Different Types of Fatigue for Patients with PF.

[Katie Bagshawe]

Definitely fatigue and general tiredness is a major symptom of living with lung disease due to the restriction of oxygenated blood around your system, plus I agree with your notion on the mental health impact as depression and anxiety will give the same fatigue and tiredness that the low saturation levels will. That’s why I believe it’s so vital a persons psychological health is assessed and treated just as equally as the physical impact of symptoms.

I think it’s important to rest, and to also take into account that the medications in themselves will have side effects to make you feel out of whack. Sometimes the sheer thought of doing something will be enough to make you feel fatigued and tired. That’s why it’s really important for anyone’s psychological health, it’s important to try and do a bit of gentle exercise each day as it helps encourage better moods. Of course the foods you’re eating will impact your energy levels, and ensuring you’re well hydrated as well. There are so many threads to dealing with fatigue that it can be exhausting in itself to figure it out.

At the end of the day I think it’s important to put yourself first, don’t put too much pressure on yourself and lower your expectations of what you can achieve. I know it’s difficult, and heart-breaking to face your mobility declining, but by accepting and giving yourself reasonable challenges, it will be far easier for you to bite off these little chunks and increase your stamina bit by bit and tackle the fatigue you face. Likewise, it’s vital to accept the days when you are facing spectacularly low energy levels and instead to find other ways to challenge yourself that requires less effort such as reading, puzzles, painting or crafting.

It’s nice to hear from you all though because obviously I only have the point of view as someone as a Carer. It will help greatly to understand the psychological toll it can have when facing fatigue and general tiredness.

[Mark Koziol]

Hello Kate, again I must commend you on your knowledge of pf. Everything you have have written is spot on. Many of us who suffered through this disease have had their sleep altered in a negative way. Since I started having problems my sleep patterns were disrupted. I still go through interrupted periods of sleep even after transplant. If I have a terrible night sleeping it will severely affect the next day. I feel it takes strength from legs, it usually lasts  until I get a nap in. I wholeheartedly respect you because how you treated your father. My wife has even commented to me after reading your replies. She was and is an excellent carer as and respects your values, passion, and you as a person. Thank you Mark

[Rene Hakkenberg]

Hi Charlene, thanks for your informative piece on fatigue and sorry you are experiencing it excessively after your trip. I wonder if the 10 hour drive isn’t the main cause.

In my experience Ofev is the main culprit of fatigue. When I temporarily go off Ofev due to stomach and weight issues I find myself much less fatigued, even when physically active. As soon as I am back on Ofev the fatigue returns.

Thanks once again for all the good work you do for us. René.

[Charlene Marshall]

Hi Rene,

So nice to hear from you – I can’t believe its been nearly a month already since we FaceTimed! How are you and Sol doing? It looks like I may have to push back our visit, but I’ll send more about that in an email.

You certainly raise a good point about the drive not necessarily being the culprit of my fatigue but instead the Ofev. I’ve been on the medication consistently since starting it, as so far (fingers crossed) I haven’t run into a lot of stomach/gastric issues with it so maybe its building in my system and causing more fatigue? Maybe it is a combination of both the trip, drive and medications? Not sure. How long do you go off the Ofev when you have those issues Rene? I am kind of interested in doing that and seeing how my body reacts but I also don’t want to run into issues when I start it up again. I suspect that I should just continue with it if I am tolerating it well…

Talk to you soon and thanks for sharing your thoughts on this topic! Please send the sun and warmth this way, we’re slowly warming up  to spring where I am in Canada but it is taking a long time 🙂

Hugs,
Charlene.

[Susan Howitt]

I am not on Orfev nor Esbriet  (refused both) but suffer from chronic fatigue, haven’t the energy a lot of the time to do any of the things I used to take for granted and it has only been 11 months since my diagnosis.  Don’t think it is mental fatigue, just physically exhausted, I do know, now having bought an oximeter that my blood oxygen gets critically low if I do almost anything, just done the ironing, that’s not very physical now is it?  B.O 83.  Getting a full wheelbarrow of logs in takes me down to 79 !! if I sit down and do nothing I am usually around 93 to 95. I do try and take the dogs for a walk every day somewhere as flat as I can find it, not easy here.  Not seeing pulmonologist until August, maybe I might need an appointment sooner?

[Charlene Marshall]

Hi Susan,

Do you have supplemental oxygen? If not, yes, absolutely I’d request your appointment sooner and get an oxygen tank/portable oxygen concentrator. I know this is hard news to hear, I didn’t want to get my oxygen at all but I felt so much better when I started using it. If your sats are going down to 79 (even if they do recover quickly) you are leaving your other organ severely deprived of the oxygen they need, from what I understand anyways. You don’t want to damage your other organs from being under oxygenated! Can you book an appointment sooner? I suspect being sufficiently oxygenated by using a portable concentrator, it’ll help your fatigue as well! Let us know how you make out… hang in there!
Charlene.

[Susan Howitt]

Hi Charlene

 

No not on supplementary oxygen, beginning to think I need to be.  I do have a phone number from the hospital that my doctor can contact or I can phone the lung nurse that does the 6 minute walks.

Sue

[Charlene Marshall]

Hi Sue,

I’m no physician of course, but I suspect you may need supplemental oxygen as well. Especially if you tell them your sats ran down to 79, even just temporarily as this is very low. I’d encourage you to call that number and explain the situation to them, see what they say? I really wouldn’t wait until August…

Charlene .

[Susan Howitt]

Thank you Charlene, in my heart of hearts I know I need to make that call as 79 is a fairly regular occurrence as I need to get wood in every other day.  I also own a gîte (little holiday rental place) and the season has just started, every change over the usual thing of cleaning up after people that are supposed to have done that, making the bed etc (that takes me down to about 83)  mowing (masked up) the lawn  of 2,000m2, luckily have a ride on mower for the gîte and here.  Realise that it is anything that involves bending that brings my sats down low, really uncomfortable and makes me cough and now it is the pollen season !!!

[Charlene Marshall]

Yes please do call Sue, it is really important.
Hang in there!
Charlene.

[Laura Bush]

Good morning everyone! After reading all of your comments I can definitely relate to so much of what each of you have said. I am having trouble getting used to being so fatigued, and I think accepting that it is a new way of life is depressing. After one holiday family dinner that my daughter and her husband had prepared and hosted someone yawned and said how tired they were. My daughter concurred and then I said “me too”. My daughter looked up at me and said “from what?”! She didn’t understand why I was tired, as I had not done all the work she had, and that I had a pretty sedentary lifestyle these days. It hurt my feelings initially, but then I realized that she didn’t know that I only get a couple hours of sleep at a time and am up most of the night. She is beginning to understand my limitations,  especially when it comes to playing with my 2 and 5 year old grandsons. I’m not on supplemental oxygen yet, but might be after my next doctor appointment in May. I was just diagnosed in October of last year, so we are still new to the ups and downs of this disease. I hate that I often have to change or cancel plans because I don’t feel up to going. Getting dressed and ready to go anywhere causes me to get short of breath. I also have chronic sinusitis and bronchitis so I have not been able to schedule the Pulmonary Rehabilitation program that my doctor prescribed. I’m sure it will help,  but with allergy season now upon us I am already having symptoms so an infection is pretty inevitable. For me personally  I think that the hardest part of accepting that I do have Advanced Pulmonary Fibrosis is that this is the best I’m going to feel. There’s no chance that it will go away or get better. I am grateful that these forums exist so that we can share our concerns and support one another. Thank you all for your comments!

Laura (A.K.A. Lowe)

[Mark Koziol]

Hello Laura, I am happy you reached out and commented on Charlene’s topic. I am sure most of us pulmonary fibrosis patients experience bouts of fatigue. I’m my opinion lack of sleep is the number 1 perpetrator of fatigue. I have had a transplant and sleep is still the predictor of my day. If I have a good night sleep and stay properly hydrated I will have a great day and the opposite is true if I do not have a good night sleep. As far as your daughters comments, maybe have her attend doctor appts with you. Have her make a list of questions for the doctor that will help her understand your disease a little better. Laura please take care of yourself and best wishes. Please keep engaging in discussion. Mark

[Sandra Koenig]

So happy you are touching on this topic. Seems like the start of Spring that everything has changed for me. The coughing jags are back and the extreme fatigue has set in. I can get 8 hours of sleep and by 1:00 in the afternoon I take a two hour nap. If I do anything physical I’m in bed for the night @9:00 p.m.  I feel more comfortable laying down anymore than sitting. We are leaving for a vacation for Prague in a week and I’m a bit scared that I’ll be exhausted everyday. I’ll have my oxygen but don’t know what will happen when I “Hit the Wall”. This means I need to sleep. We have limited our tours to basically one with another just being a hop on hop off bus. Any suggestions? Thanks.

Sandy

[Charlene Marshall]

Hi Sandy,

Thanks for getting in touch and sharing your thoughts on this topic, although so sorry to hear you’re dealing with an increase in fatigue too. This week has been brutal for me, coupled with dizziness. Not sure what is going on!

I never thought about the change of season, and how that might be connected to this excess fatigue. Like you, I can sleep 8-10 hours at night, and then have a nap in the afternoon and be back in bed early evening and sleep through the night again. The fatigue has definitely been the worst I’ve ever had it in the last few weeks. Have you found anything that remedies this, other than just giving in and napping?

I’m afraid I don’t have a lot advice for travel tips. I had a great time in NYC last year despite the IPF-related fatigue, but I did have to just give in and rest when it hit. We booked a hotel that was central to most of our tourist destinations so I could go back and nap easily, I suppose that is the best advice I have. Keep your oxygen with you, and ask for help whenever possible to reduce physical exertion – ie. having someone carry your oxygen on/off the bus. Goodluck and enjoy your trip!

Charlene.

[Phyllis]

Good afternoon!  I’m new to this forum but found this topic very interesting.  I’m not new though to IPF and Ofev.  It’s been about 3-3 1/2 years.  This topic of fatigue was very interesting to me.  I’m in the process of decreasing my antidepressant thinking that probably isn’t helping me with fatigue.  Don’t know what the decrease will do otherwise.  I’m doing this on my own.  I’m just tired of being tired.  I used to be a very active person and now some days I just don’t want to do much of anything, then the day is over.  The winter was most brutal and that about did me in.  I need warmth and sunshine.  I live in Ohio.  I’ve exercised for years and now I have a hard time even getting to the YMCA.  Although I do feel better when I go.   Especially if the sun is out.  I’ve always been a early morning person.  Not so much any more.  I’m not on oxygen as my level is good other than it dropped low after my 6 min walk last appoint.  But it made a good come back.  Hasn’t seemed to be a problem since.  Also a year and half ago I was diagnosed and now dealing with colitis issues as well and all the side effects that go with that.  My family have all gone to appoints with me in the past but I don’t think they fully understand or as long as I’m still up and going I’m ok.  I understand Laura’s concern from her daughter’s comment.  I just want to feel energized again if that’s even possible.  Thanks for letting me vent.  Phyllis

[Charlene Marshall]

Hi Phyllis,

Thanks so much for writing and sharing your thoughts on this topic. Also, welcome to this wonderful community of support for PF! While I wish none of us had to deal with this cruel disease, the people on this site are really great and always here to help whenever we can…

The IPF-related fatigue sure is something I am struggling with lately, and it is so hard to manage isn’t it? We want to be active to help our bodies, and even to try and maintain some normalcy but it is very rare that IPF allows us to do that. I was just ‘complaining’ to a colleague earlier today that when I feel good, I want to do things but then my body pays for it with how tired I get, it is like this delicate dance of not too much, but not too little. The sun and warmth really helps me too, I feel like a totally different person in the summer months vs. winter. One thing that helped my mood (not fatigue, but the mood) was starting on a prescription strength vitamin D supplement. I also discovered that many folks on the forums with IPF are on this as well! It might help with the mood and help you get off the antidepressant if you think that might be contributing to the fatigue? Just a thought I had.

There are some supplements that I know folks on the forums have mentioned help with their energy levels too, worth having a read through some recent posts if you feel upto it 🙂

Glad your oxygen levels came back up after the 6MWT. Hang in there, and feel free to write anytime – welcome again, and please know you aren’t alone in this. Vent away, we truly understand….

Warmest regards,
Charlene.

[Susan Howitt]

Hi Laura ( @lowe ),

Sorry about your daughters’ comment, hurts doesn’t it,  I had exactly the same thing, don’t think any one, except on this forum, can really understand the utter fatigue and the fact that we have to force ourselves to do anything. Breathing is exhausting, my daughter understands now as I have visibly lost weight in my face but gained weight, full of water, and that when I went to the doctors  last week doc panicked and made a hospital appointment for the same day, couldn’t do that, have dogs etc, so going in today for a week, think they will put me on oxygen as I regularly go down to under 80.  Hoping that being able to get enough oxygen will help with the dizziness, mental dullness and the utter fatigue, like you I only sleep max 4 hours a night, I do stick Vicks on the outer rims of my nose and that mostly helps with the *stuffiness*.  Vit D prescription dose does help with the mood too as Charlene says. I have 4 lung diseases at once and the PF is from a known cause (work) so other than oxygen there is nothing I can take to help, small doses of prednisolone helps diminish  the coughing, found small dose better than large   All this pollen is not helping me, live out in the sticks so tree pollen, dandilions and flowers and flowering trees of all descriptions, so no pollution but pollen is spades.  Had trouble last year at the same time and this is when I was diagnosed after years of being told I had asthma.  Off on my little *holiday* in a couple of hours so see you all when I get back.

 

A bientôt

Sue

[Bill Rotureau]

3 years in since diagnosis of IPF. Oxygen 24/7 @ 6lpm. Taking Ofev since diagnosis. Age now 74. Fatigue is my new normal. Better some days, don’t want to move on some. Hurt my back and am almost recovered and that stopped my exercise for the last 3 months. When exercising (3+ miles on a recumbent stationary bike, multiple reps with light hand weights) the fatigue was lessened as my stamina improved. Hope to get back into my exercise routine soon.

My numbers  from my last PFT were FVC 50%, DLCO 24% and those are steady since diagnosis give or take .02%.

But fatigue is my normal now and I adjust my expectations accordingly. BTW, I have been on Hospice for three months now.

[Mark Koziol]

Hello Bill, I am sorry to hear of your current condition. With this disease you can only do what your body will allow. Hopefully your back will cooperate and you can get back on your exercise regiment. I like to hear you are using weights. In my opinion this helps tremendously. Unfortunately fatigue is a common theme among PF patients. Thank you for commenting. Please keep us informed of how you are doing. Mark

[Steve Dragoo]

@Charlene-Marshall

Hi Charlene,

I have read driving a car requires a lot of brain activity – much of it goes unnoticed such as constant spatial re/orientation. High brain activity can burn more calories than we think. That seems to indicate that we experience a brain-drain in more ways than one ergo fatigue that can last several days. If you have other mental/physical stressors that will most likely compound the situation, especially with an already comprised system. – I can witness to that… – Steve

[Charlene Marshall]

Thanks for your kind words my friend, Steve, it is always nice to hear from you.

I am starting to agree with what you read: driving takes a lot of mental energy out of us for sure. Driving on the highway for so long when I went to Quebec was really exhausting, and truthfully, I think it took me a lot longer to recover than I anticipated! The added brain activity, fatigue and physical or mental stress, compounded by lower oxygen levels creates the perfect storm for being tired I think! It’s taken me a few days to recover but I am getting there for sure, less fatigue…

I hope you are doing well 🙂
Charlene.