anxious about not feeling good despite good numbers?

[justbecauseicannotseeit]

Hello all. I don't come on these forums too often, but lately I've been struggling a bit and could really use some advice. I'm 21 w/ CF and have always been considered pretty healthy. My FEV1 is rarely below 100%, and I think the lowest it's ever been was around 90%. My resting O2 is never below 98%. Most of my lung problems are asthmatic, triggered by allergies. I often cough a lot but don't usually produce too much sputum. Although lately, whenever I do cough up, it's always either bright green, or a dark brown-ish yellow. Occasionally I get little tiny hard pieces of really dark green mucus... I have cultured positive for aspergillus in the past, so have been kind of worried I might be growing it again, but my last culture was negative (although it's rare that I give a good culture, so I always feel like I need a bronchoscopy to know what's really going on in there - last time they found MAC and had to keep doing bronchs to check the progress since the bacteria wasn't showing up in my regular cultures).

Anyway, despite my awesome stats, I haven't been feeling too well lately. I've been on oral antibiotics near constantly since I got rid of the MAC because I always seem to be coughing up this stuff, even though I don't cough up much of it, and I get a lot of sinus infections. I know it's sort of "normal" to cough up green mucus w/ CF so I feel strange being so concerned about a little but of it, but it hasn't become normal for me to have consistently green mucus until recently. I'm also worried all the antibiotics are overkill. I feel strange being on them all the time when my numbers are so good?

Lately I have been super out of breath at random times, even though I feel like my asthma is under control. It doesn't really feel like an asthma attack exactly, and it's kind of hard to describe, but I find myself breathing shallowly and feeling lightheaded and have to remind myself to take a deep breath. I find I can get plenty of air in if I concentrate on taking deep breaths, but almost feel like I can't get enough out? My lungs feel almost too big for my chest, if that makes sense. There's a weird pressure, but it doesn't feel like the tightness of an asthma attack per se. I'm sluggish most of the time, my joints ache, sleep a lot but still feel tired find it hard to concentrate, kind of lightheaded, REALLY really hungry, it kind if feel like my blood sugar is always low even though my glucose tolerance tests always come back fine. I eat nearly constantly but I've lost about ten pounds over the last 6 months or so. Still a healthy weight, but it's just strange since my appetite has been huge lately.

I don't know, I'm just really confused, because my numbers look so good but I feel not-so-good, and I was just wondering if anyone else has had a similar experience? Is it possible to have such a good FEV1 and still be out of breath? Is there something else I should try asking my doctors to check out? I get really nervous about being on antibiotics when antibiotics aren't necessary b/c I don't want to become immune to them or experience permanent side-effects or anything...I don't know, I feel like I'm worrying too much! I would really appreciate any advice anyone might have...

Thank you!!!

 

[believingjesus]

I don't have cf but my son does. Your numbers sound real well. I would say to check for cf related diabetes but you said your tests were fine. My son does not produce much sputum either and they have a time getting a culture. I wonder if your enzyme dosage is still where it should be? My sons dosage has steadily increased over the years. My son has coughed more as he has grown older but he has a high lung function also.

I worry a lot too so I know where you are coming from. I really think it is part of who I am as I worried when I was a kid too. I can tell you to not worry but if you are like me - you still will. I work on trying to take one day at a time and do all you can in this day. The unknown scares me so that helps to concentrate on the present.

You have a high lung function and that is excellent. Nice to hear from you!

 

[justbecauseicannotseeit]

Hi, thank you so much for your comment! I think that my enzyme dosage is good. I adjusted it less than a year ago, actually started taking less (probably b/c I lost weight) and it helped some stomach issues I was having a lot...So I'm sort of hesitant to mess with the dosage again, but maybe I should ask about it.

Yes, same here - I'm either worried I'm focusing too hard to trying to stay healthy and overreacting or worried I'm not being proactive enough and brushing things off when I shouldn't... haha, there is no in-between really. I agree concentrating on the present is the best way to combat this sort of anxiety. I think a big source of my worry right now is what MIGHT happen if I don't tackle it now...leading to worst-case scenarios, of course. It's very helpful to here from some one else who understands that though, so thank you!

I'm so lucky my lung function is so high, it is a blessing. I almost feel silly complaining about breathlessness with such strong lungs, but I guess that's part of why I'm reaching out here, to see if anyone is in the same boat. It's confusing when I don't feel my best but the numbers don't reflect that, as glad as I am that they are so good.

 

[nmw0615]

You know your body better than anyone else. If you think your body is telling you something, listen. My lung function is not as good as yours, but when I'm healthy my O2 levels are about the same. Ask for a sleep study to check your overnight O2 levels. I was feeling extremely run down, despite having decent lung function, and it turned out my oxygen was dropping at night. My heart was working hard as I slept, so it was like I wasn't getting any good rest at all. I started using a couple liters of oxygen every night and my constant drowsiness went away, along with some of my daytime issues.

Also, what inhaled meds are you on? Like albuterol and advair. I take albuterol twice a day and as needed, advair twice a day, qvar twice a day, and perforomist twice a day. This is to help control the asthmatic component of my cf. Getting that under control allowed me to figure out which coughs were asthmatic and which were from possible infection.

I hope you're able to get some answers soon.

 

[triples15]

Hello all. I don't come on these forums too often, but lately I've been struggling a bit and could really use some advice. I'm 21 w/ CF and have always been considered pretty healthy. My FEV1 is rarely below 100%, and I think the lowest it's ever been was around 90%. My resting O2 is never below 98%. Most of my lung problems are asthmatic, triggered by allergies. I often cough a lot but don't usually produce too much sputum. Although lately, whenever I do cough up, it's always either bright green, or a dark brown-ish yellow. Occasionally I get little tiny hard pieces of really dark green mucus... I have cultured positive for aspergillus in the past, so have been kind of worried I might be growing it again, but my last culture was negative (although it's rare that I give a good culture, so I always feel like I need a bronchoscopy to know what's really going on in there - last time they found MAC and had to keep doing bronchs to check the progress since the bacteria wasn't showing up in my regular cultures).

Anyway, despite my awesome stats, I haven't been feeling too well lately. I've been on oral antibiotics near constantly since I got rid of the MAC because I always seem to be coughing up this stuff, even though I don't cough up much of it, and I get a lot of sinus infections. I know it's sort of "normal" to cough up green mucus w/ CF so I feel strange being so concerned about a little but of it, but it hasn't become normal for me to have consistently green mucus until recently. I'm also worried all the antibiotics are overkill. I feel strange being on them all the time when my numbers are so good?

Lately I have been super out of breath at random times, even though I feel like my asthma is under control. It doesn't really feel like an asthma attack exactly, and it's kind of hard to describe, but I find myself breathing shallowly and feeling lightheaded and have to remind myself to take a deep breath. I find I can get plenty of air in if I concentrate on taking deep breaths, but almost feel like I can't get enough out? My lungs feel almost too big for my chest, if that makes sense. There's a weird pressure, but it doesn't feel like the tightness of an asthma attack per se. I'm sluggish most of the time, my joints ache, sleep a lot but still feel tired find it hard to concentrate, kind of lightheaded, REALLY really hungry, it kind if feel like my blood sugar is always low even though my glucose tolerance tests always come back fine. I eat nearly constantly but I've lost about ten pounds over the last 6 months or so. Still a healthy weight, but it's just strange since my appetite has been huge lately.

I don't know, I'm just really confused, because my numbers look so good but I feel not-so-good, and I was just wondering if anyone else has had a similar experience? Is it possible to have such a good FEV1 and still be out of breath? Is there something else I should try asking my doctors to check out? I get really nervous about being on antibiotics when antibiotics aren't necessary b/c I don't want to become immune to them or experience permanent side-effects or anything...I don't know, I feel like I'm worrying too much! I would really appreciate any advice anyone might have...

Thank you!!!

Hi there!

Sorry you are feeling funky. I do know that feeling of feeling kinda crappy, yet PFTs are unchanged. Or feeling good, yet PFTs are tanked. It's super frustrating to me when that happens. I like to have some vague idea of how I'm doing!

My one thought is that, although you've been on antibiotics, maybe they are not doing their job? Since you're still having more of the darker colored mucus than is baseline for you, that would suggest infection/exacerbation to me. Maybe it's time to try to zap them with the big guns (IVs)?

My other thought, and this is a long shot and I REALLY hope to not offend, but is it possible at all that some of the breathing/exhaustion/hunger problems could be depression and/or anxiety related? I only ask because I recently started having this thing where all of the sudden I would feel short of breath, my heart would do a little flutter, and i'd have a moment or two of lightheaded/dizziness. I have also been feeling a bit exacerbated lately (more congested/tired), so at first I thought it was related. I went to clinic and PFTs are baseline. I've decided that I'm 99% sure the SOB/flutter/lightheadness are anxiety related. I've been pretty stressed lately with my health, a recent move, etc. My next stop is probably a psychiatrist.

Also, my first inclination was diabetes, but you have "passed" your glucose tolerance tests. Maybe your doc would be onboard with some at home monitoring? When I was pregnant I "failed" my 2 hour, and subsequent 3 hour glucose tolerance tests, so I was diagnosed with gestational diabetes. After the diagnoses I checked my blood sugar 4 times a day for the remainder of the pregnancy and only had 1 or 2 abnormal blood sugar readings in almost 2 months. Never needed insulin or even diet modification. I guess my point to this story is to say that I suppose it isn't impossible to have the opposite be true, "passing' your glucose tolerance test, yet still have some blood sugar issues.

Anyway, I hope you get it it pinpointed and start feeling better!! Hopefully others have good thoughts!

Take Care,

Autumn

 

[justbecauseicannotseeit]

Hello nmw0615, thanks for your comment! Hmm, maybe I will ask at my next clinic appt. about a sleep study... do you think it's possible to be at 98%-100% during the day and drop low enough at night to need oxygen? From what I understand it would have to drop below 90% to require supplemental oxygen? As for asthma meds, I'm doing symbicort twice a day and levalbutrol when needed, although I haven't really felt like I need it much lately. The breathlessness I've been experiencing doesn't feel much like an asthma attack, if that makes sense? It does help sometimes though. My IgE levels are always really high, so I always seem to have an allergy-induced type of cough, but surprisingly it's been pretty quiet since I've been taking Minocycline, so maybe it was being caused by an infection. I tend to have trouble figuring out when it's allergy-related or an infection as well.

triples15, Hi there! Yes I thought about maybe asking for IVs just because of the darker mucus, even though there isn't a lot of it. But then I thought about the aspergillosis I had a few years ago and how this is sort of similar, even though aspergillus isn't showing up in my regular cultures... So maybe asking for a bronch to get a good look / sputum sample would be a good idea? I don't want to treat w/ antibiotics if it's not a bacterial infection.

Don't worry, I'm not at all offended by the idea that it could be depression/anxiety related, it's definitely a valid concern and something I have thought about. I used to have a lot of trouble w/ anxiety when I was younger and can remember what it feels like to have a full-blown anxiety attack... It can be very difficult to distinguish between an asthma/anxiety attack sometimes! But I have to say this does feel different. I think my anxiety about it is definitely making it worse, but I've gotten pretty good at recognizing a panicky feeling and separating myself from it long enough to figure out if it's fueling any physical symptoms I may be feeling. I'm sorry you're experiencing that right now as well, I hope that if it's anxiety related you can get it under control and feel better!

And yes I agree with the blood sugar issues; when I was really young I was diagnosed with hypoglycemia and my sugars dropped pretty regularly, but now it seems to happen pretty randomly. Most of the time my glucose tolerance test is completely normal, but I still have periods where it drops frequently (I used to have a meter and measure it at home). Seems pretty sporadic, and I don't think I have developed diabetes, although I have heard that CFRD can happen pretty randomly, or only spike during exacerbations? So I guess it could be a concern.

Thank you both so much!!! It's really nice to get some advice. I have loads of things to ask my Doc about at my net appointment now, haha. There's so many different things that could be causing these really general symptoms, so I'm not really sure where to begin, but talking about it with you guys helped organize my thoughts, so thanks again

 

[lsveburg]

Maybe you are anemic. Your sats can look great but if you're anemic then the capacity for oxygen carrying is lower. The Dr. at children's told us he would rather have a 92 sat with at 12 Hgb than a 98 sat with an 8 Hgb. All the residents kept wanting to remove Jenna's O2 but she had dropped her Hgb from 11.6 to 8.5 in three days and she was struggling even though her sats were running at 96. Just a thought because she had similar symptoms at the time.

 

[imported_Momto2]

Listen to your body and try to figure out what's going on. In a fairly short period of time my exercise tolerance went from running a 10K to getting short of breath walking up a flight of stairs. Yet my PFT's hadnt changed one bit!!!!!!!!! Nor did I culture anything. Go frigging figure. Kept telling folks that something was really changing, but I dont think anyone who didnt live with me really believed me. I was exhausted and coughing all the time. SEVERELY asthmatic all the time. The only things that was wonky were my neutrophil and WBC counts, both very high. Finally, my sats dropped into the 80's........but yet I still wasnt "sick" (FEV was still "unchanged". Tried IV antiobiotics anyway, didnt help a bit. High doses of prednisone DID help, there was massive inflammation in my lungs, but no infection. Finally, after almost a year of this crap my FEV dropped to the low 40's. I started doing some testing on myself and I figured out I was diabetic. Started on insulin and my lungs started to improve within about 48 hours. So, listen carefully to your gut. Do everything to can to figure out whats going on. My diabetes never registered with the doc because my A1C is still within the "high normal" range, yet my blood sugar regularly was going up into the high 300's and staying there a loooooooooooong time. Then it would plummet. Be aware that CFRD can have a false normal A1C- I never knew that. Blood sugar readings that stay above 140 can lead to a lot of lung inflammation.....I really hope you find your "source"!!!!!

 

[TreasureGoddess]

my son's PFT's hardly ever go down, even when he is severely sick and having excaberations. It's a blessing to have high numbers, but can also be hard as many doctors use that as a way to judge the health of someone with CF. Our docs have pretty much gone on the plan that it's how my kiddo feels, not necessarily what he shows on tests that requires a change in our plan of action. That feeling of the too full chest, like he can't get all the air out of his lungs is one of the indicators that my son (15 yrs) has some extra inflammation and infection going on deep in his lungs. Do your lungs sound clear when they listen with stethoscopes? Is there a little bit of crackle way down deep? If so, that infection can't really be caught by a normal sputum culture. My son's lowest lobe of the left lung gets congested more than the rest of his lungs, and only a slight crackle when he's worn down by infections. Combined with the crackle, my son's lungs feeling extra pressure and hard to clear with the general loss of energy and feeling low is the main indicator that he needs to go in for IV meds.

I don't know if it could be some of your blood sugars spiking (may not hurt to check blood levels before eating, and at 2 hours after to verify for a few days) or it could be that you're needing IV meds for 1-2 weeks to kick this, but go based on how your body FEELS, not just the numbers on a test.

Best of luck!!

 

[justbecauseicannotseeit]

lsveburg, thank you for the information, that's something to keep in mind! I'm pretty sure my Hgb was normal on my last test (I get petechial rashes sometimes so they checked out my blood cell counts and everything came back normal... still not sure what causes them, but no one seems too concerned since the tests were all ok) but that was almost a year ago so I'm due for annuals soon, so I'll ask about this...I hope Jenna is doing better now? Did she get treatment for anemia?

imported_Momto2, ugh sorry you went through all that, it does sound pretty familiar! I last did IVs about a year ago, and they didn't help a bit. Prednisone usually gets me feeling better for a little while. I think the diabetes possibility is something I'm really going to try and look further into... A lot of people have mentioned that to me and the symptoms seem to fit, unfortunately. Hoping it isn't CFRD, but it's worth a shot to check it out. Thank you so much for all the info!

TreasureGoddess this sounds a lot like me too! Every time a doc listens to my chest they are surprised by how clear it sounds, but when I get a bronch done they usually find some stuff deeper down. I only get a little bit of a crackle when I huff cough really hard, so it's probably down in the lower lobes, but it doesn't sound like much. I'm surprised, usually this time of year I am very crackly and wheezy! No sign of a wheeze at all. I do get weird pressure and discomfort sometimes, though I'm not sure if that's actually my lungs or just the muscles around my chest getting tight? There have been two many instances where I said I had a lot of chest pain/pressure and X-rays showed everything was clear, so I think I just pull muscles from coughing a lot. Thanks so much for your help and encouragement, I hope your son is doing well

 

[lsveburg]

Jenna is slowly regaining. Thank you for asking. I hope you find the answer, I dislike the feeling of not knowing.

 

[4hats]

Hello all. I don't come on these forums too often, but lately I've been struggling a bit and could really use some advice. I'm 21 w/ CF and have always been considered pretty healthy. My FEV1 is rarely below 100%, and I think the lowest it's ever been was around 90%. My resting O2 is never below 98%. Most of my lung problems are asthmatic, triggered by allergies. I often cough a lot but don't usually produce too much sputum. Although lately, whenever I do cough up, it's always either bright green, or a dark brown-ish yellow. Occasionally I get little tiny hard pieces of really dark green mucus... I have cultured positive for aspergillus in the past, so have been kind of worried I might be growing it again, but my last culture was negative (although it's rare that I give a good culture, so I always feel like I need a bronchoscopy to know what's really going on in there - last time they found MAC and had to keep doing bronchs to check the progress since the bacteria wasn't showing up in my regular cultures).

Anyway, despite my awesome stats, I haven't been feeling too well lately. I've been on oral antibiotics near constantly since I got rid of the MAC because I always seem to be coughing up this stuff, even though I don't cough up much of it, and I get a lot of sinus infections. I know it's sort of "normal" to cough up green mucus w/ CF so I feel strange being so concerned about a little but of it, but it hasn't become normal for me to have consistently green mucus until recently. I'm also worried all the antibiotics are overkill. I feel strange being on them all the time when my numbers are so good?

Lately I have been super out of breath at random times, even though I feel like my asthma is under control. It doesn't really feel like an asthma attack exactly, and it's kind of hard to describe, but I find myself breathing shallowly and feeling lightheaded and have to remind myself to take a deep breath. I find I can get plenty of air in if I concentrate on taking deep breaths, but almost feel like I can't get enough out? My lungs feel almost too big for my chest, if that makes sense. There's a weird pressure, but it doesn't feel like the tightness of an asthma attack per se. I'm sluggish most of the time, my joints ache, sleep a lot but still feel tired find it hard to concentrate, kind of lightheaded, REALLY really hungry, it kind if feel like my blood sugar is always low even though my glucose tolerance tests always come back fine. I eat nearly constantly but I've lost about ten pounds over the last 6 months or so. Still a healthy weight, but it's just strange since my appetite has been huge lately.

I don't know, I'm just really confused, because my numbers look so good but I feel not-so-good, and I was just wondering if anyone else has had a similar experience? Is it possible to have such a good FEV1 and still be out of breath? Is there something else I should try asking my doctors to check out? I get really nervous about being on antibiotics when antibiotics aren't necessary b/c I don't want to become immune to them or experience permanent side-effects or anything...I don't know, I feel like I'm worrying too much! I would really appreciate any advice anyone might have...

Thank you!!!

I see that you have cultured MAC before. Have you ever tried to treat the MAC, or are they just taking a wait and see approach? MAC can make you feel very sluggish, tired, like you don't want to get out of bed, low grade fevers (at times), night sweats (at times)......I've suffered with MAC. I'm on my second round of treatment for it. I too generally keep good FEV1's. Maybe MAC is something to discuss with your doctor?

 

[justbecauseicannotseeit]

Hello 4hats, thanks for your comment. Yes, I did treat the MAC with a combination of rifampin, ethambutol, and clarithromycin for a little over six months. The follow up bronch came back negative for MAC, and that was about a year and a half ago. Do you know if MAC has a tendency to show up again? I'm really thinking of asking for to do a bronch soon since MAC and aspergillus were both a problem in the past... starting to wonder if one may be hiding out in there again. I hope the MAC's not treating you too bad? How long have you been treating it?

Woke up today with a lovely headache/sore throat combo that definitely feels like an infection even though I'm still on the Mino. Wonder if that has anything to do with everything else that's been going on or if I just caught something else...gonna go get it checked out tomorrow to make sure it's not strep though

 

[4hats]

I treated MAC for 12 months starting in June 2013. I had negative cultures for 10 months and then I had a positive one while I was still on the treatment (rifampin, ethambutol, azithromycin). We stopped the treatment 2 months later to see how I would respond. A few months later I started becoming symptomatic again. Last month it was just beating me up. I had no energy, sluggish, low grade fevers, head killing me, etc.....I was miserable so we decided to start another course of MAC treatment. I feel much better being on the treatment and it has made a clear difference. I don't think we ever get rid of MAC. We just suppress it greatly while we are being treated for it. We are all different. Some may be ok for a longer period of time after treatment, but that was not the case for me. I also culture aspergillus along with staph. I hope you can get some answers soon and that things turn around for you!

 

[justbecauseicannotseeit]

Thanks for the information, 4hats! I'm glad you're feeling better on the treatment. I have a clinic appointment tomorrow, and I think I'll ask if they think a bronch would be a good idea to find out if I definitely got rid of the MAC or not. Probably wouldn't hurt.

 

[franzie2984]

I feel pretty similar to what you are describing. It seems like this has been ever since I was treated for MAC as well. My numbers are good and doctors dismiss what I say. I do have CFRD though, as well. No advice but good luck in your efforts!

 

[justbecauseicannotseeit]

Just wanted to say thanks everyone for helping me out w/ this!!! I've since started IVs, b/c although my FEV1 is still very good, when we looked back over the past year it's gone down about 10%. My last culture came back positive for MAC (I knew it) and pseudomonas (wasn't expecting this one). I've been on nebulized Tobi in the past, but I'm starting the Tobi Podhaler tomorrow. I've heard it's much more convenient but difficult to get used to the powder? Hoping we got to the root of the problem and things will start looking up w/ a bit of work Very grateful for all the input!