Strange Symptoms

If you have any of these symptoms or other symptoms that are confusing or curious or make you think “is this something other folx with ME have?”, feel free to share about it with us via email or social media or in the comments of videos. I’ll do my best to keep track of “strange symptoms” here and try to update regularly as more people write in. We’ll also try to read messages in podcasts.

visual memory

In our first check in with listeners about “strange symptoms” I (Dov) mentioned that since I’ve had ME I can no longer access visual memory except very vaguely. Most of the time my mind just feels like dark empty space. I know I must in some way have access to visual memory because I have memories and I can describe things. But it’s not something I can “see.” I’ve heard from a few other people who have similar symptoms.

One person, I can’t find the message (working on organization) said they do have an absence of visual memory, but have had ME as long as they can remember, so they can’t say that something changed after getting ME.

And Christina writes, “I used to remember things visually, like what the building looks like what colour it’s got et cetera but now I cannot. I find it extremely difficult putting names to faces as well.” Christina has a neurologist appointment coming up. She asks if anyone has suggestions, things that have helped them. We’re very wary here at PEMpd of having any kind of medical suggestions , but I recommend asking on social media sites using the No End In Sight (excellent podcast by Brianne Benness) hashtag #NEISvoid. I’m not sure what’s happening with Twitter because eek (used to be a place where people used this hashtag a lot) but you could try there or on Instagram or Mastodon…

Burning Skin

Christina talks also about burning skin. “Burning skin ,feeling like sunburn. more prominent on the arms, but all over the body.”

I don’t get burning skin much (occasionally on my face), but I do sometimes have this strange feeling that the sun is on my face when it is very much not, a sensation of light and heat. It’s disconcerting, but not painful. And I get skin aches sometimes, where some patch of skin feels both burnt and bruised. It’s painful and uncomfortable both.

Peeing situations

Christina also talks about having to pee and not being able to or having to push really hard to pee.

I definitely have the feeling of pressure like I have to pee quite often and then when I try to pee there is very little pee happening. (I know I read somewhere that ME negatively affects muscles in the bladder but I don’t remember where and don’t know if it’s true.)

Spiders

Lisa: Does anyone else get spiders? When I’m crashing I get small visual disturbances like I just caught sight of a spider out of the corner of my eye. Find myself looking round at things to see what moved when nothing did. #MEAwarenessHour #weirdsymptoms #MECFS #LongCovid

Numbness

Josefine: My weird symptom is i get sporadic numbness in my body. It can often start with feeling pain in my neck, wrist or leg where the artery is for an entire day, then it suddenly stops and is followed by complete numbness in the area where the pain was. Doctor is of course like "idk" so I assume it's just the ME :')

Tiny Lumps in Abdomen

In Episode 5 Kirstie shares: When I have over-exerted myself or eaten something that triggers inflammation I get tiny lumps that appear in my abdomen under my skin. I think it’s lymph node activation but not sure. Had it early onset and now after my more severe relapse after the AZ jab in 2021. Comes and goes. Feels like gristle and sometimes can be painful and coincide with rib pain.