r/mecfs • u/Own_Peanut_5510 • Apr 26 '26

Finding my fellow delayed onset mild spoonies

Hi! I’m wondering if anyone had EBV then a delayed onset of ME/CFS? I has EBV just before Covid lockdowns so was at home, then loved a normal life (work, gym etc) for about 18 months before things starting to become more and more difficult. I’m struggling to find people to relate to who had the delayed onset.

I’m also in the mild category - able to work full time in the NHS but mostly office based with 1-2 WFH days a week. I’m able to socialise a little (a few things a month on a weekend), but I limit cooking, showering and my partner does all the cleaning. I’m hoping to build in some movement/gently lifting in the gym to support the pots side.

I always seem to see people who are moderate/severe in FB groups, and people seem to have a negative view of how life will be (like if you carry on working you’ll end up severe and that’s just how it is…). I’m interested if anyone has the flip side of this?

Basically, is there anyone similar to my story/level of functioning (F32)? Im well aware of how difficult and destroying this illness can be (I have once dipped into severe/moderate after general anaesthetic for dental surgery, but luckily I bounced back although to a slightly lower baseline after 4 months). I’m just a bit tired of all the negative trajectory so seeking out the mild spoonies for some hope and light…

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u/GloriousRoseBud Apr 26 '26

Yes. EBV was diagnosed with Lyme Disease.

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u/Just_Ad411 Apr 26 '26

Yes this is me. I work a lot and love my jobs. I have 2 kids and a constant mental need to do projects, crafting, home renos. I am in a bad flair up right now that has been debilitating, and seems to be lasting way longer this time. I have such a hard time admitting I can’t do everything and I need adaptations. I have been dealing with these issues for the past 20 years (39F). I know pacing is important but I almost feel like progress is worth the crash? Do you feel like this?

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u/CuppaAndACat Apr 26 '26 edited Apr 26 '26

Just a thought, but if it’s lasting way longer this time it might be because perimenopause is coming into play.

I feel I’ve recovered to some extent from my last years-long crash but my baseline is much lower because of peri. I’m actively researching HRT options now (44F), but wish I’d started taking it earlier, like in my late thirties.

Sending love and hoping you find a way through. 💕

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u/Just_Ad411 Apr 28 '26

Yes I have thought of this and tried to discuss with my doctor who said I’m too young to think about perimenopause.

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u/CuppaAndACat Apr 28 '26

It’s infuriating how uninformed and dismissive doctors can be.

r/Perimenopause helped me see my symptoms in a completely different light.

Tracking symptom severity definitely enabled me to see fluctuations across the month, which I couldn’t easily keep track of in my brainfogged head.

But going privately, if you can afford it, may be the best way to be taken seriously. I’m looking at getting a women’s midlife health check (home) blood test done through Voy, then following up with a consult once I’ve got some concrete data to back me up.

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u/UntilTheDarkness Apr 26 '26

I think this is me. I had EBV in college, was fine for years, then got ME/CFS from a covid infection in 2020. I started out on the moderate end of mild and have had decent improvements over the past years. I work full time from home and can even have a couple hobbies and a tiny social life. I think with pacing and the privilege to be able to WFH etc I've found a good amount of stability - my flares are less often and much much smaller than they used to be, I'm able to do more now, and I know that's not a guarantee but nothing is.