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Shortness Of Breath


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#1 Clementine

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Posted 21 November 2007 - 01:21 PM

Ya'll...
I've already been diagnosed with interstitial lung disease (over two years ago) but the last month I have felt undeniably short of breath. I am on Cellcept. Ya'll think it's just getting worse or is it maybe just GI issues?
Jen

#2 Sweet

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Posted 21 November 2007 - 01:53 PM

Hey Jen,

I was just thinking about you. I figured you were either not feeling well, or gone, since I hadn't seen you post, nor received any emails.

I'm so sorry you are having increase SOB. I'm wondering as the weather changes there in your very high altitude, if that has anything to do with it? The G.I issues and the GERD you have been dealing with could make you feel more SOB. Have you called your doctor?

Love ya,
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Clementine

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Posted 21 November 2007 - 03:12 PM

Sweet,
Hi honey! I have not called my rheumatologist but I did call my GI dr. last week and I am waiting to see if the Zantac helps. Maybe it's just GERD acting up. I raised my bed today so I guess I need to give it a while to see if I feel better. I know the Dr will tell me I need to make lifestyle changes (raising bed, not eating before bedtime). I just worry so much and I hope hope hope it goes away. The most dreadful part is not knowing if it's temporary or permanent.
I don't see the rheumatologist again until March unless I feel I need to but I feel like crazy patient lady and I kind of think the "feeling bad" is just part of interstitial lung disease/scleroderma and something I have to just deal with.
Ugh. YOu know, things could be a lot worse so I just need to shut up and cope.
Lately, anytime I drink any liquid I am so full and I feel uncomfortable. And, when you are thirsty, you're thirsty. It is 23 degrees here but the last month it's been in the 70s, so I find it hard to believe that the cold air is soley to blame.
Let's face it, I just need to move to the beach and sip white coconut drinks forever.
xoxoxo,
Tangelo

#4 Sweet

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Posted 21 November 2007 - 04:03 PM

Hey You,

Never minimize what you are going through. Yes, there are others who are worse off, but you are still feeling the effects of all of this, and it's OK to worry.

Hey, I'll join you in the beach living!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Vee

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Posted 21 November 2007 - 04:36 PM

Hi Tang,

This time of the year is the hardest of all for my breathing. It has to do with the leaves falling and decomposing. I was just talking with Michele and she told me that she just saw a special on tv about that very thing. That in the spring when all the leaves are blooming it puts a lot of O2 in the air and pulls the bad stuff out of the air(sorry, I can't remember what the bad stuff is, does c02 sound right?), and in the fall it is the opposite and there is actually less O2. Made sense to me. That is also when I had my bad pft, was in the fall, and my rheumatologist at the time panicked and put me on cyclophosphamide. My sclero specialist that I switched to that took me off of it said that he would have run another pft to see if it were something such as allergies or just having a bad day before jumping on a toxic drug. So I'm hoping this is just temporary for you, but please don't ignore it. Get checked out, make sure you're not in active inflammation.

Happy thoughts to you.


Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#6 peanut

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Posted 21 November 2007 - 07:23 PM

Hey Tangie,
I'm sorry you're SOB. Definately talk to your doctor - you pay to bug them :) .

Not to sound like a broken record but you should ask about pulm rehab. I've learned so much like pursed lip breathing which creates back pressure so you inhale more oxygen. Breathe with kissy lips, breathing out 2x as long as you breathe in, but don't breath out all your air.

Also the interval training I've told you about strengthens your muscles... since some of your SOB may be caused by muscle weakness rather than lung issues. Building up those muscles will help. When you go to your gym use your oxygen and stop to catch your breath every 2 minutes. That way your muscles have a chance to build which is something they can't do when your sats drop - they're too busy looking for oxygen.

Have a great turkey day.
hearts,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 peanut

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Posted 21 November 2007 - 07:24 PM

Jen,
Did you ask your doctor if you need oxygen flying?
I need oxygen flying.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#8 barefut

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Posted 21 November 2007 - 08:45 PM

Hey Tange,

I'm with Sweet when she says stop minimizing your worries.

I would have it checked out. In fact, not long after my diagnosis I was having the same symptoms you describe and I couldn't tell if my SOB was lung related or GI related or just stress related. It really is hard to tell because if you're bloated then you feel SOB and I also felt full after drinking or eating very little. Plus when I get stressed, I get SOB.

Also, at the time, both my boys had chicken pox and even though I have already had them, the Pulm. doctor on call at Virginia Mason Medical center wanted me to come see him in ER the day I called. Scared me to death. He was worried I had gotten a lung infection from my boys' chicken pox and wanted to be safe than sorry.

All my tests were normal or unchanged from previous tests a few months earlier(lung CT looked same). So I was relieved and glad I went in for the peace of mind, not to mention glad I got to meet this doctor. He had the best bedside manner anyone could have (he was easy on the eyes too). I wish I could bottle his bedside manner and prescribe it to doctors everywhere. But I digress...

You do whatever you need to in order to make yourself feel better and have peace of mind. Peanut is right; you "pay to bug him". His time is yours when you're paying him.

#9 Shelley Ensz

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Posted 22 November 2007 - 07:08 AM

Hi Jen,

Please call your doctor's office and let them know you are having worsened or more frequent shortness of breath and that you are overall just feeling worse. It might be because of the medication or from GI issues or asthma or whatever, but that's your doctor's job to figure out what it is -- and to make sure it is not from a lung infection, too.

Yes, it would help to comply with your doctors suggestions, like not eating before bed and raising the head of the bed. Why not try that tonight, see if it helps, and if it doesn't, call the doctor? A few hardcover books will suffice for bed risers in a pinch.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Clementine

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Posted 29 November 2007 - 12:00 PM

Peanut,
I bought oxygen one time to fly (dr recommended it) and it was $100 each way to use their oxygen. I used it on the first leg, but it turned out my oxygen sats were just fine without it, so I cancelled the oxygen for the second part of the flight. I know some really do need supplmental o2 to fly, but I didn't. Those cabins are pressurized to something really high, like 8000ft (just a guess) so it wasn't a big deal for me. However, if your Dr. tells you to, better do it!!!
xoxo
ME

#11 Sweet

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Posted 30 November 2007 - 10:24 AM

Hey Jen,

I was just thinking about you. How's the GERD doing?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 Peggy

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Posted 30 November 2007 - 11:40 AM

I was going to post the same question. I've got a lot of issues popping up right now and I spoke with my doctor yesterday about my bladder issue and then also asked her about this gasping or having to gulp for air a number of times each hour. She is kind of pooh-poohing it and said it could be nerves. With my pulmonar test I have the start of some lung involvement and I don't see my lung dr until April. Is this nerves or is my lung involvement getting worse? It happens on its own and all of a sudden my body/lungs take in a deep breath on its own.

I'm with everyone else - call your doctor!!! I think we sometimes get intimidated by them and hesitate when we should be calling and asking before it's worse than it should be.

thanks.

Peggy