Fibromyalgia

Gradually then, as the years went on, I also developed cognitive problems and what they call brain fog, where you feel very confused at times and as if you’re just… you’re witnessing what’s going on, but you’re on the outside looking in, is really the only way I can describe it. Again, it’s a very bouldering kind of symptom because you don’t know how to deal with it. Until you meet other people with those symptoms, you feel like you’re very alone.

Yeah, terrible memory problems. I didn’t know that was part of the fibromyalgia thing, but I do struggle [shaking head]. It’s just… unbelievably struggle with words and names and I think, “Oh, god, I’m not getting dementia next,” you know? I thought that was an age thing; I didn’t know it was fibromyalgia. But I do have a lot of that.

So was it you know, as you say, struggling with remembering names and getting the words out, is there any other kind of other observations you have around where your memory is a bit… you know, affected? Or that’s the two main things?

That’s the two main things. Sometimes I think I’m going somewhere and I think, “How do I get there again?” and I’ve really got to find hard to search… and I get there, but I think ‘ah’… I really, really struggle with that.

And you say, you know, in family you make a joke about it, so how do you feel about, you know, making jokes about that within you know, that kind of family setting?

I don’t mind. I think I take the joke and sometimes I make a joke myself about it but I wouldn’t like it to get any worse than it is. I can watch a whole television programme and [gestures with hand] I wouldn’t be able to tell you a person’s name in the programme. That’s nearly every day, and that does worry me a bit.

Whereas yeah I’ve got you know, I’ve got someone, my friend with ME or my friend with Lyme Disease, yes, they’re different conditions, but in terms of the… I think it’s like, even explaining brain fog, they’re just like, ‘What on earth is brain fog?’ You’re just a bit tired or you know oh you can’t concentrate, you know? It’s like when we watch telly, my husband and I, I can’t remember anything that’s happened on TV. I’m like, ‘Who’s that? What’s going on?’ and he’s like, ‘You’re not concentrating,’ I said, ‘I am, I just can’t remember, I just haven’t got a clue.’ And again, they don’t… you know, he doesn’t get what brain fog is.

[gestures at head] Sometimes it’s just like a mass of cotton wool and you haven’t got a clue, and yes, you can giggle about it, but then it gets quite frustrating as well, whereas if I say to my friends that have experience of that, they’re just like, ‘Oh, man, I know exactly how you feel,’ and then you just think, ‘You know what? [points to head] [points to head] It isn’t all in my head, other people have it as well,’ so it’s again, it’s nice to have that.

I struggle to get my words out, I, the losing the concentration, just basically forgetting things, the short-term memory, that is becoming more, prominent, that’s the short term memory, it’s the struggling to get words out, it’s trying to get, and I like become stuttery because I just can’t remember what I’m trying to say, that I find very hard.

But I do find that the, what we call the fibro fog, and your, the concentration, your, the short term memory, that I do, I really do struggle with, I really do.

it was the mental thing of forgetting things and people think you know, I’d lose the concentration of conversation and I would stop halfway through and I felt people thought you know, I wasn’t listening to them, that I was quite thick actually trying to get my words out, I wasn’t communicating properly.

I find I can’t do the things that I want to do that I used to do, the sweating, the tiredness, the, sometimes the brain fogs, they are debilitating and I really don’t know what to do about it.

There’s the, depending on my mood, the slurring of the words, which sometimes makes you look as if you’re, been on the bottle [laughs].

Sometimes if I get over exciting at these things I start slurring. I don’t drink alcohol, that’s a long time gone, but I, you get this like a fibro fog where you’re, you’re out of your comfort zone and, and, “Oh, I don’t want to be here, I want to be at home, I want to be slumming it, I don’t want to be dressed up”, and I don’t like being like that either, but it’s horrible.

And so… and another thing that fibromyalgia does, it makes you very forgetful, it gives you fog in the brain. I don’t know whether anyone’s ever touched on this but you, you become very forgetful. Not meaningly, and sometimes you think, is this the onset of dementia or am I? You know? Is this, you know, something else kicking in because of… you know, what’s going on with the brain, having to, you know, send all these… fire all these things at your nerve ends, you know? So you do get very, very forgetful and sometimes that’s a, a worry. I often mention it to my consultant and they say that this is normal, that because of the pain that you’ve got, you’re, you know, you just… your concentration levels are not the same, you know? You, you know. So… she pointed this out by saying, “Well, you don’t sit through a film, do you?” I went, “No.” She goes, “Because of your concentration, because that has an effect on your capacity to, to retain information.” And so I think that’s an important thing, that if anyone’s ever dealing with somebody with fibromyalgia, to bear that in mind. If they’ve not done what they’ve asked you to do, it’s not maybe because they don’t want to, there’s possibly two reasons. One, that they physically couldn’t do it, and the other one is that they’ve forgotten all about it just due to the kind of fog that you get in your brain with it, you know.

Trying to take in too much outside stimulus. So yeah, if I’m say in the shops, which I don’t do terribly often, I go for my food shopping and what have you, but I wouldn’t go round just for a day out shopping. I live in a very small rural community and everything is quite calm and peaceful. If I suddenly was transported to the middle of a big city, I would literally just shut down. I can’t take in all the stimulus that’s going on and it’s just too much for my brain. So, and now I can’t remember what you asked me.

It’s all right. Have you …

This is the problem as well you see.

That’s absolutely okay.

You can only use a small part of your brain to think of something and everything else gets shut out to concentrate on that thing, and then whatever else there was has vanished.

And then I started getting really forgetful and, just brain fog, like I would walk into a room and think, “Why am I here and what am I doing?” and that really, really worried me. So the, my GP referred me to a rheumatologist and they, after asking me lots of questions, he was particularly interested in an accident that I’ve had, when I was 28 where I fell down some stairs, went through a glass door and I ended up having discs removed in my spine.

And the brain fog is something, that I try to manage by writing things down, like appointments, I’m hopeless, I need to be prompted. I have a very good friend who prompts me for appointments who kind of knows when maybe I don’t recognise that I’m struggling a bit, but she does now you know, and she’ll say, “What’s wrong?” and I’ll say, “[My friend], my mind’s just gone completely blank”. And it really upsets me [voice tearful], because it’s not nice, when you think, “I’ve got something to do today and what is it I’m supposed to do?” and you get overwhelmed by everything, you just feel as though you’re drowning.

Well I guess memory and things like that again, I can start conversations and then have no idea what I was talking about, I can put things in places and have no idea what I’ve done with them, or, as I think as I said to you earlier on, can you remind me to put the lights out and where the key is because I could just walk off. You know, I can leave the grill on or whatever and not know until I smell it burning.

So my mental capacity at times can be quite small, but equally unfortunately, it means sometimes I interrupt people because if I don’t say exactly what I’m thinking about at that particular second I completely forget it again. So it can appear that you’re quite rude when you don’t mean to be, it’s just possibly something they’ve said suddenly triggers a memory so you want to slip it in while you think of it otherwise it’s gone. So sometimes people can think that you’re always butting in when you don’t mean it like that .

And I think some, some guidance of some sort that can give you a bit of structure as well, and I think routine is important for the fibro fog. Since I’ve had [my son], I’ve noticed that routine has helped a lot, because I know what happens, because I’m so forgetful, I even forget my medicines, I have to have timers for that and, since [my son], he is your timer [laughs] he really is, and he keeps you in that routine.

I mean normally I would’ve like, I wouldn’t have an alarm set for what time I wake up, I just drift in and out of sleep throughout the night and most of the morning, but because I’ve got [my son], I don’t want to miss out on him but I want to make sure I have enough sleep that I can be around him. So I routinely wake up at 10.00 and routinely go to bed at 9.30, so that helps.

And when I go to bed I don’t just go to bed and sleep, I will read a book or I’ll watch a TV programme and, so it’s sort of relaxing me into my sleep because it can be quite painful, especially when you’ve woken up in the middle of the night in pain. And then again, I do the reset thing, I watch a programme or I read for an hour and then I go back to sleep again, and that seems to work for me. So I really do think routine’s a lot better.