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Margaret

Pulmonary fibrosis

8 posts in this topic

Hi Everyone,

 

I am writing this for a friend....she hasn't had time to sit down and join the forum yet. She has a daughter dual diagnosed with DS/Autism --- just like Gareth, limited on her speech and explaining how/what she feels. For those who have pulmonary fibrosis can you explain how you feel, how much you hurt, etc. My friend is heading to a center of excellence on Monday with her daughter to see the Ped Rheumotologist there. Thank you all for your feedback.....it will help her immensely.

 

Take care, Everyone.

Margaret

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Hi Margaret,

 

Aside from shortness of breath, what I notice the most is feeling that I can't fill my lungs completely & that the expansion of my ribcage is restricted somehow. If I try to take a deep breath, or exhale completely, my breath will catch and I get a reflexive coughing spasm. There is mild pain, more of an ache than a sharp pain. That does get worse if I'm overtired or have any kind of respiratory infection.

 

Hope this helps.

 

Best wishes to you all,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Jeannie ,

 

Thank you for your help. It's much appreciated.

 

Take care, Everyone.

Margaret

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I get winded easily. I normally feel also like I can't get a deep breath and when I yawn it is a horriable achey pain in the middle of my chest. Good Luck!

-Anderson

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Thank you, Anderson. She's at the Rhuematologist today. Hopefully, she will have some good news tonight for me.

 

Take care, Everyone.

Margaret

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Hi Margaret,

 

I have the same symptoms as mentioned above as well as I get overheated quickly when I exercise and it takes a long time for me to cool down and get back to 'normal'.

 

I get the uncontrolable yawns when I have shortness of breath - I guess my body's way of trying to readjust.

 

I hope your friend's daughter has a good news visit!


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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<<I hope your friend's daughter has a good news visit!>>

 

Hi, Everyone ,

 

Yes, she had a good visit and is a lot more optimistic. She really likes the Rheumatologist --- she gave them 2 hrs of her time!!! She said she forgot her password for here but says she will start reading, learning, and, hopefully, posting. She said they tooks lots of blood work, ran X-rays, and, I think, a CT scan, too. Her daughter has to go back at the end of the month for a couple more days of testing.

 

Like myself with Gareth, you have helped her immensely in understanding this disease and what her daughter is feeling.

 

Thank you and take care everyone.

Margaret

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Hi, Margaret. Tell your friend to drop us a line at [email protected] and we can get her sorted with a new password.


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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