summer

Problems Breathing!

11 posts in this topic

Hi,

I have had a few health problems the last few weeks and am wondering what your thoughts or opinions are.

 

For the last couple of weeks I have been getting SOB (I have had this on and off since I was first diagnosed in February this year). The SOB seems to come on in the late afternoon /evening and can last for hours at a time. I also have been having breathing problems, when I take a deep breath it sometimes hurts it feels like I am sucking in icy cold air which takes my breath away. The weird thing is it hurts more when I shallow breathe. This can be so severe that I find it hard to talk or eat and it is uncomfortable even when I am laying down. Also when exhaling I shudder.

 

I have had a consultation on Tuesday with my Cardiologist to try and sort a few problems out, and to hopefully rule out PH. He is sending me for a six minute stress test in a couple of weeks, and if he is still unsure I shall be having a right heart catheter procedure done. He doesn't seem to think that the breathing problems have anything to do with my heart.

 

During the consultation my cardiologist examined me and pressed on my upper part of my back along my spine and asked if it was sore. I said yes, he then mentioned that this sometimes is an indication of heart problems. Apparently there are nerves that run from the heart under the rib cage that go into the spinal area and if there is a problem with the heart it can affect the back area.

 

I have also had a bad viral/flu (it is winter here in Australia), and am all better except for a phlegmy cough which I have had the last 3 weeks.

 

Has anyone had anything similar especially with the breathing problems.?

I am not due to see my rheumatologist now for 6 weeks. I am also having another Pft in two weeks time.

 

Thanking you all in advance

Celia :unsure:

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Celia, it all sounds very painful and distressing. I am glad you are getting all of this looked into and hope you can get some resolution soon. I wish I could help more, but I don't have any experience with lung problems to share with you. Perhaps you can find something helpful on the ISN's Lung (Pulmonary) Overview page.

 

I was fascinated by your cardiologists comment about the back pain. I hadn't heard this before.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Celia,

I have ILD and your symptoms are very similar to what I experience. I do get SOB and when I try to take a deep breath it feels like I have a huge rubber band around me and I can't get my lungs to expand. I went through chemo last year for this and I have been feeling great until this week. My symptoms are back and it is so frustrating feeling like this. Go for all of your tests and hopefully the dr.'s will have an answer for you.

When you have your PFT done, ask for a copy of the results. Let us know how everything goes!

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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ced,

I have ILD and it isn't easy. I also have PH. I attribute my constant shortness of breath to both. I see a super amazing pulmonologist who knows lots about PH. I hope your doctor is well versed too.

 

6 min walk test isn't too hard - but be very honest. My right heart cath was easy, hope yours is too. Please take it easy and rest till the test results are in.

 

hugs + health

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Celia,

I am sorry to hear you are not doing so well right now. I have ILD but have not had symptoms in over a year which I attribute to getting on medication that works for me. To clarify, I do have shortness of breath when I exert myself or if I have too full of a stomach, but no longer when at rest. Also, I do not have pulmonary hypertension so don't jump to conclusions that that is why you have shortness of breath. My Dr. also told me the shortness of breath could be from a weak diaghram.

 

I STILL have the feeling you describe, like I am breathing in cold air. My rheumatologist believes it is from problems with the esophagus, not my lungs.

Maybe that is your problem too.

 

Be good to yourself and don't exert yourself.

 

Lots of love,

Jennifer

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Hi ced,

 

I have that cold air feeling too, usually in the morning. Feels like my esophagus is raw and air passing over it makes me want to cough. I have to take short shallow breaths until it goes away.

 

Take Care,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Celia,

I have many of your symptoms as well. I literally can't breathe in cold air at all. When I go to the grocery store, I have to do the freezer food shopping very quickly or send my hubby to do it (if he's with me). I had to leave a store this weekend because it was so cold in the store that I couldn't stop coughing and my toes started turning white!

 

I do have a very mild PAH and pulmonary fibrosis in the lower lobes; however, I think I also have Raynaud's in the lungs. It makes sense that breathing in cold air causes your lungs' blood vessels to constrict just like the ones' in the fingers. I have found that I can't drink anything with ice in it, or eat anything that it really cold. It just hurts to much!

 

I wear a turtle around my neck in cold weather. It's great because I can pull it over my mouth/nose and it's loose enough to still breathe.

 

I'm glad your seeing your cardiologist and rheumatologist. These are symptoms not to be ignored. Please let us know how your tests turn out.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

Oh my ######, I learn something new every day!!! I knew nothing about Raynaud's in the lungs. Wow. Thanks for the link. Do you know how you know if you have it?

Jennifer

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Jen,

I have no idea how something like that is diagnosed. All I know is that it's logical. With all the vascular problems we have it makes sense that when your breathe in cold air, that the vessels in the lungs constrict. I feel it. Cold air really makes my lungs hurt and make me cough uncontrollably.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

I had no idea about Raynaud's in the lungs. It makes sense though.

Nan

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