Trouble Breathing...Again

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Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/21/2008 3:32 PM (GMT -7)   
Hello Everyone,
 
It seems since early Fall I have been struggling with issues regarding my breathing, lungs and inflammation in my rib cage. I've had x-rays in which they said they saw a few spots, but when they did a ct-scan everything looked fine. They put me on prednisone burst for awhile and it seems to help for a bit, but then within a week or two I'm right back where I was.
 
This week I noticed my energy just has not been what it has been, I have been running down quicker than normal and seem to have begun to have to slow down due to shortness of breath as well. Today, my husband and I went to the grocery store to get a few things and I literally started crying because I just couldn't breath and keeping up a normal pace is long since gone. I had to stand at the end of the aisle and tell my husband what I needed, the whole idea of the situation has gotten me down.
 
I know the weather is colder than normal and I don't know if that has something to do with it or not. What I don't understand though is it doesn't hurt to take a breath, I just have shortness of breath and get winded very easily. Let me add I have never been a smoker, but grew up in a home where everyone smoked, so I've always worried about issues from second hand smoke. I don't know if this is issues from Lupus or something else. Any thoughts?
 
I just don't know if I should mention it yet again to my doctors, I feel as though I am constantly telling them I can breath, and if they say nothing shows up on the ct, what else can be done? I'm so lost, confused and depressed.
 
Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/21/2008 4:33 PM (GMT -7)   

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! tongue try not to do to much and if you need to rant we are all here.

hugs

carol



 
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 12/21/2008 4:48 PM (GMT -7)   
Hi Melissa,

Carol has given you perfect advice. I use albuterol, and, yes the cold is horrible. There have even been times when I don't realize that I am struggling to breathe and my husband will look at me and say, "your lips are turning blue, use your inhaler". Sometimes I get really irked because he is ALWAYS correct. A couple puffs and I can't figure out why I didn't notice how bad it was. If at all possible, you should get into see your doctor as soon as possible. Carol is also correct in that this process (not breathing) puts an additional strain on your heart and you really don't want to mess with that.

Hope you feel better, soon.
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac, Ambien CR.
Daily Supplements: Multi-vitamin, Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/21/2008 4:53 PM (GMT -7)   


I didn't know if what I was experiencing is normal or not since the CT Scan came back normal. I just know this is really becoming an issue for me. I try not to over react and call the doctor about every little thing, but when you are truly having a problem breathing, well, you know all to well how that is. Perhaps it is inflammation again, I guess that could cause this. And the inhaler would probably help that. I do take prednisone. I just dropped from 10 mg down to 5, I guess I'm going to have to go back up. So, the issues I feel in my rib cage, you felt that too? It goes right along with the shortness of breath? My rhuemy told me before it was inflammation in the lungs and rib cage, I just don't understand why it keeps coming back. Sigh.

The good thing is I am done shopping, if I need anything else this week I'm sending my son or husband, I'm not going out again for the rest of the week.

Thanks again.

Melissa


Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 12/21/2008 9:36 PM (GMT -7)   

Hi Melissa,

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.. confused ..it is real. 

Lisa


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/21/2008 10:11 PM (GMT -7)   

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. rolleyes 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

hugs

carol


 
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/22/2008 9:51 PM (GMT -7)   
Hi Melissa:

I took have issues with shortness of breath with walking. My lupus has attacked my lungs and heart both. There is a possibility though that you may have pulmonary hypertension. Pulmonary hypertension causes shortness of breath very easily. Carol and the other have offered up good advice, but I thought I'd put out there that you should mention to your doc about the pulmonary hypertension.

I was recently put on oxygen at home and when I go out because my 02 stats drop. Another thing you could ask the doctor to do for you is have them walk with you with a monitor on that measures your 02 stats. This will give key information to your doc and it will answer if you saturation levels drop when you walk distances. That how we found out that when I walk more than 500 feet my oxygen levels drop to 82%, it should be between 96% - 100%. Also, one other thing that may cause shortness of breath is anemia. If your hemoglobin is to low it will make breathing difficult. These are just some suggestions to put out there for you doc.

I hope you begin feeling better soon, don't let them brush you off. Have them test you and make sure that you oxygen levels aren't dropping.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/23/2008 12:45 PM (GMT -7)   
Barbara,

Thank you for your advice, you have offered up some things I've never thought about. I didn't realize that anemia could cause shortness of breath. I actually went to my doctor today, when they took my oxygen it was 97, I told the nurse, that's fine, but if you'll walk around the grocery store with me you'll see it will not be so good. My heart rate was up though, 102 at a resting state. The doc ordered a chest x-ray and EKG, depending on how those came out she will go from there with a stress test and echo. She said she could here the leaky valve I have, she thinks that could be part of the issue.

Do your breathing issues get worse in the evening? I am having a horrible time sleeping and I think it has something to do with my breathing.

I hope you are feeling better as well.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/23/2008 2:32 PM (GMT -7)   
HI Melissa,
 
I have a leaky mitral valve.  The condition I have is called Libman Sach's Endocarditis.  Where the mitral valve gets inflammed and causes the valve to not close properly.  As soon as I got on the prednisone everything cleared up, but I needed to be on 40mg for about 10 months in order to "fix" the problem.  I haven't had an issue for about 7 years now.  Even my murmer is gone.
 
I did have a very fast resting heart rate, and palpitations which prompted my docs to do an echocardiogram.  That showed everything. I hope your echo tells what's going on too. 
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/23/2008 4:08 PM (GMT -7)   
Thanks Ginny,

I just got a call from the doctor's nurse, they have scheduled me for an echo on the 29th. I guess we'll see further what's going on then. I actually used to be on blood pressure medicine to lower my heart rate for this, but the last time I had an EKG and all, about 4 years ago I guess now, the cardiologist that I saw didn't think all that was necessary. Of course at that time my lupus was in a state of remission as well, so things were very calm. Unfortunately, I cannot say that at this point, I'm sure the inflammation that has plaqued my body is also affecting the valve, so you have a very good point. I really, really don't want to go up to 40mg of prednisone, let's hope there's another answer, if not I'll do what's necessary.

I appreciate all your support and input. It truly helps in times like these.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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