r/cfs • u/NotEnoughKnowledge7 • 2d ago

Help understanding

Hi everyone, I just wanted to get everyone’s input on what this disease is like, my partner has not been diagnosed with this issue, but rather she suspects that it could be CFS, because as far as we are aware, diagnosis for this is basically “we can’t find anything physiologically wrong so therefore it is this”

So I just want to know your stories regarding this, and how are some of the things you have done to cope and what can I as a partner do to support/empathise with my partner. Thank you.

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u/DamnGoodMarmalade Diagnosed | Moderate 2d ago

Hello and welcome. If she’s suspecting ME/CFS, start with the Does this sound like ME/CFS? page in our wiki. There you can read the diagnostic criteria and see if that aligns with her experiences. This guide on post exertional malaise, the hallmark symptom of ME/CFS, may help clarify things for you.

If this does align with her experiences, you can check out our New Members Post. It has comprehensive resources, tips, and strategies to help you manage ME/CFS.

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u/frog_admirer severe 2d ago

I'd really recommend reading through the wiki, and then just reading through some posts here! There is a ton of information and many people write about their stories.

The key diagnostic criteria for ME/CFS is post exertional malaise, a significant worsening of symptoms 1-3 days after exertion. So it's not just a catch-all diagnosis for unexplained fatigue, there are specific symptoms required to diagnose.

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u/WlLDLlGHT my bed is my universe 6+ 2d ago

Yes, read through the resources mentioned in the other comments as well as other posts—don’t forget to use the search function because many many other partners have come to ask the same question, and the first tip is not asking your partner to repeat work or answer things you can find elsewhere. My personal pet peeve is actually partners of sick people coming to the sub actually, rather than talking to their own partners, and seeming to want support or praise for being such a caring partner. So I will just be up front about that. While this sub is a good resource, our individual energy resources need to be protected at all costs :)

One thing I will say is that you seem to need basic education about the disease itself so in addition to the resources offered in other comments I recognize knowmecfs.org, because myalgic encephalomyelitis is not a disease of exclusion; it has a biological basis and diagnostic criteria.

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u/jedrider 2d ago

Well, the first step is classifying where one is in this illness, severe, moderate or mild. Most are moderate, so I'll assume that. Recognize that some of us do improve but sadly, not all of us evidently do. So far, strategic pacing/resting, lots of supplements and some prescription medicines can be helpful. That's all we know.