Hi again, Shel - a small question (muscle tightening vs. shortening) leading straight into 2 big ones (progression vs. flares, and the mystery of triggers), which has one crucial thing in common....
- so pardon all the details, I hope this is what you were asking for...:
Hello! I’ve heard some of you refer to muscle or tendon shortening or something like that. I feel like my leg muscles are always needing to be stretched out. I also have plantar fasciitis, which we know is connected to the calf muscle. Are they actually getting tighter or shortening?
I'd say both. Lemme see if I can describe the similarity and difference.
The shortening though leads mainly to stiffness and pain above and below joints, after not moving. For most of us that's the morning stiffness after trying to "get up", whilst for me it's after every longer time not moving / not stretching.
The tightening is related, but can lead to cramps, inflammation-like pains, thickening.
But plantar fasciitis with calf muscles shortening because the toes are dropping at night may seem to be similar to the shortening leading to stiffness/tendon pain, but that's where it ends, it's a different mechanism causing pain in a different place.
Well yes:
Self-tests... I found the pseudo-joint connection out by moving my limbs, whilst putting my fingers on the joint, then above and below, and only then did it dawn on me that it's not the joints. Then I remembered the rheum. who diagnosed me saying and writing she preferred the name "polyinsertionstendomyopathy" to "fibromyalgia", saying it was more correct.
Well, even if we take fibro-my-algia in the literal sense that is not true in my experience - the insertion points of my tendons do hurt, yes, but my severe muscle Ache is a much bigger problem. And this is completely ignoring the fact that "fibromyalgia" ("syndrome") is a lot more than that. But her monster of a word does point in an interesting direction. Just it's hardly used by anyone else... I have seen it a few times, like a German page using the I think outdated terms Tendomyopathie and Weichteilrheuma, the latter meaning soft tissue rheumatism.... (A term which my wife tried to use a while to try to explain it to others, but has changed now.) Also I have read one or two people similar to me clarifying that fibromyalgia is not a joint problem, but as yet this is not often said on the one hand, on the other I as yet stand uncorrected with this belief - which doesn't mean I'm right, but it feels right, up to now.
Back to (my) self-tests: to see if my muscles are getting
tighter I don't put my fingers on the joints, I put them on the muscles, and they feel pretty hard. This is something a PT can also test. The joint bit is something they can't test, that's something for us to try out ourselves.
So is fibromyalgia progressive? People say flare ups, but do we really know if our flare ups are not really just the progression of things? It’s hard when symptoms come and go and can’t be connected to a trigger. Thank you so much!
I'm not sure if you're connecting this to the tendon/muscle problems. But the same applies to these symptoms as to the rest:
Fibromyalgia as a condition is
definitely not progressive in the real sense of the word, meaning it always gets worse, by itself, and can even be terminal: it doesn't and can't.
However our symptoms can
worsen (or seem to) for a great many reasons:
1) 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.)
2) 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")
We call a - relative -
worsening "flare up", exactly because that's what the symptoms do, they flare up and then usually down again. As you say symptoms come
and go...
It's
irritating that when we can't connect symptoms to a certain trigger, it makes for a certain amount of mystery, but it is clear that "what goes up will come down", at least on average, and so it's good to try to not despair, but to try to accept this.
I'm not sure how much others will be able to demystify & control their triggers, but as I have mine, that is a great help for me.
But if most of us were not able to learn a certain control of our triggers, then we'd be pretty lost with all this and it would progress.
Apparently we can and it doesn't usually, but that's then the challenge: to "do it ourselves".
All this has is common learning to listen to our bodies.
Something most of us have never been trained to do.
Or rather: A lot of us have been trained not to do.
(In short my "progression" was: waves of Ache building up to a full flare since 2019, doc treatments made it worse, finding out triggers and treatments better and stable, then the jabs triggered a co-morbidity, which I also learnt to de-trigger and treat,
leaving me with much less energy, so less able to be active, but all other symptoms incl. pain, insomnia, IBS definitely there, but also well under control, so with a high quality of life, despite only being able to be active 1 or 2 hours per day.
And if I had been trained to listen to my body rather than ignoring it,
I probably could have avoided the full flare I'll likely never get out of again....)