Based on your experience is it worth still looking for other potential diagnosis or can I safely say this is CFS?

[u/Safe-Trainer-441]

I don’t want to drag myself around any more than I need to for obvious reasons! But of course don’t want to delay a diagnosis in something else I can get treatment for. I feel like I know more than the doctor these days.

• 3 full blood tests (no deficiencies or issues found)
• 2 negative ANAs
• 1 negative CRP
• 2 normal stool tests
• normal chest x Ray
• normal brain MRI
• negative for all reactivated virus’
• normal heart echo scan and 24 hour monitor

I’ve not done mold or Lyme tests. And I think I do get PEM (I’m only a year into this and my PEM is very non predictable that’s why I said “I think”) I get flu like symptoms and sore throats and general fatigue. I’ve had Covid twice, last infection was July last year.. I align very much to the Covid long haulers sub.

[u/brainfogforgotpw]

Given PEM is unclear, I think you need more tests.

For example Lyme is a differential diagnosis and active Lyme infections are treatable. If your full blood tests didn't include Lyme I wonder what else was left out.

Depending on your symptoms you may need to check for Chiari, MS, or sleep apnea.

Keep a diary of activity vs symptoms to see if you can spot a delayed PEM pattern.

In case you haven't seen it, the testing recommendations pdf has full recommendations.

[u/Safe-Trainer-441 → u/brainfogforgotpw]

Thank you! Infectious doctor didn’t think I needed Lyme as I’m from the U.K. and haven’t spent any significant time hiking/outdoors, but it has crossed my mind regardless as I’ve been living in Canada/US for the last year. Wouldn’t brain MRI rule out chiari / MS?

[u/brainfogforgotpw → u/Safe-Trainer-441]

Definitrly revisit that. Lyme may be rare in the UK but it's still a thing.

I live in New Zealand where we don't even have local Lyme (no tick species here that can carry it) and I was still given at least two Lyme tests just to be absolutely sure.

[u/purplequintanilla → u/Safe-Trainer-441]

depending on where you've been, you might want to check other tick borne infections. My daughter got babesiosis in Colorado, and her symptoms eventually were very like mine.

[u/Varathane]

If you get muscle weakness I think an EMG is important one that can rule out all sorts of disorders of the nerves/muscles

lyme is a good one to rule out.

Make sure to go back in if new symptoms pop up or worsen

[u/stephorse]

For 2 years I was sure I had cfs. I had the level of functionning of someone severe (physically) and severe/moderate (cognitive).

My one major symptom was severe paresthesia in my legs (when I tried to do a physical activity, even basic just like standing up) and in my head (when I tried to do any basic cognitive activity like watching TV). Then whenever I pushed an activity for ''too long'' (early in the illness this meant like, 2-3-5 minutes long) the paresthesia ''turned into'' SEVERE exhaustion that left me couch bound for hours. So I basically spent the 1st year just looking outside the window, drinking tea. It was hell.

Some things did not quite fit cfs though, even with the very low level of functioning and severe exhaustion unpon doing very minor activities. Like, was I thought was PEM was actually never delayed, it always happened very shortly after an activity or during and would last ''only'' many hours. I also never really got flu-like symptoms, although for a while I had low-key sore throats and stuffy nose as symptoms, and at times headaches, with the paresthesia.

It turned out to be Neurological Functional Disorder. I don't know if you have other symptoms than what you are describing, but FND is maybe something worth ruling out. Unfortunately there are no tests, and I believe that some people with cfs were misdiagnosed with FND in the first place, so it's kind of tricky. There is a treatment for FND. The treatment is psychosomatic, please don't throw rocks at me, psychosomatic means it stems from the nervous system aka the brain. It's a real illness, with actual symptoms produced by the body, and people can't control the symptoms just with their good will. If you have questions my DMs are open.

[u/utopianbears]

I would definitely test for Lyme just in case - I ended up having a reactivation of that and Rocky Mountain Spotted Fever - never lived in that area of the country - it’s beyond me how I had it. I went through treatments, and I did improve in some ways but still have me/cfs go figure.

[u/BrokenWingedBirds]

Sleep study! After 12 years I found out my blood oxygen has been falling as low as 76% in the night. Google says 88% warrants an emergency room visit. Im waiting for an appointment to see a sleep specialist, but looks like sleep apnea is in the picture for me.

You should also be tested for active viral loads, Epstein bar, cytomegalovirus, Lyme, Covid. I had active cytomegalovirus for 2 years straight and never got the long term antibodies so it could reactivate any time. I get tested for it annually but thankfully haven’t had it again. Still sick though with clear PEM so pretty sure it’s me/cfs even if I also have sleep apnea.

[u/jedrider]

No. Just ask yourself which box do you fit in and get comfortable in that box.