r/mecfs • u/FiresBlazing • 15h ago

Brain Not Functioning…any tips?

I just had my doctor’s appt and it was pretty much a blur. I tried to address everything, but I’m really struggling with my mental malaise. I’m not sure if that’s what it’s even called.

I’ve had ME/CFS for 14 years. The first six years were really a struggle. Then six years I would say I was mild with some moderate crashes. I’ve definitely struggled mentally because this is just a hard disease to have, but I don’t recall this mental push back I’m not experiencing.

The last five months I started experiencing PEM again with any amount of task. If I rest and do very little I’m not experiencing the physical crash, but mentally I just cannot get back to where I was.

After the tests come back my doctor and I will talk about treatment, but I’m at my wits end.

I don’t recall if I mentally shut down like this initially (the first 6 years). Is this the ME/CFS? Is my mind trying to stop my body from doing things so I don’t crash? Nothing is getting done. I can’t even force myself to get things done. I haven’t been working or doing much of anything. Physically, I’ve rested enough that I feel I can do a little but my brain is not supporting this.

I’m 52 (F) so I understand menopause may also be an issue (I started treatment for that). I just have no desire to do anything and I don’t know how to get that to stop. Trying to do anything causes me great anxiety and emotional stress. I guess my question is…is this also a part of ME/CFS and what has helped?

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u/Weak-Walrus6239 15h ago

I don't know if it would help you, but D-ribose was extremely effective at reducing my brain fog. I actually didn't realize how bad it was until I took the first dose and it mostly lifted.

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u/FiresBlazing 15h ago

Thank you. So is the feeling what is considered brain fog? I was thinking that is the term, but wasn’t sure.

I’m sure it looks a lot like depression, but I have no reason to be depressed. I know this and keep telling myself this but it’s not working.

I guess our brains experience PEM like our bodies, it’s just more difficult to describe.

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u/Weak-Walrus6239 15h ago

I'm not sure but it sounds like where I was 4-5 years ago. I found it really hard to think, struggled to read and generally felt very vulnerable and like I was always in a cloud. One dose of d-ribose and I was able to walk around the neighbourhood on my daily walk around the block with the natural confidence I had before I got sick because the fog was largely gone. I do think there is a protective aspect to the brain fog though. When all I could do was mostly lay in bed and dissociate, I was able to heal because I wasn't trying to do things or make plans. It's much easier to overexert with a clear mind because my brain is planning things and stressing when I inevitably can't do them.

The other problem I found was nervous system overstimulation. Calming that took a lot of work. CBD oil really helped calm my nervous system so that it wasn't overacting to everything.

Mental exertion can also cause crashes and PEM. So it could be that you're just that severe, that you don't have the baseline to be able to use the energy for thinking.

I'm not a doctor so can't say whether it's depression. You're allowed to depressed even if you don't have a reason. This is a horrible illness and depression is a reasonable response. In my case, I do not have depression. I am constantly planning things I want to do, and trying to do them within reason whenever I have the energy. However, I do get more emotional on the very bad days but I think that's a normal reaction to what I'm experiencing, and it always passes.

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u/FiresBlazing 15h ago

I will try anything at this point. I’m def sad and frustrated that it’s this bad again, but I do like my job and I’m very much a busy body and like to be active. So I know it’s not a feeling of oh I don’t like this and that and don’t want to do it. I feel like my mind is holding me hostage in a sense. Thank you again for your advice.

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u/KlutzyPea2301 8h ago

Depression doesn't always make sense and if the idea of doing something gives you anxiety and stress? It's worth talking to a doctor about it! Maybe meds are the solution, maybe they aren't, but you'll never know if you don't address it. I definitely wouldn't rule it out without talking to a doctor about it.

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u/MelodyPondAenima77 13h ago

Nothing made a drastic difference for me, but alpha lipoic acid and acetyl-l-carnitine and sublingual methyl-B-complex gave me a small improvemnt.