Are there different kinds of shortness of breath?

[BookNut]

The last thread I posted was a bit of a downer. http://www.wegeners-granulomatosis.com/forum/hospitals-clinics-doctors-nurses/4120-need-cleveland-clinic-doctor-recommendation.html

I felt I was headed down the prednisone path again (definitely NOT the primrose path!). Today I am feeling a bit better and MIGHT be able to avoid the pred. Really hoping the long term antibiotics might be doing their magic. My sinuses are feeling clearer and the wheezing has definitely improved.

What is still a little discouraging is my level of shortness of breath. I thought I would be able to help my poor hubby out by moving the garbage and recycling outside. He is showing signs of stress since he has been doing everything for weeks now. I did it - but you would think that I had just climbed Mount Kilamnajaro.

Hence my question about levels of SOB.

When the asthma is in full force, the SOB is accompanied by the "elephant on the chest" feeling and a feeling that the airway is contracted and I can't pull air in fast enough. My albuterol gives me some relief - but I can not push things, as the wheezing and SOB will start in again almost immediately. The bathroom is a major trip for me. There is NO WAY i can do anything as strenuous as getting a simple meal.

The SOB I have right now is different. Less intense - but it is not going away, and it is definitely changing my life. I am wondering if it is something else entirely. Like maybe after being sick since April 28, I have lost strength. Maybe building up strength is the answer? The elephant has shrunk to feel more like the weight of a heavy dog. Any little episode like moving the garbage outside, means I have to sit down and gasp for about 5 minutes. My heart rate goes up over 100. Eventually, the breath comes back again, without needing the albuterol nebulizer. I am less fatigued in general than I was before. But I feel like I have lost my stamina. My husband gets worried and starts doing things for me - but I try to resist and do stuff anyway.

Do you think this new phase is just because I am so out of shape? I have been doing a little Yoga. Oddly that does not get me as out of breath as walking and lifting do.

I guess I will just keep resisting. I think it is good news that I need less meds. Hope to hear from someone else out there who has managed to gain strength, avoid SOB, and get steadily better.

Thanks as always for your help and willingness to listen!

[vdub]

Out of shape was certainly the case for me. As I started feeling better, I started doing more and I'm in reasonably good shape now. I'm not going to go and run 10 miles like I did 5 years ago, but I'm doing ok. I think it will go away if you feel good enough to get more active. In my case, I also lost some weight, both water weight and fat weight. I think the water weight was on my chest and made me feel short of breath.

[BookNut]

Thanks! I hope to gradually get back into better shape. I will continue my yoga, because it helps the back pain. Then I will start walking up and down my very short street, and build from there. I used to walk 3-5 miles on most days. What worked best was not to think in terms of miles at first - but to think in terms of minutes. I started at 10 minutes one way, and 10 minutes back. Eventually, I worked up to a total of 90 minutes which was about 4-5 miles, depending on how my back was feeling. That was before all this mess started. So - I will try a similar technique. Only this time, I will start with only 5 minutes each way and build up very gradually. I will stay at 5 minutes till I can do that without gasping before I up the time.

[annekat]

I think the SOB from asthma and from sinus drainage are two different things, although they can coexist, I'm sure. As a kid, I had a lot of asthma but there was not the sinus drainage accompanying it. I think it was related both to allergies and stress, and a lot of it was the stress of having to deal with it on my own and not having it taken very seriously. When my mom got asthma later in life after developing a job-related chemical sensitivity and having allergic-like reactions to all kinds of things, she apologized profusely to me for not understanding what it had been like for me. Asthma can make a person feel their life is in danger and the panic of not being able to breathe can make it worse. I had a few OTC inhalers and other stuff which wasn't the best. I think there is better stuff available now than what they were prescribing then, anyway. I did get albuterol eventually but it can easily be overused and create more problems. I find that the steroid inhalers are pretty good, though I'm not currently using one.

Anyway, I guess I must have always had some sinus drainage, but never anything like the amount I've had since the beginning of significant Wegs disease activity, counting before I was diagnosed. When stuff gets into my bronchii and I have trouble coughing it up, because it is too thick, or for whatever reason, it can definitely feel like asthma. But I take a liquid expectorant when necessary, and when some stuff gets coughed up, I immediately feel better, like I can breathe again. Although it may take some time to get it coughed up sufficiently. I don't remember ever coughing stuff up when I had what I consider to be mainly allergic asthma as a kid and young adult. I don't know why I don't seem to have that kind of asthma now, or at least not often. I did have bronchitis a lot as a kid, which may have contributed to it, making the bronchs more susceptible somehow; I don't know.

Anyway, yes, I think there are different kinds of SOB but it can be hard to tell them apart or to always distinguish their causes or to know how to relieve them. I know your docs say your breathing problems are sinus related, Jacquie, which may be true, but it may not be the whole story. Perhaps when you are in Cleveland you can see a pulmonologist and an ENT who might have some different ideas about what is going on and how to help you. I hate to think of you struggling to breathe, and I do know what it's like.

[vdub]

I don't think I could ever walk... I'm just too hyper. I would feel that I've lost 90 minutes of productive time since I was trapped into doing just one thing. Even when I'm at my computer doing e-mails, I usually have the tv on watching a documentary or something similar that doesn't take total concentration and will have 3 or 4 windows open to interesting things (usually on wikipedia), as well as a news ticker running across the bottom. My mind races from one thing to the next and I never have enough time to do all that I want. But that's when I'm feeling well. When the wegs grabs me, I totally crash and sometimes sleep for a couple days....

[lag713]

I'm new to asthma (dx Monday but probably had it most of my life) so I don't know how helpful I may be. I have exercise induced bronchoconstriction which is essentially exercise induced asthma. Exercise is a trigger but I always thought I was out of breath because I was out of shape. This issue is further confused because I can improve my symptoms by a.) controlling my asthma with medication, b.) getting into better shape by working out, and c.) avoid the trigger (but not working out is a terrible idea because things will only get worse!). Your change in SOB may be coming from managing your asthma better or getting into better shape.

The only advice I can give you is to make sure you're controlling your asthma medically and continue being active within safe limits. You do not want to overdo it and have an asthma attack. Walking is a great idea. I recommend getting a pedometer so you can track how much activity you're getting so you can set reasonable goals. I like my Fitbit but it's pricey and not a necessity. Keep up the yoga! It's great for back pain. :thumbsup:

https://www.fitbit.com/store?gclid=Cj0KEQjw0POdBRCq3arGgYD05pMBEiQAmiUeTu GZwnc0NOu2243KhLplQ8Sfxx94usAhAURkqRZE5HcaAimj8P8H AQ

[annekat]

Re vdub's post above: I wish I was a little more hyper. Walking is something I could do and I'd enjoy it once I was out there doing it; it's just getting myself in motion to do it. I think it would help some of my problems through better circulation, working of muscles and joints, aerobic conditioning, the whole schmear. I don't do it because I'm either being lazy or I'm distracted by things that need doing, often ones I've procrastinated. I use Wegs as an excuse for being lazy sometimes, I admit. Hours can pass without a lot getting done. But like today, when I had to take a nap mid-afternoon despite sleeping well last night, I felt it was the Wegs and therefore was justified. But walking would be so easy, just go out on the road and do it, take a camera, maybe, and I'm pretty sure I'm physically capable of it at least for a mile or so.

[annekat]

I've heard of exercise-induced asthma and cold-induced asthma and may have experienced them both, but only in a transitory way; in other words, once I relaxed or got warm, it would go away. I realize they may be more severe in some cases. Asthma and SOB are a pretty complicated subject, it seems.

[vdub]

It has taken a long, long time to get where I am today. Lots of drugs, lots of dosage changes, and lots of testing and doc appts. I don't know how long it will last, but I do sense it will fade someday. Four or five months ago I was still wondering if I would ever be able to do much of anything again. I just hope it lasts a "little while" -- at least long enough so I can remember how I'm supposed to feel.

[BookNut]

Thanks everyone for all the ideas! I think I can start walking - but very carefully. I suspect that my husband will follow, trying to hide behind trees etc. so I don't see him. :rolleyes1:

I don't think my asthma is either exercise or cold induced...but who knows what has changed in the last few years. Winter is my favorite time to walk. The crisp, cold air always felt good in my lungs. Humid days are impossible for me. I never liked them - but now humidity definitely brings on asthma.

I am SO glad Anne that you are no longer using otc asthma inhalers. They are considered to be quite dangerous by most asthma doctors. Glad your mother finally recognized how difficult and scary asthma can be. I am a fairly relaxed person - but my husband had serious asthma which is now - thank God - under good control for these past 10 years. He actually stopped breathing one time. We were blessed that our neighbor had just got her ENT license and was able to get him breathing again. the ambulance is close - but she was closer. I am eternally grateful for that.

Walking.... It was a revelation to me. I HATED any kind of gym kinds of machines or aerobic workouts etc. But I wanted to lose weight and nothing was working. I finally had an epiphany. I was walking to my car after work, and I thought....hmmm...why not just keep walking. No reason why I should go home first. It was SERIOUSLY a treat for me. It eventually gave me 90 minutes of uninterrupted peace and quiet. I worked with noisy teenagers and loved them. I love my husband who is a TALKER. I grew up as an only-child, so was used to extended periods of along time and I crave time by myself. So - the walking was a perfect answer for me. I lost 18 pounds and changed my body shape and stamina. I REALLY want to get back to it. Here is my before and after pictures. The Trudge Report « Wanderings? (http://wanderings.edublogs.org/the-trudge-report/)

Alas, I've gained back half the weight I lost due to inactivity and pred. I want to get going again. Here is hoping!!

Vdub - you might find it calming to take some short walks. You would be amazed at what you see when you are not whizzing past things in a car!

Lag713 - I will watch out and see if the walking brings on breathing problems. I hope not, as I really loved to walk back when I was able.

[annekat]

Seriously, Jacquie, I only used those OTC inhalers because they were the only thing available to me in the 1960's! Believe me, I could tell they only made things worse if I overused them. So I spent time just not being able to breathe, sitting on my bed, leaning into propped up pillows, waiting for it to pass. And my dad was a doctor! Just not that kind. I make him sound like a monster. He wasn't; just ignorant about that branch of medicine, plus somewhat of a head-in-the-clouds guy. My doctor was Dr. Lendon Smith, the "baby doctor" in Portland, OR, who used to be on the Johnny Carson show occasionally. He treated me for bronchitis with penicillin shots, which hurt like hell. By the time I really got into asthma, I was a little old for a pediatrician and we were about to move to California, anyway. I had a doc there but don't remember him being much help, or I wasn't having asthma at the time of my visits to him. I got albuterol at the Davis Free Clinic as a young adult. It helped, but like with the OTC inhalers, could not be overused without loss of effectiveness. To this day, if I couldn't breathe and had nothing else, I would use Primatene Mist in an emergency! Have you used the steroid inhalers such as Flovent or Advair? I imagine you probably have. I don't see much danger in them, and they work well as a preventative. I have a prescription for Flovent but haven't filled it yet, as not really needing it right now. More expensive than any of my other meds. Don't even have albuterol at the moment, though probably should.

BTW, I think you look very pretty in both the before and the after picture!

[BookNut]

Gosh Anne...you have not got much of a break between the asthma and the Wegs. I use albuterol in a nebulizer, and only use the pocket rescue inhaler when i am out. I sure can relate to spending time propped up with pillows!

[annekat]

Gosh Anne...you have not got much of a break between the asthma and the Wegs. I use albuterol in a nebulizer, and only use the pocket rescue inhaler when i am out. I sure can relate to spending time propped up with pillows! Well, it's been a long time since I had any real asthma. Yes, I'm sure the nebulizer would be a better way to take the albuterol. I've never had one, though my mother did toward the end of her life. I still prop with pillows but now it is not asthma but sinus drainage into my bronchs making breathing more difficult sometimes or making me cough too much while trying to sleep. Maybe the Wegs meds are keeping the asthma at bay. I've had little of it since using pred for sinus infections, back before my dx. I'm thankful for that, but should probably have some good meds on hand just in case.

[Jaha]

Before I knew what was wrong with me, I self referred to Cc, to a pulmy in July of 2010, Dr Daniel Culver, great doc. He took charge and retrieved all my records,surgery reports, tissue samples and Ct Scans from the local hospital, who was clueless. When he received them all he gathered a team of docs to work out an accurate DX and plan of care. He call me at work in latter July and said that they were 99% sure that I had wegs and that they needed me to a rheumy and have some more testing. He hooked me up with Villa-Forte on 9-2-2010, he personaaly walked down to office to meet her. My Husband and I stayed overnite and she had me come in the next day to start treatment. I was very impressed with Dr Culver. Good luck!

[BookNut]

Thanks so much for the recommendation. He sounds great!