A Recent Difficulty: Waking Up In The Mornings.

[Al Aceituno]

Hi Charlene,

I feel exactly the same way in the mornings now – and it is new. The only thing that has changed is that I tapered on Prednisone from 15mg a day to 11 with a goal of 10. I have steroid induced osteoporosis so trying to cut back per doctors orders and I have also noticed my bones (hip, back and right knee) ache more. Nothing has really changed with my diet or routine – I am more fatigued in general too. My breathing is more labored now – needing 8-10 lpm when moving around with an Oxydizer.

 

Al

[Charlene Marshall]

Hi Al,

Thank you so much for sharing your thoughts on this topic! I am curious to hear from others who are experiencing this recent difficulty, as it is not something I’ve had before. The change in medications may be cause of excess sleepiness for you, do you think? I haven’t changed any medications recently (I skipped a medication for 2 days accidentally, but I can’t imagine 2 days would make much of a difference?) … so I’m not sure the cause of this difficulty getting up in the morning. I fear that it might be our bodies tiring from the increased need for oxygen that is causing us to be tired? Once I am up, I can manage pretty well but I still am shutting off my alarm multiple times in the morning before I get up. I hope this changes soon as I am still working! Does anything help reduce this for you?

Charlene.

[Steve Dragoo]

@charlene-marshall

Hi Charlene,

Lately I am beginning to feel tired and low energy in the morning. I attribute that to no O2 yet for 6 weeks and no laser.  I did good until we returned fro Malaysia but I see a pulmonologist today – opefully to find a concentrator locally to avoid traveling to go get one in Manila.  Also really want to find a class 4 laser but…..

So B complex, D3 and K2m7 help with energy but still tiring too easily and the Oximeter generally says I am good to go…

Hope you are well now… Steve

[Al Aceituno]

Still working too and trying to figure it out. I don’t think it is the change in meds but am not sure.  I sleep with a concentrator and check my sat level in the middle of the night and it’s fine. It may just be that I am laboring more to breathe all day and just am tired? I started taking B12 and B6 to see if that helps. My hips, legs and back ache too – I attribute that to Osteoporosis so that could be a factor. I’m scheduled for an infusion of Reclast – I’ll take everything over with my doctors in two weeks. I’ll keep you posted.

[Charlene Marshall]

Hi Al,

Nice to hear from you – thank you for writing and sharing a bit more about your experience with this recent difficulty. Working with this disease is so tough, isn’t it? I wish it was something I didn’t have to do but unfortunately bills and debt don’t care if you have a chronic illness. I also don’t want to start disability until I absolutely have to so I am feeling a bit of being caught between a rock and hard place. I find I am also exhausted during the evenings, after working all day. I read you use a concentrator at night, but do you wear it during the day as well? This might help with preventing your lungs from working so hard…

Do keep us posted on how the Reclast dose goes, I hope it goes okay!
Sincerely,
Charlene.

[Steve Dragoo]

@al-aceituno

Hi Al,

Yep everyone has a different situation and hopefully some of the other forums here will shed light on some ideas that may help you.  I have  several different things I do/take everyday that do help. But if you have PAH that can cause breathlessness even though the O2 looks good, usually it is accompanied with a rapid increase in heart rate.

Steve

[Anne Philiben]

I have a real problem getting out of bed in the AM.  Fortunately I don’t have to be anywhere.   I sleep a lot and can fall asleep easily.

 

[Wendy Dirks]

Hi, Charlene –

Before I was diagnosed with PF (I have hypersensitivity pneumonitis), I had several clots in both lungs after a history of DVT. I basically slept for two months and was barely awake and sitting up for another month. Afterward, one of the clues that there was something else wrong was the complete change in my sleeping habits a year later. I sleep a minimum of 10 hours every night. If I get less than that, I need a nap in the afternoon. Getting up in the morning is very difficult and I’m rarely out of bed before 11:00. Fortunately, I’m semi-retired so I don’t have to worry about work. I wonder if poor sleep quality overnight due to the PF is responsible for sleeping so long and so late. Once I’m awake, I potter around forever before I’m dressed and ready for the day to begin. It’s frustrating because the day is over then before I feel as if I’ve accomplished anything. I think, unfortunately, that sleeping for long hours is the new normal for PF patients.

I don’t have any suggestions except to try and honour your body’s needs as best you can.

Best wishes,

Wendy

[Charlene Marshall]

Hi Wendy,

Thanks for sharing your thoughts and contributing to this topic thread. Sorry to hear of your struggles and that you can relate to this recent annoyance for me, which is what I call it. I’m glad you don’t have to follow a schedule that requires you to be up and out of bed early in the morning; honouring our bodies needs is so important as you say. I know the quality of our sleep is likely effected by IPF, which may contribute to how tired we are despite sleeping well. Do you use oxygen to sleep Wendy? I think you’re right re: that excessive sleeping is indeed a new normal for those of us living with IPF/PF. Hang in there and thanks for sharing!

Charlene.

[Wendy Dirks]

Hi, Charlene – I don’t use oxygen at all yet but I wonder if it would help me sleep less! At the moment, my medical team thinks my illness is progressing slowly and aren’t doing anything except monitoring me and encouraging me to exercise. I use a steroid inhaler but that’s about it. I hope you manage to find a solution. I can’t imagine how I could work any more. It’s just not possible. Best wishes, Wendy

[Charlene Marshall]

Hi Wendy,

Thanks for getting back to me, I wonder that as well. Maybe your lungs are working hard through the night (and day!) and tiring you out a bit more than you’d expect, which could be relieved with oxygen use? Of course it depends on other factors like your saturations, test results, etc but maybe something to talk to your doctor about. I always sleep with oxygen on, and use it periodically throughout the day – like today when it feels like 41 degrees C here 🙂

Talk to you soon,
Charlene.

[Linda Williams]

Hi Charlene et al.  I am fortunate that I do not have to work any more, age 74. Diagnosed last year with IPF but extreme fatigue for 2 straight months + cough that wouldn’t stop is what took me to Dr. At the time the flu was going around and I thought maybe I had that. Also had pneumonia back in 1993 and barely could drag self across the hall to bathroom. But that lasted less than a week.  I am not on oxygen at all either yet.  But I have learned not to make any morning appointments or plans. It takes me all morning to start to move around much except to get some breakfast (not cooking) and sit in lounge chair.  Going to cardiologist next week for first time to check with him results  of  an echocardiogram I recently had, seems I have probably have Pulmonary Hypertension as well. Fatigue is one of its symptoms also.  These really put a dent in social life as well as working. I do not know how you do it.  I recently had a cousin have to get SSI after a stroke – it took two years to be approved.  Are you sure you want to wait to apply Charlene?  Do you have someone to talk to about this?  Sometimes we push ourselves to continue activities that really are detrimental to ourselves.  I hope you get back to not feeling so fatigued but I think it will continue to cycle unfortunately.   Linda Williams

[Charlene Marshall]

Hi Linda,

Glad you aren’t having to navigate working full-time with this disease, it sure isn’t easy! Like you, I try to be most productive in the mornings or space out what I need to achieve in order to set myself up for the most success. This usually impacts my weekends more than my week day as I thrive with routine, but it is getting harder and harder. Being in an office environment during cold and flu season (coming up) is something I’ve been thinking a lot about as well!

I hope your follow up with the cardiologist goes okay, keep us posted on what you find out re: pulmonary hypertension. Thanks for all of your kind words, I plan on discussing more about work and continuing to be full-time after I return from Hawaii in September. May be time to discuss this more in depth, I appreciate the reminder and sharing your thoughts 🙂

Enjoy your day!
Charlene.

[Linda Williams]

Dear Charlene, thank you. Will f/up.re seeing cardiologist & ? pulmonary hypertension.  I am going to ask him also who he refers to for pulmonogist as I want a 2nd opinion re diagnosis of IPF. A friend was just recently sent to the same one I had seen and he tried to get her on OFEV right away too. As he did me.  I really question why he does this without a fuller workup.   She has seen another pulmonologist who wants to be slower about diagnosis, do more testing.

I am doing only sedentary type work today but listening to a variety of music thru a gift, a Google speaker system. The music really helps my mood.  Prayers for you and all dealing with any respiratory disease.  Linda Williams

[Charlene Marshall]

Hi Linda,

Thanks for your reply! It sounds as though it would be wise for you to seek a second opinion, as a diagnosis of IPF is not always easy; there is literature that says the tests required to make an accurate diagnosis can take months. Therefore, if you fear your doctor rushed through this on you and just pushed Ofev, probably a good idea to get a second opinion, especially from a pulmonologist/specialist in respiratory diseases. Goodluck to both you and your friend, please let me know how you make out.

I also love listening to music – enjoy what makes you happy 🙂
Charlene.

[Robert Obrien]

Charlene, I feel the same way in the morning after being in bed for 7-9 hours.  However, like you, once I begin activity, even if it is just sitting watching TV, I bounce back.  I often feel, though, part of my fatigue is attributable to anxiety.  One’s life turns 180° with this disease and living for me without yard work, golf, walking, traveling etc. is depressing as hell and I am always on guard against letting myself get too down but it is a part of this or any fatal illness and this is a progressive disease and I can tell when I’m slipping and fortunately they keep a pretty good eye on me at MGH where I have been tested for a transplant.  Sometimes I just feel like screaming “Let’s get on with this!” and roll the dice.  Living with IPF is really not living; it’s existing.

[Charlene Marshall]

Hi Robert,

Thanks for writing and contributing to this topic thread. You know, I never really attributed to the possibility of my morning fatigue being anxiety (or depression?) – related. I’d normally not think this would be an issue for me, although dealing with a chronic illness and dramatic shift in your life, as you say, could leave anyone feeling depressed or anxious. I’m so glad MGH is keeping an eye on this for you! Do you know when your transplant evaluation will occur? Another wonderful member of our forums is in the ‘throws’ of this evaluation at MGH right now too. Living with this disease is not for the faint of heart, that is for sure! Thanks for reminding me that I am not alone.

Regards,
Charlene.

[Terri Marsh]

Hi Charlene
I was diagnosed with IPF a year ago at 63. I went through pulmonary rehab and I’m on 02 at night and when I’m up and about.
I was still feeling a lot of fatigue and could sleep till 10 am and still feel tired.
My pulmonologist told me a lot of people with IPF also have obstructive sleep apnea. He ordered an overnight sleep study and I was prescribed a CPAP machine.
It has really helped with the fatigue and brain fog.
Best wishes
Terri

[Charlene Marshall]

Hi Terri,

Thanks for writing and sharing a bit about your story with IPF – it is always nice to hear from others, although I certainly with none of us had to deal with this cruel disease. I am curious to learn more about obstructive sleep apnea and its relation to IPF patients, thank you for sharing that. It might be something I have to look into, as a few other members have said they benefit from CPAP at night. Glad it has helped with the fatigue and brain fog, these are the areas I really want improvement for me! Thanks again, I’ll check into this 🙂

Charlene.

 

[Jim Dawson]

I have had PF for several years prior to being diagnosed. I started using a CPAP machine 15 years ago and about 3 years ago switched to a BiPAP. Still had problems breathing throughout the night as I would gag or cough with the mask on. I upgraded to a new Bi-Pap machine in May of 2019. It has made a big difference in the Quality of night sleep. It does not relieve the fatigue faced when getting up in the morning. I usually have to sleep 2 hours in the late afternoon, priming myself for bed by 10: oo PM. I even take modafinil every day, but that helps for about 4 hours. I literally force myself out of bed, by 7:00 AM. 2 hours later I am still trying to focus on things that need to be done. I have given up on mowing the yard or even home repairs, which aggravates me as I was always a hands-on DYI. I feel sorry for the person or persons who will have to clean out this home once we are gone. Not enough energy to even dispose of our home. Looking on the bright side, the golden years start when we leave our bodies behind. Hope this helps.

[Charlene Marshall]

Hi Jim,

Thanks for sharing your experience about the bi-Pap and improved sleep quality. That is so helpful for those of us struggling to sleep – which machine did you switch to in May 2019 and find improvement? Wishing you the very best, I know the breathless and exhaustion is so hard to navigate as a home owner and wanting to keep up with both yard and housework.
Charlene.

[Linda Williams]

Hi Charlene. It’s Linda Williams again. Had a HRCT scan last week with a copy to a second pulmonologist name on it as well as the first pulmonologist name. Don’t know if he saw it or not, but his office called for me to come in that day. It was his order to get the HRCT scan. So I went in and told him how I felt about him just seeming to want to get me on OFEV and it felt like my further health was not if concern when I told him no CPR, ventilator, tube feedings, or transplants.  He said he did not mean to seem that way.. This time he is the one who mentioned respiratory rehab. Which I told him I would be glad to do. Had the PFT 2 days ago as rehab needs that before I can start.  He even offered to write me a renewal for my Symbicort but I told him I had from PCP as they are who put me on it.  The second pulmonologist was not brought up and for now I will stay as first Dr’s patient. Think my Frank discussion surprised him.  I still have not had a 6 min walk test but not need O2 yet. When I was gathering papers of tests done previously I noted scarring, subpleural reticulation but no honeycomb. Since 2016 so my previous PCP thought nothing about that.  Both the HRCT And PFT remain pretty stable thus year to last year.

This has nothing to do with fatigue which I still have too.  But after three 4-5 hr days in a row gone from house, I have did not do anything yesterday and very little today. Goodness knows there is plenty to do. Just no umph.

I saw a posting made by JIM DAWSON today but do not find here where the link took me.  It really made me worry that he is severely depressed and I wish he would see someone to help.him. Also.made me feel helpless in help him, to tell him it would get better.

Linda Williams

 

 

[Jim Dawson]

Charlene,

I switched to a ResMed Bi-Pap with an oxygen connector as part of the tubing. Oxygen is set at 2 litres for sleeping. It is able to transmit back to the doctor my sleep results daily. What seems different to me is the amount of water it uses. Very little indeed and it may be my imagination, but a finer misting of water breathing through the mask. I will wake up feeling like I have rested for the most part, but it doesn’t take long for the fatigue to set in and then a desire to take a nap; bummer. So many trials happening, but so little results. Too bad, but maybe someday there will be a real breakthrough.  Take care of yourself and don’t overdue.

 

Jim Dawson

[Charlene Marshall]

Hi Jim,

Thanks for writing back and sharing which Bi-Pap mask you switched to, finding it beneficial. I am sure this information will be helpful to a number of members, so thank you! I’m really glad you wake up feeling more rested, that is a bonus, but I know how frustrating it can be when the fatigue sets in so soon after waking up. Very cool that the machine can transmit results right back to your doctor!

I desperately hope for a breakthrough as well, I feel like we’re getting close but the research needs to happen as soon as possible for those of us struggling. Hang in there, and feel free to write anytime!
Charlene.

[Charlene Marshall]

Hi Linda,

Thanks for writing and sharing an update. Wow, kudos to you for explaining exactly how you felt to the pulmonologist, and having a second physician’s information copied on the HRCT results. This probably made him realize that he is doing something you don’t like, giving you the opportunity to explain. Really glad he suggested pulmonary rehab, and seems to be more invested in your care/needs, not just pushing Ofev. I think your frank discussion surprised him too, but what a gift you’ve potentially given to his other patients: helping him be aware of bedside manner and how he treats others. Good for you!

Glad your PFTs and HRCT remain stable, and hope the pulmonary rehab program goes well. Keep me posted on how you manage with that. Hope you can rest up this weekend, I know how important it is to feel accomplished as home owner. I am having a friend up this weekend (we’re celebrating her upcoming wedding) and she’s allergic to dog and cat fur. I spent the week doing different chores each night to help eliminate her potential allergies: vacuuming one day, laundry the next day etc.

Hang in there,
Charlene.

 

 

 

[Linda Williams]

Charlene
Yes, I hope that our discussion not only benefited me but his other patients as well.  Seems a lot of Drs refer to him in our area.  Even the cardiologist I saw does. I know the pulmonologist does the six minute distance walk in his office as I saw a lady doing one. I did forget to ask him about that but wonder if they might do at respiratory rehab?  Maybe he just waits until closer to having need for oxygen?  I am still 90-96% when use oximeter.  He did tell me next year not do HRCT due to radiation but will do another PFT.   I  hope you enjoy your visit with your friend!   Seems my house is always cleaner when I know someone is coming. My incentive to do some cleaning each day, a little at a time!
Linda Williams

[Charlene Marshall]

Hi Linda,

Thanks for writing – my weekend with my friend was lovely, and we have another busy one coming up as we celebrating her marriage and do the bachelorette this weekend. Hopefully I can keep up!

It is very possible that the pulmonary rehabilitation team will conduct a 6 minute walk test as opposed to the physicians office. There are maybe certain criteria that you need to meet first (ie. a saturation number lower than your current ones) too? Not sure, but keep us posted on how your first rehab appointment goes. I really found it beneficial!

Take care,
Charlene.