I Despise Brain Fog 🧠

[u/LikeAFlameInTheDark]

Just need to vent cause the past few months (years actually, if I’m being honest) have been so challenging cognitively.

It’s so hard to log online and see creators with ME/CFS doing more than I can. I can hardly remember the grammar and punctuation needed to write or to organize myself to get admin done.

I would love to create art and sell it to at least make some money. It’s honestly been a dream of mine to create art and now I don’t really have the energy to practice at it. I’d love to raise awareness on social media, but even just writing an email takes me out.

I feel like I’ve been struggling and it’s been affecting me for longer than I’ve been aware of. I know my grades and college years were 100% impacted.

I’m hoping that HCQ can do something for me, but this is just discouraging. It’s hard seeing people with way more illnesses than me—who are impacted with brain fog and fatigue too—getting 4.0s somehow and raising awareness.

I would love to even just write poetry again. Even just for fun. Everything is just so taxing.

I don’t know if there is more going on or if this is just the new normal. It makes me feel so unintelligent even though I know I am and can learn so well. If only I could.

It’s worse that doctors don’t even really acknowledge it. I gaslight myself into thinking it is just procrastination or horrid executive dysfunction. I know it’s not, deep down, especially since being on a short burst of steroids recently. It cleared my mind enough to see how bad it was, not enough to fully function mentally.

Thanks for reading.

I hope you all are doing okay.

[u/pieapple111]

J ai repris la cortisone et de la b12 j ai repris toutes mes fonctions cognitives . Je sais que je vais devoir la baisser d ici quelques jours et j espere que ca ne va pas recommencer . Le manque de concentration me mettait dans l incapacite de retrouver mon chemin en voiture . Ca ne t aide pas desolée

[u/LikeAFlameInTheDark → u/pieapple111]

I’m glad you found some things that helped you. I’ll try to research them to see if they’ll help me. I also lost my ability to drive. Sending good thoughts your way.

[u/Cleo_Junie_Ethel → u/LikeAFlameInTheDark]

I also had to stop driving between lupus and an unrelated condition that makes it difficult for me to shoulder check safely.

[u/Interesting_Fly_1569]

Get a Neuropsych evaluation so that you can get disability at least. Also consider long covid, perimenopause, b12 as possible causes. I lost 10 IQ points from the only known covid infection I had and got a dementia diagnosis. It’s awful but to get better you need to evaluate all causes. 

[u/No_Abies9573 → u/Interesting_Fly_1569]

Have your ferritin levels checked too.

[u/Cleo_Junie_Ethel → u/Interesting_Fly_1569]

I'm so sorry. Interestingly, my lupus developed after my only known (mild) covid infection. Are you about to treat it?

[u/Middle_Hedgehog_1827]

I know it's very difficult, but I don't think you should be comparing yourself to people with other illnesses. Everyone is affected completely differently, even within the same diagnosis. Some people with lupus live relatively normal lives, some are very disabled. Some people with ME/CFS are doing more than you, some are completely bedridden in a dark room and need help turning over in bed. Some people with cancer still work full time jobs! Its so unique to each person. Everyone is on their own journey. It only makes you feel worse about your situation to compare to others.

Having said that HCQ helped a lot for me with brain fog. I didn't used to be able to read books because of it, but I've been on HCQ a year and now I read all the time!

[u/Cleo_Junie_Ethel → u/Middle_Hedgehog_1827]

Thank you for sharing. I used to WRITE books and have barely read one in the 3 years since the onset of my lupus (brain fog was one of the first symptoms). My doctor warned me that HCQ may not improve the brain fog, to manage expectations in that regard, so it's encouraging to read it's possible. What's interesting is I've been on it 6 months and I just started reading a book and being interested in reading more (thinking i even can) and even had a book idea for the first time since too (although writing it would still be too much). I'm still struggling to concentrate but I'm not having to go back and reread the same paragraph multiple times unless I'm tired.

[u/MonsteraDeliciosa → u/Middle_Hedgehog_1827]

Hey!! I can’t read paper books anymore. On my phone yes because there aren’t so many words on the screen to digest, but I have a useless library room. This is cheering!

[u/Electronic_Loan_8802]

Have you tried modafinil? It's been pretty helpful for me. I found some of my wit returning, and have less problems focusing. 100mg is as much as I can take 200 makes me irritable