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Grime
05-05-2009, 02:33 AM
Does anyone else run a fever all the time? It was brought to my attention that I was running a fever. Seems like I have a fever 24/7 and it never goes away.

gina
05-05-2009, 05:14 AM
I don't run everyday but when i a bad flare its low grade like 99.9 for the length of the flare which could last days and weeks at a time. i think we are always flareing somewhere in our bodies, and the fevers are part of it.

rob
05-05-2009, 06:24 AM
Hi David,

Yeah, I have a mild fever that hovers between 99-100 on a fairly regular basis. My flares are constant with the usual symptoms peaking in intensity about every three days. My temp gets highest when the flare is at it's worst, and subsides when I start to feel better. But my temp almost never goes below 99. Hot blooded I guess.

wrightrs
05-05-2009, 06:47 AM
Yes I run a fever 99-100 mostly at night.

rob
05-05-2009, 06:53 AM
Yes I run a fever 99-100 mostly at night.

Yeah, mine is the same way, it gets worse at night. I remember before Lupus if I had the flu with a fever, tylenol would knock the fever down pretty well, but now, it has no such effect. Strange stuff.

Grime
05-05-2009, 07:35 AM
Thanks guys,
Well it seems that this in normal. Tylenol does help with the fever and headaches. Never have taken much Tylenol in the past so right now its working. I have found that when the fever starts I get real tired and have to stop what I'm doing and rest. Also get real short of breath.

For example yesterday we were at the boat doing so work. Really relaxing fun work when the fever started. I got part of what I needed done and walking back to the truck I had to take a couple of breaks. Finally I just said the hick with it an made myself finish walking to the truck. We went by a friends place and she was the one that noticed I was running a fever.

mountaindreamer
05-05-2009, 07:55 AM
hi david,

sounds like your fever is a sign of a flare. When i am entering a flare (even if a mild one), the veins in my hands will jump up, and my hands will get really hot.....this is how i know i am going into a flare.

Grime
05-05-2009, 08:12 AM
Since I'm going through the change in life can't I just write all this stuff off as hot flashes? :wacko:

rob
05-05-2009, 11:02 AM
Since I'm going through the change in life can't I just write all this stuff off as hot flashes? :wacko:

That caught me off guard. Made me laugh so hard I almost spilled my drink!

BadFlareDay
05-05-2009, 02:40 PM
I don't check mine with a thermometer, but when I'm getting a flare I start having chills so I am assuming that I am running a fever because of that.

Oluwa
05-05-2009, 04:03 PM
I run cold....96 - 97...with night sweats.

L.,
O.

MicRoMediC
05-05-2009, 04:14 PM
yeah, i'm in the middle of a STUPID flare and i've been running a low grade fever. i usually run 97ish. i figured i was fixin to get sick again since I GET SICK ALLLLL THE TIME. anyway, hope this helps-sorry i'm a bit bitter right now.

lucky7
05-05-2009, 05:53 PM
Hey Phyllis, thats EXACTLY how i know i know im running a fever! I get the same thing happening in my hands! My veins look like they're going to pop right out of my hands! EWWWWWY, its like a horror movie if that were to happen! YUCK, just picture it ! Blood EVERYWHERE!! So sorry, i just watched the EXORCIST the other night with Ash and her boyfriend cuz he never saw it before! Blood and pea soup are on the brain! LOL :7:

mountaindreamer
05-05-2009, 08:24 PM
hey jeannette,

when i used to show my 1st dr. how the veins would pop out in my hands, he would respond by showing me his own hand and say "see, mine do the same thing" he did not understand what my issue was....yuk, what a fond memory, not really, more like a nightmare

AyahsClan
05-06-2009, 12:59 PM
Sorry you are going through the change ; ) I hope you get over it fast.

Thanksgiving 2007 I contracted something viral after a large family gathering. I was symptomatic in different ways through to spring 2008 and ran a fever the whole time, about 4 months.

David are you covering your whole body up with UV clothes every time you are outside? IMHO sunblock is not enough if you are out sailing, etc.

Take Care,

wrightrs
05-06-2009, 05:15 PM
I told my doctor about my fever he says that's just normal everybody does that. They just want to get rid of you.

Grime
05-06-2009, 05:52 PM
.
David are you covering your whole body up with UV clothes every time you are outside? IMHO sunblock is not enough if you are out sailing, etc.


Yep I sure do cover up very little skin shows and that has SPF 50 or 70 on it. My shirts are not SPF but I do ware ones that are very heavy material and jeans.

Rastagirl
05-06-2009, 10:02 PM
Hi David....

I've read through this thread and thought I might share my perspective on the fevers that come with Lupus. I felt like I should share what I've learned in my 27 years of fever experiences.

When I was first diagnosed at 18, and through about the first 5 years when I was the sickest, I ran the low-grade fevers you are all talking about. Most of the time 99 to 100 degrees and I had them every day for a long time. The patterns would change with the amount of Prednisone I was taking. If I was on high doses, I never had fevers. As we tapered me down, the fevers always came back.

Usually I would be fine when I woke up and throughout the morning hours, but by late afternoon or early evening, the fevers would come on and last all night. I would be miserable every single evening.

Finally my Lupus doctor explained to me what was happening was, each morning when I woke, my adrenal glands released their cortisone for the day, about 6 or 7 mg. That's what the average person's body releases and is normally enough to help you make it through your day with all the normal stresses put on our body. Then throughout your day, if you are faced with an extremely stressful situation, 'fight or flight' kind of thing, your adrenals release a huge dose of extra cortisone to get you through the major stress. That's what happens with the normal, healthy person.

With a person with Lupus, your body is constantly using up the cortisone throughout the day, because your body is being told it has to make antibodies and fight off invaders. Only those invaders are your own organs and tissues. So, the result is, by early afternoon or evening, your body has no extra cortisone it needs, so one of the ways it reacts to this is with a low grade fever.

And one of the ways this became obvious to me, was when I was having a really hard time making it through my day without the fevers, and I was having terrible joint pains, fatigue, etc., my doctor had me split my dosage of Prednisone into 3 different doses...my first in the morning when I woke....the next in mid afternoon....the last at bedtime (to take me through the night). I remember being on this regimen for about 2 years and it helped tremendously with the low-grade fevers.

Eventually, when my body settled down and I went into remission, I was able to go back to taking my Prednisone once a day in the morning. And that dosage was enough to get me through my entire day and night without any fevers.

I hope this makes some sense for you. And the only other thing I would add is that the one thing that I did get from ALL the fevers I've endured through the years, is that now I know my body so well, that I can instantly feel whether I'm getting or have a fever for any reason. I just know.

If there is one thing that Lupus does teach you over the years, it is how to become an expert about your body and what's normal for you and what's not. You will come to know your body very well, and it makes it much easier to stand up to doctors and convince them that something is wrong and needs to be taken seriously. I never back down now...I just ask them if they've lived with Lupus for 27 years.

Hugs to everybody with low-grade fevers!

Lori :cool2:

Grime
05-07-2009, 05:42 AM
What a great write up. Thank you so much for taking the time to do this not only for me but for those of us that don't understand Lupus all that well.

A little piece of good news. I finally got the VA to make all my appointment on the same day. Now I don't have to worry about how I'm going to get there. May 28th is the big day with 3 different doctors and then on the 29th I'll have my surgery. It's only taken 8 years to get the surgery done.

Rastagirl
05-10-2009, 10:58 PM
David....I'm so glad to hear they've arranged all your appointments the same day....much more convenient for sure....and what a help for your transportation situation.

What surgery are you having? Sorry if I missed you mentioning it on another thread. I've been missing out on tons of posts and can't figure out why.

Hoping you're keeping well.

Hugs,

:cool2: Lori

Grime
05-11-2009, 01:03 PM
Hi Lori,
You and me both. Maybe now I can get something done in one trip. No you didn't miss a post about my surgery. I got hurt about 8 years ago on a horse that created a hernia that is now about the size of a grapefruit. Only time it bothers me is when I have to lift up something heavy say more than 80 lbs. It does kind of worry me some with getting cut on with the Lupus and will it fight the healing process.

Lisa and I spent Saturday and Sunday on the boat and came home this morning. Still to much wind and heavy chop to enjoy a Mothers Day sail. I was glad that Ty call him mom to wish her a happy mothers day.

Have a great week.

Angel Oliver
05-11-2009, 01:06 PM
Oh David,

On the boat...sounds great....i laughed at the wind....as i am taking senna so am very windy :)
Hope you both are keeping good....i think of you both often.

love
Amanda.xxxxxxxxxx

Rastagirl
05-11-2009, 05:53 PM
Hi David....

I'm thinking we better make sure we're upwind of Angel for a few days... :laugh2:

F.Y.I....My husband's had 2 hernia surgeries in the past 5 years and they both went very well. I did have frustration in the fact that it's a day surgery now, and once my husband's anesthesia wore off, they gave him oral pain meds and sent him home with me to take care of him. Of course, he tried to be the tough guy and get up too soon and do things for himself, but quickly discovered he needed to stay on the couch for a few days and take it easy. He started feeling much better after about 5 days.

I sure hope they're not doing it as a day surgery at the VA and then sending you off a few hours later for a long car ride home and expecting Lisa to care for you. It wouldn't surprise me though. It wouldn't hurt to make sure they know ahead of time about the length of your trip home following the surgery.

As far as having Lupus and healing after a surgery, I would say just be extra vigilant about following ALL their post-surgery instructions, and make sure you take extra care with infection. Keep things as clean and sterile as possible while you're healing. If they tell you to cover the wound for your first shower, then make sure you do it. If you get a fever, or your wound is showing any signs of infection, don't wait, get yourself back in to see someone asap. Also give yourself extra time to heal...just because they say the healing process should be about 6 weeks, for example, don't get down on yourself if you take a few weeks longer. In my experience, when you have a Lupus affected immune system, everything takes a little longer to recover from. When I had my hips replaced, with both surgeries, I took about 3 to 4 months longer to completely recover than the timeline they had given me for an average healthy person having the surgery. And with the hernia surgery, the most important instruction to follow is the warning about how much weight you can lift following the surgery. My husband had a setback in his healing because he thought instead of waiting the full six weeks, he could lift boxes in the garage at 5 weeks post surgery. Don't make that mistake... :nah:

I can tell you that once everything was healed, my husband was very happy with the results...it was really nice to be pain, and hernia, free afterwards and to be able to do all the things that his active lifestyle required.

I'll mark my calendar with the surgery date....and I'll be thinking of you and praying for an excellent outcome.

Fondly,

:cool2: Lori

p.s. Please tell Lisa Happy Mother's Day for me...I tried to remember all the Mom's I know and wish them well...so sorry I forgot Lisa. I'm glad the important person, Ty, remembered his Mom.

Angel Oliver
05-12-2009, 05:27 AM
Oh David and i will be thinking of you too.Sorry i did mean to put that but the wind made me forget :) Sorry.xxxxxxxxxx (i have'nt got wind really but am on senna).x

mountaindreamer
05-12-2009, 07:26 AM
hi david,

i am so glad that the VA is finally working with you to make things a little easier. I too, will mark the 28th and will be thinking of you that day and the following day for your surgery.

it is so nice to hear that you still have your boat....i was so worried when you were talking about selling it, your boat is too special, (just behind your beautiful Lisa) and i am glad that you found a way to keep it.

healing after surgery, i agree with lori, it just takes a little longer. I am taking longer to heal after my heart thing, but feel better each day. I have returned to the dr. twice because of concerns with infection, so be sure to watch out for anything that does not look normal. Do not hesitate to call the dr. (if you can call the VA) to inquir about any concerns that you have.

keep enjoying life

lucky7
05-13-2009, 10:34 AM
YEAH!!! David kept his boat!!!!!!! Thats a GREAT thing David! Its your serenity and joy, so dont take that from yourself. Youre going through enough as it is.

wrightrs
05-13-2009, 10:44 AM
Glad you kept your boat. You need something to keep your mind off things. :banana:;):8::You_Rock_Emoticon: