Fatigue, false fevers, ect.

[Scarlett81]

I guess I haven't posted about this specific thing before b/c by now I 'm used to living with it, that its been pushed to the back burner compared to other health things. You know how it is.

For starters, I know I'm not preggin yet! And anyway this has been going on for ages. I kinda pinpoint it to when I started birth control, about 4.5 yrs ago. But that may just be a coincidence. I also deal with (diagnosed) anxiety issues, and though my anxiety attacks now are very rare, that could be a factor too I guess. I'm just trying to mention anything I can think of.

Roughly 4 days out of the week I am so tired. Not sleepy, just physically. I can usually force myself to get up and what I have to, but I tire easily. You know, ready to sleep by 10:00. A night of company, forget it. I enjoy it, but it makes me so exhausted. Then, and I don't know why it seems to always be when I'm shopping, but I'll have these weird times like yesterday. I'll feel ok, lungs, good. But after an hour or 2 of running errands, or shopping I start to feel like I have a fever. A little achy. And the only way I can describe this is by saying hot feeling eyes. Weird I know. I've taken my temp at these times, and I usually don't have a fever. I just feel like I do. Also, I can get a little light headed and occasionally mildly shaky.

Any thoughts? I've gotten pro opinions on it, but like I said there's so many other issues to deal with first, this gets pushed aside, understandably. I mentioned it to my cf doc and she did the anemia test, its always fine. (as far as I know) I've wondered about CFRD or other related sugar issues, but I've been tested for them too, and its never come up. Last year I tested for a range of things, but nothing came up. My therapist says it could be panic attacks, and with my history I guess its possible but I really doubt it is this, at least all the time. Maybe sometimes it is.

My questions are does anyoen ever feel like this? Have you adressed it, and how did you go about adressing it? Its like, is everyone with Cf tired? As tired as this, or do you think this is something else? I guess I want to know how tired is normal in cf?

You don't know how much I appreciate your responses!<img src="i/expressions/heart.gif" border="0">

Christian

 

[becca23]

Yes I have occasions that I do feel like that. Just so tired that you can not do anything, feverish feeling and just feel like crap. I always thought it was do to my CF and never really questioned anyone about it. Usually if I come home and lay down or go to bed really early then I feel much better. It will be interesting to see if others get htese same symptoms.

 

[coltsfan715]

<div class="FTQUOTE"><begin quote>I'll feel ok, lungs, good. But after an hour or 2 of running errands, or shopping I start to feel like I have a fever. A little achy. And the only way I can describe this is by saying hot feeling eyes. Weird I know. I've taken my temp at these times, and I usually don't have a fever. I just feel like I do. Also, I can get a little light headed and occasionally mildly shaky. </end quote></div>

I know you said you have had your sugars checked and they are fine, but this statement made me think of when I get low blood sugar. I will sometimes go out and run errands and I start to get this way after a while. Also I pretty much always get a warm flushed feeling when my blood sugar is dropping. I will even start to sweat at times - even though I will be cold to the touch. I would maybe carry a snack - peanut butter crackers or a granola bar or something in your purse and try eating something when you feel that way. Maybe it will help you feel better - if not no harm no foul.

As for feeling tired - sometimes I get tired for no real reason. I contribute some of it to boredom and some of it to my body working to breathe through the day. Also your body may just need more sleep than you are getting. I know I get tired when I force myself to get up before I get my 8 hours of sleep. If I get anything less than 8 hours I have to take a nap during the day because I am exhausted.

Lindsey

 

[gsplover]

I get this way often.  That is one of the reasons I stayed
home today.  I get tired very easy and get that false fevers
also.  I have also had everything checked and everything comes
out okay.  I don't think it is anxiety because I don't really
have that.  Sometimes I wonder if it is a side effect of
medication or antibiotics or even my period.<br>
<br>
For example, last week I felt flare up of one of my lung infections
coming on.  So I called my doctor and he put me on augmentin
for two weeks.  Ever since I have been on it, I have felt
feverish.  I check my temp and it is normal.  I have also
been very tired.   Yesterday, I started my period. These
are the same type of symptoms I get.  So maybe that is
something to look in to.  I have been puzzled by these same
symptoms.  I would also love to hear if anyone else has
some ideas.

 

[Scarlett81]

I guess it seems I'm not the only one.

 

[my65roses4me]

<span style=" font-size: small;">I also feel that way sometimes
too. I always call it feverish eyes. I have always chalked it up to
just having cf. We always have some sort of infection somewhere. It
seems to be worse around my period also. My joints and muscles
ache, feels kinda like the flu. If I lay down or sleep for awhile I
feel much better. It usually happens when I over exert myself too.
Not sure of a diagnoses but it seems quite a few cfers feel this
way. I thought I was the only one! Thanks for letting me know I am
not!<br>
Khristina 31 yr old cf, PA, hemoptysis

 

[Landy]

I would second what Lindsey said. It sounds like possibly low blood sugars. You could try to eat something when you feel this way & see if that helps. I always carry some kind of snack in my purse so I always have one.

I hope this is something that will get better before you get pregnant because being a mom myself, I remember having a baby to lug around in a car carrier when I went to the store, doctor, etc (when she was sleeping in the carrier) and how tiring that could be. Not to mention those nights of getting up at midnight, at 2, 4, 6, etc to feed her and also those nights when the little stinker would not fall to sleep, etc.
Often my husband would find us both asleep on the couch because I would fall asleep while breast feeding. Finally I switched to formula *gasp* then my husband could get up during some of those night-time feeds & give her a bottle while I slept more than 2 hours at a time!
Of course, that only lasts a few months but I can still remember how tired I was during those first few months!

I guess I took a lot of space to tell you to eat a snack when you feel this way, huh? Kind of got off on a tangent<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Scarlett81]

lynda,

I appreciate your thoughts on this-and that is one of the reasons I am concerned. I've had the tests, like I said, and my docs say-I'm fine, there is nothing wrong with me. So that's why its frustrating.
I mentioned all this to my therapist, of course, b/c of the possiblity of it being connected to my anxiety problems. I used to have axiety "attacks" 4 or more times a week. Now I get 1 a month at most, more like every other month.
Its very hard b/c you describe it to one doctor, and they say, sounds like panic attacks. Another says, sounds like sugar issues. Another says, it could be your lungs....
Anway, I'm going to carry around snacks like you said. I'm pissed b/c I'd like to resolve this issue before I get pregnant. But I don't know how. I don't really know where to go. I've mentioned it to the cf doc, and after she does blood work and makes sure my lungs are ok, its like what else can she do? Esp considering my emotional history, I don't blame her for thinking it could all be emotional.

As you can see, I'm very torn. As far as when the baby comes, fortunately I have a very supportive hubby. I have lots of help. We already agreed that I will pump my milk if possible, and he can get up and feed in the night too. So that will hopefully be a help. Of course I know what you are saying though-the running around, the doc's visits, ect-very tiring stuff.

I know I'd be getting the gestational diabetes testing. Maybe that would show somethig once and for all? Not that I want that, duh! Its just sucks when you can't get an answer.

 

[Diane]

If i didnt know you had b.cepacia i would have suggested you get a sputum test to rule it out. The symptoms you describe are the very ones that got me diagnosed with b.cepacia. The unbelievably tiredness, and the flu like pain in the body with very low grade fevers( 99.2 maybe) if any fever at all. The only thing i found that gets rid of the tiredness is glutatione ( orally) I noticed after taking it ,i could feel a difference almost right away in my energy level. I dont know if it would be ok to take that since you are trying for a baby, so i would not suggest you try that till you have spoken to your doctor. The Phantom fevers are a pain in the A$$. Persistant buggers that just invade your life once cepacia sets in. I never used to get any type of fevers or aches and pains TILL i got cepacia. The only thing i do for them is....put up with the pain if it isnt too much of a nuisance, or take tylenol. I hope you get to the bottom of it all soon, so you can relax and feel better <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Can't log in at work and still post, but wanted to chime in as well. I am 28 - almost 29 and also have these problems. The lightheadedness I attribute to have too many carbs, sugars and have an upswing and then a sudden drop. I usually try to eat some protein during these times and it seems to help me out. I am regularly tired and have occasional boughts of sore and swollen hands. I also go through fever type spells, especially at night, where I wake up soaked. All of this occurs without an actual fever. I have talked to my CF doc about it and she thinks it is mainly hormonal, but I want to disagree with that be/c both my brothers have night sweats at times and they both have CF. Though it does seem to coincide with my cycle for the most part, but it isn't perfect. I am also frustrated by this. I have a gluclose tolerance test every year where they check on the first and second hours to see my glucose uptake and it is still within normal range. I have been considerably healthy my whole life and still have PFT's in the 110 range for FEV1. They have tested me for mycobacterium be/c infections with that can cause sweating. This came back negative. I carry Pseuod and occasionally MSen Staph. I am not on antibiotics ever and do not take hypertonic saline (my PFT's are high enough that I haven't needed to take anything.) I work full time and do not yet have a family, but hope at some point to start one sooner than later. I completely understand your frustration Christian because I feel the same way. It is as if there is something else related to this disease that no one understands yet. Huh. These are my two 1/2 cents! =) Sorry I didn't log in.

Point -

 

[Landy]

Christian
I hope you can get this figured out & get to feeling better soon! I'm sure it's frustrating not having an answer. Even if the answer is something like CFRD, sometimes it's nice to have an answer then you can fix it & quit worrying about it!
Please keep us posted<img src="i/expressions/face-icon-small-smile.gif" border="0">
On the baby front, I'm was so hoping that you weren't offended. After I posted that I hoped you saw it as me caring about you & your future! I think one of my many draw backs is that I tend to be a mother-hen type.
I'm so glad that you have a supportive husband and help available. I tried to pump too, maybe I had some post-partum depression or something but I just couldn't seem to keep it all together with planning, resting, staying ahead of the game with pumping, etc. so it was just easier to do formula.
I hope you get some answers soon<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Scarlett81]

Lynda,

NOT offended at all! I agree totally with what you were saying. Like I said, its one of my concerns too about being a mom. Probably at this point this is my biggest concern.

No need to apologize whatsoever!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tonrsoul82]

Hello their.  I get this alot as well.  I have talked to
the cf specialist I see.  He said the fever feelings come from
swallowing the mucus I cough up.  I know it sounds gross, but
I bet most of you do.  Cough once or twice and just swallow.
 I take about 600 MG of IB profien a day.  200mg 3 times
a day.  That usually takes care of the feverish feelings I
get.  My Dr. told me also that IB profien can also help reduce
the lung swelling, but to make sure I drink plenty of water when
taking it, as this can cause stomach problems.  As for the
Tiredness I get that when my lung function gets low.  I am
only working part time while being on Social Security.  When
my functions get low I will work say a 4 hour day and get off and
be exhausted to the point where I feel as if I had just worked a 14
hour day ( heh yes I have worked a 14 hour day before).  I
also find I need more sleep.  On average I can get by on 6-7
hours of sleep, but when my functions drop I find myself sleeping
12-15 hours a day.  Hope my piece of info helps.