Posted 9/20/2007 1:04 PM (GMT -6)
Hi there,
I went in with my last fever aches flare etc, and had all the blood work drawn, only to have it all come back perfectly normal. My rheumy said it didnt change the treatment or the dx, but it sure is confusing. So if it all comes back normal, don't feel too discouraged.

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Posted 9/20/2007 2:12 PM (GMT -6)

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???


 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease...
 
If only I had a brain...I'm off to see The Wizard!

Posted 9/20/2007 2:22 PM (GMT -6)
Oh, I forgot something (that's normal, right?)...Monkey Me: I too had c. diff. which you had in 03/07. I was in hospital for five days on IV. I'm wondering how you contracted it??? I had my appendix out in July/03...a simple thing I thought. Eight weeks later, I was hospitalized for ten days on IV abx due to an abdominal abscess, then I was still sick and got sicker, then in hosp. again in Oct/03 w/ c. diff. The hosp. Dr.'s said the c. diff. was due to being on abx, while my family doctor said it was an infection contracted from the hospital (dirty surfaces, etc.). It took me six months to recover from all of these infections. I haven't come across anyone else who had c. diff. online (aka pseudomembranous colitis). How did you contact it, if you don't mind my asking??? Thx, Carrie
 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease...
 
If only I had a brain...I'm off to see The Wizard!

Posted 9/20/2007 2:31 PM (GMT -6)
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...
 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease...
 
If only I had a brain...I'm off to see The Wizard!

Posted 9/20/2007 2:50 PM (GMT -6)
Carrie
I was just laughing at myself as I realized I answered your post twice with virtually the same information....good grief. I am not doing well right now so I have an excuse right ?

I am unsure how I came into contact with the actual c. diff spores. It was either in the hospital while I was having surgery (appendix) , or at the nursing home where I worked. No way to tell for sure as both of those types of facilities are FULL of the spores.

I did not come down with the actual infection until I took Clindamycin for a dental infection. I have been sick since early april with c. diff and it is just wearing me out.

I have been on vanco tapers and have relapsed numerous times.

Can you tell me what finally ended the infection for you?

I am just so darn exhausted. My GI is less than helpful. What a nightmare! I really want to get the word out that the latest medical journal studies have shown that drinking a probiotic drink such as Kefir while taking antibiotics is of MAXIMUM importance in preventing c. diff. It is highly important for us Lupies as we are in and out of hospitals and doctors offices where we can easily pick up the spores. Also, our immue systems leave much to be desired in fending off infections.

Making a daily habit of drinking Kefir or taking probiotics is really important, and something that will remain a part of my life post c. diff.
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Posted 9/20/2007 2:56 PM (GMT -6)
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,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Posted 9/20/2007 2:58 PM (GMT -6)
Lynwood
I know your post was directed to Carrie, but I have a question on your thoughts about inflammation. I too deal almost constantly with fevers like I mentioned before. But blood work looking for inflammation came back normal. So if its coming back normal on inflammation, I have to wonder what the heck is causing my fevers?

Any thoughts?

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Posted 9/20/2007 3:16 PM (GMT -6)
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.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Posted 9/20/2007 3:33 PM (GMT -6)
Oh I so agree. This current bout of fever came after a day of feeling INCREDIBLE!

I felt so darn good. I got up, didnt want to waste a second, hopped in the car to visit my sis, begged her to go thrifting, which we did for hours, helped her load and unload and set up a bed for her daughter.

Helped her clean up daughters room a bit.

Ran home, took dog to vet appointment, came back, went to wal mart to get needed items, went to drugstore to pick up presciptions, went to pawn shop to pay on my guitar using hubbys debit card which he gave me to use.

Had wrong pin number.

Hubby not answering phone.

Drove home, got pin, went back, new guy in there, wouldnt let me use hubby's debit at all.

Drove to atm, got cash, went back, paid bill.

Took movies back to Blockbuster, rented more,

stopped at walgreens and picked up a late filled prescription,

went home,

made dinner,

sat down for first time at 9pm.

And when I wake the next day with a fever I am thinking, WHAT AN IDIOT!! Why can I not limit myself? I am like a child stuffing cake and candy into my mouth until I am sick! Did I mention that I hardly ate at all that day? And what I did eat was not good for me? I mean, what in the heck is wrong with me. I have been so darn sick in the past year, that when I get a good day I want to celebrate!

The fierceness of this flare though has scared me. I do not think in the future I will be so careless.

Thanks for your imput, your explanation on the minor inflammations makes sense to me. Its strange how negative bloodwork can put me right back into that vulnerable mindset of "nothings wrong with you, you must be crazy". I was made to feel that for so many years while trying to figure out what was going on.


Thanks again for your comment.

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Posted 9/20/2007 4:35 PM (GMT -6)
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.
Posted 9/20/2007 6:34 PM (GMT -6)
I have fevers everyday and have been worked up extensively for it by an infectious disease doctor. The results boiled down to it's my disease causing the fevers. I normally run 97.2 and on a daily basis I'm at 99.5 or above. Of course doctors do not consider it a fever until it reaches 101.1 and above. I have several days per month when my temperature is that high or higher.

I of course have the MDS in addition to my lupus so that gives me double the chances of having my disease affect me with temps. I ran pretty high daily when I had my bad case of C-diff, which they figured I picked up being in the hospital on IV antibiotics.

So, I just believe that we're prone to running temps with the lupus as we've always got some form of inflammation in our bodies.

Hope this helps some.

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Posted 9/21/2007 10:44 AM (GMT -6)
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!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted 9/21/2007 12:48 PM (GMT -6)

One thing that really frosts me is that too many doctors, including specialists, forget that AI diseases, although supported by labs, are primarily a clinical diagnosis.  An experienced rheumatologist can depend upon his/her judgment on whether a person has or does not have AI disease.  Some AI diseases are easier to recognize than others, but as a class, these diseases are very difficult to diagnose.  Hence, some number that comes back from a lab should not be diagnostic.  I've been told that a negative ANA does not exclude lupus; just that it possible, and in some cases highly probable, that ANAs fluctuate as much as the wind--they are a very inaccurate measurement of disease activity.  All they really show is that your immune system is malfunctioning in some way.  Same thing with rheumatoid factor, and I'm sure a whole slew of other types of labs.  Based on your symptoms, I would recommend you see a rheumy.

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

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