The Many Ways an IPF Patient Feels Fatigued
If you have read my previous columns or other columns written by patients with idiopathic pulmonary fibrosis (IPF), you likely are aware that physical and mental fatigue is a major side effect of this disease. In my previous columns, I discussed how difficult it has been transitioning from someone with unlimited energy to someone who fatigues easily, regardless of what I am doing. But what do I mean by fatigue?
When someone refers to feeling tired, usually the understanding is that they are referring to a physical fatigue and the need to rest to let their body rejuvenate. Fatigue from IPF is not just that, it also includes emotional and mental fatigue.
As my disease progresses, I find that not only do I need more rest physically, but I also need more quiet and alone time. This doesn’t necessarily mean I want to be alone, but time in large groups tires my brain and I need quiet to let myself decompress. I also need time alone to process all the emotions I am trying to navigate while living with a lung disease.
Again, it isn’t that I necessarily want to be alone when I am struggling with all the different feelings or emotions of a life-threatening illness, but sometimes the tears and my physical reaction to the emotions aren’t things I want others to see. I will only let a select few people see these raw emotions.
I wanted to explain a bit more about the different types of fatigue that patients with IPF endure daily, based on my own experiences. Maybe it will help other patients and caregivers explain some of the frustrations they feel when always being tired. I am fed up with feeling fatigued all the time, and I want others to know that it isn’t just physical fatigue. There’s also:
Mental fatigue: Sometimes when I am in a room with lots of other people and it is loud or very busy, it’s like I almost panic and need to go somewhere quiet. This never used to be a problem for me, but it happens frequently now after my IPF diagnosis. I still love being around people, and I do enjoy large crowds for short periods, but I need to know I can step away and take a break, as well.
A good example of this was at a recent family gathering, where lots of my cousin’s kids are under 10. They were having a wonderful time together, running around and playing tag and opening gifts. It was beautiful to watch them together, but after about 15 minutes, I needed to separate myself and sit in a chair adjacent to all the action to let my mind settle. I was fine physically, but mentally I was tired. When my brain is tired like this, I need quiet to rejuvenate.
Another thing that comes with mental fatigue is that it is so real that I don’t trust myself to do certain things when I am feeling mentally exhausted. At this family event, I chose not to drive home that night because my brain felt too tired to safely operate a motor vehicle. I don’t know why this is happening after my diagnosis, but I definitely did not experience it before IPF.
Emotional fatigue: This comes mostly from the constant worry, anxiety, and fear of living with a life-threatening illness. It also comes from grieving the physical abilities I once had. Sometimes it just becomes overwhelming and manifests in tears and raw emotion.
Some days I am fine with having to adapt my abilities and what I want to do for a body that is now constantly oxygen-deprived, and other days I miss my old self more than I can describe. Those are the days that I emotionally fall apart. It may sound absurd, but grief over what I have lost and crying because things are so different are very tiring, but also very natural, I believe.
Physical fatigue: This is probably easiest for others to understand, as being chronically under-oxygenated makes your body function less than optimally, leaving you feeling tired and sluggish. Most IPF patients feel physical fatigue for another reason, too, due to constant pain. Dealing with pain in your chest from a constant dry cough, or having your lungs ache and burn due to the fibrosis and not working properly is not easy. When your body is constantly dealing with pain, it physically fatigues much faster.
Do you share these experiences? Let me know in the comments section below.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
ash
Hi -
So good to read this. With any kind of lung disease, the first thing to go is energy - physical. But also, feeling of suffocation or not being able to breathe is anxiety inducing as well. So all sorts of side affects - mental and emotional. I suggest one thing - if one can accept this as part of flow of life, the mental and emotional pain blends into the background, and that I think will allow one to be in the moment and be fulfilled. I really hope that regenerative medicines can reverse this lung scarring allowing people to lead good lives, and also obviate the need for lung transplant. Fingers crossed.
Ed Bokenkamp
I've yet to find much consensus among doctors on what exactly leads to the physical fatigue. One theory appears to be that the inflammatory response results in the production of Reactive Oxygen Species that creates oxidative stress that in turn damages the electron transport chain in Mitochondria. I wish doctors could come up with a treatment that helps with the physical fatigue. Supplemental Oxygen doesn't seem to help much with the fatigue.
ARM
I have fatigue as well but I am also on one of the two drugs used to treat Ipf and I am told fatigue is a side effect. So I don't know but I do know I am physically tired.
Dave Wilkerson
This is Lexus67 I have had IPF for 26yrs I was 41 when I was diagnosed I’m now 67yrs old I have been on Prednizone all that time I’m still kicking I’m on Oxygen most of the time especially when going out and walking when at home I usually can go off the Oxygen watching TV my Oxy will be around 91&93 not bad to get a break off the canula I keep my Oxi meter close by to check my O2,My TAKE THEY CAN PUT A MAN ON THE MOON IN LESS THAN 20yrs but they cannot find a cure for this Terrible Disease,they did for Polio and Tuberculosis. Thanks??
Victoria Cameron
I love you words, you are speaking my thoughts. I can't even shower without the constant mental and physical fatigue creating anxiety. I find myself waiting longer to do things, especially if they require physical demands like climbing stairs. When I am sitting in a chair or lying in bed I feel normal until I have to move and breathe.
irene blanco-hamada
As I was reading your article, my thoughts were of my son who died of IPF at so young an age (30). What you said is all true. He was never able to verbalize his thoughts and feelings to me, as everything went so fast. After 25 days, he left us. I saw the physical fatigue. He could only take baby steps because it tired him to walk. Brushing his teeth and taking a shower were difficult tasks to do (he had to be assisted). The first days he still could sit but, as the days passed, he would rather lie down and sleep; but he never had a good sleep. Eating was no longer a pleasure; he could only take in a mouthful or two because eating exhausted him. But, through it all, my son put on a brave face. He never let me know the pains and aches he was experiencing. He was uncomplaining. He had always been that way. That's why even after almost 7 years, I still mourn his loss.
Thank you for this beautiful article. It is like a tribute to my son.
...My son is Jonathan Ian Blanco Hamada of the Philippines. He was 30 when he succumbed to IPF on July 29, 2011. Our country had no support system for people afflicted with this illness. No one ever heard of IPF before. On his own my son researched online about his illness. It is in this regard that my family came up with a support group for disease awareness of IPF.
Glynn Booth
I understand what you are allright saying. I am 70 and was diagnosed with ipf 5years ago. I am in bed and have been sleeping for a week but I am still tired. I cry I get low moods I get frustrated at times. I mostly have a good sink wash 3 or 4 times a day then I'm exhausted pre ipf I showered every day I was a very keen cyclist. They say exercise is important I'm sure it is but when you are breathless just walking from one room to another you are out of breath and exhausted and that makes it difficult to be motivated to exercise. They say pace yourself out it's not easy. Aĺl I can do is mostly read and that is getting more tiring. My doctor said ipf is relentless and he as just retired saying they are no nearer a cure now than when he started training. Some medical people are saying people think cancer is the biggy but they say coping with ipf is more difficult to live with than ipf. I have lost one or two friends to cancer including my father and they could breath and get around easier than me until near the end. I find it a daily battle with the mind and the body and ipf knocks the stuffing out of both. I'm sorry for waffling on its the longest text I have written and it's helped me to òffload a bit thankyou if you have read this and understood ìt and not found it to boring. I would like to join up and that living in England does not make it difficult. Blessings Glynn Booth
Charlene Marshall
Hi Glynn,
Thank you for reading my columns and reaching out via the comments! Sorry to hear of the drastic change this disease has thrust upon you and all of us - it sure can be cruel, can't it? The fatigue is exhausting to deal with, despite everything else, and one of the hardest things about feeling tired is: no one really knows how tired you are because they can't feel/experience it. Embrace the things you can still do and try to spend your energy on what makes you happy, even if it is reading. I know that is easier said than done. Hang in there - there are a lot of great researchers around the world dedicated to finding something to help us live with IPF or better yet, a cure for this disease. I understand the need to vent, so never feel like you need to apologize! While I wish none of us ever had to deal with this terrible disease, I am thankful for this community and that others "get it". Have you joined the PF forums yet? That is a great online community with members from all over the world and it's free. You can find us by clicking here: http://pulmonaryfibrosisnews.com/forums/
Feel free to write any time!
Charlene.
Marilyn Lancelot
I was diagnosed with IPF this year, last year and the prior year. No mention of seeing a lung specialist, just that there was no cure. I had no idea of the seriousness of the problem. My heart doctor asked me why I had not seen a lung doctor and I said I didn't know. So he suggested I ask my PPO to do just that. I did and the earliest I could be seen was five weeks. I have two weeks to go. With each day I have more questions and with each answer I have two more questions. I have quite sever fatigue, blurry vision, and a few more minor issues. I have no idea what to do, when to do it, or what is the prognosis. I know there is no treatment but that's all I know. Couldn't even find a support group in my area. I am 89 years old, female, and live with my daughter in Sun City, AZ.
Charlene Marshall
Hi Marilyn,
Thank you so much for reading my columns and reaching out via the comments. So sorry to hear of your diagnosis, especially with no offered referrals to a lung specialist. Hang in there - hopefully two weeks goes by quickly, and keep track of all of your questions. I find it helpful to get a notebook specifically for my IPF diagnosis and write questions I want to ask in there for appointments, or even medication dosages, reminders, etc. I hope the appointment goes well, and hopefully the specialist can refer you to a program with a multi-disciplinary team, which might include a support group. Feel free to write any time in the meantime! While I wish none of us ever had this disease, there is comfort in knowing others understand.
Kind regards,
Charlene.
Roger Coles
It is very heartening to read other IPF patients have the same feelings about fatigue that I have. I was diagnosed 4.5 years with IPF and was involved in the trial for Ofev here in Australia. While I had quite a few restrictions over that period, it wasn't till the end of May this year when I was admitted to hospital for 9 days and they changed the medicine to Esbriet that I have been totally fatigued. I had a blood clot on one lung; a virus - not Corona - but something picked up in the hospital, and a reduction of capacity in the left lung. Since coming home I have to make a huge effort to shower myself, and find that after I get up and take breakfast I want to go back to bed for a 15 minute rest. All this has been very disheartening and I have gone from a very positive person to someone who cannot see much as I look down the road into the future. I am luckier than most and have a great wife who has been a rock over the past few months. Like many who writer I had never heard of IPF till I was diagnosed. I have only learnt recently from reading a comment on this site, that one of Esbriet's side effect can be developed tiredness. So thank you to all the contributors. I have spoken about this to my lung specialist who doesn't believe it is the medicine but a case of sleep apnea. So am down for a sleep study in early January, but when I get the results I am sure my tiredness comes from Esbriet rather than my sleep habits. Anyway all the very best to every reader this Christmas, and may 2021 be a much better year for all of us.
Charlene Marshall
Hi Roger,
Thank you so much for reading my column and reaching out via the comments. It sounds like your diagnosis was similar to mine (April '16) and I'm so sorry to hear about the issues you've had, blood clot, virus, etc. I'm so glad you have your wife who has been by your side, and helping you navigate this terrible illness. We certainly need some good things to emerge for all of us in 2021. Hang in there, I know it is hard, but having a positive mindset really does help. May next year be better for all of us!
Sincerely,
Charlene.
Joy Hoffmann
I wish people would talk more about progression of PF.
All I have is fatigue and shortness of breathe.I am 83
Timeline for those who comment
Everyone is too. Vague in comments.
Specificity please.
Charlene Marshall
Hi Joy,
Thank you so much for reading my columns and reaching out via the comments. Sorry to hear you're dealing with this cruel lung disease as well! I think folks try to be general regarding the disease (vs. specifics) because it is so complex and we aren't medical professionals. Therefore, it is important to stick within our scope of knowledge, which is just sharing the patient experience. Is there something in particular you're looking for information about that we can help?
Charlene.
Joy Hoffmann
I have had 2 breathing tests.
One in March of 20 and one in Dec of 20
No change indicated.
I am able to , at 83, walk 4 miles with no shortness of breathe
I am on OFEV (150 mg 2 x a day) taken on a full stomach.
I eat binding foods such as cheeses and bananas and have loose stools about once a week.
I take Vitamins C and D.
I also take zinc, turmeric, and green tea tablets.
I am on cholesterol and blood pressure meds.
I notice shortness of breathe when I go from sitting to moving about.
It lasts for just a minute or two after I sit again.
I stay away from alcohol .
I eat blueberries , walnuts and almonds one my cooked oatmeal each morning
I also ear lots of fish and not so much beef.
I am in a very healthy state except for PF.
My 72 year old sister died in 2014 from PF before.OFEV was available.
My Pulmonary doctor said “ it may have done all the damage it is going to do”
So that is my tale !
Thank you for your response
Charlene Marshall
Hi Joy,
Thank you so much for your response and for sharing all the things you're doing to remain as healthy as possible with IPF. It sounds like you're implementing some fantastic things to help your body with this disease. I think I will start doing some of the things you are, and I sure hope your doctor is right in terms of the disease not causing any additional damage for you. I'll keep my fingers crossed :)
Charlene.
charles van swol
i am 81 yrs old i was diagnosed with iIPF 13 yrs ago I am on 5 liter of oxygen 24/7 the only thing that makes me keep going is my faith in JESUS knowing I will be going to a better place. I am fatigue most of the time. today I didn't get dress it helps to hear of others have the same troubles. I hope you all have JESUS in your lives.