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Does this sound like Long Covid?
For about five years now, my husband has had crushing fatigue, where he’ll wake up refreshed, but then he’ll need a nap an hour or two later and then take a second nap in the afternoon, and still sleep 11 to 12 hours at night. He doesn’t seem to have post exertional malaise. He also had chest pain and shortness of breath. Those last two eventually went away, but were replaced by dizziness and brain fog about two or three years ago. Then about a year ago he developed a slight hand tremor. His PCP referred him to a movement disorders neurologist. The skin biopsy test for Parkinson’s was negative and his hand tremor is not like the usual Parkinson’s tremor. The neurologist never mentioned Long Covid but that’s what I’m starting to think this is.
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@bentstiks2, I, too, was a Type A go-getter like your husband, then came Long Covid in early 2021. After 4-1/2 years of various doctors and finally treatment at a Long Covid clinic, I saw improvements in everything except brain fog, memory loss and anxiety. They tested me for the biomarker for Alzheimer's and I was positive. With an extensive family history of dementia, I wasn't surprised. I was tested twice this year and am negative, but was told symptoms of brain fog/memory loss and early dementia/Alzheimer's are similar. My anxiety symptoms are exactly those of CFS/PEM. I now see my neurologist every 6 months for review and though I don't have dementia, am taking Aricept for brain fog and memory loss. It has been noticably helpful. Perhaps biomarker testing would confirm or deny your suspicion of dementia with your husband. The most frustrating thing for me after 5-1/2 years of Long Covid has been not knowing what's wrong and how to treat it. I've learned more from Google, YouTube, and this forum than from my doctors. Wishing you the best for resolving your husband's issues. It's a struggle, but many of us are right there with you.
@lcat70 I wonder how much stress contributes to this. Being Type A in the U.S, these days can generate a great deal of stress. And when you write brain fog, do you mean forgetting things or not being able to think?
@lcat70
What was it that you were tested for twice this year and it was negative?
Isn’t a person only tested once for the Alzheimer’s biomarker? I don’t see how it would change.
@sjde53 Sorry I wasn’t clear. I was tested twice for Alzheimer’s after learning I had the Alzheimer’s biomarker. Those tests were negative. After learning I had the biomarker, I feared my symptoms of brain fog and memory loss were due to Alzheimer’s and not to Long Covid. So far that’s not the case.
Isn’t the biomarker a blood test and the only test? Looks for tau and amyloid protein.
Or when you were tested twice again, did you mean the cognitive test?
@nova11723 Yes, stress does contribute to my brain fog, and the brain fog gets worse when stress increases. I'm retired, but being Type A doesn't stop when the job stops. My brain fog symptoms can include forgetfulness, inability to think straight, concentrate, stay on task, and multitask, losing train of thought, getting rattled easily, loss of words, and difficulty communicating (I know what I want to say but can'tget it out). When I first knew something was wrong (which turned out to be Long Covid), I put a lot of pressure on myself to power on through and keep going. I quickly learned that makes things worse and am easier on myself these days.
My husband, I don’t believe. has POTS but I found this while researching-
“Not all people with long COVID have Postural Orthostatic Tachycardia Syndrome (POTS).
Studies show that POTS affects roughly 30% of highly symptomatic long COVID patients, meaning the majority do not have POTS.
Long COVID and POTS share overlapping signs like severe fatigue, brain fog, and dizziness, which can make them hard to tell apart without formal testing. “
I also found this-
“ Surveys and studies show that a large majority—often estimated between 58% and nearly 90% of people with Long COVID—experience PEM.
Not universal
Overlap with ME/CFS: Roughly half of individuals with Long COVID meet the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), where PEM is a mandatory core feature. Those who do not meet ME/CFS criteria may still have fatigue or other long-haul symptoms without experiencing severe PEM.”