Extreme Fatigue

[Susan Howitt]

Sorry Wendy, I just sleep through them too. I have found that if I eat something, usually a half cup of a substantial soup, I sleep deeper and better and seem to get through the episode faster.  Sorry can’t be of more help

 

stay safe   Sue

[Allan Byron]

I just take green tea and it Worldcraft2 me

Allan Byron

[Steve Dragoo]

@abyron888

Hey Allan,

How are you? Did WEI ever help?

Steve

[Deborah]

I am fatigued alot also and wait for the Lord to give me strength! Then i use it all up, because i never know when i will get more..then im zapped of energy for 2 days..

My way of dealing is if i can get at least 1 thing accomplished each day then im good! That one thing may not seem huge to someone else but i look at it as im making progress like the tortoise and the hare..

Im learning its ok to go slow, and not feel like im being lazy..because i know when im given strength i use it!! And when i get stuff accomplished its encouragement for those days i dont get as much done and keep that: do at least 1 thing today!!

[Kathleen Ryan]

I’m tired all the time, and sleep about 12 hours a night!  I’ve learned to plan to do one thing a day, and that seems to keep me stable.  One day I’ll cook, another do laundry, and so on. More than that is too much for one day!

[Joan ciccarelli]

Hi
I have had ipf for a long time i am getting
Problems with what i call attacks of real bad
Out of breath doing almost nothing the only thing I can say is get into bed or find what you call your safe place and try very hard to relax i know how hard itbis i am even on oxygen i feel i have a very good lung doctor but with this virus hevonly talks to me on the phone hope you have a good doctor
Keep safe

[Fred Schick]

I am almost 5 years post diagnosis and learned several things in Pulmonary Rehab early on.  First, the stomach gets first demand on oxygen, so eating can effect your oxygen level. I don’t snack between meals and attempt never to eat after 7PM.  I sleep soundly for 8.5 to 9.5 hours nightly.  I also take a daily nap in the early afternoon lasting about 3o to 45 minutes.  While this doesn’t eliminate fatigue, it controls it and allows me to enjoy my waking hours.  I exercise twice daily, by walking my dog, for a total of 30 to 40 minutes.

Lastly, I attempt to limit activities to one per day.  This would mean a trip to the grocery store is one activity.  I do the cooking in our house because I like to cook; some would consider this to be a second activity.  I have found fatigue to be very annoying but not as bad as the cough.  Hope this helps you.

[Ron]

This comment won’t apply to everyone, but the first thing I do when I encounter unusual fatigue is to check my pulse-oximeter for signs of afib.

Afib, or atrial fibrillation is an erratic heartbeat which can result a blood clots. These clots can lodge in the lungs or cause strokes.

My pulse-ox meter displays my heart pattern similar to an EKG/ECG chart. All of them show your pulse rate.

I first suffered afib following hospitalization for pneumonia/sepsis about 3 years ago. I began paying more attention to these features of my pulse-oximeter after that. I can quickly check if my fatigue is likely due to afib or rapid heart beat problems.

An erratic pattern on the chart or erratic or very high pulse rate readings should be checked out by a medical professional.

In my case, I was prescribed drugs to prevent a recurrence of afib and a blood thinner to discourage clots.

Then just about a month ago I felt some subtle symptoms of a heart attack (fatigue, shortness of breath, tightness in my throat). A check of the pulse-oximeter showed I had an erratic heartbeat.

Of course, as soon as I walked through the doors of the ER my heart slipped back in sinus rhythm. This is not unusual. Many people have short sessions with afib. I was admitted to the hospital for observation and released the next day.

Afib has not recurred and I was advised it is likely unnecessary to go to the ER again unless the afib persists for an hour or more or if there are symptoms of a heart attack. In any event, I was told to followup with my PCP or cardiologist as my drug dosage may need to be adjusted.

For chronic cases of afib there are drugs, surgical procedures and pace makers available to address the problem.

Since almost everyone with IPF has a pulse oximeter, you should know it can be used to help narrow down the cause of your fatigue.

[Christie Patient]

Thank you for the good explanation and for sharing your experience, Ron. This information will be helpful for others who suffer with this common comorbidity to IPF. My mom suffered from aFIB on and off for about ten years before her IPF diagnosis. Given what I know now about the high rate of aFIB with IPF, it should have been a clue to her doctors to look deeper into her pulmonary health. She probably could have been diagnosed much sooner, but c’est la vie. She still suffers from it pretty regularly, but not constantly, after her double lung transplant. This, too, is common.

Doctors can diagnose aFIB with an EKG, a continuous heart monitor worn externally (a small device that sticks on the chest), or with an implanted loop recorder for long-term surveillance. As far as treatments go, as you mentioned, the first line of defense is medication–either antiarrhythmic, anticoagulants, or beta-blockers. There are also some minimally invasive procedures, like electrotherapy to reset the rhythm or cardiac ablation for more serious/chronic cases.

Treating aFIB is definitely a path to a life with less fatigue. As a caregiver, I can notice a difference in my mom’s activity and general well-being whether she is in or out of aFIB.

[Steve Dragoo]

@wendy-dirks

Hi Wendy,

I know you wrote this a year ago but fatigue does come and go. I would say the most important thing you can do is anything and everything to avoid getting sick/er as the immune system is compromised.

There are a good number of supplements that will help. D3 is much more than just a vitamin but do take it with K2. The good B-complex is quite beneficial. We have hot juice every morning empty stomach of Calamansi (strong lemon in the Philippines – delightful) with honey, turmeric, ginger. Drink green teas because it has EGCG which you can take as a supplement (I do and it helps).

There are several others but these will help. Of course, rest water, exercise, sunlight, faith add to the mix.

Stay well,
Steve

[Earl Robinson]

I find that fatigue is what most of this disease is.  I’m used to going-at-it and getting it done. But guess what, those days are over.  My wife used to call me the Ever-Ready Rabbit.  I seldom ran out of pep.  Now…..I…. have….. to…. go…..slow.  Yes, pacing yourself for the day is all I know now.  We are all different and I’ve been told IPF affects each of us differently.  I have to remember to “breathe in through your nose, out through pursed lips…. slowly”. I’m on 10L of O2 during the day and 6L at night.  I’m into this game about 2 years now. OFEV 100mg 2X/day and Tyvaso (inhaler) 21 breaths 4X/day for PAH.  My condition seems to be stabilized.  I hate to be a burden on my wife but I really don’t have a choice. All the best to you.