Hi Melissa, I'm working on getting listed for a lung transplant so I am pretty knowledgeble on this stuff. (it's the only thing I can say that about). lol. Anyway. If you dfon't have any inhaler call your doctor tell him you need which ever one he thinks will work best for you. I'm thinking albuterol, next yes absolutely the cold will cause this. Being in a cold church or grocery store will cause this. Anyway it's not perfect but what will help is you go to the pharmacy and get some of those masks like they wear at hospitals. When you go outside on anywhere cold put it on. They tend to get a little most from your breath but at least they will keep your lungs from slamming shut. Also you may need to be on a small dose a predisone thru the winter. maybe 10 mg. just for the irritation. Since your lungs are already irritated you should try to avoid thinks like household chemicals or going down the laundr soup isles at the grocery store. Try parking as close as you can get to buildings or have someone drop you off and go park. It's better to get out of the cold as soon as possible. Bottom line if you are having a lot of problems you just have to stay home. I spent all last winter at homer because I could not walk into the church from the car which was about 30 ft with out gasping for air and feeling like my lungs and ribs were being sucked into my belly button. (well you know what I mean). Just a collasping feeling. The more you do to protect them the better off you will be.
The good news is they don't see anything wrong. I assume they will check again in a few months to make sure that the spots aren't growing? If they don't mention it you meantion it to them. Somtimes when I'm having trouble I'll lay on the bed and put vick on my chest and use my heated corn bags. or heating pad. that seems to help some. Getting tired from not having enough 02 is totally normal. I can't go anywhere for more than an hour without having to take a ap. I did some shopping the other day had to be gone 6 hours. I slept for a day and 1/2 to recover. You might ask your dr. for some cough syrup with codein when you are really bad. it help relax your brochial tubes and gives you a break for a bit to get some rest. Well I have to sleep for church so I will check back in tonight.
p.s. and for goodness sake if you need to use a cart use one. your lungs and your heart are connected. the harder your lungs work the harder your heart works. and if youthink you look stupid that's too bad and if anyone stares at ya run them over! try not to do to much and if you need to rant we are all here.
I just wanted to mention that I have often had the same problem with feeling short of breath, and I actually was having some of it again tonight (along with feeling ill and tired). I completely understand your frustration and feeling scared not knowing why it happens. I have been wondering why it happens for a long time now, and wondered if anyone else with lupus had the same problem. What I find interesting is that it mainly happens whenever I get the really bad fatigue and unwell feeling. The only way I could explain it to anyone would be that it seems as though I'm so tired, that I can't breath properly. And it scares me a lot every time it happens. I can say that I haven't had a problem with it for awhile now.. like a month or two, until today. And that makes sense, because I have been on an increased dosage of plaquenil for the last month and a half, and have been feeling somewhat "normal" lately for the first time in a LONG time.
I hope more people will respond, maybe there are others out there like us. I just wanted you to know it is definitely not in your head.. ..it is real.
Hi Mellissa, me again. first I want to say I reread what I had posted to you. WOW I'm amazed you could even make sense of it. what I wouldn't do for spell check. I just wanted to say that yes it's not uncommon to have the pain in your rib cage. lots of lupies have it. Also any time you are having breathing problems you need to keep an eye on swelling in your legs and ankles. try weighing yourself everyday. There is always a possibility of your lung lining filling up with fluids. You don't want that to happen. I take lasix every day to make sure I don't retain to much fluid.
You mentioned going from 10 down to 5mg of pred. I agree you may have to go back to 10. That seems to be the magic number. A lot of people on here can't get below 10mg without having problems.
keep us informed