36 Ways People Describe Brain Fog and The Tips They Use to Manage It

Happy New Year. And welcome to my first post of 2020 AND the first post of my second year of writing on Fighting With Fibro. I am SO grateful you are here and reading. I want to thank you not only for coming here and sharing my work with me, but I also want to thank SO many people within this community that have shared their stories, experiences and suggestions. It has been such a healing journey for me to not feel so alone in this chronic illness existence.

With that in mind, it sort of leads me into this post. I was sitting there the other day on the couch, yup, again. I was so “drunk” and cognitively impaired, I couldn’t do anything. While I have suffered for years with brain fog from Fibro, Chronic Fatigue Syndrome and chronic headaches & migraines, this new found “drunkenness” and impairment with perception and spacial awareness is new. And pretty sucky. Combine all that with my new bouts of blurry vision and life has been a pretty big nothing burger lately. As I go down yet another rabbit holes of specialists, it dawned on me that the very people I often rely upon the most for help were just a keystroke away. YOU!!!

I just highlighted some of the symptoms I suffer from, due to brain fog, but what I really thought would be cool and helpful was to ask other people how Brain/Fibro Fog affects them and if they had any tips for how they manage it. True to our awesome community, I got a bunch of tips and answers. I even heard from people that suffer with conditions I didn’t realize brain fog affected, like: Depression, Mast Cell Activation Syndrome, Arthritis, Ehler’s Danlos Syndrome and Bi-Polar Disorder.

I asked my Readers: do you get “brain”fog, if so, can you describe it? Here are 36!!!! great responses I got from people:

  1. I lose the ability to recall things or form coherent thoughts and I can’t find the proper words when I try to communicate. It feels like I have Dementia.
  2. I can’t string a coherent thought, words jump around-so what I say or write doesn’t match what I’m trying to share.
  3. I can’t recall what I was doing if someone asks me.
  4. I can’t count money or make change.
  5. It feels as if I’m sleep walking.
  6. My decisions are random and indecipherable. Crossing the road for instance; I see a car, but still decide to cross.
  7. I am accident prone.
  8. Words disappear from my vocabulary, along with friends’ names.
  9. I feel so isolated.
  10. The more I panic, the worse it gets.
  11. Decisions no matter how simple, feel like a huge hurdle.
  12. My head feels like cotton wool.
  13. It’s scary and exhausting.
  14. I struggle to focus or concentrate on what someone is saying or what I’m reading.
  15. Simple things become overwhelming.
  16. I become forgetful.
  17. I say I have a migraine to people to explain my fogginess, because people look at me like there’s something wrong with me.
  18. I’ll be in a conversation and can’t think of the word I want to use, but have the meaning in my head.
  19. My brain feels like it’s wading through quicksand or floating up in space.
  20. Driving is scary and overwhelming. I’m afraid to drive because of my fuzzy perception; turns, backing out, pulling in scare me. I’m afraid I’m incorrectly judging a turn or not staying in my lane. I’m afraid of my reflexes being slow, say if a dog runs out in the road.
  21. My mind is like trudging through mud & trying to catch something just out of reach.
  22. It’s like putting bread in the toaster to make toast, staring at the toaster for a couple of minutes in a haze, forgetting it’s in there and then getting scared when the toast pops up.
  23. It makes me crazy.
  24. I get decision fatigue.
  25. Sometimes I stop being able to move or function.
  26. It limits what I can do in a day and I’m aware of the limitations in my ability.
  27. It’s like a cloud comes over me and I can’t think straight.
  28. It’s like being in an enclosed glass structure, like a phone booth. The words I want to say are just outside of my glass structure. I can see them, but can’t get them to form. I just can’t say the words I can see.
  29. I can be food shopping. We get to the toilet paper section, I know what brand I use, but I blank out.
  30. My brain feels like mush; words, names and details escape me.
  31. I lose important things, like paychecks.
  32. I forget what I’m supposed to be doing.
  33. I feel detached.
  34. I experience it more in the winter.
  35. I change my mind alot over everything.
  36. I get dizzy.

I also asked people if they could give any pointers for how they manage it or better control it and here’s what I got:

  1. I control it with Mast Cell stabilizers (for those with MCAS)
  2. Takin Aspirin
  3. Stopping gluten
  4. Eliminating cowsmilk
  5. Taking DPPIV for a little bit
  6. B12 injections
  7. Taking Quercetin
  8. Avoiding triggers
  9. Using potassium
  10. Exercise
  11. Avoiding sugar
  12. Controlling my stress levels
  13. Controlling my pain
  14. I slow down, breath and focus
  15. I improvise
  16. Taking Vitamin D (2&3)
  17. Writing notes and lists
  18. Pacing
  19. I use distractions to slow my brain and refocus it again
  20. When I stop talking in the middle of a sentence, my family will repeat what I’ve said to help my brain refocus and I can remember what I was saying.
  21. When I can’t think of a word, my family tries to guess the word I’m thinking.
  22. I review my next day schedule with my Husband every night and write everything down.
  23. I do things when I’m thinking about them.
  24. Sorting my sleep so I get good, deep, brain clearing sleep-including controlling my pain enough to sleep
  25. Restrengthening with high dose Vitamin C
  26. Taking Magnesium Plus
  27. Ditching toxic chemical products
  28. Ditching processed foods
  29. Eat real food with lots of antioxidants and anti-inflammatory nutrients
  30. Eat less for dinner
  31. Removing red meat, dairy and alcohol
  32. I stay calm and wait a little bit
  33. Rest and relax
  34. My family “play charades” to figure out what I’m thinking, trying to say or have forgotten
  35. I set alarms and reminders
  36. I leave off distractions, like TV, radio and podcasts
  37. Devise an organizational system, with multiple copies of what I’ve put where
  38. I try to really think about what I’m doing, as opposed to doing things on auto-pilot
  39. Reducing carbohydrates
  40. Using MCT oil (medium-chain triglycerides)
  41. Drink coffee!

Does all of this sound familiar? I think it’s pretty incredible when you find that what you struggle with is familiar to alot of other people. For me, it makes me feel just a little bit less alone. Moreover, knowing that other people experience what I do, makes it a little easier to speak with the Doctor about stuff I thought sounded outlandish. Often times, suggestions from others can improve some of the things I can’t find relief from.

I want to thank everyone who took the time to tell me about living with fog and offering the tips, tricks and suggestions they have for managing it. As always, you are all awesome.

All my love, Stace

Posted by

Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

13 thoughts on “36 Ways People Describe Brain Fog and The Tips They Use to Manage It

  1. Wow after reading this I realized how much more I did experience but couldn’t put into words to explain to you. Stacey thank you for doing this. It’s truly amazing how much more we go through and as bad as I feel I’m no longer alone in this. You have been a Godsend to us all! Truly. 🙏🏻❤️

    1. Awww. Thank you so much, Sandy!! And thank you for the help! I am so pleased/excited/grateful that so many people shared their stories. It’s the best to not feel so alone and even better to be able to help one another. ❤️

  2. Hello Stacey,
    I’m currently dealing with a lot of brain fog and fatigue and depression. I found out I have breat implant illness! I am due to have them removed this month— I thought it may be worth mentioning Incase you can identify. To combat the symptoms until my surgery I’ve upped all my vitamin supplements and my husband says I’m a different person! :). I hope the very best for you.

    1. Thank you so much for reaching out and mentioning this. While I can not identify with this, I’m grateful you spoke up-it certainly may be pertinent to someone else. Some other readers mentioned taking supplements-I’m glad they’re helping. I’m so sorry this has happened, it must’ve been an incredibly hard route to diagnosis; at least I’ve read it can be. I will be thinking of you and praying that all goes well and you get some relief and improvement. Much love to you-Stace

  3. I hate trying to explain this to my doctor her response is always to stop my pain and anxiety meds. I only take Tramadol when pain is at a 10 or above. And I take .5 mg Xanax at night to help me sleep otherwise I lay in bed and feel like ants are crawling all over me and biting me.

    1. I totally get it. I don’t get great responses about fog either. Well, actually I don’t get any. Yikes to the ants!! While I don’t necessarily describe it the same, I get an electric shock sensation-like sticking your finger in an outlet. It’s one of my worst symptoms and really challenges my sanity. It sounds somewhat like the ant thing. I’m so sorry you have to deal with that 😞
      I’m grateful for Tramadol-without it I would have no quality of life. Thanks so much for commenting-I’ll keep you in my thoughts. Love, Stace

  4. Stacy, thank you for taking on this formidable challenge. When you mentioned the electric shock like feeling, l jumped. I have never heard anyone else speak of this. I experience throbbing electrical pulses in my head. One time it went all the way to my feet.
    As others have expressed it is a relief to find out that I’m not the only one with this symptom.
    Bless you for the effort you make to help others understand their health challenges.
    Sharon

    1. Thank you Sharon. And thank you for commenting. Oh the electricity is absolutely awful. It brings me to the brink of my sanity. While I wouldn’t wish any of this on anyone, it’s so comforting to hear others describe the same thing. While I’m finally past thinking I’m crazy now, the first 7 years of being sick really made me question my sanity. Returning your Blessings ❤️ Stace

  5. Damn, I wish I liked coffee, though it may take a hundred cups a day to make a dent in the brain fog sometimes!
    This is such a fantastic post, very nicely done with collating all of these thoughts on what is obviously something that significantly affects a lot us. It really can feel very isolating and like there’s something wrong with us, especially when others just don’t ‘get it’. It’s good to know we’re not alone. Just yesterday I tried to put a box of cereal in the fridge and it took me a few seconds to figure out what I was doing wrong and why it wouldn’t fit, and I couldn’t even remember why I had it in my hand in the first place.
    Caz xx

    1. LOL. Doing that stuff drives me nuts! At least it wasn’t the milk in the cupboard though! Losing a quart of milk makes it worse 🤪 Thanks so much, Caz! I’m so glad you like the post. I think that’s just it. Sometimes I feel insane going to the Doc and hearing “everything’s normal”….esp when it’s so far off my norm. So to hear other peoples’ experiences and know you aren’t crazy (too) helps (at least me) so much. It’s one of the things I’ve come to love about having a community!! ❤️

  6. i could check off almost very description you provide to describe brain fog, and I have also employed and are employing some of the so called solutions on the advice of my Lyme disease doctor, such as subcutaneous B-12, vitamin D-3. elimination of gluten (causes brain inflammation), among others. I have had Lyme disease for almost 20 years. It was not discovered for 3.6 years after I was bitten. Many believe Lyme disease just disappears after some mild medicinal treatments. Not surprising since there is a large and ongoing misinformation campaign designed to make us believe it is not a chronic condition. (My sister, who has rigorous IV treatments periodically for over 20 years, had a polyp removed about 5 years ago and had it sent to a lab for analysis. It was loaded with the Lyme bacteria!) I am not trying to scare anyone into the idea they might have Lyme disease and possibly co-infections such as babesia or bartonella. Look up the information available for Lyme and co-infections on the ILADS (International Lyme and Associated Disease Society) or the IDSA (Infectious Disease Society of America) websites. OVER 350,000 new cases of Lyme disease are reported every year, and the number continues to increase. Only about 25-30% of people develop the “telltale” bullseye rash that has been observed with an infected tick bite. I think this article has done an excellent job of collecting the various descriptions used to describe the brain fog symptoms caused by neural irritation or inflammation. These descriptions sound all too familiar. Lyme disease has been labelled “The Great Imitator”, because physicians who are not Lyme literate (and there are more that aren’t than are) are quick to label Lyme disease symptoms as MS, Alzheimer’s, chronic fatigue, fibromyalgia, ALS, Parkinson’s, among others. I know of Lyme patients who have been told by doctors who are Lyme illiterate that the problem is that they are hypochondriacs and they needed to seek psychiatric help! I am providing this because the listing of descriptions in this article is so inclusive of the myriad ways in which the disease has been described in terms of the cognitive ramifications of associated inflammation of the brain.

    1. Wow, Steven!! You just provided some really great and thorough information. Thank you so much for sharing!!!
      I’m so sorry about the Lyme.

      We live in Central Massachusetts….
      A few years ago, my Husband got incredibly sick. He had a “sore”, or “cut” on the side of his face that wouldn’t heal and he began to feel very physically ill. He fought a professional UFC fight, at one point and it just wasn’t like him to be so lethargic and achy. This continued for three months…..Five Doctor visits, one Specialist and two ER trips later, I finally demanded they test for Lyme. I had already nicely requested a Lyme screen at each appointment, but because he didn’t have a “bullseye”, they refused to consider Lyme. Bri’s cut on his face spread over his ear and was starting to spread down his face, it was black and the tissue surrounding it was dying. He lost 25 pounds and slept constantly…..but up to this point, no one even discussed Lyme.
      I finally refused to leave the Doctor’s office without the Western Blot test and threatened to sue for Malpractice. They finally tested for it and I was correct; Bri was 4000 points higher than the highest normal range!!!
      It was unbelievable!!! At one point, he was so ill, a friend offered to come carry him to the Doctor for me.

      Brian was very, very fortunate!!! After two rounds of antibiotics, they got it under control. But he developed Hashimoto’s Disease as a result (it killed his Thyroid).
      His Primary Care Doctor is now an Infectious Disease Specialist and she monitors all his care, but thankfully, he is asymptomatic and his Lyme levels are normal.
      Bri is one of the *very* lucky ones. We know of some people who have not been so lucky. Like you…..

      I also have some chronic sufferers of Lyme as Readers.
      I’d like to thank you for your time and contribution. I have no doubt your info will help someone here.

Leave a Reply to cottageandbarn Cancel reply