Trouble Breathing.....Yet Again

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

Hi Melissa,

I am so sorry that you are not well again. The weather may play a part in it but if you are not getting an answer from your doctors that worries me. I would think that maybe they would have referred you to another specialist or tested you further. Have you also seen a pulmonologist or a cardiologist? We do know that second hand smoke does affect people. Were you ever tested for asthma? I'm just throwing things out there. I can sympathize with you breaking down and crying. It seems like you have one or two good days and then you are back to feeling awful. Again, I am so sorry.

Hi Chris,

No, I haven't been to see a cardiologist or pulmonologist, but I am seriously considering it. I am not happy with how my rhuemy is treating this, don't get me wrong, I love him as a doc, but I really don't think he is taking this serious enough as it has recurred way too often since August. I have always been such a strong person and for me to break down and cry in the store, that is the last straw for me.

Thanks so much for your support, as always I appreciate you so much! Sometimes I just need to vent to people who can really relate.

Melissa

Hi Melissa,

I think that is a good idea to see a pulmonologist or cardiologist. It is too important to ignore and going on for too long. Sometimes we have to take matters into our own hands and pursue another option. You know how it is, there is a specialist for every part of our bodies!!

Melissa

I agree on seeing the other drs!! For me i have said i have copd which is enought of a problem within itself. But my dr sent me to the other specialist.
The cardiologist done whats called a two sided heart cath on me and said the part that susplied and carried the blood back and forth to my lungs were constriting and that was also was causeing me to be tired feeling and haveing a hard time breathing.

This might not be your broblem but wanted you to know your not alone. And there is a reason for the way you are feeling and theirs an answer, you just have to find it and you will!!

guess who

Take care
Ray

Thanks Ray,

I just want to scream sometimes "when does it ever stop!" I try and try to be positive and keep a good attitude, but sometimes ya just get down, ya know.

I am so tired of doctors and medicines. I know you all are too. I don't mean to have a pitty party here, I just am so down. I am just waiting for that right cocktail of meds to come my way and everything to be good for a few weeks, hey maybe even a few months..wouldn't that be nice?

I called my doctor today and actually have an appt tomorrow at 11am, of course the first thing out of their mouths was "go to the ER, you'll get faster results and if you're having chest pains you need to be seen right away!" I was so mad, I said, "first of all I am calling because unless the chest pains are so bad I can't stand it I'm not going to the ER, it's too expensive and they need to treat real emergencies and second of all I am smart enough to know when to call a doctor or go to the ER. Now please see when your next appointment is available." I guess these people think we are idiots or something, I'm not sure, but I for one do not run to the ER for every sniffle, I can't afford too, I have a $200 co-pay for each ER visit and the wait is too long and the people there are coughing and sneezing all over you, it's the last thing I need.

Now that I've whined enough, I'll close by tell you all thank you for listening and I'll let you know how my appt goes tomorrow.

Melissa

Hi Melissa:

I'm so sorry to hear about your breathing problems. You sure have been dealing with a lot, lately. I don't have any advice for you. I just wanted to let you know I'm thinking about you.

I know how you and probably all of us feel about having to go to the ER. It is not something that any of us want to do especially at this time of year when everyone else there is so sick. The last thing you need is to catch something else on top of everything you are already going through.

Good luck tomorrow at the doc's office. I will keep you in my prayers and hope that you can find some relief. You deserve a break.

Don't worry about venting - that's why we are here. I wish I could do more to help you. I can listen - hang in there

Melissa,

I have been having problems breathing for at least the last year...even before the start of the Lupus symptoms. My husband thought it was related to my weight gain, although the weight gain had to do with my quitting smoking! And although I mentioned , at every rheumy appt, that I was short of breath and had difficulty breathing at night with a dry cough, I guess she didn't see it as an issue. I was told to have my GP check for upper respiratory infections.

After going back to my GP (for the third or fourth time and telling him, yet again, that the breathing symptoms had not gone away but the Prednisone burst that the rheumy gave me for joint pain helped with the breathing considerably, he sent me to a pulmonologist last week.

So last week I was dx'd with asthma and given both a steroidal daily inhaler and an albuterol inhaler for when it is really bad. I was concerned the asthma was due to my 2 dogs, cat and my big dusy Cockatoo parrots. Fortunately, my asthma is not allergy related at all.

So.....my suggestion, based on my recent experience, is to keep mentioning the symptoms to your rheumy, but go to your GP and keep "bugging" them until they listen. My GP is a great doc, but he kept thinking it was Lupus related and rheumy kept referring me back to him as she thought it was an upper respiratory infection related. It just had to be very persistent .

Good Luck! I hope you feel better soon.

Hugs,
Beth

Well, I just got back from my doctor, she took a chest x-ray and EKG. She's going to see how those come out and then go from there with a stress test and/or echo. She seems to think it's more my heart than lungs. She could hear the noise from the valve more than normal, my C02 was 97, but my heart rate 102. I told the nurse to walk around the grocery store with me and she'll see that number won't be so good.

Anyway, with the holiday I'm sure it will be Monday before I hear anything.

Melissa

That's a good start, Melissa! I forgot that they did a chest x-ray, too. But the chest x-ray was clear.

Beth