Ipf

[Ward61dixon]

Hi I have Idiopathic pulmonary fibrosis and was wondering if you get a lot of pain just under the rib cage as I have and can’t sit properly on a chair can the lungs swell if there is infection

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I think doctors are full of it really with muscles pain.

With material I have coughed up as blocked my airways and blockages can cause horrendus pain.

Am no expert but if ipf damages and block’s airways guess would feel horrendus crippling pain

[Ergendl]

I get rib pain because when I don't use my reliever inhaler my ribs and diaphragm pull my lungs further than they can stretch, leading to soreness and cramps. It hurts to lie on it but it doesn't stop me from sitting. I have COPD.

Have you told your doctor about your pain?

[Ward61dixon in reply to Ergendl]

I have not got an inhaler I get nothing both lungs are agony

[sibkev]

ipf starts as inflamation [forgive my spelling ] so yes it will hurt like stink mine did in the cold it was so painfull obn my back where lungs are but after transplant no pain

[Ward61dixon in reply to sibkev]

It’s both lungs I was told that there is nothing they can do as no cure and no treatment I don’t think I would be considered for a transplant but terrified I get an infection as I was told I would go rapidly

[lycra in reply to Ward61dixon]

Talk to your Doctor or your consultant or both, there is no cure but the expert help a lung nurse can give even if it is only advice, are you on any medication ie . Nintentab or Pferidone?

[Ward61dixon in reply to lycra]

Will do going Thursday and I will ask about the those 2

[mauschen in reply to lycra]

I agree with lycra but would also ask if there is available counselling

[Ward61dixon in reply to mauschen]

Will do

[sibkev in reply to Ward61dixon]

think you need to change doc i had steroid immuno suppressants for 10 years and loads of walking dont just take it sitting down come out fighting i was 58 at transplant and it not that scary as for infections well 3 types of antibiotics at once did it for me so come on get stuck into em and stand up for you rights n life sry but it will do you good

[Ward61dixon in reply to sibkev]

I was a very active person before this running and many more activities now not so much but I have a very positive attitude and will not give up hope I get 10 years I was told 3/5

[mauschen in reply to Ward61dixon]

That’s the spirit!

[lycra]

Talk to your Doctor or your consultant or both, there is no cure but the expert help a lung nurse can give even if it is only advice, are you on any medication ie . Nintentab or Pferidone?

[Ward61dixon in reply to lycra]

I was looking them up and on my list of questions to ask

[mauschen]

Perhaps you have costochondritis, chest wall pain or costosternal chondrodynia which is a temporary inflammation of the costal cartilage; between the ribs?

[Ward61dixon]

Went to the doctors I have pulled muscle and the cartilage is inflamed as is the lungs it’s with coughing on antibiotics again

[Ergendl in reply to Ward61dixon]

Hope the antibiotics sort things out for you.

[Ward61dixon in reply to Ergendl]

Thank you I hope so to I have a lot of living to do loads of plans but it holds you back as I can’t get insurance to fly and if you do it’s a fortune so unfair

[Granny56 in reply to Ward61dixon]

I hear you! This is often an invisible disability which no one wants to see or hear about. People like you should be encouraged to live life to the full; where possible. Governments should step in to address these disability bias to prevent insurance companies from ripping the most vulnerable people off, it's a disgrace.

I hope you feel better in a few days once your treatment kicks in.

Take care

[Ward61dixon in reply to Granny56]

It’s so unfair I was in the local shop with my husband and was coughing this random person said ( that cough is put on ) I am not a violent person but I could have hit him I said I will gladly give it to you if you want all my friends think I look great but I don’t feel it people are cruel when coughing they seam to part away from you now my husband calls me mosses

[lycra in reply to Ward61dixon]

ward61dixon,Please listen and stay positive, I was diagnosed 5 years ago, used to cycle a lot, now cycle less and slower, just returned from climbing and walking in Spain, no meds means travel insurance is not unavailable, I can do lots but just slower, do not stop trying, that is fatal. I am about to start (hopefully) a drug trial for Celgene CC90001-IPF- 001 study although it is 3way blind. Keep on hoping a cure is not far away.

[Ward61dixon in reply to lycra]

Thank you I will it is so nice that I am not alone as I thought I try to speak to my son but he just says mum not listening you will be there a long time for my 2 kids and that is what keeps me going positive thinking

[mauschen in reply to Ward61dixon]

That’s your son’s way of dealing with your illness. You are being realistic but not optimistic, you might need some professional counselling to help you cope with your diagnosis and make plans to live life to the full within your own limitations.

[Ergendl in reply to Ward61dixon]

There are trains and ships too....

[Ward61dixon in reply to Ergendl]

Me 2

[Ward61dixon]

Not where I go it would be to long