Hello!
I was diagnosed with CSS a number of years ago for primarily chronic fatigue. I was able to mysteriously recover when I stopped eating gluten. One pandemic and 50 lbs weight gain later, the fatigue has returned, along with a significant amount of pain, burning skin, etc.
I have a theory that losing the excess weight might help with the pain, but I'm at a loss about how to do that when overexertion makes the pain/fatigue worse (and typically sets in after about 2 hours of being out in the world, without doing any sort of exercise). I'm afraid to cut calories too much and worsen my fatigue, and I really struggle to find the energy to cook meals regularly or track what I'm eating with any consistency.
I've been embracing pre-made foods (like pre-cut veggies, frozen kale, "healthy" frozen meals, protein drinks, etc.) , but wondering if there's something else folks have tried successfully? Or any habits/approaches that have allowed you to lose weight healthfully without aggravating symptoms?
Ideally I'd like to set up a consistent routine of some kind...
Thanks in advance!
Hi Kris - some thoughts / ideas...
Interesting that gluten free helped, but not that mysterious, whether directly via gluten, which some people have, or via a healthier diet.
Even more interesting - and also prap self-inspiring?: You were able to do gluten free despite your fatigue - are you now, can you?
More mysterious for me personally is the pandemic leading to weight gain - as I can do so many types of exercise at home/alone. And you?
Interesting you should mention burning skin - whilst mine has always itched, being dry, my histaminey-jab-reaction/MCAS makes it burn even more - increasing GABA, decreasing histamine in food and adding an antihistamine has helped.
I'd thoroughly agree that losing weight doesn't just improve general health, it can help with the pain and especially the fatigue.
The main motto for keeping moving without overexerting/overdoing is keeping to the sweet spots. And that may be seconds.
Being able to be out 2 hours without doing any sort of exercise is absolutely brilliant - I can seldom manage that.
But I do several hours of exercise every day - just in stints of minutes, some things for 1 minute, others for 10, I'm managing to increase certain stretches like sitting cross-legged for up to 20 minutes.
Making it a habit to do something whilst I'm doing other things, especially waiting for something or eating or resting.
The difference is that I (we?) have much less stamina, whilst we can use energy bursts or at least short stints of exercise.
As a workout I'd recommend the "scientific" 7 minute workout (see youtube videos).
On good days I can get thru it well, on medium days I due a stripped down version, length or intensity.
What I've started of late is the horse stance: Very short, very intense - not good on very fatigued days, but as soon as my energy is up a bit I try 20 to 60 seconds, very refreshing.
I very much doubt cutting calories will intensify fatigue, I think the weight factor far out...weighs that.. as well as eating healthy.
Some people cook more and then freeze...
What I do is concentrate on raw veggies - I'm lucky that I love the taste.
I've had to change my diet for several reasons and have ended up there. For calories I eat nuts, which I also love, as I don't eat meat.
One of my "staple diets" is Mediterranean, also healthy, also recommended by studies for FM as well as the lipids I strated it for.
If your pre-made foods are unprocessed and without additives I wouldn't see a problem with them.
For healthy diet unprocessed foods is one of the big ones.
It's even actually essentially at the bottom of things like the "low carb diet".
My habit/approach is to only have the "right" foods at home,
to look for new things I love, like first fearing to eat sweet potatoes or broccoli raw and then realizing that there's absolutely nothing wrong with that and then so much acquiring the taste that I love starting meals that way
(chicory first is sposed to be best, so that's the bitter start).
In the mornings gluten free muesli.
And I start the other meals with the raw food and only add cooked foot to fill up.
I now have to cook freshly more often to keep histamines down, but I keep it simple:
One veg which is quick to prepare, e.g. broccoli, and either wholemeal rice or potatoes,
To get into new routines fast (actually: usually immediately) I do do a lot of "tracking", I admit, by writing everything on my blog.
But if something is stubborn, I cut thru the fog (whether ADHD / brain / pain / fatigue or whatever)
by using tokens/rewards - "a game" ;-) (as
@squishpunk inspired
here).
Just counting the amount of minutes I have done "self-physio" motivates me.
I have a list of 40, of which 30+ are physio, some just "self-care".
To motivate me to do them I pick out and prioritize those I want to do next, so I focus on that.
To decrease pain & fatigue and to increase strength I also use breathing exercises, especially Wim Hof's, but also just deep breathing, or breathing alternately out and in thru each nostril for a time. (And cold showering.)
Any ideas here for you?
And for taking care of this wonderful space/resource for all of us!
