u/PastelPost

My memory was never good due to ADHD but it started noticeably declining since 2012, when I was diagnosed with fibro and started taking medication, but this year it has started rapidly deteriorating.

I always thought the poor memory was due to the medications I’m on, burnout, or fibro fog but I don’t think it should be this bad…

For example, my word recall is frustratingly unreliable, in both languages I speak. I would be speaking and suddenly forget which word I need; and I’d just give up on continuing to talk.

I’m using more and more filler words nowadays.

I used to be able to memorise an advanced piano piece in a week’s worth of practice but eventually I couldn’t even memorise a children’s piece.

I have seemingly forgotten basic reading skills. When I’m reading, I can’t remember the previous sentence I read, so I’m always going back to reread. My working memory is completely destroyed. Sometimes I can’t comprehend what I am reading. I will know how each word sounds in my head but the string of words together makes no sense to me. I am still fluent in reading, I have a vocabulary, but I have no comprehension.

I’m easily confused too. I have these rare episodes where I forget the people in my life or where I am (I’m home). It extremely frightening. My support person will help me get reoriented.

None of my doctors know what is causing the memory issues and blame it on fibromyalgia. Almost every new problem I have is being blamed on fibro. I keep feeling like it’s a lazy diagnosis…

Would appreciate everyone’s input and also your tips on how to keep your mind sharp （╹◡╹）♡

TLDR: Longtime AuDHD-related memory issues, worse since 2012 fibro diagnosis, but rapid deterioration this year — word-finding failures, lost ability to memorise musical pieces, impaired reading comprehension despite still being able to decode words, and disorienting episodes of forgetting where I am/who people are. Doctors keep blaming fibro but it feels like a lazy catch-all. Looking for input + tips to stay sharp.

Fibromyalgia is not my only disability but it is the most soul crushing. I’ve had fibromyalgia for over 13 years. It has cost me everything. My health. My family. My friends. My career. My education. My house. My romantic eligibility. My dignity. My ambition.

If there was some gain to be made out of all this, I would be more motivated. But the suffering is seemingly pointless.

I am in my thirties now. My daily routine is to wake up and start pain management. By the afternoon I might have enough capacity to manage my other disabilities and attend doctor appointments if I can walk steadily; otherwise I will need to arrange for a phone or virtual consult. In Australia we have the NDIS which supports people with disabilities, and I am in charge of all the administrative work. It’s a full time job. Usually, family members or loved ones help in doing this work, but my situation is different.

What still drives you? What keeps you sane? What still brings you joy?