Restrictive lung disease?

Hi everyone, i'm new to this site so i'm not too sure how it works but here goes ...

I'm 35 and am waiting on a chest xray results as my gp suspects i have some sort of lung disease. On the sheet it mentioned "restriction?" and to be honest i'm a bit scared after googling it!

I feel well at the minute but have had a few bad chest infections the last few years and i smoke(not for long hopefully)

I suppose i'm just looking for reasurance and wanted to ask how long people get their xray results? my doctor said around a week which it has been today.

thank you, Sharon

35 Replies

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  • Hi shazza, I was the same, and my x ray was a week. Dont worry, which is very easy for us to say, Really nothing to be scared of, we are all restricted in one way or another. Everyone on here is Brilliant and supportive. :)

  • Thank you for your reply :) I'm trying my best not to worry but every time i look it up on google it says 3-5 years outlook!

    I suppose i'm getting ahead of myself seeing as i haven't even had the results lol

    I feel too healthy to have a serious disease(fingers crossed)

  • I am fairly new, am a carer for my husband, and the support that I have got fom this site is amazing.

  • Thank you it's good to share this as i was going a bit loopy with worry :)

  • I know everybody googles, I certainly did, but wait until you get a definite diagnosis and don't think the worst,not easy I know. I hope all's well. xx

  • I agree completely, fingers crossed my results aren't as bad as i've been thinking. I feel better all ready for sharing so thank you x

  • Hi Shazza, I'm 35 too (I feel old!) and joined her a month ago after my dad started becoming very ill. Everyone I have spoke to on here are simply amazing in one way or another.

    We either have an illness ourselves or care for someone who has. It is great for support, to ask questions, have a laugh together or simply to have a moan now and again.

    It's only natural to worry and it is humann nature to think the worst so don't be alone okay, we are here to offer help and support. Some test results can take a couple of week sto come through, just make sure you speak to your GP for your results and I'm praying that it is nothing serious. And as they say......no news is good news xx

  • Hello Shazza :)

    3-5 years eh ? Don't believe a word of it !! I was diagnosed with COPD 12 years ago and I still live a relatively normal life despite being on oxygen 16 hours per day. I hope to be around at least another 20 (I'm 64 now).

    Fingers crossed for good x-ray results X

    :)

  • My partner has been saying the same thing hopefully that saying is true. I am really so pleased i signed up here :) you have all been so kind to reply so quickly, thank you x

  • Elian 12 years! you've made me feel better already :) fingers crossed you are here for atleast another 20 years x

  • Shazza, what illness did you google that gave you 3-5 years?

  • Um Restrice lung disease. I had to do one those breath tests 8 months ago which my gp wasnt to happy with and mentioned the possibilty of COPD but because i was still recovering after having broncitis he said to go back for a repeat test in 6 months.

    8 months later i went back (2 weeks ago) and he said no improvment which i was surprised to hear to be honest but he said it seemed to him to be showing more of a result of restriction and i needed an xray.

    I'm hoping it'll be ok x

  • Hi Shazza

    First thing to consider is to give up the cigs. You won't immediately feel better but your lungs will have more of a chance. Do contact the BLF helpline when they re-open after the bank holidays for any reassurance. Many of us on here have been diagnosed far longer than 3 - 5 years and are still managing to live and enjoy life to a large extent if at a bit of a slower pace!

    Please have a look at the BLF site and or the British Thoracic Society site where you will find lots of useful information. But until you get your results please, please don't panic and get yourself all upset as it will make you feel worse.

    Do let us know how you get on when you have seen the doc

    M

  • There are hundreds of different lung diseases, when you said you googled it and it came up with 3-5 years I thought maybe there was a specific disease you were relating it too, sorry if I came across as being a tad dull there!

    There are lots of restrictive lung diseases and lots of obstructive ones too. some very severe and some relatively mild so please don''t worry unneccessary ok.

  • Tanymarie you didn't come across as dull at all lol I suppose i just read the worst thing on the internet and paniced! :) I will deff let you all know what happens when i get my results.

    Mulie i know the fags need to go, i'm kicking myself for being so bloody stupid not stopping years ago but hey. I will wait for my results and will ring the helpline thank you x

  • Hi there!

    I'm 50 and I have a suspected restrictive lung disease. However, it's now about 11 months since I started having tests to find out what is going on. You may need to be patient for a while yet :) In this type of thing they rule one thing out at a time it seems.

    I actually got my x-ray results the day after having it done, but this was because it showed pulmonary oedema, which can be very serious and so needed treatment straight away. The radiologist phoned my GP, who in turn phoned me to tell me and to start me on treatment. If there's a major immediate concern they would phone you. However, there was no sign of restrictive disease on my x-ray at that point. It doesn't always show up on x-rays. Because of my x-ray findings I actually underwent cardiac tests before being referred to respiratory.

    The next stage for me was cardiopulmonary function tests, which is what actually showed a restrictive pattern, and ruled out an obstructive disease like COPD. My function was abnormal both at rest and on exertion. These tests were followed by a CT scan, which showed some inflammation and scarring and strange black circles in the lungs, and a VQ scan, which led to me being referred to a thoracic surgeon for a surgical biopsy to try to get a definitive diagnosis. I am still waiting to hear about going into hospital for that. However, even that won't guarantee a diagnosis, according to my consultant.

    What I'm using a lot of words to say is please try not to get too stressed out about it - you may go down several routes before finding out a cause for your problems!

    My symptoms are chronic dry cough, which gets mucousy when I have one of the frequent infections - although more in the winter, and breathlessness - sometimes at rest and often on minimal exertion, as well as extreme fatigue (although not so bad as it was). I also very often have a pain in my back at the rib cage behind my right lung. I lost three and a half stones in weight in about four months due to lack of appetite. The weight loss has now stopped, so I will have to actually work at getting the rest of my excess off! lol

    In the meantime the best thing you can do, as I'm sure you already know, is to stop smoking! It really is crucial. I speak as an ex-smoker, who stopped nine years ago, but am still having these problems.

    Let us know how you get on! :)

  • Curious about your mention of pain in your back in the area of the right lung. I have had same since before I was even diagnosed. It can hang around for weeks and then disappear for a while only to return again. I would best describe the sensation as like someone pressing hard on one particular spot just to the right of my spine in the area of the right middle lobe. It feels somewhat like a bruise - but on the 'inside' not the outside of the back. When I have it I am aware of the sensation from the moment I wake up - not agony or anything but what a doc would describe as 'discomfort'. Haven't a clue what it is, but if it matches what you are experiencing, then its nice to know its not just me at last! :)

  • Me too !! :)

  • I'm sorry Parvati - I just saw your response to my post. I tend to look at the bottom of the thread to see if there are new posts and I appear to have been missing posts which are posted as a direct response to a particular post. If you see what I mean!

    Your description of your pain in your back sounds very much like mine actually. It gets worse when I feel generally sicker and often when I feel very tired.

    Glad to know it's not just me too! :)

  • Hi annexx, I agree with you, a diagnosis often seems to take forever, not quite sure why though with all the technology out there. I think it's the man power, waiting for the docs etc. My dad went back and for his GP for almost a year with a persistent dry cough and many infections and was sent home on every occassion with antibiotics.

    It was only through a vigilant asthma nurse doing a lung function test with my dad, who noticed his finger nails had changed shape and immediately sent him to the GP who ordered a HRCT scan where IPF was diagnosed.

    It is key to get a diagnosis asap as treatment can start which can help symptoms from progressing but unfortunately, there are so many respiratory diseases out there it is often a case of ruling one out at a time and seeing what's left. The words of my GP. Good luck, hope you get it all sorted.

  • Hi Shazza

    The definition of a restrictive lung disease would be one that makes the action of breathing in difficult - eg. asthma is one of the restrictive diseases as it becomes difficult for the sufferer to get an in - breath.

    An obstructive disease on the other hand lets you breathe the air in, but then traps it making it difficult to breath all of the air out - as in COPD.

    If the only info you have at the moment is that it is a restrictive disease, then it is pointless trying to second guess your situation until you have more to go on as it could be any one of a number of conditions. Even a definite diagnosis of a restrictive or obstructive disease doesn't necessarily mean any major loss of life span. People with COPD with mild or moderate obstruction for example, can expect to live a more or less 'normal' lifespan so long as they give up smoking and follow medical advice. Even with very severe disease many of us survive into our 80's - assuming we are not smoking, avoid infection and exercise.

  • I must admit, Tanyamarie, that my GP took me seriously immediately and started blood tests, x-rays etc. the day after I first saw her. My problem indicated heart rather than lung so I had a ECGs, extra bloods and an echocardiogram too - as well as a hospital admission for severe symptoms. It was during this admission that the cardiologist referred me to respiratory. Every test I've been referred for so far has been done within two weeks, then there's the wait for results and to see the consultant in between. This is the longest wait to hear about a test I've had - about four or five weeks I think. However, in a way that's good because if it's a truly urgent emergency like a cancer it's done within two weeks, so in a way I'm relieved to wait for it if you see what I mean!. It's also a surgical procedure involving a few days as an inpatient etc so it's more complicated than the others.

    I was initially relieved when COPD was ruled out for me as I had seen my father die because of it a few years back. I thought that was the worst disease I could have, other than lung cancer. Then I made the mistake of googling restrictive lung diseases, as that's what is currently suspected, which of course mainly speaks about IPF (Idiopathic Pulmonary Fibrosis). You then see sweeping generalisations about the condition and its poor prognosis. After a wee while of panicking I decided to ignore all of that until I have a definitive diagnosis. Even IF it turns out that I do have that, then I still won't panick as we are all different and react differntly to disease, medication etc. Gosh, initially it was suspected I had heart failure because of the pulmonary oedema - now that was a real panick until I was told it's not that!

    Incidentally, my respiratory consultant also said on my first appointment with him that he wouldn't totally rule out a cardiac involvement with my issues too - even though the cardiologist signed me off and referred me to him! Medicine really isn't straightforward it seems.It would appear that the heart and lungs are so inter-related that it can be difficult to see if a heart problem is causing a lung problem or vice-versa!

    Anne

  • Hello Shazza

    I was diagnosed with mild COPD and Asthma recently. Like you I Googled it, COPD that is and I pood myself, I have come across sites that do say 3 - 5 yrs prognosis for COPD. Luckily a colleague of mine told me about the BLF and when I looked it up I was filled with relief. This site is brilliant as everyone testifies, everyone is helpful and you get a lot of insights not just in to our own disease but other peoples too and it puts things in to perspective. If it turns out to be COPD I've come across people on here that's had it for 20 - 25 yrs. I've not got complacent though.

    My X-Ray came back in about a week and a half. I suppose it depends on the area you live in, some hospitals will get things done faster. Try and be calm and as I always say, there's no point worrying until you know what it is you have to worry about.

    Good luck and keep us all informed.

  • Wow what a great bunch you all are, it is good to read about your experiences. You have all been through alot but it is so reassuring to hear you are all doing fairly ok.

    So glad i came here, i have learnt more from you all in 24 hours than i have the last week googling! thank you for sharing with me x

  • Hi Shazza, Great to hear you intend to give up the smoking. Please don't read anything into 3/5 years, especially as you don't actually know what your condition is yet. If it helps you to know I have had chronic non cf bronchiectasis for 64 years now. You mention your week is up so I hope you will be contacting your gp asap. I know you are worrying your socks off, but really it is best to know what you are dealing with, only then can you manage your condition.

    Just going off thread for a second 'cos I can't find a private message facility but I did press a button somewhere and elian you live 10 miles away from me.

    My aplogies Shazza for that little aside. Please let us know how you get on.XXX

  • They think about it different when they check if you can work though

    dwp.gov.uk/publications/spe...

  • Stitch, it was explained to me that people with a restrictive disease have small, stiff, scarred, inflamed lungs, whereas people with obstructive diseases like COPD and asthma tend to have the opposite - larger than normal and kind of floppier lungs. With restrictive disease you cannot inhale very well, conversely with obstructive disease you can't exhale very well. However, I have read that a person can have a bit of of restrictive AND obstructive disease and this can cause spirometry results to not show how badly a person's lung actually function!

    It's all very complicated and confusing!

    Anne

  • My dad has both. He has IPF which is restrictive and COPD which is obstructive.

  • Hi Shazza, I was dianosed with COPD last year and my doctor has put me on Spiriva one puff every morning keeps me fine all day and till the next puff in the morning, My breathing has been better since I have been on Spiriva. I know I am in the early stages of my COPD but like you I worried a lot about "things" but since being on here and reading others storys I have felt much better and I have had help when I have needed it so good luck with your diagnosis. Keep in touch and good luck with the smoking xx

  • thank you Nancygirl, i'm hoping the fact nobody has rang me about my x ray is a good sign :) It's good to hear your breathing is better after starting meds.

    I'll ring the doc tomorrow and hopefully the results are back (maybe longer with bank holiday!) but after reading the replies on here i see that alot more investigation will be done before a diagnosis.

    Is anyone else living in Belfast on here? Just wondering how quick tests/results/diagnosis are here.

  • Yes it took about 4 weeks for me to complete all my test I had M.I.R. and C.T scans also blood tests and phyical test, they also gave me a hart test and that was o k so that was good news I had it all done at Papworth what a great hospital that is they were very kind to me. Anyway keeping my fingers crossed for you, keep in touch bye for now x

  • if i were you i would give up smoking because i will only aggravate your condition.

    best wishes #

    Elyssia May :)

  • According to my doc's....I have a restrictive lung disease, but they have no idea what is causing it. At first they called it asthma...and then changed that...because all my lung function tests were coming back negative for asthma....my breathing was the same before and after the ibuterol treatment. They ran allergy tests and everything came back average....except the Ige tests...which were high....meaning that i was definitely fighting off something, but what ??? The last three LF tests show that my breathing is getting progressively worse.....My coughing and breathing problems are really bad just before i go to bed and when i get up.....once i get everything coughed up...im good to go , except for the breathing....Forget the cold.....makes me cough like a horse.....Its been 19 months now and i dont thing they are any closer to know whats going on as the first month....so aggravating.....I was suggested to take holiday in a dry climate...so my wife and i are celebrating our 40th wedding anniversary in Arizona in may......two weeks of, about the driest weather you could ask for. I'll let you know how that works....as far as the back pain everyone is referring to....i to have that...and they are also sending me to the cardiologist for a stress test when i get back....even though i've had several CT scans and MRI's....showing my heart is fine....I go for a Lung biopsy in 4 weeks.....hopefully that will show us something.., good i hope.... I'm really glad i found this support group and know that there are several out there that have , and are, going through the same thing....It helps me cope........Thanks for being there........

  • Hi Charbar. Like you, I have restrictive lung disease with some obscure symptoms. I am 47 and don't seem to fit into any particular category so have to push hard so that I am not overlooked by the Lung Centre at my local hosp. I think my problems stem from muscle weakness caused by Lupus/Connective tissue disease but it's not nice and it's not getting any better. I do get some relief with a couple of inhalers but I am getting regular pain in the right side of my chest through to my shoulder blade - could be muscular strain or inflammatory in origin. I also struggle most evenings, mornings and lying flat at night.

    Not knowing what is going on nor why is probably the worst part and I hope the biopsy will give you some answers. Spending some time in a better climate sounds like a cracking idea (but would cause havoc with my children's education!!). This site is fab and there are lots of very supportive people on board - most are far more knowledgeable than me. Best wishes and thinking of you. Clare

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