I have Scleroderma with secondary Ray... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

11,041 members5,565 posts

I have Scleroderma with secondary Raynauds, GERD, pulmonary fibrosis, and PAH.

lakemon profile image
6 Replies

I had an open lung biopsy two years ago and still have alot of pain. I experience pain under the left breast, up the left back, and around the body from the site of the incision. I have taken meds for this but they really don't help all that much. Any one have the problem with pain from the biopsy and have found anything that can help. Thanks,

Written by
lakemon profile image
lakemon
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Jeri profile image
Jeri

I must be your twin..do not have Scleroderma...but have everything else you mention plus Planter Fascitis, Osteoporous and mixed connective tissue disease. I had an Open Lung Biopsy April 2012. Came back as Interstitial Lung Disease specifically Usual Interstitial Pneumonitis. My ribs ache sometimes where they were spread, but mainly annoying pain in neck and especially upper left shoulder region. I have hydrocodone and I decide when to take. Biggest complaint, cough constantly and have trouble swallowing. Heat helps neck and the c shaped travel pillow helps when sitting.

lakemon profile image
lakemon

We sure do sound like twins. the constant cough I have (dry) is my Scleroderma. I was diagnosed with ILS and UIP after the Lung Biopsy also. I also have pain in the neck and left shouder but most severe pain is under the incision. I am going to try a pain doctor now, I have been dealing with this pain since April 2011. If I could control the pain I would feel so much better. I do have hydrocodone but it just knocks me out. The mixed connective tissue disease in my case is part of Scleroderma.

VanessaJoanne profile image
VanessaJoanne

Constant cough is indeed a Scleroderma problem. It is usually associated with badly controlled GERD. It should not be left and anyone who has it needs to up their acid control medication (PPI) as untreated it can become pre cancerous.

Do not just "live with" constant cough. It should set alarm bells ringing.

VanessaJoanne profile image
VanessaJoanne

Jeri. Trouble swallowing is also a scleroderma symptom.

ffrasure profile image
ffrasure

I am going to see a pulmonary specialist in a week for diminished lung capacity from a Pulmonary function test and was wondering if I should expect to be sent for a biopsy?

lakemon profile image
lakemon

Have you been told that you have pulmonary fibrosis? Question your doctor on the possibility of you having scleroderma. That can be done in several ways. Mine was done with a simple blood test : an ANA (anti nulclear antibodies). I would not have a biopsy until everything else is checked out. My lung biopsy (it was an open biopsy and I and many other have alot of problems after the test). Quiz the specialist and make sure he is understand scleroderma COMPLETELY. Good luck next week. I have found that you must ask questions and push for results. Make sure and keep us informed. This site can be alot of help. Jane

Not what you're looking for?

You may also like...

Idiopathic Pulmonary Fibrosis with Scleroderma

Have been diagnosed this by my respiratory consultant due to decrease in my lung function tests. I...
marilynmcl profile image

Hi I have been diagnosed with Raynauds and recently Scleroderma.

Since I was diagnosed with raynauds, I seem to suffer a lot of attacks and more so digital ulcers....
146nanab profile image

Raynauds and scleroderma

I have been on sick leave from work for 5 months due to raynauds and scleroderma, I have an...
Banker123 profile image

Raynauds, Scleroderma, Pulmonary Hypertension and Heart Problems

Well it seems that my diagnosis's were never ending! I now have to learn to live with it all. To...
JayneO profile image

Moderation team

AnnabelSRUK profile image
AnnabelSRUKAdministrator
Chicunique27 profile image
Chicunique27Administrator
SRUKadmin profile image
SRUKadminPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.