What fibrosis feels like

[jane5]

hi can anybody tell me what idiopathic pulmonary fibrosis feels like or any other form of lung fibrosis

[Katinka46]

There are several members here with Pulmonary Fibrosis and Ideopathic PF. I am sure they will tell you their experiences. I have a fibrotic lung condition in the small airways: Obliterative Bronchiolitis. The scarring is round the airways which means that it is an obstructive disease not a restrictive one. So I have problems exhaling. Recently I feel that I am inhaling against stiffness in my lungs. PF is usually a restrictive disease. So I think it means that patients struggle to inhale.

Others will explain it better.

K

[jane5 in reply to Katinka46]

thankyou

[jane5 in reply to Katinka46]

thankyou for explaining since going on prednisolone I've had a stiff feeling in the chest and ribs and abit some pain in different areas of chest and a little pain on one side when coughing and deep breath

[mrsmummy]

There is more information here:

blf.org.uk/support-for-you/...

[jane5 in reply to mrsmummy]

thankyou its just I'm that I'm wondering is it the lungs or meds they found shadows when I had my xray in 2015 but no one told me there where shadows there but a letter came recently with it on they took me off my meds awhile after comming home from hospital now they have found deterioration and a restrictive picture and I am nervous person and deppressed because I feel let down

[mrsmummy in reply to jane5]

Why not give the helpline a call?

[jane5 in reply to mrsmummy]

think I will thankyou

[mrsmummy in reply to jane5]

03000 030 555

Mon - Fri during office hours.

[jane5 in reply to mrsmummy]

thankyou

[Plumbob]

Jane -I have asbestosis, which is a form of fibrosis and have a wide variety of aches, pains and discomfort which come and go, especially around the rib cage area. But everyone's symptoms will be different ? Another influence to your condition to consider is the medication you are on, which in itself can cause some aches & pains? I was on Prednisolone for two years and experiencing a lot of cramps but when I stopped the prednisolone the cramps eased.

I would say it is difficult to identify every painful experience you will have as everyone is different. You must do what you need to make yourself as comfortable as you can.

Take Care

Owen

[jane5 in reply to Plumbob]

thanks Owen I'm wondering now the housing association let it out there may be asbestos in the house but if we find it were not to touch it but I have hyersensitivity pneumonitis too jane

[Plumbob in reply to jane5]

Obviously You need to make the Housing Association aware of your condition?

I worked with asbestos directly for 10 years and 20 years indirectly and up to now I have been fighting for 4 years to prove I have asbestosis even though I have Pleural Plaques which can only be caused by asbestos exposure. I have a court date at the back end of the year so I'm trying to hang on for it ?

You Take Care

Owen

[jane5 in reply to Plumbob]

told the housing association Owen they don't want to know about my lungs there's black mould too and loads of chicken farms here they usto spray the chicken manure from pipes onto the road in liquid form we usto have to pass it when walking to the shops it got sprayed in our hair and clothing we kept birds we had been around birds nearly all our lives but they got all the. Blame.comming back to the chicken farms again when we got back from the shops you could smell it on your body and clothes

[Plumbob in reply to jane5]

Jane -You have to shout and don't let people 'fob' you off with the first response? I do and it does achieve things !!! I've been to the press and MP if the local authority try to 'fob' me off and it works!!

if the housing association or council aren't willing to help you out, go to Environmental Health, the press or your MP, They don't like bad publicity?? ....Don't be afraid of rattling cages especially when you have health concerns!!

Go and shake them off their perches Jane -You can do it ....Life is bad enough without Bureaucrats telling you what you can & can't do ? especially if it's affecting your health ....Would they have the same attitude if it was their relative??

Take care

Owen

[jane5 in reply to Plumbob]

hi thankyou I will take your advice they try blackmailing us and everything I've filled 2application forms to move from Lincolnshire we moved down here in 207 from derby thinking life would be peaceful we've had hell from neighbours and this housing association since comming i think they think they can walk over people thankyou

[jane5 in reply to Plumbob]

hope your ok jane

[jane5 in reply to Plumbob]

I was in a council house with asbestos about 22years ago I had all this white powder all on my furniture in a room upstairs with shiney bits in it id been in there a while cleaning it up thinking it was dust until my neighbour came and had a look at it for me and told me it was asbestos has his father worked with it I got the council in and they had to arrange men to come in it was in an house in derby

[Offcut]

I too have restrictive lung disease (2012) caused by an infection and Empemya which was 15mm all over my lungs my biggest issue was I was critically ill at the time with the infection that they could not do a decortication to remove the Empemya and ended up putting me on an oscillator for 10 days which kept me alive but damaged the lungs more! As people have said we are all very different I get out of breath with simple actions but once seated can talk the hind legs off a donkey most of the time I also have heart conditions and Pulmonary Hypertension which adds to the lack of breath. No matter how I feel if I take in a big breath It hurts. One of the issues is if your gp asks for a peak flow it usually will be at least 10% higher than if you had Asthma. The best advice I can give is keep positive at all times and keep away from people with coughs and colds as much as is possible. Do not be afraid to make your GP or consultant aware of how the treatment is working for you! If it is making you feel ill tell them it needs to be monitored.

I also worked with asbestos for over 10 year which has not helped!

Be Well

[jane5 in reply to Offcut]

thankyou for getting back to me keep in touch I'm sorry to hear what you've been through they said there's deterioration they sent me for a high resolution ct scan put me on prednisolone to help with scarring I never got any aftercare after comming put of hospital in December 2015 I feel I've been let down I went in with a severe attack of hypersensitivity pneumonitis jane

[Offcut in reply to jane5]

I know what you mean it has taken my GP's a long time to accept my lung issues as they blaimed it all on my heart, they do now. It was down to dogged bloody mindedness on my part and an A&E consultant pulling them over the coals about their lack of support for my lung condition.

My first consultant that dealt with me in ICU was great and honest he told me I was lucky to be there and he cannot make me better, he can only do his best. He said I will be back with a few problems but just try and keep away from people with bugs as best I can. another was just as nice and said Sorry I do not have a magic pill?

I just do as much as I can without being silly. At least I try

[jane5 in reply to Offcut]

I'm not alone then I went😊 to see my gp a while ago he lied to me there's no other treatment for fibrosis only prednisolone I told him I knew of two other drugs for fibrosis you ought to of seen his face he gave us such a weird look my sister was left 8 hours before her brain was scanned she died of a massive bleed on her brain its all wrong I just get a stiff feeling and some pain when breathing in occasionally but stiffness in my chest when sitting its uncomfortable on the bus 😊 too I'm at pilgrim hospital in Boston on Monday for results of ct scan then a lung function test Monday I know what you mean it gets you down doesn't it then the worry over the results I have the lung thing and my husband has a life threatening illness so I afto look after my husband has we have no help come in I've been and got the forms to fill in today for a new gp I hope your ok I think its awful about further damage being done to your lungs I don't like negligence jane

[Offcut in reply to jane5]

Keep positive it helps more than drugs ever can

[jane5 in reply to Offcut]

be well too god bless you

[jane5 in reply to Offcut]

hope your well😊

[dragonuk44]

Hello I have chronic fibrosis and eaa. Cough a lot .Not as much now Im on the oxygen .Get tired a lot and cant lie flat .Hope this helps

[jane5 in reply to dragonuk44]

thankyou is it the chronic form of hypersensitivity pneumonitis jane

[jane5 in reply to dragonuk44]

dragon 4d. Do you mind me asking what are your oxygen says levels jane

[dragonuk44 in reply to jane5]

Hope Ive got this right lol .If you need more info ask .Im on 4litres ambulatory via a conserver device .

[jane5 in reply to jane5]

they said there's a restrictive picture on my fev1of 61percent andfvcof 62 percent and a radio of84 percent my oxygen says on air are 97 percent

[dragonuk44 in reply to jane5]

soz thought I had nt got it I have lol.fev1 is 1.79 82 %predictided abd fvc2.26 Hope I have it right lol

[dragonuk44 in reply to dragonuk44]

dont reaally understand it all lol

[jane5 in reply to dragonuk44]

no I don't they don't explain they just expect us to understand it

[sibkev]

it hurts if its cold is the worst one bit of advice keep walking and exercising sound mad i know but it will dive you a lot more time to be mobile

[jane5 in reply to sibkev]

thankyou I've found one thing like you've said if I'm sitting I don't feel too good but I walk around alot and busy I feel better I wondered why I feel better what it was I had a really bad attack of hypersensitivity pneumonitis in 2015 after comming home from hospital in December 2015 after nine days in hospital my GP gave me no after care the hospital reccommended and I feel I've been let down I went to see my GP he lied to me and told me there's no other drug for fibrosis only prednisolone jane

[jane5 in reply to sibkev]

thankyou I just get chest pain niggly and a feeling of pressure there's another weird feeling too but I do hhave mild trycuspid valve regurgitation

[dragonuk44]

cold and the hot get to me .Not sure what one I have .I take predisolone 2 .Seem to get a lot of infections to

[dragonuk44 in reply to dragonuk44]

yes I walk the dog and it kills me get started but yes it does make you feel better .

[jane5 in reply to dragonuk44]

hi did you get my sats

[dragonuk44 in reply to jane5]

no cant see them

[jane5 in reply to dragonuk44]

another thing is I can be in the cold and have a really hot sweat come on had it regular since been in hospital in 2015

[Time_2_drink in reply to jane5]

That happens to me all the time and then I get freezing

[dragonuk44]

yes I know what you mean .You take some thing off and then you go cold lol

[jane5 in reply to dragonuk44]

yes's I get wet through with sweats then take something off I'm cold again my consultant doesn't see me I keep getting put with members of his team and don't seem to get answers

[Time_2_drink in reply to dragonuk44]

I have been like it since January am always mentioning it to matron doctors or when hospitalised no answers drives me barmy

[jane5 in reply to Time_2_drink]

yes's I don't get any answers I feel it is negligence

[jane5 in reply to Time_2_drink]

just got a vile cough come on this last week

[timCHP]

HI Jane. I have CHP so I was looking for others on here who have the same thing and found your post from a couple of months ago. How are you doing?

Are you still worried about having IPF? I was too for a while.

CHP can be very similar to IPF. CHP can cause fibrosis - So CHP is a kind of Pulmonary Fibrosis.

BUT - the difference is the cause. For IPF the cause is a mystery and this is why it is so hard to treat.

With CHP they know it's caused by your immune system attacking your lungs. So they can treat that by treating your immune system - usually with Prednisolone and sometimes with another Immunosuppressant, like Mycophenolate, or Cyclophosphamide.

At one point the docs thought my CHP was actually IPF, but they did a CT scan and could tell for sure as they look different in the scan apparently. Also, I had a Bronchoscopy, which showed my body was reacting to outside allergens, which only happens with CHP.

Otherwise the symptoms are very similar, so you wouldn't know the difference just by how you feel.

If you have already been diagnosed with CHP, it's unlikely to have become IPF, so don't worry too much.

And if you have had a CT scan, they would have seen IPF if it was there, so again I think you are alright.

With CHP it can be stopped completely if the cause of your reaction is found.

The main causes are MOULD and BIRDS.

If you have any concerns about mould in your home, it's vital you get it professionally cleaned up or that you move house.

If you are near a chicken farm, you should try and move away if you possibly can.

It's possible that you could be completely disease free if you can get away from the triggers that cause the CHP.

Is there someone locally who can champion your cause and help you out? A relative? Or a charity?

For others (including me) the cause is never found. But the outlook can still be OK, as the CHP can be slowed by the right combination of treatments.

Stay active, and be pro-active. Chase your doctors, make sure you are seen by good specialists, ask for alternative treatments.

Good luck! Message me here if you need any advice or support.

Tim

[jane5 in reply to timCHP]

hi have hypersensitivity pneumonitis they found some shadows on my lungs which haven't spread but get a stiff feeling in my chest and some pain since febuary hopeing it is just chp Tim. But I think there was some scarring thankyou for your message hope your alright jane

[jane5 in reply to jane5]

when I went for my lung function test they found my lungs had shrunk a little but my lung function test was improved a little he sounded pleased about it they know the cause though bird dust and mould and they have took a blood test recently for farmland and farm but when I was first diagnosed there was alot of dust in my lungs they said the amount was really bad jane

[jane5 in reply to timCHP]

my cause was bird dust but live near farmland too jane

[jane5 in reply to timCHP]

hi hope you got my messages ok jane