Jump to content

Welcome to Sclero Forums!! How may we help you?


What does pulmonary fibrosis feel like?

  • Please log in to reply
4 replies to this topic

#1 Chopper


    Silver Member

  • Members
  • PipPipPipPip
  • 124 posts

Posted 09 August 2011 - 11:29 AM


I've read through alot of the resources here on pulmonary fibrosis and pulmonary hypertension. I haven't been tested yet, but I wonder if I'll do the pulmonary function test when I go to see a scleroderma specialist in September. My friend with sclero has it done every 3 months even though she's never had lung involvement.

The last few weeks sometimes my chest feels heavy, and sometimes I feel as though I have to tell myself to breathe. Occasionally I'll get a dry cough. Sometimes light headedness.

For those of you with lung involvement, how did you feel at the onset? Anything like I just described? Or did you not have symptoms at all (I read sometimes there may not be symptoms)? Can you do fine with a pulmonary function test and still have lung issues?

Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,846 posts
  • Location:West Sussex

Posted 09 August 2011 - 12:22 PM

Hi Chopper,

I have lung fibrosis so feel able to advise you with confidence! ;)

Although I had felt generally unwell and poorly for perhaps 18 months previously, the most noticable signs I had were a dry cough and a definate shortage of breath particularly during exercise. I was very concerned one day after I was absolutely heaving walking our dogs up an incline that previously I would have run up without a second thought. Thankfully, because I was very fit at the time (I'd only just run a half marathon 2-3 months previous to this) I very quickly realised something was radically wrong, went to my general practitioner who also thankfully realised it wasn't just a run-of-the-mill chest infection and referred me to a consultant and the rest, as they say, is history! ;)

I have to say that I've not suffered light-headedness nor have I had to make an effort to breathe, but my lungs are now sometimes a little painful if I particularly exert myself, although they weren't at first. I have lung function tests every three months and the DLCO (Oxygen and carbon dioxide transferance) does vary slightly, but not enough to worry my consultant. As well as lung function tests I have also had just about every lung test known to man, including a bronchoscopy, which then enabled my consultants to determine the exact nature of the lung fibrosis I was suffering with.

I'm not a doctor but I suspect your friend is perhaps having these tests as a precaution rather as I have an ECHO, but mercifully have no heart involvement or pulmonary hypertension. Obviously I can't predict whether your Sclero specialist will do lung function tests for you but really hope you have a good appointment in September and are able to have some of your fears allayed. :)
Jo Frowde
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#3 mews


    Bronze Member

  • Members
  • PipPip
  • 15 posts

Posted 09 August 2011 - 02:56 PM

Hi Chopper,

Just last year I had a lung function test and it was ok, chest Xray showed I was taking exta large breaths, but I really didn't notice it then. I started having trouble on walks, cleaning, any type of exertion. I would find myself trying to take deeper breaths for air..or like someone quite large is sitting on my chest, or kinda like a fish out of water..LOL. Now I have been using my inhaler at night mostly.

Now it's the worst when I lay down flat or on my sides. This has come on kinda fast for me which makes me kinda nervous. I'm having a very hard time sleeping at night. I maybe get 2 to 4 hrs sleep at night, and I'm taking 40mgs of flexeril which should knock me out but no such luck!

I do have the dry cough also but my salivary glands stopped working a couple of years ago, so my throat gets so dry I'm not sure what starts what! I always have a bottle of water by my side, which in turn starts the bladder in....oh but now I'm way off track.

On top of all of that I was also getting chest pains when I laid down and on my side, so when I told my primary doctor she sent me to the cardio right away. That's where he did all the tests and now I'm waiting for some more.

If you think something is wrong don't wait go see your doctor! It's very important! :excl:

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 09 August 2011 - 03:58 PM

Hello Chopper

I'm with Mews, if you think something is wrong... Don't do what I did last year and ignore shortness of breath, I couldn't even talk without getting out of breath and I turned out to be in serious heart failure. Now that's not to say anything about what's going on with you but just to illustrate the point that ignoring a symptom or playing it down don't make it go away!

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 Chopper


    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 124 posts

Posted 10 August 2011 - 07:41 AM

Thank you for the replies! Much appreciated!

Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.