Unexplained chronic fevers

PS - The extreme fatigue is so bad on some days (more often than I would like) that it's too difficult to stand and properly brush my teeth so I just rinse the brush, and walk back to bed, where I do a semi-job; I barely have the strength to feed the cats; and making a meal means getting out the peanut butter, putting it on a piece of bread, folding it together, and going back to bed to rest and eat my pb and bread. It's really quite gross. I am not exaggerating or looking for sympathy, I'm just saying it is way beyond the fibro fatigue. Once night, my husband asked me give him my glass of water for him to refill, and as I tried to hand it to him, he said, "Look at you, you poor thing...can barely lift your glass."  Today, I'm obviously better because I can actually type, but not well enough to tidy or get out of the house...everyday is unpredictable.  Does anyone get grossly fatigued like this on a bad day???

Hi, I thought my lupus thought I had lupus & fibro, but now I'm not so sure if he thinks I have lupus. But anyway, for at least 6 weeks now, i've had low grade fever every day ranging in the 99. (point something) to 100. (point somethings). At least 6 weeks that I know of. I had gone to a walk in medical center for severe nerve pain from what I assumed was another disc herniation and my temp was 99.2. The week before i noticed i was feelign awfully hot lately (which is very unusual for me being that I'm always freezing, even in summer). So the week before I took my temp and it was 99.1. My entire body feels very hot, my face & neck are always hot & red, and Im actually sweating here & there which ive not done in several years. It doesnt come & go, it's constant. Welll my herniation resolved on it's own over 2-3 weeks and I stll have the fever. Mind you in early July I started having joints pains again in my ankles, hips, spine, neck, one shoulder and both hands. So I saw my rheumy early last week especially b/c my hands are killing me & its hard at work. He looked at them & said he saw no inflammation. I also mentioned this low grade fever, but he just went "mhmm, mhmmm".  But he sent me to have lab tests again (ANA, RF, cbc, esr, lyme titer, and some others that I dont know or couldnt read). The lab told me it would take 24-48 hrs for my doc to get the results (which would have been mid week due to labor day). Well, the doc office hasnt called me at all (so maybe nothing showed up on the tests). But I am still having this fever which is driving me nuts because I am not used to feelign hot all the time. My normal temps the past 4 yrs or so have been in the 97's, sometimes high 96's. I still don't have any answer to mine or even why I have all this joint pain. But I just wanted to respond to your post because I have something a bit similar to you.

Carrie,
I just wanted to say that I had low grade fevers for a year before my lupus diagnosis. I still have them. They come in spurts of two to three or four weeks and then I have a week or so off if I am lucky. This last time I had fever (a week or so ago) they did blood work to look for inflammation and everything, including my ANA which had previously been raised, came back normal. I have no idea. My rheumi still thinks it is lupus, or at the least undifferentiated connective tissue disease. I just can't put it all together right now.

I am sorry that you are going through this and you will be in my thoughts and prayers. You are not alone in your symptoms though. The weakness and fatigue I have felt...in all reality I thought I was going to die.

What a wonderful husband you have to treat you so kindly. That is a a true blessing.

I think most autoimmune diseases can cause the fevers and fatigue. Mine come and go with disease activity. My advice is to see a rheumatologist and let them piece everything together.

Take care!

Hello Everybody,

Here's my upddate:  I saw my family doctor last Friday, and politely mentioned that he had previously said that the auto-immune disease he suspected I have is  lupus.  He mentioned that my blood work done awhile ago showed some abnormality, I think something about smooth muscle (?).  He said that he would order some more blood work now rather than waiting to see a rheumy.  At the end of the visit, I again asked if he believed something else was going on besides fibromyalgia, and he said, "Yes, and that's why I'm ordering the blood work."

The blood work he ordered:  Sedimentation Rate (ESE); anti-nuclear antibodies;  CBC (cell count); anti-mitochondrial antibody; anti-smooth muscle antibody; anti-DNA; VDRL (Vibrio); LDH (lactic dehydrogenase); and Albumin...

I was so happy that he ordered these tests, and it has renewed my confidence in him again.  I know you folks will understand that I'm hoping something shows up in my blood work that will explain why I have been so sick for so long.

My question today is:  Should I wait for a flare before doing the blood work (ie- extreme fatigue, fever, more pain, etc.)?  My husband said that it might be a good idea, but he further said that I'd probably be too weak to get out of the house when I'm in a flare, which is true also.

I want thank each of you who reponded to my post of Sept 7th/07.  The lupus resources on H/W, and the good folks on the lupus forum here have given me the strength and courage to more aggressively puruse my health issues with my doctor.  Thanks again. 

I'm not familiar with all of your tests however most doctor's say that it doesn't matter whether you are or not in a flare with what your lab results do... I'm not sure either way. I do know there are members here who have had worse lab work when they were feeling good versus when they were feeling ill which is peculiar. I think out of the ones you mentioned (again I'm not sure about all of them), the sed rate and anti-dsDNA will most likely be elevated when you are having symptoms/flaring. I know that a lot of rheumys look to the anti-dsDNA when they are monitoring the disease so thats something to remember. My dsDNA has never been positive though even when I'm flaring. Do you know if he is checking for any other ENAs related to Lupus (SSA, SSB, Anti-Sm, etc)?

Hi AlwaysRosie & "Des"...

I'm glad to hear I'm not the only one who has concerns about when to get their blood work done.  AlwaysRosie, I know what you mean about wondering what your doctor may think if you don't get it done right away.  Thanks for giving me another web site to check the blood work/labs.  I did look up each of these tests online.

I read that the anti-nuclear antibodies and the anti-DNA are SLE tests.  My doctor said he was ordering "some other things" too.  The LDH test is to determine cellular or tissue damage.  The anti-mitochondrial test is an Immunology test; I read it's a test for chronic cirrohosis (?).  Interestingly, the Vibrio test is for syphillis, liver damage, brucellosis, etc.  I read that people with lupus can get a false positive result for syphillis.  The albumin test is for heart attack, liver disease, and tissue changes.  Of course, being a layperson, I don't know exactly what all of these tests mean, but I am pleased that my doctor is trying to find answers, too.

AlwaysRosie, my Mom has Hashimoto's thyroiditis, too.  It is controlled with her thyroid med, but she does have to go for  blood work often to see if the prescription dose has to be changed.  Is yours controlled well with the thyroid medication?  That's great that you are being treated for UCTC & SCLE even without positive test results like ANA.  I told my doctor that about 1/3 of those with lupus have a negative ANA (I read resources on H/W, thanks).  He didn't include the ANA in my labs this time, but I'm not sure why.

You also asked how often I flare, and that's hard to answer because for the past over 1 1/2 years it seems too often.  I asked my husband this question today because I get quite confused sometimes, and I am too often too weak (muscle weakness, extreme fatigue) to track my symptoms in writing like I used to be able to.  I said to my husband, "Isn't it maybe three days per week?" and he said it's more like four days per week.  On an "OK" day like today, I'm able to get on the computer and type.  But when I tried to empty and re-load the dishwasher today (after two cups of coffee for energy), the plates, bowls, etc. felt like weights, and I started to get shakey in the limbs and too weak to wipe the counters and do a good job.  I am very happy on the days that I am able to get out of the house on my own and run errands, or pick up some things from the drug store (it seems that these days only happen about 2-3 days per two weeks).  I'm so sorry for being long-winded; I hope you understand.

"Des",  That's good info for me to know, thanks.  I have read a bit about the lab work that is normally ordered for lupus (thanks to the lupus resources that the forum moderators post & lupus resources on H/W), and your question about checking for any other ENAs related to lupus like SSA, SSB, Anti-Sm, etc. is very good because he didn't order any of those.  I guess right now it's just one step at a time, but hopefully my doctor will treat my conditon based on symptoms and maybe a low dose of prednisone and Plaquenil may help my extreme fatigue, fevers, and improve my ability to live more normally.  A client of my husband has SLE, and my husband spoke with her at length about me, and she actually offered to give me some prednisone and Plaquenil.  But I wouldn't want to do that right now; it wouldn't be right, but I am going to phone her to thank her for her concern (my husband said that she would like to talk to me).

I'm sure everyone here understands how I'm feeling right now, suspecting and knowing something is not right with my body, but not being officially dx'd and feeling in the dark (except for the official dx's in my signature).  Life is much easier when we're healthy, and everyday activities like dressing, bathing, tidying, cleaning, doing chores and runnning errands feel like normal things one has to do daily vs. feeling like "achievements" for me and so many others who are chronically ill.  I feel thankful, though, that I used to be a healthy, functioning, working individual vs. a person who is born with a disabling conditon.  Does that make sene?  I read The Spoon Theory, and I really loved it.  After reading it, I sat back and said under my breath "Wow."

Thank you so much AlwaysRosie, "Des", and all of you who took the time to help me.  I really appreciate it.  For those of you who get chronic fevers or low-grade fevers, do the meds like prednisone and Plaquenil help with the fevers???  Neither Tylenol nor Ibuprofen help lower my temp, but I do find that resting and wrapping a frozen blue ice gel pack around my head helps.  Anyone who can help shed some light???

Oops again, Monkey Me...I just posted a question to you then I saw your new post! Thanks for your info about the tests coming back normal. I haven't done the tests yet, and I have been thinking that I will be discouraged if they come back normal. It is all so very confusing, being sick and so weak and fatigued, feeling like you're probably dying of some sinister disease. I noticed you get migraines, as well. I was first dx'd w/ migraines when I was 20 yrs old, and I used to get them monthly before my period, or just at the start. I still get mild to bad headaches occasionally, but I seldom get migraines anymore (I do have an Rx for sumatriptan on hand). I have wondered if being in perimenopause/hormonal changes has lessened the migraines (I'm 45 yrs old). Maybe for some it does. A friend of mine who also has fibro and is in menopause gets more migraines now, so as we all know, everyone is different...

Hi Carrie, For me, the fevers have never totally gone away...I get one at least every 2-3 weeks. They are an indication of how I'm doing as far as taking care of myself, etc. I can go a while without any, but then if I'm doing too much I will get late afternoon or early evening fevers fairly regularly. All the meds help, but they are designed to control big inflammations. (I think of these as the meds that keep me on the right road.) They do control regular inflammation, but the little day-to-day things can still cause minor day-to-day inflammations & these produce fevers. That's where an extra nap or ibuprofen (or whatever your dr has recommended for you) wrok to knock the fevers out. (I think of the naps/OTC meds, daily sleep & good food as the things that keep me in the right lane.) Remember that even the stress of an extra errand a day, that your mind & emotions don't believe are stressful in any way --- these can be enough to trigger a temp. I hope that helps a little -- not every temp means a big problem. Cheers,

I think we have very mild, intermittent inflammations/fevers that are just not significant enough to affect our bloods inflammation markers. Kinda' like a little mosquito bite that is annoying for an hour or two versus being attacked by a horde of yellow jackets that put you in the hospital. Or like dropping a plate on your toes versus accidentally cutting off a toe.... These little inflammations/fevers happen when I do stupid little things that make me "change lanes" -- not big enough to be called a flare that "bumps me off the road". Try taking it a little bit easier. A little less stress, fewer errands, etc. I limit outside-of-the-house things to one per day. Like if I have lunch with friends one day, that's it for the day. The errands take one day, even if the actual run-around time is 1-2 hrs. One drs appt a day means no errands or restaurants that day....purposely take a nap in the afternoon... I think most of us should be able to figure out how much we have to slow down to avoid these fevers...it's just SO HARD to slow down to that point, esp. those w/children or those who are still trying to work.

well, last week my joint pains & stiffness started going away & it's pretty much gone now. I feel alot better, and my fever is just about gone as well. I had lab tests done on Aug 31st and have not heard a peep back from my rheumys office, so I assume the tests were fine. So I have no clue why I had fever for several months, along with joint pains & stiffness. I also had some facial puffiness. THat seems to have gone away as well.

I agree with Monkeyme about the Kefir . . . . it is a really inexpensive way to keep lots of gut issues in check. It is even agreable for lactose intolerant people. Once you find a source for your Kefir grains you can make all the kefir you need. I put my grains (they look a bit like cottage cheese) in a jar and add milk. Let it sit for 24 hours, strain it and then you have Kefir. The grains are left in the strainer and you just put them back in the jar and add more milk. Kefir has WAY more of the live culture and more variety of culture than yogurt and is such a bargain. My daughter adds it to smoothies, but I just drink my little glass of it every morning. It tastes like strong buttermilk. If anyone want more info here is a link to just one of many Kefir websites. http://users.chariot.net.au/~dna/kefirpage.html Blessings!