Confusion, over thinking and memory issues

[SSSS]

Hi everyone, this is my first post here.

I've been diagnosed with Fibro for the last 19 years and as I'm approaching my 40s, I'm finding that my concentration, memory and understanding is really suffering.

I don't take any medication as I have other health issues, I've experienced that meds for one things makes another thing much worse, so I just try to pace myself.

My main issues right now are overthinking when I'm being asked questions or tasked to do something. The fibro fog gets so dense that I don't fully understand or remember what I'm doing/hearing and I over think the simplest of instructions/questions, so I end up causing issues/doing something wrong/answering wrong repeatedly and have been for so many years. It looks like I'm not listening or caring, because although I'm listening the best I can and care very much, that's what I'm showing with my actions and behaviours.

I have a hard time slowing down my thoughts and thinking clearly. It's all a mixture of fibro, anxiety and dissociation. I'm causing my husband so much frustration and upset because he's been supporting me and helping me for years to try and help me listen better and learn from the mistakes and bad behaviours I keep repeating, but it's got to a point where he just feels ignored all the time and thinks I don't care because I show that I don't care by not listening and not changing my behaviors. And it's maddening because I care so much and I keep trying to change, but that's not what I'm showing because I keep repeating the same mistakes and behaviours. I understand that part of my issues are going to be to do with my personality, but these health issues on top just exaserbate the difficulties in trying to change in the way I think and behave, as well as make communication, concentration, learning and understanding so difficult in the first place.

There's only so much reminders and writing stuff down can do, when in the moment and I have to rely on my own realization, actions and behaviours, I'm failing more than succeeding...

I know this post is a little all over the place and I'm sorry for that, it's hard to write about what's happening and how it all feels and this is the best I can explain it right now. But if anyone has any advice, it would be greatly appreciated and thank you very much for reading this. All the best to you all.

 

[JayCS]

Hi everyone, this is my first post here.

Hi, and a warm welcome!

I've been diagnosed with Fibro for the last 19 years and as I'm approaching my 40s, I'm finding that my concentration, memory and understanding is really suffering.

Yep, I can imagine and have often heard that recently.

I don't take any medication as I have other health issues, I've experienced that meds for one things makes another thing much worse, so I just try to pace myself.

Brilliant!

My main issues right now are overthinking when I'm being asked questions or tasked to do something. The fibro fog gets so dense that I don't fully understand or remember what I'm doing/hearing and I over think the simplest of instructions/questions, so I end up causing issues/doing something wrong/answering wrong repeatedly and have been for so many years. It looks like I'm not listening or caring, because although I'm listening the best I can and care very much, that's what I'm showing with my actions and behaviours.
I have a hard time slowing down my thoughts and thinking clearly. It's all a mixture of fibro, anxiety and dissociation. I'm causing my husband so much frustration and upset because he's been supporting me and helping me for years to try and help me listen better and learn from the mistakes and bad behaviours I keep repeating, but it's got to a point where he just feels ignored all the time and thinks I don't care because I show that I don't care by not listening and not changing my behaviors. And it's maddening because I care so much and I keep trying to change, but that's not what I'm showing because I keep repeating the same mistakes and behaviours. I understand that part of my issues are going to be to do with my personality, but these health issues on top just exaserbate the difficulties in trying to change in the way I think and behave, as well as make communication, concentration, learning and understanding so difficult in the first place.
There's only so much reminders and writing stuff down can do, when in the moment and I have to rely on my own realization, actions and behaviours, I'm failing more than succeeding...

I know this post is a little all over the place and I'm sorry for that,

Sorry to not agree at all!: I could immediately understand every single word and thought it was very well explained!

it's hard to write about what's happening and how it all feels and this is the best I can explain it right now.

I think fibro and similar puts all of us in the position to either struggle for the right words, explanations, descriptions of all our symptoms, and you've done a great job of it!

But if anyone has any advice, it would be greatly appreciated and thank you very much for reading this. All the best to you all.

I'm not sure if you really are "overthinking", as the way you've described it sounds as if you might be getting things confused. But this mingling of anxiety, dissociation and fibro fog seems complicated. Of course I hear you are working on the anxiety and dissociation. For fibro fog my first suggestion would be supps - are you taking any, are you interested? But for the unmingling I'm getting "mixed messages" - why wouldn't I, , and am not sure if your husband could be reacting "differently" (better), if a sort of bad conscience and anxiety on your part as a result is making things worse etc.

If you like I'd invite you to describe a situation, typical or not - I think the unraveling is easier then. Also because maybe your impressions might be misleading you a bit, due to all this seeming muddle and we can then comfort, give new orientation and hints etc. better.
It's probably going to be some combination of "relaxed acceptance" for you and your husband on the one hand (including decreasing demands as part of your mental pacing) and quite a few techniques/strategies for coping with brain fog, anxiety etc. better.... - the main ones probably being stop! - timeout, self-care etc. for your mind, same as your body will need it. You might care to have a look at our memes thread to do exactly that...

 

[ChristaPeanut]

Hi and welcome! I just got diagnosed this year but I've had symptoms for four years. Last year, the brain fog really increased a lot. I thought it was because of pandemic/2020/ my mom dying etc...and it's not that all that stress didn't affect it...it was just I started to not be able to voice my own thoughts. Honestly the brain fog has been one of the hardest parts of this for me. Sometimes I have to have a half or full "quiet" day where I cant hear the tv or noise and I either sleep or read. My husband doesn't fully understand fibro, but he is a fully disabled veteran so I am lucky in the fact that he understands I need rest or just can't do things somedays. The struggling to say "No I can't do that" is hard but I am learning how to say it. I've also made sure that even when I have good days I take some me time for reading or writing or crossword puzzles, etc...I am bad at the crosswords some days but even if I can get a couple that helps me feel better in a weird way. I'm with Jay, I thought your post was well written and organized and it made total sense to me! But I do understand that messaging can totally drain your brain.

On a side note I have noticed that somedays that I have bad brain fog, I have to drop energy sucking tasks. Even like, rechecking a text message for typos, or maybe even not returning messages right away. And Sometimes I want to talk but it's like my body won't even let me do that. Once I accepted that (which sucked for me but I did it) its been at least a little easier to handle. I don't feel as bad about taking care of my own needs first. For me, that is what fibro has been teaching me a lot.

Gentle hugs!

 

[sunkacola]

Hello SSSS

Have you sat down with your husband and explained all of this to him? Or, if that seems daunting, can you write down how it is with you, how hard you try, how much you care, and everything else you said in that post above? Or, even copy and paste the post itself and show it to him?

I think often others who cannot understand what we are experiencing find it very difficult to comprehend. They think, as your husband does, that if you just worked hard enough on it you would get better. In some cases and with some disorders that is definitely true. With others it is not, and nothing is across the board with that.

For some cases, trying really hard does only a minimum of good in terms of changing what you can handle or do. Ask him to think of a person who is paralyzed on one side, for instance. With very hard work it's possible for some to learn how to move a little, and most can learn ways to compensate for it, but no amount of work is going to change the fact that that side is paralyzed permanently. A person can only do their best. He needs to know you are doing the best you can.

Now, I also suggest that you turn your attention to yourself and find ways of not allowing your husband's frustration with you to dominate in your mind. You need to take care of yourself. Please read my advice post about that, and try some things to see if they might help you to feel better. And stay with us. We are here to help and to support you and make sure you don't feel alone.
Best of luck.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[SSSS]

I just wanted to say a big thank you to everyone who has replied. It's been hard trying to think of what/how to reply as I've been very foggy lately, but I at least wanted to thank you all for your time and support.

We've had a lot of conversations about the issues I have, the only problems we have are what I'm causing by being careless, not slowing down, not thinking clearly, not listening, not communicating...the list goes on. Everyday I'm trying to learn from the previous days/months/years, but it only matters if I actually make changes, if I actually stop or at very least reduce the amount of issues I'm directly causing. I'm putting such a strain on our relationship, I desperately want to get myself in a better place so that I can show what's true - that do I care, that I can change and that I can be trusted with things. I really appreciate you guys listening, it helps to "say" it out loud to try and help myself.

I appreciate all the help and thank you for the welcome to the forum. I've been reading through some of the posts and although it's not nice to know so many people have a lot of stress with their fibro, it helps to read other people's experiences and advice too.

Wishing you all well.

 

[sunkacola]

Hi again, SSSS.

I will go out on a limb here, and say that it's not quite accurate that "the only problems we have are what I am causing by being careless, not slowing down...." etc.
I would like to point out to you that if you have fibromyalgia, YOU are not actually causing these things to happen, your fibromyalgia is causing this to happen.
If it were up to you, you wouldn't do these things, you'd be healthy.

It is as if you were both blaming you for not being able to play the violin with only one arm. It's not your fault.

I find it very unfortunate that your husband is apparently blaming you for things that you cannot help. Your fibromyalgia is not what really is causing the strain in your marriage here. It is your husband's attitude that these things are your fault. And the subsequent guilt and shame you feel.

Second, you say that you keep trying, but it only "counts" if you succeed to "reduce the amount of issues I'm directly causing".
You don't want to have the problems you have, and it is not your fault that you are not healthy. I wish you would stop blaming yourself for something over which you have very little control, if any, and I would like to tell your husband that his blaming you is only causing more problems.

I would like to suggest that instead, the two of you look at the problems that Fibromyalgia (not you) is causing, and see how the two of you could work together to help you to feel better so that the symptoms of fibro can be reduced.

 

[MarsB]

Hello SSSS And welcome!
Being extra busy, stress etc. DOES increase my fibro fog. It comes out as searching for a word or saying the wrong such as “ could you hand me that fork?” When I really meant knife. I know it’s frustrating for those around me.
I work with a therapist who had me try art as a therapy - like doodles, zentangles, coloring, etc. For me it is very helpful in reducing stress and anxiety.
I tell those close to me about fibro fog and try to give them a heads up if I perceive a situation could exacerbate the fog.
Someone else mentioned “quiet days” and I so agree. I try take this day to listen my body. Do I want a nap? Would a hot bath be helpful? I feel like it recharges me.
Finally, restful sleep is a MUST. Sleep is when our body heals.
Best wishes - there are a lot of helpful hints and friendly people here to listen.

 

[johnsalmon]

I suffer from Brain Fog from both Firbo and Hastimoto disease and I use the site "neuronation" on a regular basis to exercise the brain and am showing improvement Neuronation puts you thro a number of small tests to design a program suited to yourself.

 

[Badger]

When you mean to say mobile phone and say clock or watch instead there's probably fibro fog at play. In one ear and out the other. Always the fool with the loose gist of something that doesn't matter. It can feel like you're a million miles away, but on the other side at least you get to begin again. In the space of a breath, begin again, wake again, even if in baby steps, alone, begin again.

 

[johnsalmon]

brain fog for me is more a lack of concentration if I work at it I can recall - I still do programming but do it much slower and a job that would take a day or so will now take a week or so I still know the programming language elements but is just take me longer to recall them. Brain fog does not mean loss of memory just problems with the recall

 

[JayCS]

When you mean to say mobile phone and say clock or watch instead there's probably fibro fog

Yesterday I mis-thought "sound"(?) for "light" - noticed before speaking. I found that one interesting. Similar to mobile vs. clock, both small gadgets, so have a logic. And sound and light have a logic, but I spose more complicated. Demonstrating how our brean brain forms categories.
This morning I said toilet instead of toothbrush. Praps not a pretty mix-up, but all the funnier. When I'm speaking I can usually correct immediately, but occasionally don't notice, it seems - unless people listen wrong...
When I write it's usually sound-a-likes in English (yesterday too/two), not in German, not sure why. Sound(?)/light was in German, might have been alliteration - both starting with L, but I can't remember the exact words.
Interesting, I'm thinking about now noting them, to track my progress / decline. Cos it's definitely getting worse, altho good enough. I don't think I use language less than when working full time: even hardly working this week I probably typed >8h/d. Just tested 80-90 WPM with a few mistakes, but I can talk with others a bit while typing, even thinking. And I "speak" internally even whilst gardening. Or is all our thinking actually 'talking'? A lot of mine seems to be.
If it's not fog, it's "dementia", probably both, praps a bit of age thrown in, and my focal seizures originating from and being in my speech centre, too, when I get them everything comes out wrong on many different levels, altho I can still win at table tennis at the same time (afterwards it weakens a bit). Of course all brilliant considering, can't complain. But
for all of these reasons, plus family dementia, I defo wanna keep it in check.
I usually note my fog as 10%, alertness 90%, on "bad" (brain) days 30%/70%, but I'm still intelligible whatever blurb comes out (excerpt except during a focal seizure). As ever it's not really possible to put a number to it, it's just for comparing to myself. OK, sometimes I realize I'm not even gonna be able to get blurb out, I just wave my hand "dismissing myself"....

I've now added a new series called "Foggies" at the bottom of my daily blog entry, after "Lessons in self-care" (which is at #595 today), "Reasons to be cheerful (#637) and the one I started Feb 17th "Simplified" (#32 today).

Edit: Practicing typing, I'm surprised to realize I can type faster in German, >100WPM. And I spose 2 languages and switching between them all day is good training too....

 

[Badger]

It's a good idea keeping a journal, the insight may well help. I imagine working in two languages is a benefit, I only speak one but am fascinated by them and enjoy foreign language movies and shows with subtitles. It's strange how we can mistake words such I did with my mobile, but then it has the time of day and I don't wear a watch. We also have dementia in the family so I shall try to be aware of any future decline. Hopefully relaxing into things will help towards retaining information.

 

[dw1256]

Yesterday I mis-thought "sound"(?) for "light"

A month ago I was introducing myself to someone at my daughter's swim class. I said, "Hi, I am Nikki's Mom." Well, I am her dad. I can only imagine what they are thinking. My brain seems to be 3 sentences ahead in conversation and I mistakenly grab the wrong words sometimes.

On a related note, does fibro fog make things feel differently then they used to? For instance, Friday's used to always have a certain feel to me at work. Years ago that changed, maybe partially due to covid but I think it was even before that.