Central Sensitization - please share your stories

I have long covid and seeing Nattokinas might help any studies I could get in to

i was diagnosed a few years ago and i 100% agree and understand now what's happening to me. i am in process of setting up neurology appointments with MAYO to confirm but i already know. i have had several back injuries in the past 20 years and one day i merely stepped off the curb and it felt like i was hit by lightning and fell prostate into the street where i was thankfully gathered up and taken to the ER. After seeing several terrible run of the mill pill pushing primaries i went to the Anoka pain clinic and thankfully i found a doctor who hit the nail on the head. My doctor suffers from parkinson and i think the illuminating factor was when she very lightly touched me and my whole body locked up. She described it to me as my CNS being STUCK in FIGHT OR FLIGHT mode. i have been denied disability 5 times now yet i can not make it to the back of the grocery store without having to stop walking due to the pain and have not gotten a full nights sleep in years.

will update after appointment with mayo

I have had CSS since around 2012-2013 though it was a couple of years before the pain started.

The first signs were moments when I'd feel like someone had taken the batteries out of me, especially of an evening. Then I had what looked like a stroke during a high pressure meeting at work, brain scans followed and a stroke/mini-stroke ruled out. I later found these to be regular events, starting with vision problems. Now if I can get to a comfy place for a lie-down or sit down and close my eyes for a while it passes without stroke symptoms.

And that's the lesson with CSS, it's a giant puzzle. Sometimes it's two steps forward and one back, sometimes you find something that reduces the symptoms and stops the brain getting into a feedback loop with the pain/sensory overload. Unfortunately sometimes there's no way of reducing symptoms. I have a lot of pain now but I'm getting pretty good at knowing my limits. My biggest issue at the moment is adrenal dysfunction which triggers panic for no reason or elevated panic at stressful times. It's just like the pain, sometimes there's no logic, sometimes it makes sense but it shouldn't feel that bad. Sadly, the secondary health issues can also be a burden. With anxiety came colitis and hyper-tension.

It's a struggle to hold down a career or get a new job when every vacancy says "Must be able to cope under pressure". I've got a great CV, but I can't work under too much pressure. I'm very lucky though, my current employer has agreed to pay me sick leave for 2 years as it was a work thing that triggered the adrenal overload in the first place, with a little help from CSS.

Keep on keeping on. It does get easier, treat every improvement as a really big achievement. Be kind to yourself.

@lorirenee1
I re-read this post today. I agree 100%!
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