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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Good days and bad days

fireflymd

Senior Member
Messages
110
Is this how it is for you? I had a couple of weeks recently where I thought I had "turned the corner".

Still a struggle to get out of bed in the mornings, but I could get through an abridged day of work and wasn't so debilitatingly fatigued that I did not feel suicidal.

I thought this was "livable". No real life--could not go out shopping, or to dinner after work, etc, but livable. I though perhaps all my antibiotics, antifungal, antivirals and numerous supplements had finally kicked in.

Then since the start of this week I have started to decline again. I could barely get through work yesterday and today could not get out of bed until later due to feeling shaky and trembling.

Do others experience this as well? The waxing and waning of symptoms?
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Is this how it is for you? I had a couple of weeks recently where I thought I had "turned the corner".

Still a struggle to get out of bed in the mornings, but I could get through an abridged day of work and wasn't so debilitatingly fatigued that I did not feel suicidal.

I thought this was "livable". No real life--could not go out shopping, or to dinner after work, etc, but livable. I though perhaps all my antibiotics, antifungal, antivirals and numerous supplements had finally kicked in.

Then since the start of this week I have started to decline again. I could barely get through work yesterday and today could not get out of bed until later due to feeling shaky and trembling.

Do others experience this as well? The waxing and waning of symptoms?
Sometimes, especially if you don't take care not to overdo things.

But sometimes there just seems to be no predictability, or it worsens after about 2 or 3 years. Sometimes it improves.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Sounds like you are doing to much. I know it sucks to do less, but that is the best way not have such "bad days". Perhaps it is not possible for you to do less? Financial or family obligations?

GG
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Sure, it waxes and wanes: this is a relapsing-remitting illness.

The trick is to not 'use up' your energy the moment you have it. It's hard, especially if you're used to being healthy, but you have to keep in mind that you have a very low 'energy bank account', and if you spend everything in it you'll be overdrawn tomorrow.