Brain fog

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Cindy Wood

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I feel your pain, I have fibro fog so bad I'll be talking mid sentence i cant remember what I wanted to say, or my husband will tell me something and its like I didn't hear it at all because its gone, I can't remember at all what he said and this is just minuets later o_O😬😲😴
 

NY Farmwife

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Cindy, you now have a new challenge. You are going to go through a ton of post-its. Have your pile of post-its and a pen with you at all times. In the interests of marital harmony, write down what hubby says immediately. Put the post-it near the phone if he wants you to call someone, on your purse, if he wants you to go somewhere, etc. Before you make any phone calls, visit the doctor, or do anything else important (or trivial) make a list of what you are going to do or say. Carry a big purse with each memo in the order it will be used. X off anything that has been done already, and stick it to the bottom of the pile. Another, but bulkier method is to carry a steno pad everywhere. (You'll need to always wear clothing with big pockets and carry a purse with an outside, accessible pocket. I have a bulky cardigan sweater I wear around the house in cooler weather that works well.) A steno pad works even better because your pen can clip onto it and always be handy, and you can write questions or tasks on the left side and your actions on the right side.

I think brain fog effects your life more than pain. It limits your ability to be you. Luckily, like pain, it tends to come and go. And, like pain, there are things you can do to make it less of a burden. It takes effort. It takes learning to always write it down. Most of us know how important our grocery lists are. "Everything" lists just extend things. It's cumbersome at first, but can become a habit--and save your ability to function.

Fibromyalgia is a series of challenges. How well we survive is a matter of meeting each challenge as it comes.
 

Jemima

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I think brain fog effects your life more than pain. It limits your ability to be you. Luckily, like pain, it tends to come and go. And, like pain, there are things you can do to make it less of a burden. It takes effort. It takes learning to always write it down. Most of us know how important our grocery lists are. "Everything" lists just extend things.
Post-its fairy over here! ✋🧚‍♀️ Great advice, NY Farmwife.
 

Cindy Wood

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I have decided to get a calendar planner to write everything down I did it before and it really helped.
 

sunkacola

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I always use a calendar planner. Had to, when I was working because I was self employed and went to a different place every day. Now I am not working but still use it to keep track of what I am supposed to do. I'd be sort of lost without it!
Post-it notes, too. I use those a lot, although to be a bit more environmentally friendly I cut up used envelopes and use the blank spaces on those for my notes before recycling the paper. :)
 

DebMarPir

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Feeling a little unhappy with myself because I have been so fuzzy the last couple days! It's almost like I am wrapped in gauze and I am trying to think through it and somehow can't gain clarity. I search for words and simply can't find them (or sometimes they occur later). Drives me crazy, as I feel I must come across as less mentally acute now. I used to be "smart" and it hurts me a little that I struggle with this. As a journalist I can write at home and look up synonyms. But in conversation, I can't find a way to ask Siri or Alexa to find the missing word. If anyone find that their clarity comes and goes, it would make me feel better. I am afraid sometimes I am on a downhill slope and I won't get any of this mental focus back. :(
 

Momzilla

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Hi I'm new. I lose words and thoughts mid sentence all the time. The worst for me is when I'm really bad, I have a constant unsettling feeling that I was doing something and I'm always trying to figure out what I was doing. Its like i black out and then when I come to I don't know whats going on. I take vyvanse and went through an awful period where I could never remember if I took my pill. I would start announcing it if someone was in the room. Def. Nerve raking the thought of accidentally taking 120 mg of vyvance. One time I spent 15 minutes looking for a pill because I thought I laid it down and was terrified my toddler or dog would get it. Pill counting doesn't help as sometimes I don't take it. People suggested a pill counter but I still have the same problems. If the Wednesday pill is gone did I take it? Or lay it down somewhere etc
 

Auriel

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Hi momzilla welcome to the forum, I completely get the pill counting thing and the memory issues, I have a two week pill counter(makes no difference) I still question especially if I’ve rested or my sleeps been broken but boy you’ve been through the wars haven’t you?! I get sore scalp too, it hurts to brush my hair(I actually have a few sores on my head at the moment that I’m not finding funny, and Cos I’ve no idea why? ? ? ) also lower back pain and everything else that comes with fibro and cfs, anyway as I’m going to bed now I’m 100% sure you’ll get responses to your posts later I know of at least 3 members who would love to get stuck into them 😁 till then take care 💞🤗⭐
 
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Momzilla

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Thank you Auriel , for taking the time to reply.
maybe folliculites? I have that.. i get it on my chest,neck,, now scalp since I've been loosing my hair. Not the hot tub kind which i believe is fungal. I've had really long hair all my life. I even had dread locks when I was a teen that I brushed out rather than shaved. Took a few days. Lol
Never had a problem getting my hair dyed/worked on. Which involves a lot of tugging because its so long it gets all tangled in the sink when they wash the dye out.. Last time I got my hair done a few months ago I was in so much pain I left with an awful headache. My face was red because of how bad it hurt.
I've gotten tattoos since I was a teen. For the most part they've relaxed me. I normally take a book to read or chat with my tattoo artist. Ive been so busy with kids,dogs,life I haven't gotten any tattoo work since I've had fibromyalgia. I wonder if I could even do it now?
I have lost myself completely. Haven't ridden my motorcycle, haven't played paint ball. Im an artist and I still do art but my hands get all cramped and gnarly.
Thanks for listening/ reading. I bet you all get tired of listening to the new bees lol jk.
I am so grateful for everything in my life. My life is the way id want it. My kids, my dogs, my house,and my career. But whatever is wrong with me dictates so much. Its literally changed who I am. I often find myself thinking "if they only new me before"
 

JayCS

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If anyone find that their clarity comes and goes, it would make me feel better.
A lot do, brain/fibro fog comes in its own flares or along with the physical ones! (I list it as an 11th form of fatigue.) In my case despite my 'alertness'-supps I seem to be writing stranger and stranger words, but at least I still see them while re-reading or after sending off, so I can still edit.
If the Wednesday pill is gone did I take it?
Oh yes, so many times! It's got better now I don't just have 10 pills (5 blood meds, and supps) 4x/d, but 15 (going up to 20 soon, just supps now) at >10 various times day and night, because I have to structure it more and write every time & amount into my blog immediately.
I have a two week pill counter(makes no difference)
Considering those 10x8=80/d, I got very frustrated with my 7dx4/d pill box a few weeks ago now the supps have increased plus the balancing out made me fuzzy as heck. I also had no idea how to arrange all the bottles so they didn't swamp me. A godsend that my wife then saw a cute new carrier bag with 8 well-sized compartments in a 'please help yourself' box in front of our neighbour's house. Now I've put all the bottles in there, using some empty thinner ones, put labels or writing in marker pen on the lids, incl. the main reasons I take them, I've always needed quick overviews & everything together. I've given up putting the pills together for the week, like I used to, seeing as I have to adapt the doses every day according to the results. Now I'll be able to cope with 20x10=>200 pills per day. To go, I'm now using one of the daily compartment parts I can take out of the week-frame to put the most important "daytime" supps in, esp. the ones for the Ache, energy/fatigue, post exertional malaise (serrapeptase didn't fulfil its promising start for that, but NADH is working wonders reliably and inside of 10-20'). Luckily NADH is green, the new product brown. But most are white, either ready-made (all similar) or self-made capsules from white powder (in differing amounts, even for one substance, only slightly different).... So I have to make sure I know what's in which compartment. On the move I have to make a note in my non-wifi phone and look it up when I complete the blog entry.
I always use a calendar planner. Had to, when I was working ... Now I am not working but still use it to keep track of what I am supposed to do. ...
Post-it notes, too. ... cut up used envelopes ... before recycling the paper.
Ah, that's very similar to me. A pda (personal digital assistant)/palm/organizer was my best friend when I was working full time. Now I put many reminders in my laptop, as its attempts to remind me work best, as well as fairly discreet alarms in my phone, which I tend to ignore too much.
Post-its irritate & confuse me tho, make my brain fuzzy, so they're only an add on. (OK: I'll leave that 'they're' instead of 'their', as a praps not so strange example - just I didn't used to do this. WHAT? Not their, there. Oh, I'm tired, can't sleep. On third thoughts: they're is write, no right after all. :oops::rolleyes::sleep::unsure:o_O 🙀 :LOL: Let's see if I stick to that if I review it in the morning.
I have lost myself completely. Haven't ridden my motorcycle, haven't played paint ball.
Part 1: Losing ourselves. Part 2: Mourning. Part 3: Finding our new selves. Part 4: Enjoying self-caring more. Part 5: Recovering some of the old self by self-caring and pacing better. Part 6: Keeping hope and activity and the search up. Part 7, if possible: Finding our very own treatments (part of our very own new self) that actually help. Part 8, if 7 is possible: increasing the selected best bits of the old self....
 

DebMarPir

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A lot do, brain/fibro fog comes in its own flares or along with the physical ones! (I list it as an 11th form of fatigue.) In my case despite my 'alertness'-supps I seem to be writing stranger and stranger words, but at least I still see them while re-reading or after sending off, so I can still edit.

Part 1: Losing ourselves. Part 2: Mourning. Part 3: Finding our new selves. Part 4: Enjoying self-caring more. Part 5: Recovering some of the old self by self-caring and pacing better. Part 6: Keeping hope and activity and the search up. Part 7, if possible: Finding our very own treatments (part of our very own new self) that actually help. Part 8, if 7 is possible: increasing the selected best bits of the old self....
Thank you for these! I needed that today.
 

Jemima

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Feeling a little unhappy with myself because I have been so fuzzy the last couple days! It's almost like I am wrapped in gauze and I am trying to think through it and somehow can't gain clarity. I search for words and simply can't find them (or sometimes they occur later). Drives me crazy, as I feel I must come across as less mentally acute now. I used to be "smart" and it hurts me a little that I struggle with this. As a journalist I can write at home and look up synonyms. But in conversation, I can't find a way to ask Siri or Alexa to find the missing word. If anyone find that their clarity comes and goes, it would make me feel better. I am afraid sometimes I am on a downhill slope and I won't get any of this mental focus back. :(
Hi DebMarPir,

Yep, you're definitely not alone! I get this too.

I'm a commercial copywriter, and I totally get what you mean about writing through these kinds of symptoms. I used to have fantastic recall, but now find that I can write pieces going back and forth to my reference material and using a trusty online thesaurus, but by the next day I wouldn't be able to regurgitate what I've written in detail anymore. In conversation, we can get caught out on the fly, and it is tricky not to feel like other people are going to think we've dropped a ton of IQ points! I'm very vocal with the people around me, saying that fibromyalgia makes finding words more difficult, and these days just look words up in the moment - everyone seems to have gotten used to it!

When I was first struggling with fibro, I used to experience these kinds of issues to a far worse extent, together with short-term memory loss and even some blackouts. I've probably said to you before (of course, I can't remember :rolleyes:) that I found supplementing for mitochondrial support made this stuff much better. Perhaps something to look into! But it also seems to go up and down with other symptoms, so stress and sleep management help too. I hope you have more clear days coming, but whenever you feel gauze-wrapped (great metaphor!) don't feel ashamed of it - it's part of your condition and doesn't reflect your intelligence!
 

sunkacola

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Feeling a little unhappy with myself because I have been so fuzzy the last couple days! It's almost like I am wrapped in gauze and I am trying to think through it and somehow can't gain clarity. I search for words and simply can't find them (or sometimes they occur later). Drives me crazy, as I feel I must come across as less mentally acute now. I used to be "smart" and it hurts me a little that I struggle with this. As a journalist I can write at home and look up synonyms. But in conversation, I can't find a way to ask Siri or Alexa to find the missing word. If anyone find that their clarity comes and goes, it would make me feel better. I am afraid sometimes I am on a downhill slope and I won't get any of this mental focus back. :(
My clarity definitely comes and goes like yours. You are certainly not alone in this.
 

sunkacola

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The pill thing is something I struggle with as well. What works (most of the time) for me is that I take each one at a very certain time of day. The ones I take morning and evening are in with my dog's food in the bin, so that I take them before I feed the dogs. And the dogs would never let me forget to feed them!!
It helps me to remember, that one of my dogs gets medication as well, so we take them together. The one I take at bedtime is next to the bed and I take it when I get into the bed. Not allowed to get in until I have taken it, and it is in its own weekly pill counter so if I forget if I took it or not, I will know by looking at the box. I am lucky, I only take two medications every day, but those are my strategies. I guess if I had to take others I'd need to come up with different ideas.
Now, the vitamins........I still struggle with getting those taken every day. I am trying a new thing: putting the counter box next to the bedtime one, and I have to take the vitamins before I take the other pill, before I get into bed.
 

DebMarPir

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How do I find out more about mitochondrial support, Jemima? In other words, what helped you? I have been actually complaining a decade to my doctors about this problem, thinking it was from menopause (which can cause this) and another linked it to stress (which can, too, as I had a lot from the death of one parent and being caregiver to another). Now I find that those may well have played in but fibro was a big one, maybe the biggest. I have already found that stress and insomnia (also suffered in one way or another for years) are triggers. My body just got to the point it was doing such weird things my internist here was able to label it fibro. In the past, I was more "normal" lol.
 
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