View Full Version : Newbie just starting DX process

05-18-2012, 10:59 AM
Good afternoon...
I have not been diagnosised so I am not sure if I belong here....but I was hoping if someone could answer a question for me. Did anyone have a long term fever as a symptom prior to be dx?

Here is my rollercoaster ride...started back in Dec. with a bronchitis which dragged on for 7 weeks (figured out it must have been viral after 3 antibotics didnt work) after congestion was gone I still continued with the fever and fatigue. My Dr did a ton of bloodwork and it showed overactive thryoid.Spent next 3 months focusing on that when a specialist called my thryoid problems viral starting from the bronchitis....said time will heal and thyroid levels are normal and the fevers are not related. So this whole time I have had fevers and varying levels of fatigue. The last few weeks, not only has the fevers and fatigue been constant but I have had joint pain also. Been to my primary doctor who is very concerned because he cant come up with an answer. I have had 2 negative Ana. Because the joint pain is relatively new( though last yr I thought I had carpal tunnel and different dr said no...just overuse), he is referring me to a Rheum Dr. He is also wondering, like I, if this is beginning stages of lupus or something close.

I dont want to be stretching for results but my face every morning is red across my nose and cheeks. My chin has had a rash all week after being in the sun last weekend. I have had alot of hairloss...and I know those things can be related to something else but we just cant get to the bottom of the fevers.

So really, I am just wondering if anyone has had an experience with extended fevers?

Thank you so much!!


Marine wife
05-18-2012, 11:24 AM
First off, welcome! Their are a lot of people on here who haven't been diagnosed yet. I am new here too as well as to Lupus only dx'd in March. I have not had experience with extended fevers, however, it is a symptom of it. Maybe someone that has will chime in soon.

Make yourself at home and keep us posted!

05-18-2012, 12:50 PM
I am not a doctor, but my experience has been that a lot of us with these diseases have body temperature regulation issues.

Diagnosing this stuff can be a long road, but it sounds like you are doing all the right things...I hope it turns out to be something that is benign and easily managed for you! It'd be nice if it were something they could cut out or medicate away permanently - but even if it is Lupus and/or one of the other autoimmune diseases, there's a lot they can do to return your quality of life to you.

Be patient and persistent and take good care of yourself!

Lots of us find it useful to keep a "symptom journal" to take in to the doc - and many docs find the information very useful.

Let us know how things go!

05-18-2012, 05:56 PM
welcome to whl family yes alot of us suffer from temperature issues and there is a lot of autoimmune disorders. it can take sometime to get a diagnoses some members here are still trying to get diagnosed . i agree with sleepy in seattle i always reccomend you keep diary of symptoms and write down any questions you may have for doctors so when you see them you can ask the questions you need to know. take care of yourself i wish you the best . kim

05-19-2012, 12:04 PM
Hello and Welcome. As others have mentioned, fluctuating body temperature is one of the common symptoms of Lupus. Many of the signs/symptoms that you've described can also be attributed to Lupus. However, there are over 60 auto-immune diseases whose symptoms resemble one another.
I agree that keeping a diary/journal is an excellent idea and learning as much as you can about the criteria used to diagnose Lupus as well as its treatments and medications. In this way, during what can be a lengthy and frustrating diagnostic process, you will be armed with information that can help you understand what is going on and help you to make informed decisions with your doctors.

I am glad that you are here..again, welcome
Peace and Blessings

05-20-2012, 02:09 PM
Thank you for the welcome and the advise.

I will start keeping track of everything I am feeling and I have already started getting copies of all bloodwork when this started. My primary Doctor is great so hopefully we can get to the bottom of the fevers as they have not stopped since December and it would be nice to have a definite answer so I know what to expect.

Thanks again!!


05-20-2012, 08:55 PM
Hi Teresa,
Welcome to WHL. You've received good advice about keeping good records.
I don't know how old you are, but my problems have been complicated by being of the age to be menopausal - I'm 54.
When I complain about feeling hot part of the night, or having wildly swinging feeling of going from cold to hot and back again during the day, my docs just pass it off as "menopause symptoms" and ignore me. From what I've read here, even our male members and our teen-aged members have the same symptoms, so I think that my docs are wrong.
Good luck.

05-21-2012, 02:01 AM
Thanks Marla. I am 45. I believe in the beginning (about Feb, after viral bronchitis but still with fevers) I think my primary Dr checked that with bloodwork. Said I wasnt. It doesnt matter what time of day...fever is there. I have been to tons of appts and each time it is documented. I am very lucky because my primary Dr is very concerned and determine to get to the bottom of this. From what I have read...I am lucky in that aspect.

05-21-2012, 06:26 AM
Welcome Teresa,

I was recently diagnosed a little over a month ago. I also was sick with Bronchitis this past winter season and it was horrible (this was before I knew anything was wrong as well). Since I've been diagnosed I've been monitoring my temperature, which I obviously didn't do regularly before. So, I'm not sure if my temperature fluctuating is recent or if it has been happening for a while. But, my temperature tends to be normal all day and then later in the evening or before I go to bed I usually run a low grade fever. So, as others have pointed out I think that it's common that our temperature changes. I would just be cautious if your fever goes around or above 104, etc. As I stated previously my fever are low grade and nothing that I would seek medication attention for, but if you get higher fevers it could be a sign of an infection.

05-21-2012, 07:59 AM
Thank you for your reply. Since this whole mess started....I have not had a normal temp day so my Dr is very concerned. I never knew what my temp was before either, though if I did get an infection 99.2 used to be high for me and I would get a Z-pak and life would get better. I now know if I am 99.1-99.5 then I am tired but somewhat ok....the 99.6-100.5 is where I have been the last few weeks and fatigue and just on overall BLAH feeling is the norm. I think if I ever see 98.6 i will throw a big party!! So, yes I am monitoring to make sure I don't go above the "new High normal".

Thanks again-