Why Do PF Patients Have Trouble Thinking Clearly?
Last week, I wrote about my brain-fog struggles. It’s common to wonder, “Why am I having so much trouble thinking clearly? Is it from pulmonary fibrosis?”
I was able to run this question by Noah Greenspan, a doctor of physical therapy who specializes in cardiovascular and pulmonary diseases. He said that many factors may contribute to a patient having trouble thinking clearly, and although it can be tempting to attribute all of our struggles to pulmonary fibrosis, the disease is not always the culprit. Following are possible explanations for why many of us have trouble thinking clearly. This isn’t meant to get you worried about something else, but to see how complicated the answer to this question is.
Possible thinking complications
Chronic hypoxia: Hypoxia is a fancy way of saying you aren’t getting enough oxygen to your brain and other organs. It is possible that chronically having less than 90 percent oxygen saturation could cause changes in your brain, which could cause you to think less clearly.
Decreased blood flow: This can be related to atherosclerosis (plaque in the arteries), particularly in the carotid arteries that supply blood to the brain. Or, it could be related to changes in the vessels of the brain itself. This is more common as we age and can cause subtle changes in your thinking and in your brain’s abilities.
Emotional stress: We may not realize the long-term emotional effects that dealing with a chronic illness can have on us. We are constantly forced to wrestle with our mortality and the grief that it entails. We also experience stress because of life change, the effect that our illness has on others, and the everyday stress of making sure you can breathe — not to mention the frequent clinic visits, medical exams, and procedures.
This takes its toll on us over time. It is common to experience anxiety, depression, and difficulty thinking clearly when dealing with so much physical and emotional stress.
Something else: Our bodies are incredibly amazing and incredibly complicated. There could be many other reasons.
Tips to help
There are lots of ways to care for your body and manage your stress.
Oxygen levels: It is important to keep your oxygen saturation at a safe level. Dr. Noah tells his patients to keep their oxygen saturation above 93 percent. Most oximeters that we use have an error rate of plus or minus 3 percent. This means if your oximeter shows your saturation is 93 percent, it could actually be between 90 to 96 percent, which is perfectly safe. Research has shown that oxygen levels between 90 and 100 percent are safe for patients. When oxygen saturation falls below 90 percent, damage can occur to the brain and body.
Blood pressure management: If your blood pressure is too high, your heart is working too hard to pump blood to the rest of your body. Taking care of the cardiovascular system is especially important to pulmonary fibrosis patients because our disease puts extra pressure on our hearts. Ask your primary care doctor or cardiologist for help to manage your blood pressure.
Practice relaxation techniques: Our bodies need a way to relax from the constant stress we are under. Stress relaxation techniques, as well as tai chi and qi gong, are very helpful. Here’s a program I use to help me de-stress. I don’t get any compensation for telling you about it. Dr. Noah also has some great ideas in his book, “Ultimate Pulmonary Wellness,” and on his website.
Establish routines to help yourself: A lot of routines can help with thought organization.
- Write down lists of things you need to remember and accomplish. I LOVE crossing items off my list!
- Organize your home and your environment to find and remember things more easily. I keep a stack of bills on the table next to my easy chair so I don’t forget to pay them.
- Create morning routines for yourself. I start my day thanking God for another day, take my morning medication, drink a protein shake, and do some simple exercises. I also have traditions for later in the day. Take a moment to write down the daily activities that will help you with your health and bring you joy.
My thanks to Dr. Noah Greenspan for his help with this topic.
I’d love to hear from you
Do you have trouble thinking clearly? What do you think might be contributing to your brain fog? Does it make sense that stress might be playing a part in your thinking clarity?
Please leave a comment 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
Wendy Ford
Yes I mentioned this to my respiratory nurse a few years ago.
I have IPF and am entering my 7th year.
I’m on 15 litres when mobile but my sats still drop rapidly! Have at worst dropped into the 50s .
Once it’s about 75 I wait it out till it’s recovered before moving on.
I’ve noticed my short term memory is appalling.
I can’t remember simple words even the name of my pets etc.
Kim Fredrickson
Hi Wendy, You are such a warrior, keeping going even though on 15 lpm! I know it is hard. Appreciate you sharing with us. Many blessings...
Carol Malone
I have Lupus with a host of problems associated with he use of steroids. Two years ago I was diagnosed with IPF but not told a thing about it. I am 67 years old and not in oxygen yet but I have seen that so tire more and have a lot of leg and ankle swelling now. It is frustrating because when I bring it up to my pulmonologist he says that I am doing ok for now. He has put me on Myfortic to help me. I get scared. My daughter doesn’t want to discuss it because that way she can pretend it isn’t happening. Thank you for being such honest.
Dulecia Lunde
Hi Kim
I'm so glad you touched on this subject of poor memory was beginning to feel I was losing my mind. My son and husband also cause me to full on arguments as I am adamant I put things or done something then I have apologise when it's discovered it's not so. Sometimes I'm right but most of time I do slip up and forget to do things or where I put an item. Causes many sleeplessness and stress as its usually important stuff or papers!
Kim Fredrickson
Dulecia, I'm so glad this information was helpful, but so sorry this is happening to you too. Maybe you could print out this column to show them. It might help them understand that your memory changes are due to PF. This might help them (and you) be more compassionate with yourself. Many blessings
mary landry
Please get on oxygen. I was diagnosed with ipf 6 months ago. My doctor had me start using oxygen, as needed.n it has really helped.
Kim Fredrickson
Dear Carol,
Thanks so much for sharing. So sorry both your doctor and daughter aren't facing what you are dealing with. It sounds like such a burden to handle the reality of disease without the support you need. I would consider getting a second opinion from another pulmonologist. So glad you shared with us. We understand what you are dealing with. Sending you a big hug.
Terry Moriarty
Hi Carol,
I was diagnosed 11 years ago with hypersensitivity pneumonitis which is a different class of fibrosis that seems to be treated differently than IPF, as far as drugs. That said, I didn't need oxygen for 4 years after diagnosis. At that time, I ended up in the hospital and they couldn't get my oxygen levels up, so ended up on oxygen.
My impression of pulmonologists is all they do is monitor you by ordering tests: blood work, pulmonary function tests, CT scans, etc. Have you been getting these kinds of tests?
One of the tests they do to see if you need oxygen and how much oxygen is needed is a 6 minute walk. If the blood oxygen falls below 88, you need it. Has your doctor ordered a 6 minute walk for you?
Betty Lintern
Hello all, I was diagnosed with IPF April 2016 - have tried unsuccessfully to find someone here from lung institutes to universities to get help - because this disease is so rare no research seems to be happening- my GP knows "basically nothing" about it - I am about to see my specialist to get some oxygen - I have a constant cough that won't leave me - also brain fog and no energy - I have found several things on the internet that could extend my life but can't get them - so frustrating - I am 75 yo - my specialist is "keeping me under surveillance " best wishe to all from "down under"
Terry Moriarty
Betty, what tests have you had? To qualify for oxygen in the US, you have to do a 6 minute walk. If your blood oxygen level falls below 88, then you qualify. Where are you located in Australia? I was diagnosed when I was working in Australia 11 years ago. My doctor was wonderful. He is near Canberra. The constant cough, fluid in my lungs showed up on an xray and low blood oxygen level is why he put me in the hospital which ultimately led to a lung biopsy. Best of luck to you.
Ted Fecteau
Betty Lintern, I hear you. I get the same here in New Zealand - my GP says she knows next to nothing about my NSIP. Even my Rspiratory Specialist admits to knowing little about my condition even though he and his team diagnosed it using all the tests noted by the Cleveland Clinic on their website. I find no Pulmonologists in NZ. It is very frustrating to not have access to any medical professional to even talk to. Thank goodness for the online sites to be able to find others with similar problems.
Helen Geerhold
I was diagnosed in 2011, am fighting for my life. do have trouble remembering things, oxygen levels struggle to stay in the low 90's. but I am hanging in.
Sheila Blanchard
I have lived with IPF for over two years and find the Brain Fog seems to be getting worse. Can’t remember things I’ve said and done,sometimes some people’s names dates of things that happened. I am not yet on oxygen,I have an appointment with my pulmonary Dr. In two weeks and will find out what is happening. My oxygen levels fluctuate from 84 to 92. I have constant stress, because of having this disease, and missing my furry friend my cat, I had to rehome her when I moved in with my daughter and her husband and my teenage grandson.although I am very grateful to them I am by myself every day except weekends sorry if I am a bit emotional, this forum is somewhere I can vent no one else can understand thank you friends
Irene Hekking
Dear kim frederickson.
Living in Amsterdam and i have my own support group thanks God.
Yesterday i had to go to my pulmonogistfor an spiro and walk test.
The results where not great. I went back with 13%.
The walk test was ok. My oxigen level at 97.
So i asked him. When is it required to use oxigen.
The opinion in my group is when your oxigen level is below 85.
My doktor told me that oxigen is not helping when you have IPF...!
The lungs are full of scars and the oxigen is not reaching the point.
He say.s oxigen is a psycological help . Not a real help..
Now as you understand i get confused. My docter is one of the best in the hospital and very known!
Can you explain me what is the real about oxigen ?
Thank you so much Kim.,
Kim Fredrickson
Hi Irene,
Great questions. All I've read, and my doctors say we should not go below 90% saturation level. The need is physical, not psychological. There are hundreds of sources and studies that agree with these numbers. Going below 90% saturation rate can cause organ and brain damage, since these organs are not getting enough oxygen.
Jim
There are 2 things that have affected my short term memory. First is a closed head injury. Second is my PF. If it wasn’t for my neck, I’d be looking for my head. I do not have any short term memory. I spend a lot of my day looking for things. As the PF progresses, it is starting to affect even the long term. I was electrocuteand dead on the floor, but I was recessated and again today I woke up. So everyday is my birthday. No one wants to leave their loved ones, but the other side is unbelievable beyond words. Don’t fear death, it’s not the end of you. It’s only a transformation from one life to the next. The next one is much better. I’ve seen it. God bless
Kim Fredrickson
Hi Jim, So sorry for al you're dealing with. Thanks so much for your encouragement about what lies beyond. This is such a comfort.
dianne frazier
I too have short term memory loss. I was sleeping a lot during the day and then again at nite with no problem. I could sleeep 3 hrs a day or more. Exhausted all the time. My GP has ordered Provigil. Anyone else usung it for short ter i have only been on it couple days, feel a little better.
please tell me youropinions on this drug>
DONALD BROWN
Hello Kim and everyone else,
My father passed away a few years back from PF. His diagnosis of PF coincided with Lewy Body Disease diagnosis. He went through the same protocol and results all previous posters have mentioned here. One of his Drs. told my brother that this disease is not hereditary so we should be safe. I have my doubts and that's why I came to this site. While visiting here, I now have more concerns because of my same issues with long and short term memory issues, I'm only 56. There was a moment years ago that my Dr, determined my oxygen level unexpectedly dropped quickly to 89. The Dr at the time had no explanation and nothing further happened. I most recently have seen a Naturalpathic Dr. due to coughing concerns that she diagnose as gurt, then acid-reflux and then finally SIFO (Small Intestinal Fungus Overgrowth. My brain fog is my biggest concern, so bad that I feel I can't be productive in anyway. I feel the source physically seems to be in diaphragm area. I'm glad that I discovered this forum, so I can hear back if genetics is a concern or not. The doctors only could contribute my fathers cause was due to his smoking early in his life. Should my next move to settle my concerns to see a new pulmonologist, I'm in NYC? Those who are suffering I value your opinion.
Kim Fredrickson
Hi Donald.
Thanks so much for sharing. Yes get a referral to a pulmonologist who specializes in pulmonary fibrosis. There is a form of it that is hereditary. Call today. The sooner you can get your questions answered the better.
Bonnie Sue
Hello Kim,
My brother has IPF he is on Phentermine four times daily and uses a CPAP machine when napping and sleeping. Have you ever heard of using a CPAP instead of an oxygen tank. Phentermine helps how? He lives out of state so I have little ability to be of help to him. Please help me understand if he is getting good care. Brain fog, concentration, fatigue are big issues.
Bonnie Sue Chasnoff
Kim I have not heard back from you since I requested your help. Really need some advice.
Charlene Marshall
Hi Bonnie Sue,
I'm really sorry to inform you that our beautiful Kim has since passed away from this disease, while waiting for her lung transplant. Sending hugs to you.
Charlene.