lung pain with IPF

lung pain with IPF

I started getting painfull lungs about I year ago on and off at first. one day maybe one side, another day the other side. about 9 months ago it was every time I moved, for a while now its permanent, i'm on 30micrograms butrans patches. up to mid November I was also on 8, 50mg tramadol a day, as well but harefield wanted me to lower the pain relief, in case I get on the transplant list, so now just the patches and 2 tramadol a day. the pain can be so bad all the way down the front of my lungs and all down my back of my lungs. does anybody else suffer with this. my condition is now classed as advanced. i'm on 10 litres oxy at rest and sleep and 12 on movement and I have to use a mask. anybody having anything similar I would love to hear from, thanks in advance, MM.

26 Replies

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  • I sympathise - must be awful. A lot of people on the forum go to bed early (altho' somebody might be awake in the night with something similar to you. You will get, I am sure helpful replies in the morning. Love the dogs, very festive. Kaye.

  • hi kaye thanks for the message, thought i'd let you know they had just been to the groomers and she always puts bows on em at Christmas, so I took a photo cos they looked so cute!!! all my best MM

  • I am always inbed at 9,and sometimes sleep for 12 hours mandy

  • god I wish I could sleep like that, I wake approx. every 3 hours.

  • Good evening MontyMillie,

    I have some chronic pain in my lungs, but I don't have IPF so I'm not sure I can help. And I am no way as poorly as you. You are one hell of a woman. Love the fluffy fur, bright eyes, neck decoration. And the dogs are cute too.

    I do hope all goes well at Harefield. Let us know the outcome.

    All the best.

    Love and non-squeezy hugs

    Kate xx

  • hi kate, thanks for responding. I of the drs at the Brompton said it wasent usual to have this sort of pain, but I just want to see about other people having it. oh I do love them dogs they give me so much joy, laughs company and are always ready for strokes!!! I will let you know how it goes thanks again love. all my best martine.

  • Good morning you really are a remarkable lady. Due to my breathing and spinal diseases I do not go to bed but sit all night in my rise and recline chair, but I don't recline !!! so most of the night I spend on the internet or crafting when I feel well enough. I do get some lung pain but thought it was in my head as I hadn't heard anyone else say they suffer from it, but now I know I'm not going crazy . I wish you all the best and hope this year brings you all you wish for yourself x

  • hi, thanks for messaging me. sorry you got lung pain as well, it sucks!!! I also spend a lot of nights on the net and listening to my audio books on the computer, its a great invention, especially for house/bed bound people!!! take care, all my best to you, martine.

  • I have I.P.F. and I have constant pain through out my entire thoracic region front and back. I get muscle spasms in the intercostal muscles, I get what feels like something being pinched like I have something in my lower rib cage, and my doctors tell me that the lung have no nerves....I explain yeah but the muscles do...I take tramadol and Lyrica and Cymbalta. The pain is in itself very debilitating. Best of luck I'll be praying for you.

  • hi and good morning, how interesting, the lungs have no nerves!!! I dident know that. my pain also gets worse when I get up and move, but i'm sitting in bed now and the pain is still here and i'm just breathing. I used to get what I called cramp in my top and bottom belly plus other places. my GP took me of calcichew and within weeks they had all stopped!!! it was amazing, cos I would get it from my toes to my top belly and sides. thanks for letting me know about you and your self stops me feeling so isolated. all my best to you, martine.

  • Hi, I also get pain which I call cramps all over my body, legs , hips stomach but worst under ribs both top and bottom, I suppose they are spasms but no doctor has ever told me why.

  • hi early last year I was getting cramps in my toes, feet, calfs, thighs, top and lower belly, fingers and when it started on my sides iwent to the drs, she took me off calichew and mensioned something about magnesium did blood tests and weeks later they all went away, thank god cos it was happening all over every day multiple times. I just thought i'd let ya know about the magnesium. take care. martine.

  • Thank you, Martine, I will ask my GP about magnesium as I am on so many other things for different conditions.

  • My GP told me the lungs don't have pain nerves too, and that it's the intercostal muscles that are hurting, not inside the lungs. I saw an osteopath recently and he helped me by easing the spasm in my diaphragm and gently massaging the areas of the ribs where the pain was most severe.

  • hi thanks for the post, it really feels inside, like my lungs, you know. worst is running down either side of spine about 3-4 inches wide down my back. all I want to do is rub it, but I cant reach!!! really annoying, but I sometimes get my mum or sister when their over to give them a rub, so not all is bad!!! that for the info, all my best, martine.

  • I ment to write THANKS for the info. martine.

  • Hi montymillie I have a pain down the left side it started after a nasty infection about 2 years ago. I went to the GP who said my left lung is weak and said it was pleurisy it drives me mad the only way to ease the cramp like pain is to lie on the left side.

    Hope your feeling better soon it's not good coming off pain killers

  • hi cheers for answering, a few people seen to have pain with different lung disease's makes me feel better knowing its more popular than the dr at the Brompton made out. I know my disease is fatal but I dident fancy having anything unusualy extra!! that proberley sounds strange cos i'm gonna die (if I don't get on the transplant list) and I understand that, I suppose i'm saying I just wanted straight forward IPF, yeh, coming off 6 tramadol a day makes a big difference. thank god I still got my BuTrans patches, I just cant come off them, no way!! I also have had pleurisy twice, many years ago I suppose that hasent helped, dident think of that, ta. thanks for replying and sorry you feel so much pain as well. all my best martine.

  • Have you not been been referred yet for the transplant list,it's sounds as if you should be on it now,a friend had a single lung transplant 3 months ago he is doing very well and he was not even on oxygen at the time.I only have ambulatory oxygen at the moment,but yes I often get pains in my lungs,but was told the same,no nerves in the lungs,I did suggest to my ILD nurse it's something they should ask us IPF patients.I am going to have manometry and PH tests in a couple of weeks time,they say I can't go on the transplant list because of my oesphagus,but they will do the tests as Papworth said no,but I asked for a second opinion at Newcastle,so Papworth are doing the tests,but they told me on Tuesday of this week my CT scan shows no motility in the oesphagus,I am aware the Brompton don't do transplants they refer,my friend was referred by Brompton to Manchester,I would choose Newcastle if I get thru these tests,not holding out much hope,I do hope you can get your pain sorted,it's a shitty illness without the extra pain,sending you best wishes.Sooki.

  • thanks darling for your message, I got the 2 day stayover for more tests at harefield in april, they will then let me know if I can go on the list. I hope your news is good when you get it. as for the pain I think its getting worse as I deteriorate well my lungs I mean, I shall see in time. take care love. martine.xxx

  • Hi i am also on 6 tramadol a day.get alot of pain under my boobs which ive had for years since had lung problems mandy

  • hi thanks for posting I had no idea it was so common!!! all the best, martine.

  • Before I became disabled I was a nurse I know part of what is causing my pain comes from the many herniated discs in my cervical and thoracic spine and bone spurs at the nerve root outlet. The worse thing about having lung disease is how it took my ability to be physically active. Before I became ill I work 72 plus hours a week. I loved being a nurse caring for the elderly in rehab and long term care. When you lose your conditioning of the core muscles you easily get disc herniation. I'm not saying this is entirely what all causes my problems but I believe it plays a roll in my pain issues through my thoracic region of my body. I also believe some of the pain especially under my breasts is one because of how easily the intercostal muscles become entrapped in the ribs and something like a pleurisy. Bending down to tie my shoes I can no longer do because of that pain. I know everyone is different from case to case, but perhaps the spine is playing a roll? It's another place to evaluate. Best of luck I will keep you in my prayers.

  • hi again, funny I've had a bad back since I was 18 and i'm 45 now it has made me bed bound on occasions and also been on crutches in the past.

    very interesting what you had to say thanks, love martine.

  • hi montymillie I have emphysema and pulmonary fibrosis ive been getting tested to see if I am suitable for transplant I was to have an coronery angiography but told I would not be able to withstand the procedure.im only on 6 litre rest and 9 on movement even if I get out of bed to do a pee in a bottle and sit back down on bed I am gasping for breath this is really frightening I have been given c-pap machine first night wife told me I woke through and just riped it of my head tried it again woke through the night and took it off.ifear that this machine that it will stop giving oxygen through the night do you have any proklem with your c-pap also when on c-pap ny oxygen gets turned down to 4 litres .

  • hi teaky, I,m really sorry to hear you are having such a problem with your CPAC. I don't use one, but when I've been in hospital I have heard a lot of people do not like them, and don't want to use them. they have said its like there not getting oxygen and very scarey. The nurses have told them it takes quite a while to get used to it, and it feels very different from other masks. But in the long run you get a better oxygen supply and a better nights sleep. try putting a post under IPF or COPD and I bet you get some really good feed back from people who use the machines, sorry i'm not any help. wishing you all the best and sending you out good vibes, montymillie. xx

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