ddschool Posted June 12, 2012 Report Share Posted June 12, 2012 I've had a low grade fever (99.4-100.5) & night sweats for over 6 months, and no docs can find what is wrong with me (no cancer, no infection, all labs normal). Tylenol & Ibuprofen don't seem to affect it at all.Any ideas, suggestions, etc? Thanks in advance! Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 12, 2012 Report Share Posted June 12, 2012 ohhhhhhhhhh man. i got this once. it lasted for 2 years!! i never figured out what it was. at the time i had a bladder infection. after it went away, the fever remained. i ended up being diagnosed with interstitial cystitis. this was years before i had POTS. i often wonder if all that back then was dysautonomia creeping up. body temp is included with autonomic regulation, so ... who knows? Quote Link to comment Share on other sites More sharing options...
Brye Posted June 12, 2012 Report Share Posted June 12, 2012 I had that problem, they checked everything and finally the infectious disease doctor diagnosed mono. I was so thankful that was all it was!Brye Quote Link to comment Share on other sites More sharing options...
RandomJelly Posted June 12, 2012 Report Share Posted June 12, 2012 I've been told that it is normal to have problems regulating your body temperature with POTS. I've dealt with these low grade fevers and sweats since childhood and there has never been another problem found that could possilby cause it...besides the POTS. If you get something figured out then please update us! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted June 12, 2012 Report Share Posted June 12, 2012 When I went through that phase or what I call pots layer and I was sent to an infectious disease doctor. He did an intense investigation and gave me the dx of chronic fatigue syndrome. I was to keep a notebook and if those fevers ever started going over 100 for any length of time. I was to come right back and we needed to look back into the issue. Only with the flu and I'm in the hospital I've been 103 and they took immediate action. Now my temp is never normal unless I'm getting sick. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 12, 2012 Report Share Posted June 12, 2012 why would fever be related to CFS? i don't get it. i dunno, i went thru the infectious disease doc at the time i had the fever, too. in fact, i went to 14 dr.'s in all! no one could really find the cause. i also had a bout of colitis from taking some antibiotics. they said that could have caused fever too. i went through a very bad phase during this time of my life. the fever felt so bad. i became depressed because no one took me seriously. a lot of my docs said 99 wasn't a fever. regarding mono, it was determined that i tested positive for EBV, but it was from some time in the past. there wasn't much to do about it. i did take some chinese herbs to try to clear it from my system. but, i ended up just getting on an antidepressant and trying to block out what was happening. eventually, my fever went away. it wasn't a sudden thing. i was practically suicidal over it. now, i WISH i could go back to the days when that was my worst health problem! HA. in a way, it is what prepared me for going thru POTS. i kept telling myeslf "you got over that, you can get over this." now, almost 2 years after POTS hit, my hope is diminishing.i don't know if i've helped you, photographerm, but i posted in this thread because i do remember how awful life was when i had the fever, and i empathize with you greatly! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted June 12, 2012 Report Share Posted June 12, 2012 I feel for all of us...hang in there everyone...Life is very hard, but we all have each other to turn to for advice and help. I know many of us have had to run to doctor to doctor who look at us and just don't get it. I've had my share of doctors who were judgmental, had big egos and half listened to me. Then I was blessed with wonderful caretakers. Learned to speak up for myself.Here's some info on chronic fatigue syndrome: I'm not saying you have it, but it was my story...I hope you find an understanding doctor to help you. Keep a notebook of your daily temps and times of them. I also would keep notes of any other symptoms. We have to be our best advocates. My notebook always goes with me to every visit to the doctor and I cross off each question to make sure I ask everything.http://o5.com/4-frequently-asked-questions-about-chronic-fatigue-syndrome/Have a good night all ~ Quote Link to comment Share on other sites More sharing options...
jrlehnardt Posted June 13, 2012 Report Share Posted June 13, 2012 wow, my daughter had exactly this when she was 4 and 5. she had a low grade fever, slept all the time, her legs had pains in them, her leg muscles were weak, her lymph nodes were swollen all over her body, and she was very pale, and sometimes would break out with a petechia type rash. and on one occasion lost control of her bowels for days. she saw so many specialists and was hospitalized and had so many tests done and all they could find was that at some point in the past she had mono, ok how did my 4 year old get mono, and i didnt notice?, also her sedrates esr, was always high. the doctors never figured it out and her symptoms kind of just went away. well one of my other daughters has started habing the fevers and swollen lymph nodes, she is 7 now. but i do wonder if it is somehow pots related or related to someting autoimmune that i have that may be my cause of pots that i have given them? i do have eds and all 5 of my kids have it as well. but i may also have something with mast cells, so i wo der if this is what it is. i am going to start achange in our food habits. i havent decided if i am going to do gluten free or low histamine or both, but that really limits what foods we can eat. Quote Link to comment Share on other sites More sharing options...
ddschool Posted June 14, 2012 Author Report Share Posted June 14, 2012 Thank you all for your responses. I'm so glad I'm not alone! I felt like I was the only one going to all of these docs & none of them taking me seriously, or b/c they don't know what to do w/ me, they pawn me off on another doc-now I know it's not just me! I'm a nurse, and for the life of me, I can not understand why these docs will let someone go around w/ a fever for this long. I have showed my frustration at them, and they still refuse to try any antibiotics or antivirals. I've worked in hospitals, and hosp doc would not let this fly-they would get to the bottom of it, or at least try to treat it. I don't know why b/c I'm outpatient it's ok. Thanks again everyone for listening! Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted June 15, 2012 Report Share Posted June 15, 2012 This has been discussed extensively in the cfs community but since I don't have it I didn't follow thosethreads. Pheonix rising or prohealth boards will have these threads tho. I have cfs but my temp has been low since getting sick in 1990. Fwiw, imho, a diagnosis of cfs in many cases just means your doctor didn't look for root causes of your symptoms.Imho, The same goes for pots syndrome where symptoms are not directly related to orthostasis.Many of us have food intolerances, parasites, bad bacteria, glucose problems and nutritional and hormone deficiencies. Just readsome of the threads here on those topics. A functional doctor will look for root causes as opposed to using drugs as bandaids. In case youcan't afford to see this kind of doctor, dr terry wahls has some great info on the web. Dr myhill, drVikki peterson, dr mark hyman, etc are great reads too. Tc .. D Quote Link to comment Share on other sites More sharing options...
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