This is often discussed, because “progressive” is misunderstood.
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Yes, worsening often happens, but:
Whilst it may seem to get worse for some, it doesn’t seem so generally…
There are many reasons for worsening, and these don’t mean it’s progressive or degenerative in the technical / medical / biological sense. Let alone steadily progressive. Let alone terminal (death).
We (incl. docs) tend to blame fibro for symptoms we can’t explain otherwise. Same here for the apparent worsening. -
Worsening of symptoms and quality of life can be related to fibro :
a) lack of correct treatments, their side effects, esp. with delayed diagnosis,
b) lack of activity with muscle atrophy and weight gain (healthy diet; adjusted amount of activity),
c) lack of healthy lifestyle
d) pushing through = lack of pacing, sometimes hits weeks or months later.
e) chronic symptoms may take some toll with time - depression, fibro fog(?)
Improving these can improve symptoms, i.e. they influence both ways. -
Worsening of symptoms can be unrelated to fibro :
a) aging (aches & pains, stamina, sleep etc.)
b) added co-morbidities (possibly unidentified)(& whether ‘secondary’ or ‘primary’),
c) added worsening problems like depression, anxiety, insomnia,
d) worsening life circumstances,
e) which can all also influence diet / weight & activity etc.
f) Build-up before fibro becomes fully fledged.
g) Longer term flares from unidentified triggers.
Plus: Typical, natural misperception problem: “Things aren’t what they used to be” … (“The grass … used to be … greener”).
My examples for the last one:
Plus: For a year my wife catastrophised about my FM worsening and me needing a wheelchair, chair lift, bungalow soon, bad for her mood, I held against with many examples, past & present.
Plus: I sometimes believe nothing I’m doing is helping much. Then sometimes changes or I stop something and quickly realize it is helping and after it getting worse I enjoy it getting better again…
1g & Plus: She thought Chinese acupuncture was worsening FM & MCAS, like Western acupuncture did, so I continually fill in a long-term grid from my blog showing it is actually helping (if I get a tighter grip on my sleep).
Semantically most correct might be just stick to: "My symptoms appear to be getting worse all the time (whether fibro is progressive or not)." But we also do well to let each other ignore semantics to a certain extent when we let off steam … “;-)” Best not to correct someone saying “You’re really getting up my nerves…” ;-D. So we need to strike the balance between letting off steam and correct semantics.
Threads here with this topic in the title are: