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#1 miocean

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Posted 05 January 2010 - 11:18 AM

I know many of us have trouble with the cold weather, mostly with Raynauds. Fortunately that is not that bad for me. I have had one spot of calcinosis on a knuckle for years. It has gotten better over time but I am developing another one on another finger. The worst thing about the cold weather is it makes it much harder for me to breathe. I was put on oxygen a year ago for when I exert myself but haven't found much of a need to use it. However, I went out in the cold today and brought my portable. I still had trouble. Does anyone else experience this? I had a CT scan in Dec. and compared to my one a year ago there is no change. I go to my scleroderma specialist tomorrow and she will probably be mad at me because I was supposed to have a six minute walk test but haven't done it yet. I have a lot of other questions for her. I will keep you informed.
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#2 Snowbird

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Posted 05 January 2010 - 02:38 PM

Hi Miocean

Interesting thing someone told me or that I read once but unfortunately I can't remember which it is....was that the lungs were the only internal organ that could be affected by Raynauds. I know sometimes with me when it's really cold out...I can cough for about an hour or so afterwards until I actually warm up again once I'm inside....just wondering if that could be adding to your problem...or not? Will be awaiting your news after your visit...hope it goes as well as can be of course, good luck!
Sending good wishes your way!

#3 warmheart

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Posted 05 January 2010 - 04:03 PM

Hi miocean,

And happy New Year! Sorry you're having trouble with the cold weather; hope all goes well at the Dr.'s tomorrow.

I'm not on oxygen, but I've definitely noticed that I'm getting more short of breath and lightheaded walking in the cold weather, and I've slowed down a lot (and gained 5 pounds--grr). I suspect it's connected somehow to the Raynaud's, but I'm not sure how.

Hugs,

warmheart :)

#4 red

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Posted 06 January 2010 - 01:12 AM

Hi all, I am having this same thing too recently. (I have only mild Raynaud's in my hands and feet, but curiously my nose and face feel cold the most - very uncomfortable, and how does one warm up the face? I find I have to cover my face with a blanket when I sleep now!) Anyway, my lungs have not been the same since I had the flu in November, it still is irritating to take a deep breath, I get out of breath and my chest hurts with any exertion and wow, when I go out in the cold, it is much worse - I have trouble breathing, get dizzy and the pain lasts for an hour or more. Have been back to the doctor again (4th time now since Nov! I am sure they are getting sick of seeing me!), was put on prednisone again which helps a lot, but now I am down to 10 mg a day and getting the same chest discomfort and lung irritation again. Am supposed to go back this week and am probably headed for another chest CT, doctor says "something" is going on with my lungs. I guess I'd like to believe it's a Raynaud's kind of thing, but am fearing that it's fibrosis or some other kind of damage from the flu. Am getting very discouraged!
Hoping for an early Spring,
red

#5 Jeannie McClelland

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Posted 06 January 2010 - 05:28 AM

I also have coughing spells when I go out in the cold and since this has been the 7th coldest winter on record here, I've been coughing a lot! The silver lining to that is when people hear me coughing my way through the shops, they steer well clear of me. I'm sure it's done more to prevent me catching H1N1 than the vaccination did.

It could be all in my head, but I think if I keep my portable O2 tanks in the warm house, rather than my cold car, I don't cough quite so much when I go out. The other thing I do is run the tubing under my coat so it stays warm and relatively flexible. Like I said, I could be imagining that it helps, but it does no harm. Posted Image

Here's the link to the articles on Raynaud's of the lungs.

I'll join everyone in that wish for an early spring!
Jeannie McClelland
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#6 janey

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Posted 06 January 2010 - 06:19 AM

I become a hermit during cold weather. If I go outside I have to have my oxygen, but then I can still get coughing fits. My personal take on the cold and scleroderma is that since we can have vascular involvement (Raynaud's, PH and others), that the cold just makes those problems worse. We all know that the cold affects Raynaud's so why wouldn't it effect our entire circulatory system? I'm certainly not a doctor so this is just a guess. Of course when I bring it up to my pulmonologist and rheumatologist they say, if you have problems with the cold, then stay out of the cold!

For the holidays I traveled to sea level hoping for better health and warmer weather. Well, I got neither. It was so cold and my coughing and shortness of breath was just as bad there as it is at home. So my conclusion is that lower elevations help only in warm weather. Cold weather is my worst enemy! Maybe that's why I have an endless supply of teas in my cupboard. I try to stay warm from the inside out.
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#7 miocean

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Posted 07 January 2010 - 05:12 AM

I am sorry so many of us have trouble breathing in the cold weather. I went to my sclero specialist yesterday and brought my oxygen but still had trouble breathing. After examining me and looking at my past two CT scans she asked if my 02 was effective. I had to say it honestly didn't help much. She said my PFT's and CT scans haven't changed in the past year so maybe it isn't my lungs. It might be my heart. So I have to see a cardiologist. I am firing my past one, I do not like him. He was supposed to do a right heart catherization and did a left one instead so I will probably have to have a right one done. I am going to make an appointment will my husband's doctor. I met him once and really like him. I have an appointment with my pulmonologist next week so we will see what that will bring. In the meantime I'll just be breathing heavy and coughing. I read the links you provided and wonder if it could be vascular.I hope we get some answers. Stay warm.

miocean
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#8 Snowbird

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Posted 07 January 2010 - 11:15 AM

Miocean

Sounds like a good idea for another opinion sure hope you get to the bottom of it soon so they can get some remedies in place to help you! Let us know how you make out with the new doctor any chance of getting in soon?

Hope it warms up where you are soon Not sure how cold it is for you but our temps have been -20 last week fluctuating to -9 today plus windchill...eeechh...didn't mind the cold before Raynauds but I detest it now too, he visits too often :o
Sending good wishes your way!

#9 MaryFanPhilly

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Posted 08 January 2010 - 04:50 PM

Hi Miocean,
No, you aren't alone, not by a long shot I would think. I had a very severe Raynaud's attack which made me black out for a moment. I ended up admitted to the hosptial and the general consensus was that it was the vasospasm caused by my body going from warm, to very cold, to warm again. Raynaud's can affect the large blood vessels as well as the small ones. It isn't terribly common but it happens.
Cold weather is a horrible thing for us to deal with, and I do not miss it at all now that I have moved west. Good luck and keep bundled up!
Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's