better soon.

Share this post


Link to post
Share on other sites
6 minutes ago, Shepard1 said:

What is your actual temperature when feel off colour.   GP practice waiting rooms can be a nightmare if you are prone in picking up bugs easily.  Many years I dreaded my son getting sick after hours because when I took him to the after hour doctors I would end up very ill the next day with not my son's bug but something I picked up the the waiting room.

In my late teen's I got a severe bout of glandular fever (40.3 C/104.5F)  and early twenties I used to have high spikes in temps with sometimes feeling off 39C/102F but not always.  It was felt that the wide range of temperatures where due to a brain stem reset as my breathing was also affected.   In my 30's these temperature spikes ceased.  Not long after getting diagnosed with dysautonomia I by accident discovered that these non-infection related temps had restarted again 39C/102F

If achy maybe you picked up some bug some were.  Hope you feel better soon.

I'm feeling better at the moment. Thank you. I know I'm not getting sick. At first I thought man I'm coming down with something. Then it goes away. It's very low grade fever. I don't know the actual temp but I have always been hyper aware of when I have a fever. And it always comes with aches. So it's happened a few times in the past few months. I think my body just can't do much activity at all and sometimes gives me a fever for some weird reason. 

I'm still recovering from Mondays doctor appointment. I'm feeling a lot better but those first 2 days after were brutal. Not just with the fever and aches which actually wasn't that bad but a sickness I can't describe. A sickness I've never felt until my body completely broke down this past September. 

I was just sitting here talking to my wife how I miss my teen years. I was always working out and playing basketball. Full of energy and strength. Sigh.

Share this post


Link to post
Share on other sites

I am pleased to hear you are feeling better at the moment.   I would suggest using a digital thermometer, so you can diary your temperature and report back to the GP perhaps include heart rate too.   With objective information, may help your doctor in discerning causes of the fevers.    I had to do this with my temperature, BP and pulse as concerned that I would not be heard by medical staff. 

image.png

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...