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Dealing with Asthma from a young age, at a Young Age
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SolarFlareWolf posted:
Heya, I just posted my "hi I'm new" post describing me and my asthma. I'm only 21, but I've had asthma since I was a baby. Although it's been reasonable and kind to me this year, I remember constantly suffering from allergy and asthma attacks in high school and elementary school. Even though it hasn't bothered me "a lot" this past year, I've noticed that my body has long since been completely out of whack.

I don't really know what to do about it, because the only thing I see ahead is more and different medications. I see posts from people my mom's age talking about having it for twenty or thirty years and struggling to control it. I struggle to control it and I've had it for twenty years too, but the problem is I've never had a year without it!

My asthma control suffered a lot in high school and I never got it back. I don't know what it was, but I have a lot of indoor and outdoor allergies and my school was an old building. A bad case of the flu (and walking pneumonia) kept me down and out for three weeks. I'm tired all the time, I'm quite the insomniac (nevermind that severe insomnia runs in the family) and that's related to asthma too. It's not foreign to me to wake up middle of the night wheezing and coughing.

Trying to figure out how to tame it, especially since I made an emergency room visit last winter, is hard. I have low stamina, especially during summer and winter when the environment is extreme, and after being on albuterol my whole life have a sensitivity to it everywhere but my lungs. I'm in the middle of a mild asthma flareup and notice my nebulizer not helping as much as I want, nevermind making my nose runny and such. It calms the wheezing for the night and then if I cough for any reason I hear myself wheeze. I look at the skin on my face and see that my eczema is flaring. That is such a reliable sign that my asthma is on the fritz that my mother often takes a glance at me and asks me if my asthma's been flaring.

It's scary. I don't know what to do, and at this point I'm thinking some of my problems are related to that very long term use of albuterol and lack of asthma control. Like the fact my heart rate jumps too much when I walk up a couple flights of stairs. I feel my chest tighten, but not necessarily from wheezing by walking fast up the street or jogging up steps. I'm tired and fatigued easily, my muscles get sore fast. True that may just be that I'm out of shape and can barely exercise without a flare up, but still.

The fact I'll have to start over with a new doctor soon isn't helping me. Honestly I'm tired of always being told to exercise. I do a lot of physical activity because I work with kids, but if that tires me out, if I can't breathe or get dizzy or a headache, then how am I supposed to exercise? Using my inhaler before exercise only shoots what little stamina I have in the foot as my heart rate jumps and limbs tremble from it being used when I'm not actually flaring.

I'm really upset thinking about this. I'm actually a hypochondriac, because I'm always worried about my health. I have had to do so for my whole life. Colds are special, better watch out for the flu, etc etc. I'm tired already....chronic illness sucks ass...

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sgbl88 responded:
Hi and welcome to the community,

Sorry you are having such a hard time.

It does sound like you need a good allergist to help guide you into a trully effective treatment regimen that will give you good control.

I totally can relate to feeling like a hypochondriac. My husband actually called me that in front of our kids. It made me SO mad. I asked my doctor if he thought I could be. He said that I definitely was not one. My main symptom, congestion, is not something a hypochondriac can dream up. As far as feeling like a hypochondriac because you are always concerned by your health, YOU AREN'T!! Would you consider a diabetic who watches what they eat a hypochondriac? NO!! They are only watching what the eat so that they can stay healthy. You are doing the same thing. The only difference is we don't watch what we eat, we consistantly watch what we breathe and must be prepared to deal with a cold or the flu should we get one. Being a germaphobe is a necessity for us.

I hope that helps you some.

Take care and
God bless.
Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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amcate responded:
Yes, chronic illness is hard. In my case, the asthma's been bad maybe 12 or 13 years, and mild for a year or two before that, and before that I didn't have it. It can wear on a person after awhile.

I'm not sure why they are telling you to exercise-to lose weight, for strength, for flexibility, etc. There's a lot of information, but in the second to last paragraph you mention using albuterol when you aren't actually flaring. I've not heard of that before, how do you use it? Normally they tell me to use mine when I have symptoms and when the peak flow is either borderline or below 80%.

I also get eczema which is now moderate by the internet questions.

In terms of controlling it, all I can say is I moved to the desert which helped, but still have some troubles. I also started an alternative health approach that also seemed to help. Still got a lecture today from the PCP about the fact I use prednisone, though. Don't know why he was blaming me, talk to my lungs or fight with insurance to pay for National Jewish is what I say. That is to say, I'm better than taking 4000 mg of pred a year, but still not where MDs like to have me.

In terms of what you see ahead as new and different meds, I can understand the concern with the future and what life holds and if there's hope (if I hear you correctly, but tell me if I'm wrong). It sounds like you want to get better, but are unsure if there is a way to get better and with hope in the future.

I don't think you're a hypochondriac for worrying about colds. I've had a hard time explaining to people that for me, a cold is life threatening. I hear also that you get tired of having to worry about every little thing (again, correct me if I'm wrong).

I had forgotten what it was like to not have to worry until a few months ago and had to remember what it used to be like (not the same story as yours, obviously since I got it as an adult) in order to relate to others. There's the humidifier, the twice daily peak flows, the dealing with medical people who don't know asthma, the being careful not to aspirate food, the lotions on the skin, the "is it too dry outside and I have to wear a mask", the "did I wash my hands", drinking enough fluids, etc. Anyway, you're not being a hypochrondriac to think of all these things.

I hope this helps you feel better. I'm shooting in the dark here, so if I make you feel worse, it's not intentional. Welcome here and feel free to say more about yourself.
 
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SolarFlareWolf replied to amcate's response:
Oh, I'm a hypochondriac lol I know I didn't specify why I feel that way, but I am. I have anxiety issues and I am a germaphobe. I don't mean hypochondriac in the "worries way too much about having freakish diseases" way, but in the "my body responds strongly to worry and stress about what it's feeling" sort of way. Like, I get stomach ailments from anxiety, but I also worry about whether I ate something. Basically, I feel a pain or malaise and worry about it and that worry makes it worse. That's what I mean. And of course then I worry I'm sick and it turns out I'm not once I calm down.

I do worry about colds a lot. I've been to the ER plenty of times and I never want to experience the level of illness I got in high school again. I was really sick then, having frequent flareups. The one and only time I got a flu shot I got the flu and walking pneumonia and ended up missing three weeks of school. It still took me a month to completely recover. But I do appreciate you telling me I'm not a hypochondriac to worry about that I've always been a bit of a germaphobe, but that makes sense since I've been an asthmatic my whole life.

My eczema was really bad last year. I get it mainly on my hands and face, and my hands get so dry that the skin cracks and bleeds in winter. Nothing I did really helped and it was frustrating. My facial eczema flaring is a sure sign my asthma is flaring too, like no joke. I can't swim because I'm afraid of drowning, too much like feeling the pain and anxiety of a bad asthma attack.

I couldn't move to the desert, being overheated flares my asthma, drains my energy and just makes me feel generally ill. I hate extreme temps period, but I will much prefer being cold to being hot.

They tell me to exercise because I'm overweight and it's good for strengthening the lungs. They also tell me because they've all got athletic asthmatics and think all asthmatics have that potential if they just "do it right". The "use your inhaler about 15 min before you start exercising" thing seems to be pretty common. It's supposed to preempt an attack so you can exercise with less concern. I've even found that advice on the internet. Of course, I've found it's counterintuitive for me.

I found the hardest thing is dealing with people who know me well, like my mom and boyfriend. My boyfriend's brother has asthma and said brother is an athlete, however after careful explaining he sort of gets it that I can't be that way. He still has a little of the attitude that I can get fit, but really the hard part is keeping him balanced between healthy concern and consideration and panic. He had to take me to the ER once and it really frightened him. I kept telling him I'd be fine but it was all he could do to keep himself under raps. I wasn't even having a super bad attack, I just had an empty inhaler and no alternative.

But then my mom, well she is a walking contradiction with my health and her opinions. She thinks all my problems can be easily solved with lifestyle changes and exercise (she recently hopped on the natural health bandwagon. I know all the info she knows and such but it's really just not that simple or that easy and she thinks it is.) But, I also know I really want to minimize medicine. I'm tired of medicine....

Anyway, you did help me feel better. And I feel you on the hand washing thing, I'm often teased by my family for washing my hands like I'm about to perform surgery
 
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SolarFlareWolf replied to sgbl88's response:
Since I'm now on an HMO plan it won't be that easy to stroll into an allergist's office. Especially when I'm just trying to pick a new PC doctor who seems decent. It really sucks that your hubby did that. My parents call me one, but I don't really care. It's different to put that idea into your kids' heads and to show that he doesn't take your concerns and worries seriously.

It can seem like we are when we're constantly worried about colds, which most people take for granted because they have healthy lungs. Right now I live with a smoker and work with little kids, so I'm definitely on the lookout for colds. Not only because, as I have felt in my chest this week, my lungs are currently inflamed and oversensitive but because I don't want to catch a cold from the kids or spread one to them. Not to mention I lose money because I don't have sick days if I have to be absent.

You are making me feel better though, thank you
 
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amcate replied to SolarFlareWolf's response:
Glad my words helped. It's always hard over the internet as I don't know the people, so I'm flying blind.

My father used to make fun of my asthma. Then he saw me during a really, really bad attack. I had been well controlled, but unknown to me there was an industrial accident. My lungs went south by the minute, it was a sharp, acute, and rapid decline. He saw me come in the door, unable to stand up straight, coughing and that clear fluid going everywhere, unable to speak, etc. He kept asking, "are you okay? What's happening?" He followed me to my nebulizer and looked confused. I got the peak flow 20 min after the neb, and it was still low, so I did another (MD said to piggyback in emergencies). It came up some more, but still was below the 80%. So, I decided to monitor peak flows every hour and prednisone was already in my system. I told my dad afterwards..."that's asthma-that's what was happening." He never made fun of me again.

Something I'm trying to learn regarding other people is I can't really control them, so I'm learning to let them say what they will and focus on what I can control. It's a process learning that, though.

It makes sense folks might want you to exercise/lose weight, but also every asthmatic is different and with differing levels of severity. It sounds like you feel they don't understand the reality you are facing in some way and so keep telling you to do something that you can't do. Again, correct me if I've misunderstood.
 
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sgbl88 replied to SolarFlareWolf's response:
HMOs stink. I could say more, but I won't.

Don't give up on seeing an allergist. You can get a referal to one if you work at it and your prinary care pushes for it as well.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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bpcookie responded:
My heart rate is too high. My Dr. wants me to go to a cardiologist.
 
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SolarFlareWolf replied to sgbl88's response:
I'll likely get one for a pulmonologist. I'm not really worried about allergies. I know what mine are and I think my body is overreacting because it's already hyperactive from the asthma flare. Speaking of which, still in the flare, though today was better because it was good weather for my lungs. A little too dry, but otherwise great.
 
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sgbl88 replied to SolarFlareWolf's response:
Hi,

I am sorry that you are still in a flare.

Glad you have "good weather' for you. My weather is terrible. Allergies had me on the edge of a flare, change to cold weather sent me over the edge. I am now on pred.

I hope that you are able to get the help that you need. Since you do have allergies, I would still recommend an allergist. Good allergy controll is essential to good asthma control. My two cents.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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amcate replied to sgbl88's response:
Sonya-sorry to hear about having to take prednisone. A friend of mine today complained that I repeat myself, and I had to tell him that the drug makes short term memory hard for me after over a decade of 3-4 bursts a year. He told me to write everythnig down, and I said that was unrealistic to write everything I say down for a month and then reread it before I speak to people every time to be sure I don't repeat myself. Anyway, it's a hard drug to be on.

In my experience of going to both pulmonology and Allergy, Asthma, and Immunology, I didn't get anything from the pulmonologist that the Board certified Allergy, Asthma, and Immunology couldn't do with the exception that they ruled out other common pulmonary conditions. So, I agree and would start with a Board certified Allergy, Asthma, and Immunology person unless other pulmonary conditions are suspected. In the end, though, I guess it all works out no matter which way you go-neither one is a horrible choice.
 
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SolarFlareWolf replied to sgbl88's response:
heh, yeah, Hurricane Sandy killed any good weather. I did manage to get a new inhaler recently though, but now it's quite cold and wet out, which my lungs don't really like. I'm hoping to have a real doctor's appointment soon, and I'm really hoping I don't need any pred. I hate taking prednisone. No matter what you do that crap tastes nasty, not to mention just making you feel downright sick and yucky.
 
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SolarFlareWolf replied to amcate's response:
I'll see what I can do about the doctor thing. Didn't know there was much of a difference. And I feel you on the short term memory thing, sometimes I lose track of what I'm saying right in the middle of talking lol
 
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sgbl88 replied to SolarFlareWolf's response:
Well, I am glad that you survived the storm. Sorry about your weather woes. I pray it doesn't affect you too much.

I have family in NYC, many friends in NJ as I used to live there, and a friend or two in PA (one from this community). I have been watching the storm pretty closely.

Pred stinks!!! But, when it hurts to breathe, or you just can't breathe, what choice do you have? I haven't had to take it in about a year, which is amazing for me. I had been on it about every four weeks for awhile. I fought going on it, but when breathing hurts,...

Stay safe.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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amcate replied to SolarFlareWolf's response:
I don't know a lot about pulmonologist since they just said the Allergy, Asthma, and Immunology person was doing as good a job as can be done and they couldn't find anything else wrong that was not already ruled out, though they didn't test for rare things. As far as I know, the pulmonoligst is better at ruling out things like alpha-1 deficiency that can mimic asthma, and the Allergy, Asthma, Immunology folks are better at teaching you to avoid allergen related triggers and they do allergy shots. As far as I know, they are both good starting points, but maybe others with more experience with pulmonologists could say more.

I laughed at the short term memory joke. I noticed issues with it a few years ago and felt stupid since I was always considered intelligent. I did an internet search, and many pages came up stating there was a relationship with severe asthma, prednisone use, and short term memory problems. Some of them claimed it was due to the prednisone, some claimed it was due to the inflammation and things in the blood from chronic inflammation that damage areas of the brain not protected by the blood brain barrier. It's the internet, though, and not peer reviewed journals, so who knows if it's accurate. However, there are a number of internet pages that state there is a relationship and I couldn't any that state otherwise. A friend of mine has been a nurse for 46 years, and she has pulmonary issues and rheumatoid arthritis and took 20 mg of prednisone a day for 15 years and currently takes 3-5mg a day. She says she has the same problem with short term memory due to prednisone (and no, she's not been diagnosed with dementia-all other cognitive functions have remained intact.)

Mostly, I send him an email, and I recall I sent the email, but after about 30 minutes I can't recall exactly what I said. So, when we next talk I tell him the same thing, and he gets aggravated. There were also problems with planning Christmas vacation since I was getting information from different years confused. I'm 40 years old, so it's not normal.

So, it is what it is. I once expressed concern to the allergist about it all, and he said, "well, how does 6 minutes of brain anoxia sound?" Then again, I probably already told you all that...I can't recall for sure .....what was my name again?


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