Extreme heat sets off my cfs. I have an ac in my room, but not anything effective throughout my apartment so it still affects me a lot. I'm better staying home than going out, but it is 90 degrees in my kitchen. Not sure if I'm making it up in my head, but I feel so exhausted everytime I leave my room.
Not officially diagnosed, but I fit the criteria and even several extras. Also have dysautonomia and working on an MCAS diagnosis. Two things make me hesitant or at least wonder if I have some give for slowly building back up again.
My PEM threshold seems to shift. Two years ago, I could do 10 minutes of any level of cardio and still not crash (If it was more than 10 minutes that's when I would crash). Now I can barely do five minutes of slightly elevated heart rate without crashing.
Exercise actually feels incredibly good while I am doing it. On many occasions I push past thinking I can do just a bit more because I feel so much better than even my normal baseline, but then it always catches up to me.
Exercise feeling good is what seems to not jive with a lot of people's experiences. Wondering if that might be mean I have opportunity for increasing my threshold. Has anyone increased their threshold?
Still hopeful, but be blunt if you must.
This was probably one of the biggest breakthroughs for me when it comes to MCAS. That the more stressors you have on your body at any given time, the more likely you are to be sensitive to things you might otherwise tolerate.
For example, I have such a hard time with foods (for others it's smells, etc). I went on a low Fodmap diet and it took me an entire year to get back to eating normal because the more I cut out the more I would react to things when I tried eating them again. Like many people here, I was eating chicken and rice.
Even after I was able to eat more than that, my flares would happen so often that it seemed like I was doomed to eat chicken and rice forever (but really couldn't because I would go insane).
The frustrating part was I could eat something (an apple for example) and be fine. I could eat that same apple every day for a week with zero problems. But then one day it would trigger a flare and I would be totally thrown off. What did I do wrong?
It wasn't until I started using a digital thought sorter to turn my daily journaling into something useful that I stared making progress. It noticed that I was less likely to flare when I got a good night's sleep. Or when I ate less sugar. Or when I stayed out of extreme temperatures. Or when I didn't have a very active day physically. Or when I ate salt and got massages. (I also have dysautonomia and PEM). Or when it wasn't about a week before my period, during my period, or during ovulation (this is the one that sucks the most because that is like half the month).
My point is it found my patterns so I could do something about them. So I worked on my sleep. I worked on staying out of extreme temperatures. I went to my gynecologist to see what could be done for regulating hormones.
I just started Cromolyn sodium, but I think I did this in the right order. I suspect you need to stop overloading your system with stressors to make sure the treatment doesn't add to the stressor and actually has a chance to work. I am doing great with Cromolyn so far (started out tiny, but going to increase soon) and I suspect that is because my system isn't overloaded by everything else as much. I normally have a VERY hard time with new medications. Every time I start a new one, I spend a few months in bed absolutely exhausted waiting to see if the exhaustion is my normal experience with the med or if it will wear off. And it could just be that Cromolyn is mild or whatever, but even before the Cromolyn, I was having way less flares and starting to make sense of things.
Just my experience, but I hope this can help someone else notice the pattern before you go insane like I was.
Edit: I think this discussion has made me realize people do talk about sleep, stress, diet, hormones, etc. What I don’t think gets communicated well is WHY THEY MATTER.
For years, “sleep better, eat better, exercise, reduce stress” sounded exactly like the generic advice chronically ill people get from people who don’t understand their illness. I had so much cognitive dissonance around it that I mostly tuned it out.
What finally clicked for me wasn’t that those things “make you healthier.” It was realizing they all seem to contribute to the same overall load on my body. When that load is low, I can tolerate foods and medications that would otherwise cause problems. When it’s high, something completely random (like an apple I’ve eaten every day for a week) can be the thing that pushes me into a flare.
That shift completely changed how I approached managing my MCAS. Instead of obsessing over finding the one “bad” food, I started looking for all the little things that were filling my bucket. The food wasn’t always the cause. It was sometimes just the straw that broke the camels back.
I’m not saying this is true for everyone, just that recognizing this pattern has been one of the biggest breakthroughs in understanding my own symptoms.
So far I am cautiously optimistic about cromolyn sodium.
Some background:
Chronic fatigue, PEM, dysautonomia, brain-fog, muscular pain, hormone related flares, and GI issues that include nausea, bloating, stomach grumbling, upper stomach fullness, cramping, and my GI tract doing speed runs.
Started with 1 vial (half the dose my doctor prescribed) and am monitoring how I do for the first week.
Observations:
* I'm having a lot of BMs (5 in 24 hours). Not urgent. Just more.
* Nausea (typical for me) I decreased from 8oz to 4oz of water and that helped. And less nausea today than yesterday.
* Cramping (BUT noticeably more mild than a flare)
It feels like my digestive tract is sort of rearranging itself. Which I hope is a good thing. At one point I was nauseous, my stomach did some grumbling and I felt a bit better after that.
Curious if anyone else experienced anything similar.
I am not bed ridden, but I sit/lay A LOT. I have pain that seems to be me clenching my muscles (especially during an MCAS flare). Sometimes a day sitting/laying can be more exhausting than if I had gone for a walk or something. I'm trying to figure out that balance.
Part of that pain, I think is because of how I sit or lay. I am neurodivergent (ADHD) and I don't think I have EDS. When I am home the last thing I want to do is sit in my desk chair. If I do I tuck my legs up. If I hang out in bed and sit in bed my hips and legs get super sore and tight. I hate my couch. It is not comfy. I sit on the floor sometimes too.
Nothing feels comfortable. Even laying flat on my back in my bed and my quads stretch and ache. Does anyone else experience this? How do you make yourself comfortable?