momofsara Posted May 4, 2008 Report Share Posted May 4, 2008 Hello group--I am the Mother of a 28 y/o daughter with severe(as diagnosed by docs) dysautonomia. I'm sure most of you are familiar with the frustration of seeing doctors who either dont believe the condition exists or they think the patient is "faking" to get attention. Any way, our latest problem consists of having a prolonged siege of low-grade temps(100.0-101.0) This proves especially upsetting as docs tend to associate fever with infection and if they cant find any infection, then the fever gets dismissed because --"there is obviously nothing wrong" The problem comes when we have to go to the ER for fluids, etc. Her primary care doc is better about such things, but we dont always get to see him at the ER. GRRRRRR. Just had to vent, I'm so happy to have a place to come where people understand . Thanks for listening--- Quote Link to comment Share on other sites More sharing options...
flop Posted May 4, 2008 Report Share Posted May 4, 2008 Hi,welcome to DINET - feel free to vent, there is almost always someone on the board who knows exactly what you are going through. I still don't understand why so many doctors think we fake dysautonomia symptoms, why would anyone want to feel like this??I hope someone works out the cause for Sara's fever or manages to come up with a plan so it doesn't make her feel so sick. Has she tried taking paracetamol / acetaminophen to reduce the temperature? And I guess you've already sussed that she will need extra fluids to make up for being too warm.Flop Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 5, 2008 Report Share Posted May 5, 2008 Hi,Welcome aboard.You have my deepest sympathy. I have more than 30 years of experience with stupid doctors thinking that I was faking fainting or doing it for attention. Now that I have medical proof that I have a physical disorder I found good doctors that care about me. Let me tell you that they are worth more than diamonds! Quote Link to comment Share on other sites More sharing options...
Maxine Posted May 5, 2008 Report Share Posted May 5, 2008 Welcome!A lot of us went through this with doctors. It's insane that some of the doctors think we would want to get attention this way. Let them go one day with some of these symptoms, or one of their family members-------------It will scare the you know what out of them--- Then you will suddenly see more awareness of this of course. If I would wish this on anyone, it would be one of the dismissive, mean, and arrogant docs. Just for a short period though, as I wouldn't want anyone to deal with this long term, not even those doctors.It's great to see that you support your daughter---- . I see some young people who don't have family support, or their family doesn't understand, and never tries to. It's so important that anyone with this has a good support system, especially with so little knowledge of this in the medical profession.You have found a good place to get support and understanding-- Take Care,Maxine :0) Quote Link to comment Share on other sites More sharing options...
mandasmom Posted May 5, 2008 Report Share Posted May 5, 2008 Welcome! I completely understand the frustration with doctors! Quote Link to comment Share on other sites More sharing options...
gertie Posted May 5, 2008 Report Share Posted May 5, 2008 I'm sorry your daughter is having to go thru this. I've had 40 years of dr's not believing anything I told them. When a dr finally looked at my list of symptoms & illness & said "I know what's wrong with you", I almost cried. I was stunned, it took me a minute b/4 I could respond. I know this is a silly question after all you've been thru but, is it possible that she has a minor sinus inf or allergy? If I get the slightest sinus or throat inf or even an allergy I will run a 102? temp for days. If I go to the dr they usually can't find anything. Best of luck! Quote Link to comment Share on other sites More sharing options...
maryfw Posted May 5, 2008 Report Share Posted May 5, 2008 Welcome. This is a great place to bounce ideas around and talk with people who understand. Hope the best for the both of you. mary Quote Link to comment Share on other sites More sharing options...
jump Posted May 6, 2008 Report Share Posted May 6, 2008 Welcome! I am sorry you and your daughter have to cope with this. But at least you are coping together. I also run a low-grade fever from time to time for no "reason" (ie no infection). I don't know what causes it, but I do know that for me the only thing that makes it go away is lots of rest and treating myself as if I really did have an infection (lots of sleep and fluids, stay home from work if possible, eat healthily, etc). I always get them when I'm run down, not getting enough sleep, working too much, not taking the time to prepare healthy meals, etc. Also, I suggest you have your daughter take her temp on a day when she's feeling well. Lots of people with POTS have a low "healthy" body temp (mine is 96.8 - 97.2) which can mean a "low-grade" temp like 100 or 101 might feel more tiring than it would to someone who's body temp is the average 98.6. Hope your daughter has better luck with doctors. She's lucky to have you.jump Quote Link to comment Share on other sites More sharing options...
lalalisa Posted May 6, 2008 Report Share Posted May 6, 2008 Hello,I wanted to also say hi and welcome!! We're glad you're here and really hope that are encouraged and find lots of helpful information as well. Take care, Lisa Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 6, 2008 Report Share Posted May 6, 2008 Welcome! I'm glad you found us. I hope you find lots of help, information, and support here. Your daughter is welcome to join us as well. Rachel Quote Link to comment Share on other sites More sharing options...
momofsara Posted May 6, 2008 Author Report Share Posted May 6, 2008 Welcome! I am sorry you and your daughter have to cope with this. But at least you are coping together. I also run a low-grade fever from time to time for no "reason" (ie no infection). I don't know what causes it, but I do know that for me the only thing that makes it go away is lots of rest and treating myself as if I really did have an infection (lots of sleep and fluids, stay home from work if possible, eat healthily, etc). I always get them when I'm run down, not getting enough sleep, working too much, not taking the time to prepare healthy meals, etc. Also, I suggest you have your daughter take her temp on a day when she's feeling well. Lots of people with POTS have a low "healthy" body temp (mine is 96.8 - 97.2) which can mean a "low-grade" temp like 100 or 101 might feel more tiring than it would to someone who's body temp is the average 98.6. Hope your daughter has better luck with doctors. She's lucky to have you.jumpThanks for your input. In fact she does have a low normal temp. Usually around 97, and you are exactly right when she has 100 temp she feels as if she is really sick. Much like I would if I had 102. Its very frustrating, but we usually do treat the fever as you were saying, lots of fluids, Tylenol or Advil to help bring it down, and rest. We are making this journey together and I will be there for her as long as God lets me have the health to do so. As with so many others here, she has numerous other maladies. Fibromyalgia, interstitial cystitis, chronic pain(as a result of surgery for Chiari Malformation), hiatal hernia, gastric reflux,panic attacks, depression, mood swings, and the list goes on and on, you get the picture. But we persevere. Thanks again for your post. Quote Link to comment Share on other sites More sharing options...
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