PF Brain Fog Struggles and Solutions
Lately, I’ve noticed I’m not thinking through things as well as I used to. It is very hard for me to accept since clear thinking was a strength for me. I was diagnosed with pulmonary fibrosis four years ago. Here’s what my brain fog looks like.
Forgetting information
About two years ago, when I was still working as a counselor, I noticed that I occasionally forgot important information when talking with a client. For instance, if I were talking with someone about a topic in the news, such as a flood, I would forget that they had been through that experience five years before. I would remember later as I reflected on our conversation, and feel bad I hadn’t remembered. This didn’t happen very often, but when it did, I always called the person back and apologized for forgetting. I was a counselor for 30 years and was very good at remembering what happened in people’s lives, so experiencing brain fog in this way was very distressing for me.
Difficulty thinking through things thoroughly
About a year ago, I started having trouble thinking through all the factors pertaining to a certain problem or situation. I would think about some things, and completely forget to consider other important dynamics. I’m now able to recognize this tendency and ask my husband about once a week to “help me think through something.” I will lay out what I’m thinking about or planning and ask him if I’ve missed anything. He is very nice to process these situations with me. About half the time, I miss considering an important aspect.
Trouble solving problems
In the last two weeks, I’ve had trouble coming up with solutions to problems when I’m not at my best. Last week, I was at the grocery store with my portable liquid oxygen stroller. I cranked it up to 10 liters per minute and walked slowly, leaning on the cart.
As I walked back out to the car, I became out of breath. My reaction was, “Oh, that’s weird.” But I never checked to see what the problem was. When I sat down in the front seat, I noticed the cannula had pulled off of the stroller, and I wasn’t getting any oxygen. No wonder I was out of breath! It was very upsetting to realize I hadn’t looked down to figure out what the problem was.
Just a few days ago, I woke up and was very cold. I snuggled up in my blankets and couldn’t imagine getting out of bed because the room was so chilly. My husband came in after a while to check on me, and I told him I couldn’t get out of bed because it was too cold. He looked at me and turned on the space heater that was right near my bed. I couldn’t believe I didn’t think of it.
It’s been very discouraging to see brain fog affecting my ability to think clearly.
Ways to cope with brain fog
- Tell your loved ones this is happening so that they understand the changes they see in you. I forget things from time to time, and often tell my husband, “I know you already told me, but could you let me know again?” Ask loved ones to help you think through things.
- Make rules for situations you have trouble with. For instance, I have a rule that if I ever start coughing like crazy, I put on my oxygen mask until the cough goes away. This helps me, but I doubt I will think of it at the time.
- Keep a notebook by your side to write down important things you don’t want to forget. Every week, I make a list of all the things I need or want to do. This really helps me remember things that are important.
- Use your oxygen as much as you need to in order to stay above 90 percent saturation rate. Exercise as much as possible to make sure your brain is getting the oxygen it needs.
- Eat a healthy diet to give your body and brain the nutrition it needs.
- Try a brain training program to keep you as sharp as possible. Here’s a great article about which brain training programs really work. Harvard Medical School has published a very helpful report on how to improve your memory.
Why does this happen?
Good question. It’s complicated. Check back next week when I address this important issue with input from Dr. Noah Greenspan.
I’d love to hear from you
Do you struggle with brain fog? What tips and tricks have helped you manage your tendency to not think as clearly as you used to?
Please leave a comment below or on social media.
***
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.
About the Author
Comments
Katie Broach
I have trouble finding the WORD I am looking for. I've had this difficulty for some time but it is decidedly worse. Since I had a brain bleed this winter w/no loss, I know folks attribute my loss of words to that, but I suspect much of it is this brain fog. At 80, my executive function (frontal lobe) is lacking. Sometimes conversation is a struggle. Usually I can remember what the letter the word BEGINS WITH and little more. I experience the same loss of words during emailing. I am not on oxygen yet. I am distracted by frequent AFib, though. PRAY FOR A CURE especially for the young people challenged with this disease. I've had to give up coffee which I think helped clear the cob webs. God bless and keep on keeping on.
Karen Dowdy
Katie, Having parents who both died of Alzheimers, I've always been scared I would go down the same path. I was only diagnosed with PF early this year and not on O2 or meds at this point. But your description of "loss of words" is a picture of me! Last week I was doing my grocery list and went to write down a word that I knew began with "H" but the only word I could come up with was "hives". Knowing that was NOT right, I kept thinking. I've been asking my husband for help when it happens but decided to do this on my own. I finally wrote down "oregano" bc it "explained what I was looking for" altho not the right item. A week later the word "herbs" came to me out of the blue! What is going on??? This is happening more and more frequently!
Hx: Age 65! I'd had dry cough and "breathlessness" that we kind of ignored for a yr...then began losing wt (40 lbs in a yr). They've scanned and tested almost everything they could on the "cancer search". Thankful no cancer but still no known reason for the wt loss. It's leveled off w none in the last 3 mos, but no gain either. No one knows why. It was on the (various organs) CTs that the PF showed up...not on 1 but 3 over about 9 mos. Sent to Pulm and Hi Res CT showed PF and brochiectasis. Also diagnosed w adult onset asthma. Plan is to scan again in Aug and if any change will be sent to a COE for consult.
I was a RN for 38 yrs--writing grants, Joint Commission and Magnet application documents, care plans, policy manuals, stats, etc was one of my greatest strengths. To think that now I can't even come up w the simplest of words is frightening. Emailing (even writing this) is difficult and taking forever, but not being able to come up with words in a conversation is so embarrassing. At least the two of us now know we are not alone. Keeping you in my thoughts and prayers. Take care!
IF anyone has input on what might be going on, please share!
Kim Fredrickson
Thanks for sharing Katie...what a lot of challenges you are dealing with! Many blessings to you :)
Annette Cea
I was diagnosed 2 yrs. ago & was told 24/7 oxygen.My life has become very difficult I am 79 yrs old. Had to have prednisone at one point after my apt had to be sprayed for fleas since my puppy baby had gone to an outdoor park & brought fleas home. On prednisone for 8 months am off now...but aging is a process adding to my fog brain besides P.F.
.
Kim Fredrickson
Dear Annette, What a lot to deal with. Glad you were able to get off prednisone. So glad it has helped to give up coffee!
Andy from Virginia
The biggest thing I have noticed of late is that my mind wanders when I lay down at night and I can't concentrate on any one thing like I used to. I am finishing up the second year of my diagnosis. I don't know if it is due to the IPF or the drugs, but it is very apparent it is occurring. I seem ok during the daytime however.
Kim Fredrickson
Hi Andy, so glad you haven't noticed much brain fog during the day. Blessings to you...
robert o'brien
I don't know how old you are but at 72 I forget things. JEOPARDY answers that I used to know like my own name escape me (very frustrating). The same with words at times. I have IPF but other than that I am in pretty good shape. Having "passed" all the tests for transplantation, I have been told I am too stable and next month I go back to MGH for follow up and continuing evaluation so as to keep me in the loop, so to speak. Loss of memory, at least to me, is a product of aging and not necessarily due to fibrosis. Every day I get up is a gift. I sense I have had this disease for 4 or 5 years although diagnosed in November of 2015. Esbriet seems to be working for me as well. I use O2 when exerting myself i.e. pulmonary rehab. But I don't believe the O2 helps me breath or contributes to SOB but rather keeps my SpO2 levels at 88+ which may sound odd but I am always acutely aware of where those levels are and that if I let them drop too low I could suffer a heart attack. Sitting here right now without O2, my SpO2 level is 95%/65. I wish you well and continued good luck with your testing. It isn't fun but it is a positive step and anything that keeps us positive is a plus.
Kim Fredrickson
Hi Robert. Thanks for sharing with us. I'm 62, so aging isn't as much a part of my brain fog as it is for some. So glad you are stable now. Thanks for all your kind words. Best wishes to you.
Sheila Blanchard
Hi Kim I was diagnosed with IPF two years ago. I am 79 years old.I have been having brain fog which I contributed to age but now understand could be IPF,I was put on OFEV when diagnosed but had some effects had bad diarrhea which made my magnesium go almost flat and ended up in hospital, so had to come off.I am not on oxygen yet.Thank you for the information
Kim Fredrickson
Thanks for sharing your journey Sheila. There are so many challenges with PF. So sorry you had such a hard time on Ofev. Many blessings to you.
kathleen boyette
I also was on Ofev for about 2 years and the GI diarrhea problems were so constant my doctor took me off the Ofev for a month and then started me on Esbriet. I have had no serious GI problems while on the Esbriet. There are side effects like insomnia, sinus, and headaches, but these are easier to deal with than the diarrhea.
Rose Miller
Hi Katie,
Your challenges with this disease sound very familiar to me. I am going to be 77 next week and was diagnosed in Oct/2015. I had been tell my primary care doctor that I was having a cough and shortness of breath, so I was sent for a stress test . I didn't last on the treadmill for more than 3 minutes, but the tech said he had enough info, which later showed no indication of heart problems. I am overweight, but not grossly, so I was told I needed to pump up my exercise and eat a healthier diet. The cough continued to get worse and more frequent. Finally they sent me for an X-ray of my lungs which showed some fibrosis and scarred which they said could have been from a previous infection. Long story short, they did a CTscan, and sent me to Temple Lung center where I was finally diagnosed. Shortly afterwards, I was put on OFEV, and I remain stable since then, but am on 2 ltrs. of oxygen through the night and only if I need it during the day. I have the same memory losses and minor inabilities to concentrate, and I do forget names, places, etc. I keep my phone handy so I can google words, spellings, etc. Things that were simple are now getting more difficult, so I just hang in and take one day at a time and am grateful that I am still here to enjoy family and friends. Like you, I pray for the young people who have a lifetime ahead of them cut short by this nasty disease. As I say to everyone, never give up hope, research shows strides being made, maybe we won't see the cure, but hopefully the younger ones will. Take one day at a time. :-)
Rose
E. hays
Aahhh, Brain fog! It seemed to come about gradually, until suddenly it was very obvious. I was diagnosed nearly nine years ago with IPF. I read via Internet investigation that I had approximately 3-5 years of life remaining. So I just never thought about the diagnosis anymore and got on with my life. As soon as Esbriet was approved by FDA I began taking it. One of the biggest side effects came within first six months when I completely lost my appetite and had to force myself to eat. After quickly losing 20 pounds (fine with me) Esbriet was backed off to maintenance level and I'm doing much better. However there's no doubt, shown by latest PFT, that things are no longer stable. I suspected this when I noted "brain freeze". I did think this may be partially caused by my age (84), it manifested itself also when reading, I began to note my comprehension was getting worse. Taking rereads of many news articles to get the gist, and now occasionally becoming a bit confused when driving (even with oxygen usage). My latest PFT confirmed oxygen diffusion has dropped 2 points. And that's life ......
Kim Fredrickson
Hello E. Hays,
Thanks for sharing your story. We all have a different path as we try to negotiate our diagnosis. Sorry for the brain fog you are dealing with. Best wishes to you!
Colleen Puniard
Thank you Kim. Another great article. I’ve been wondering if my brain fog is coming from low o2 levels. Not on oxygen yet but normal breathing is about 87% exertion is below 85%. My Dr hasn’t seen this yet. Maybe my oxymeter is faulty. Doing Sleep Lab on Sunday night so that might clarify some things.
I’ve experienced brain fog just as you describe it. Often have to rephrase fb stuff to avoid using words I can’t spell. It was never my forte but this is ridiculous. Spell check is not always friendly!
Kim Fredrickson
Hi Colleen, Thanks so much for your encouragement. So glad the information was helpful. So glad you are getting a sleep study. Your oxygen levels should be above 90% whether sitting or upon exertion. Hope your doctor prescribes oxygen for you. It is a hassle, but you'll feel much better. Best to you...
Jo Ann Whitfield
Collen You should tell your Dr. right away of oxygen below 90% Low o2 can effect your brain and entire body. God Bless all
Anita Gillard
I have IPF and have been on oxygen for almost 2 years. Until I read this article I had no idea that the brain fog has a name and I’ve noticed it more and more. I thought it was chemo brain because I have cancer, as well.
Kim Fredrickson
Hi Anita, so glad that this column was helpful. So sorry you're dealing with PF and chemo. Not Fair! Sending you a big hug!
Michele Russell
Hi my name is Michelle I'm 51 and I'll be 52 June 11th. I was diagnosed with chronic lyme disease in 09 and COPD in 2004 I've had a pulmonary embolism since then and I suffer all kinds of lung issues bronchitis scarring my oxygen SATs drop below 70 sometimes 10 to 15 times during the night and during the day. I have such bad memory issues I don't know if it's classified brain fog or just no memory. If I need to remember something I have notebooks laying everywhere. I wake up in the morning sometimes screaming because I have no clue where I am because the last time I remembered I owned a home. Everything goes into my navigator when I drive because I will be driving and totally forget where I'm going. The bad thing is I forget where I came from. So it's starting to get a little bit more Troublesome for me I mean having your children explain how to get from the Iowa border back to Kansas starts making them concerned. Lyme disease is a horrifying debilitating disease that causes you to just disintegrate and you're mine can't keep up to the point then you realize you're losing your freedom and you have no choice about what to say about it. I live in a low-income senior community that has been mice infested for the last nine months I've been fighting them hands down and breathing the feces and the urine the dander has made my breathing just terrible and my doctor is requesting 24/7 oxygen at this point. Sometimes I can't walk for my chair to the bathroom without not being able to breathe. I'm also dealing with mold contamination and there's not much I can do I live on a below poverty disability check and with all of my medical expenses co-pays and everything what little bills I have cell phone and electricity I usually have about $70 to live on for the month I eat out of food pantries if I didn't live where I am now I would be homeless and that's just not an option. Trying to find a portable oxygen concentrator that fits in my budget is zero to none. My bedside concentrator used to accept what Medicare paid and wrote the remainder off before years ago they started charging me so I have quite a bill for my share of percentage for my bedside concentrator. I've seen some used ones but they're still 5 $600 ever has $500 at this point with health like mine NOT ME! So I'm still looking I just wanted to say you know I don't look for a cure for all my problems anymore. It's easier for me to tell you the problems that I don't have them to list all of my medical issues. I am literally a medical reject I have no immune system so it seems like I'm sick all the time and fighting for my life I just am at this point where I tried to manage the symptoms the best I can.... And I will leave you with a positive note people ask me all the time how do you stay so positive? And my reply is always this... I have a roof over my head I have a few groceries in my pantry the bills that I have to pay, I've paid! My grandbabies Live 5 blocks for me and for that I am a very blessed person. And I'm grateful for God's grace and his Mercy
Kim Fredrickson
Hi Michele,
Thanks so much for sharing. You are an amazing woman, dealing with SO MUCH at once! I am so inspired by your positive attitude. You are valuing what really matters. Thanks for being a source of positivity for all of us. Sending you a big hug.
Frosty
Does anyone have experience in how to keep 02 above 90 at rest with a home concentrator? At I am starting to use 10 lpm on the E tanks but know that a concentrator set at 10 doesn't give out the same as the E tank, and the concentrator does not go above 10. Have been told by the oxygen supplier that using 2 concentrators with a 'Y' connector, and each one set at 6lpm really doesn't give out the same as an E tank on 10 AND that I can't increase each of the concentrators above 6 because they malfunction. So what does one do when wanting to stay at home and on this high flow.
Phil Ritson
Hi I am aged 60 and based in Liverpool, United kingdom. Received abrupt announced diagnosis from my GP in July 2018 Idiopathic Pulmonary Disease and was out on the pavement within 5 minutes of entering the building/GP surgery. I still working 4 days a week but feel that everything is getting a bit stressful even though I do 2 days at home and 2 days in office(which involves a 3 hour round trip commute by car and train). I have asked for at least a third day at home working but have been told that my Head of Section has said this cannot be granted as my role is not classed as a home worker role per say. My employer has therefore offered a floating ad hoc one day per month extra work from home day that I can use if necessary( so if I feel too ill to deal with commute on a Monday in November I can ring the office and use the floating day to work from home, but if I still feel too ill the next day a Tuesday to commute to the office, I have to commute or take a sick day??!!! My daughter thinks I should push for Ill Health Early Retirement(particularly as I also have clinical depression long term(since 1990), osteo arthritis in most joints(since 1989), ischemic genetic heart disease(since 2000) and cirrhosis of the liver(since 2014) but I worried about the related reduced pension options I have seen for such retirement and feel guilty that I might be letting my wife and children and grand children down if I take such a decision? I wondered if anyone else had been through/dealt with such employment/early retirement/possible reduced pension and finances decision/anxieties and if so would they consider relating how they dealt with such things and how their family coped/reacted?????
On a more general IPF note, I am determined to overhaul my whole day to day fitness and nutritional options/choices etc. Whilst I have some fears about possible early death re this IPF diagnosis, I guess I am going to carry on being a caring human being, husband, father, Grandfather for as long as I can, I am currently quite positive and my symptoms are mostly rear back/chest discomfort, coughing, tiredness and constantly clearing my throat or trying to, plus seem to be getting recurring green mucus type cold symptoms and blocked nose etc. I could probably push myself to keep commuting and working but I am beginning to feel after so many years working and with my health conditions, that I just want to relax and retire and try to do some things myself that I might enjoy plus spend more time with all my family. I just worried about the reduced pension options as a result should I choose to push for Ill Health Early Retirement(my normal employer pension retirement age for me is currently 65 and I am now aged 60). On the plus side, my wife Rowena is only aged 48 and currently very healthy and planning to work probably up until she reaches 65 plus will soon be able to finish of our house Mortgage payments.
God Bless You All and Take Care, Best Wishes from Liverpool, England. Love from Phil x.
Kim Fredrickson
Hi Phil.
Thanks so much for your comment and sharing your story. I think all of us have wrestled with the right time to retire / ask for Ill Health Early Retirement. It is a tough decision, especially financially. Most patients I know, including myself feel they stopped work too late. I worked at least 6 months longer than I should have and it contributed to me worsening at a faster rate. I would really pay attention to what you shared, "I just want to relax and retire and try to do some things myself that I might enjoy plus spend more time with all my family." I would encourage you to talk with your wife, and your employer as to the amount you would get with early retirement. Crunch the numbers and see if you can retire soon. The time you have left is precious, and you deserve to enjoy yourself! I hope this helped :)
Carol Handy
I have the same problem. I reach for a very familiar word and it just isn't there. I usually can remember it the next day. I presume it's because our brains are just not getting the good oxygen they need, 02 supplementation notwithstanding. It occurs to me as I write this that maybe if we Stop, and take a few pursed breath inhales it might help at the time we need the word. Maybe?
Kim Fredrickson
Hi Carol,
What a good idea -- I'll try that!!!
Rie
I have Epstein-Barr. With that comes other things - Chronic Fatigue is the biggest thing I experience. I wonder if the brain fog is also part of that. I was in an accident years ago (rear ended) and it began. I used to be sharp as a tack. Recently, I was rear ended again and since that, I have gotten really BAD - Words jumbled, can't follow through - start projects all over the place but walk away and forget them. I can't even make a decent grocery list! Someone here mentioned Jeopardy. I know an answer but it will not come to me. So frustrating!! I am researching right now about this and found this page. It's nice to know I'm not alone, but sad that others are struggling.
Clara Gamberella
I have your stories and my heart goes out to each and everyone of you. I've been on my journey with ipf a four and a half years it's been a big struggle for me one complication after the other. My doctors have told me that there is nothing that they can do for me. I have the brain fog some days worse than others, I live in a lot of pain now and discomfort that the coughing. I also have bronchiectasis and I have 7 nodules in my right lung I lost severe instructions. Supper with afib a hole in my heart and a whole bunch of little goodies to go with that how much I won't go into. These days I'm just living from one day to the next because it's getting harder and harder as mine illness progresses. This illness is not for sissies I have to tell you that we have to be strong and I have fought throughout this whole journey but I can't begin to tell you how many days I want to just give up. I have been on oxygen since I have been diagnosed and I don't find it it has helped me at all. I have been home bound for two years now I don't dare go out I never know when I'll have a coughing fit or get out of breath. Besides I have swallow issues my food and water goes into my lungs. I wish you all the very best
Jean bakker
I am 82. I have had IPF for about a year. I was finally able to get a diagnosis of severe ipf in August 2022. Brain fog is becoming a problem for me. I have trouble finding words in a conversation and sometimes use the wrong word. If I watch a tv show the next day I can’t remember much about it later. I have to check that the water is turned off in the bathroom twice. Once I left the stove on. Luckily my son was here and found it. I have had to train myself to check everything twice and rely on family members to do my shopping. So far I am still driving a car but I worry that one day I may forget some of the rules on the road and either cause an accident or be in one. I am on pirfenidone and have recently reduced the dose due to side effects.
Patti Johnson
Hi Kim, Thanks for that good information. I would like to know how to access this webinar that you mentioned above. ""Check back next week when I address this important issue with input from Dr. Noah Greenspan.""
Also arthritis.org has an interesting webinar on fatigue and brain fog. I have arthritis and brain fog so a double whammy, i guess.