Fibro fog

JayCS

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haven't yet found the alpha lipoic acid and the coQ10 that Jemima is suggesting
I'm not sure how you get things locally in the US, in Germany since our local pharmacies can order a lot inside of a few hours. But looking in my German online pharmacy platform for ALA and Q10 shows me 50 products and 812 products respectively, which is luxurious compared to for instance the serrapeptase I'm using, which only has 1 (the most extreme case), altho amazon has more products (not a place I'd want to get some if I have the alternative, tho... ).
I'm thinking at least the "coQ10" might've got you confused, as it's a comparatively little used abbreviation: co = coenzyme, Q10 is a form of the co-enzyme Q, also called ubiquinone, and one of the forms of Q10 is called ubiquinol, so this might help you to find it.
ALA doesn't really have a much used alternative name, lipoic acid or thioctic acid are only occasionally used.
 

Jemima

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I'm not sure how you get things locally in the US, in Germany since our local pharmacies can order a lot inside of a few hours. But looking in my German online pharmacy platform for ALA and Q10 shows me 50 products and 812 products respectively, which is luxurious compared to for instance the serrapeptase I'm using, which only has 1 (the most extreme case), altho amazon has more products (not a place I'd want to get some if I have the alternative, tho... ).
I'm thinking at least the "coQ10" might've got you confused, as it's a comparatively little used abbreviation: co = coenzyme, Q10 is a form of the co-enzyme Q, also called ubiquinone, and one of the forms of Q10 is called ubiquinol, so this might help you to find it.
ALA doesn't really have a much used alternative name, lipoic acid or thioctic acid are only occasionally used.
It looks like there's a lot of choice for both on Amazon US, but wow - CoQ10 is expensive over there compared to here!
 

Auriel

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DX FIBRO
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08/2006
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Ok, I’ve been meaning to ask about ‘the fog’ is this like something that resembles early dementia cos within 2 weeks I lost 3 1 pint milk cartons, 1 was in the fridge, the other 2 I’d left in a shopping bag when I’d gone lie down after shop, next morning my gas man was due to check my boiler I was desperate for tea cos I woke up with cotton mouth yet couldn’t find my milk in the fridge yet sworn I’d bought some! I really felt ready for a nursing home! so is this fibro fog or is fibro fog the fatigue that comes with it or both?
 

JayCS

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is this fibro fog or is fibro fog the fatigue that comes with it or both?
As you may have guessed, I love questions like these about how to exactly define fog and fatigue...
Whilst I think the term fibro fog and the term fatigue are used in a fuzzy/blurred/emotional way, praps by nature of the subject,
I'd love to discuss what they may or may not mean. So first four answers to your question and then a lot of definition boodle, if anyone else is interested or would like to correct me...

4 answers:
Firstly, fibro fog is always used alternatively to brain fog, so purely mentally, whilst fatigue is usually meant purely physically.
Secondly, I'd so much guess that most'd argue that fatigue can come without fog, and fatigue is more common, not sure how often fog can come without fatigue, that I'm wondering whether you actually meant it that way round - I'd love to be corrected....
Thirdly, this 'early dementia' feeling is definitely an element of fibro/brain fog, not of fatigue.
Fourthly, the fatigue that comes with the early dementia feeling is not called fibro fog. Thinks/sez I.... (?)
(I must admit I'm not an expert on fibro fog, my 'early dementia' is something I had before and is due to my non-ADHD hyperactivity & multi-tasking.)

Definitions/lists
On my reference list of symptoms, I've grouped all symptoms I find relevant to fibro fog as part of 'cognitive/thinking unclear/difficulties' like below (I think I put the smell hallucination symptom here because it fits here least bad.)
And on my list of 11 types of fatigue (repeat post), I've divided mental fatigue up into 10 inner fatigue and 11 brain fog, see below.
So like I've put above I see fibro fog as brain fog as a form of mental fatigue, which may come separately from physical fatigue.

Types of fibro/brain fog:

General sensations:
Confusion
Dizziness, e.g. vertigo
Light-headedness
Spaced out feeling

Cognitive / Thinking unclear, difficulties:
Attention/concentration difficult, easily distraction
Decision-making difficult
Distance-judging difficult (when driving, etc.)
Judging difficult
Orientation (Disorientation) (directional or spatial, really or feeling)
Recognizing (routines, left/right, number/word orders)
Remembering (difficulty remembering, short-term or long-term, losing things, forgetting)

Speech:
Expression difficult (words, numbers)
Speech slowed, stuttering, stammering
Understanding difficult (words, numbers)
Word-finding difficulty/using wrong words.

Perception (Seeing, hearing, smelling):
Not seeing what you’re looking at
Smell hallucinations
Sensitivities → there.

Balance:
Balancing difficult
Walking wobbly

Coordination poor:
Bumping into things
Dropping things frequently
Staggering gait
Stumbling, tripping frequently
Walking clumsily

Fatigue types

For the (A) tiredness part I use
1. dozy, either getting up 4-8x per night or in stints in the day, when my mind is awake, but I may want/need to sleep,
2. drowsy, when both mind & body are tired and
3. numb, in my head, due more to meds like amitriptyline and CBD which I have stopped taking coz of that.
I also separate
4. itchy eyes from tiredness, because sometimes that suggests to me I’m tired altho my body doesn’t (dry eyes), sometimes it does,
part of my tiredness I’ve been realizing/testing the last few weeks is the
5. feverishness-feeling, which I thought was separate, but I now believe is not, because I now nap successfully then, and make my overall sleep more effective
For (B) the missing energy I have
6. quick exhaustibility (energy spurts, I’m an odd one there)
7. then outright exhaustion of the muscles,
8. feebleness, dullness, in mind & body,
( C) a deep ‘fatigued’ pain
9. the Big Ache, due to overdoing it (both different to the sore muscles I used to have),
plus D) mentally
10. the inner fatigue, which I think a lot of people have, esp. with ME/CFS, may be sort of listless and have to do with depressiveness/depression, but I only seldom have. I also guess
11. brain fog belongs in here too.
I think what most people mean with fatigue is my #7 & 9(?)
(Already posted here, but I hope a repetition isn't too harmful: Physical therapy for fatigued muscles?)

Edit: Brain fog is something quite a lot of other conditions also have...
 
Last edited:

Auriel

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DX FIBRO
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Cool! all this’ll be handy for new forum babies and me (obviously) Thanks jaycs 💜🖤💜
 

sunkacola

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I will add something to the Fatigue element of Jay's post. The kind of fatigue I get goes beyond exhaustion of muscles, or aches due to overdoing it, or depression. What I get is something that almost puts me into a completely non-responsive state. It doesn't always come with pain (although I am seldom without pain of some kind, somewhere) and it doesn't always come with depressive thoughts. It's just a total inability to do anything at all unless it is absolutely necessary. All I can do is lie there, floor or couch. Cannot talk. Can't read, watch a film, or think. I go numb. To get up and let the dogs out or go to the bathroom myself is an extremely major activity that I can only manage out of sheer will power, I have to crawl slowly, and it results in a longer period of not even being able to think. Too tired to think. There's no way I could sleep when I am like that - I am too tired to sleep. All I can do is lie there, blank, feeling nothing except exhaustion.
It's hard to describe that to anyone who has not experienced it. I don't know where that fits in with the definitions, or what one would call it.
Lucky for me, this level of fatigue doesn't come very often, maybe once or twice a month at most, although of course I experience much less severe levels of fatigue frequently, as most of us here do.
 

JayCS

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kind of fatigue I get goes beyond
Wow - I'm hesitating to even attempt break that down. Praps it's something that defies definition - as you say "goes beyond"....
Maybe bits of #3?, 7, 8 and 10, but utterly radical, volume knob turned down not from 10 to 3, but to absolute "0" (or "0,2").
I can't see a #12 for it. But anyway definition attempts only start making sense if they can be put to practical use.
And when many things come together it becomes a sand storm and when something is so radical it becomes a tornado, but words and definitions become unreal when you're in them. Only the start and the end or praps an eye in the storm may give clues to whether it's sand, snow, wind, water, etc., what it's composed of, and how praps to protect yourself... Apart from that it's remembering it passed in the past...
 

Badger

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Wow - I'm hesitating to even attempt break that down. Praps it's something that defies definition - as you say "goes beyond"....
Maybe bits of #3?, 7, 8 and 10, but utterly radical, volume knob turned down not from 10 to 3, but to absolute "0" (or "0,2").
I can't see a #12 for it. But anyway definition attempts only start making sense if they can be put to practical use.
And when many things come together it becomes a sand storm and when something is so radical it becomes a tornado, but words and definitions become unreal when you're in them. Only the start and the end or praps an eye in the storm may give clues to whether it's sand, snow, wind, water, etc., what it's composed of, and how praps to protect yourself... Apart from that it's remembering it passed in the past...
That's a nice way of putting it, symptoms and their impact on life can feel overwhelming leaving us isolated and unable to get the measure of it. Your previous post was very helpful, I hadn't realised dropping things could be related, it's something I've been doing a lot.
 

sunkacola

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I think dropping things is definitely related. When I am in a foggy sort of place it often, although not always, goes along with having a "dropping-things-day". I really dislike those days, because I sometimes drop something, pick it up, drop it again, pick it up, drop it again....argh.
I don't handle precious breakable things on those days, needless to say!

I never used to drop anything and have always been very coordinated.

I was talking with a friend the other day and couldn't remember something and said "hate it when that happens", and she said, "It happened when we were younger too, but we don't remember that because we thought nothing of it!" She's right, of course. Possibly it doesn't happen any more often now. But, truth is, I think it does.

I agree that to get the measure of things is a very helpful thing in managing something that has many and variable symptoms like fibro. Jay's post is excellent for sorting that out.

At the time of those super fatigue episodes I don't remember anything like "it passed in the past" because I can't really think. In a way, those times are not all that bad, because I am so out of it that I am not actually suffering, since suffering involves thinking and feeling that the situation you are in is bad. But if I need to get something done, it's a problem.
 

Eff2013

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I will add something to the Fatigue element of Jay's post. The kind of fatigue I get goes beyond exhaustion of muscles, or aches due to overdoing it, or depression. What I get is something that almost puts me into a completely non-responsive state. It doesn't always come with pain (although I am seldom without pain of some kind, somewhere) and it doesn't always come with depressive thoughts. It's just a total inability to do anything at all unless it is absolutely necessary. All I can do is lie there, floor or couch. Cannot talk. Can't read, watch a film, or think. I go numb. To get up and let the dogs out or go to the bathroom myself is an extremely major activity that I can only manage out of sheer will power, I have to crawl slowly, and it results in a longer period of not even being able to think. Too tired to think. There's no way I could sleep when I am like that - I am too tired to sleep. All I can do is lie there, blank, feeling nothing except exhaustion.
It's hard to describe that to anyone who has not experienced it. I don't know where that fits in with the definitions, or what one would call it.
Lucky for me, this level of fatigue doesn't come very often, maybe once or twice a month at most, although of course I experience much less severe levels of fatigue frequently, as most of us here do

Sunkacola, this is the first time I have heard someone describe EXACTLY how I feel when fatigue hits me. Wow, I have tried to explain it to my family but I suppose if you have never felt it it is hard to understand. I too become completely non-responsive and what feels like to me 'dead to the world'. It doesn't happen often but when it does I too can't do a single thing. I drop on the couch and stay there for what seems to me to be an eternity. I have no sense of time or anything. I can't read, watch tv, or listen to anything or anyone around me. I just go totally numb.
It is scary and one of the weird fibro symptoms I can do without. I also feel like it catches me totally unprepared. When I finally come around to some type of normality I become very emotional and teary. It is very strange but it happens every time.

I rarely comment on this fabulous forum, but when something resonates I feel I must add my small bit. Keep up the good work. This forum has been an amazing kind of comfort for me. First thing, every morning after breakfast I read all new posts and it sets me for the day. I have learnt so much from here. More than from anywhere else. And believe me I have been struggling for years.
 

sunkacola

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Sunkacola, this is the first time I have heard someone describe EXACTLY how I feel when fatigue hits me. Wow, I have tried to explain it to my family but I suppose if you have never felt it it is hard to understand. I too become completely non-responsive and what feels like to me 'dead to the world'. It doesn't happen often but when it does I too can't do a single thing. I drop on the couch and stay there for what seems to me to be an eternity. I have no sense of time or anything. I can't read, watch tv, or listen to anything or anyone around me. I just go totally numb.
It is scary and one of the weird fibro symptoms I can do without. I also feel like it catches me totally unprepared. When I finally come around to some type of normality I become very emotional and teary. It is very strange but it happens every time.

I rarely comment on this fabulous forum, but when something resonates I feel I must add my small bit. Keep up the good work. This forum has been an amazing kind of comfort for me. First thing, every morning after breakfast I read all new posts and it sets me for the day. I have learnt so much from here. More than from anywhere else. And believe me I have been struggling for years.
Thanks for this response, Eff. It is helpful to know that you are not alone in this. I have not had anyone until now tell me they experience the same thing. I never get the emotional part afterward, I just slowly come out of it. I guess it will always catch us unprepared because we never know when this will hit. I have found that I can often tell a few minutes ahead of time when it is coming and make a phone call if I have to, to cancel something if I am supposed to be somewhere. Fortunately for me I am no longer working so I have not had this hit me while away from home. I sure hope it never does.

I don't find it scary, because I have experienced it enough times that I know I will come out of it and be fine....and while in it, I can't feel anything as complex as fear, anyway. Just remember that you will always come out of it and be OK. But if you live with any other people, it would be good to alert them to it so that they understand and know not to cart you off to emergency or something! I don't live with people, only animals, and they get concerned but are also used to it.

I am glad this forum is helpful to you. that's what we are here for.
 
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