Recently diagnosed!!

Hi I have recently been diagnosed with an ILD & Sjorgens Syndrome both doing there thing in my lungs! Consultant tells me it is rare to have both these in lungs at once. Sleeping is my main problem obviously along side all the breathlessness & symptoms associated with ILDs. Does anyone else have difficulty staying asleep & how do you cope with it? Any advice? My 100MPH lifestyle has come to bringing halt while having necessary but invasive treatment. Help

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  • I find that sleeping with a fan on me does seem to help but does not solve the difficulty of sleeping when struggling for each breathe.

  • Thank you

  • Hello there, I have fibrotic NSIP and have recently had a course of methyl presnisolone, that was about 10 days ago, I am on 15mg presnisolone a day and my breathing is getting so much better each day, I also have sleep apnia and sleeping is a big problem, however I just put up with it, don't let it stress you out, thats the worse thing you can do, you will learn to live with it, I wish you aall the very best anbd hope that it does start to get easier for you.

  • Thank you ๐Ÿ˜Š

  • Starting to work on strategies re lack of sleep.I will win!!!๐Ÿ˜€๐Ÿ˜€

  • Thank you ๐Ÿ˜Š

  • Morning wenswoo l care for hubby Pete who has Sarcoidosis (ILD) and COPD (Bronchitis) and struggles with sleep. He goes off ok but wakes in the night and gets up at around 4.30. This leaves him tired so he sleeps during the day.

    We don't worry too much though and just cope with it. Each day brings different challenges but we are lucky to have each other.

    Take care xxxx

  • Thank you ๐Ÿ˜Š

  • Hi wenswoo,

    I have pulmonary fibrosis caused by rheumatoid nodules in my lungs and scaring in both upper and lower lobes. I also have sjorgens, I was diagnosed last September. I sleep with 3 pillows and a V shaped pillow, I used to wake up after a couple of hours coughing and struggling to get my breath but since using the V pillow most night's I manage to get around 5 or 6 hour's before waking up so its best to sleep more upright.

    As vyner said you do get to learn to live with this. I recommend that you ask about being referred to go for pulmonary rehabilitation, this helps you understand this disease,teaches you breathing techniques and what exercises help.

    Wishing you all the best. Linda xx

  • Thank you Linda that is great advice. I have just started a treatment programme & Consultant has said nothing else will be set up until the half way point of treatment to see if there has been any improvement. Early days I know. I am a 100% positive person who believes in self help & knowledge. Being told to wait rest & to see how treatment goes is driving me mad. Can see all the logical reasons why but just want to get it all over along a bit. Thanks again๐Ÿ˜Š

  • Thank you I too have v pillow but at moment since treatment began have not needed it but I will hold on to it ๐Ÿ˜€

  • Hello.

    I have RA and ILD. I know EXACTLY what you mean. My life more or less stand still too. I know how frightening this is.

    I am glad you found this site. It will be very helpful for you. Please do share your good times and bad times. Everyone here is helpful.โค

    Sending a hug.

    Cas xx ๐Ÿพ

  • Ah thank you Cas, still getting my head around it all & trying to find out as much as possible. Everyone here does seem helpful & friendly thank you ๐Ÿ˜Š

  • Hi, I am interested in the fact that you have Sjogren's that is affecting your lungs. I too have Sjogren's and am having trouble with my lungs. My main problem is when I wake up in the morning, no matter what time (could be as early as 3am), I have what can only be described as discomfort in my lungs, sometimes I get to sleep again but wake up with the same 'pain'. What are your 'sleep' problems?

  • I know exactly what you mean if I lay n my back it feels like someone is sitting on my chest! I also have a bruised feeling on my right lung/ ribs. Sjorgens is I believe rare in the lungs. Sleep problems are wakefulness. Last night awake from 2a.m till 5a.m. Got up had a hot drink. Trawled sites to find out more . Probably not the best thing to have done but I was bored. Good thing was I found this site & signed up here! Every cloud ๐Ÿ˜€

  • Hello and welcome Wenswoo (sorry I can't help with your sleep problem)

  • No worries & Hi ๐Ÿ˜€

  • Hellol Wenswoo, and welcome. I'm sorry about your sleep problems. Have a cup of tea and come on here for a chat - there are quite a few people who are awake in the small hours. Take care, Sue x

  • Ha ha I will Sue ๐Ÿ˜Š I presume it just be part of the condition?๐Ÿ˜Š

  • Not necessarily, Wenswoo. Think it's just how things go - lots of people find it hard to sleep. x

  • Hello Wenswoo

    Welcome to the group. I have Interstitial Lung Disease (ILD), Ehlers-Danlos Syndrome (EDS) and Hepatitis C (Hep C) (infected during a 6 pint Blood Transfusion at age 18 in 1974). I have great difficulty sleeping but also cannot stay awake and frequently feel so exhausted that I fall asleep sitting up. This is terrible when this happens because I end up with such terrible pain in my back when this happens.

    I was determined to sort the problem out and I was previously waking up breathless. My Consultant told me to try using my Oxygen during the night and this helped a great deal. I am not sure if you are on Oxygen. Then after getting that sorted out I was sleeping longer and it was then the pain which was making me wake up. More help needed because I was suffering from a lot of anxiety because of having my DLA being swapped over to PIP. I became extremely anxious and to solve both problems - the sleep and the pain - I asked for Amytryptaline. This has helped me a great deal - not with the pain but with the sleeping.

    Sleeping tablets such as Zolpidem or Zoplicone? are a complete waste of time because they only work for people who have a problem falling asleep. If you are someone who can get off to sleep but keep waking up you need to try to monitor what you think is causing you to wake up. Is it your Bladder? Pain? Breathlessness? Too hot or too cold? Once you have analysed all these issues try to tackle one thing at a time and to get off to sleep a mug of hot milk is just as good as Zolpidem and a great deal safer!

    Make sure you don't do things which stimulate you late in the day as these things will get your brain in over-drive and stop you from sleeping.

    Are you on Steroids? When I was first diagnosed with ILD they did a Lip Biopsy to see if I had Sjogren's Syndrome but this was negative in my case. It was just a Rheumatologist who was determined to try to prove that I did not have EDS! I don't even know why I even let them do this test. My diagnosis of EDS is very reliable but there are many Consultants who just want to try to prove it does not exist.

    Anyway, I was going to say that when I was first diagnosed with ILD they put me on Steroids - Prednisolone - I had terrible adverse reactions to Prednisolone and I put on 5 stone in just 3 weeks! They said it had caused me to develop Cushing's Syndrome which can be a side effect to taking this drug. If you are on Prednisolone I don't think any of the above will help you to sleep at all. The drug stopped me from sleeping the whole time I was on it.

    So please let us know what you think is causing you to wake up. This will help people to give you more focussed advice. Also whether you are on Steroids, or any pain meds, etc. Also whether you are on Oxygen, etc.

    Great to have you in the group. So sorry you have these two conditions to cope with. It will take you a while to adjust but you need to start finding some hobbies to keep you distracted from the pain. It was a lot easier for me as I have been disabled all my life really so I already had many hobbies which I would rotate according to which part of my body was affected. lol

    Anyway Stay Strong, Take Care and if you can't sleep don't forget to come and chat here to the very friendly people in this group.

    Keep Smiling or in my case

    Keep Twinkling

    All my Love from

    Twinkling Star. Xxx

  • It sounds like it is the steroids . I too am on prednisolone.weight ok so far but I am monitoring. I am on amatriptalyn for another unrelated reason, migraine prevention post head injury 9 years ago. Yes I do have oxygen but since having an intense infusion course & now daily dose breathing at the moment had improved greatly. I am not in much pain fortunately, I do have a high pain threshold. Headaches are more frequent. I only use paracetamol at mo.

    Re the sleep it is just a sudden wakefulness๐Ÿ˜€ ah well I now know I can pop here & have a chat. I am by nature an upbeat person...I am determined to keep this spirit up.

    Thank you Twinkling star you have been very helpful๐Ÿ˜Š

  • P.s. I am also know as sparkle!! ๐Ÿ˜€๐Ÿ˜€ Thank you for your kind words. You have been very encouraging.๐Ÿ˜Š

  • Hi, I am diagnosed with Lupus (Mixed Connective Tissue Disorder) which has damaged my lungs (Pulmonary Fibrosis). Along with other add ons including Sjorgens and I too was finding it difficult to find the right position to sleep in bed so I bought a adjustable bed.

    However I don't sleep in bed the whole night through. I'm usually coughing and so as not to keep my husband awake I get up and make a hot drink and then stay up until I feel sleepy again.

    I do use ambulatory oxygen and I see two consultants in a combined clinic. I am currently having Rituximab to slow down the inflammation in my lungs.

    I don't let this diagnosis get me down and I try to go out and give back to others who are less fortunate than me.

    Hope this helps.

    Love and hugs

    God's blessing to all.

    Maureen xx

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