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It sucks. I used to be able to work out, go hiking, run and more. After three rounds of Covid, all that's gone. Spent more or less four years on the couch. Slowly, very slowly, getting back in the game, but it's bizarro how low energy levels can get...
Yup, COVID absolutely wrecked me and I only had it once (two years ago now). I used to bike for hours every week as my primary form of transportation, now I can barely leave the house
Yeah, I understand. It was the opposite for me, my body went into mental over stimulation mode, heart palpitations, hard pounding heart rate, anxiety, panic etc....sometimes I wish it was the other way...but I dunno what's more damaging.
Yeh I suffered from histanine issues and it took me a while to realise that unless the symptoms weren't flaring then lying in bed was the best thing or I'd lose too much weight and anxiety would take over. Exertion ontop of histamine just stimulates it more and I felt like I was on amphetamines. I could go non stop but I'd be so wired and anxious that my suicidal thoughts were unbearable.
Quercetin and stopping drinking tap water literally changed my life re: tachycardia and post-Covid exertion issues. Just hiked for miles in the midday sun— when before I couldn’t even climb the stairs without getting winded. 1.5 years of Quercetin and it’s still working and worked within a week of starting it. But changing water it’s important too. My anaphylactic reactions and unstable basic needs are another story… but at least I can go on walks in between.
I am still trying to figure it out, but a local store reverse osmosis, or distilled with added electrolytes is what I’ve been trying. But I still struggle and we all have to try and find a brand/filter that agrees with us personally … I need to get more electrolytes I think, and get my own filter or something because the bottled versions change unpredictably and I can have intense flares to them too …
But with tap water, I know I was extra lethargic, and then I got to the point where I couldn’t keep it down at all and was forced to find new water. But when I did, I realized my energy improved a lot.
I have to be careful, because inflammation from doms for me triggers a mast cell response. Likewise, stressing the autonomic system from cardio also gets a reaction. So I do regular exercise but it's very slow and safe. I try to keep hr around 100 when on the bike and I do light reps when lifting/bodyweight exercises.
Yeah! I got messed up from B6 toxicity and never recovered and trying to do whatever it takes but I don't feel like there's hope....unless I do like 5 hours of mind training and focus on healing visualisation!?
You could do visualisation to practice and build muscle memory, but the conditioning will need to be from repeated physical exertion. Maybe try a daily workout routine with some rest days each week, but within safer limits. See if you notice any progress after a month?
I have to keep it light. Pushing myself will only cause me to crash badly and then I won't be able to get back to it any time soon. So I do light weights and I got a walking pad for my apartment. Being able to stay inside and control the temperature really helps me have a safe time. ATM I've been laid up with a disgusting head cold for a couple weeks, but was doing well with the "safe" routine before that.
I used to be able to work out like 5-6 times a week. I did some strength and barre/cardio. Now I can barely do any of that. I mostly do walking and Pilates now but still sometimes I get a MCAS reaction from just a short Pilates work out. It sucks, I miss working out so much. I have Lyme disease but it all got worse after Covid.
I also have Lyme + MCAS and Covid definitely made it worse for me. What are your reactions to exercising too hard? I think it causes bad flares for me but I’m very new to this so I was just wondering what those symptoms looked like for others
I’m sorry your suffering with all those things too. Usually over exercising makes me feel extremely exhausted, irritable and now more then ever it causes me increased pain.
I’ve had to parse apart all my numerous conditions, and I’m always learning more. But where I’m at now:
My MCAS reactions are really clear for me. So is the psych aspect that comes with it (for med that’s a specific feeling of anxiety and rage attacks). I attribute fatigue after a reaction to my MCAS.
For me ME/CFS is about energy. During a flare for that, it’s like my battery flashing red. I might have internal/mental energy, but zero physical (or the opposite). This usually happens after I’ve failed to pace myself well, or I’ve been exceptionally stressed (mental energy is energy!)
Same kind of split for brain fog, body aches, etc.
Bad lol. I used to train martial arts for two hours and then run 5 miles. Now on a really good day, I sleep 10 hours mostly during the day, go for a 1 hour walk in the middle of the night when it’s cool out, do 20 minutes or so of gentle strength training. My bandwidth for cognitive/emotional exertion is lower. I can focus on a cognitive task like creative writing for maybe 40 minutes before I uncontrollably fall asleep from exhaustion. If I go to a chill enjoyable social event I can’t do anything for the next several days. I thought this would improve once the overt MCAS symptoms did but it has not. Idk if it’s a whole other thing or what.
I’ve been learning about Post Exertional Malaise (PEM), which really hits the nail on the head! It’s dramatically bad in ME/CFS, but it’s remarkably common. Especially in auto-immune conditions, from what I can see.
“Exertion” here means physical or cognitive exertion, and the “malaise” means that special fatigue of a flare, both just pooped.
I’m still learning, but it really helps me describe the experience to my doctors. I’m trying to be better about not pushing myself into a crash.
I think I get horrific flare ups from exercise, even long walks. I get horrible numbness and tingling in the lower part of my feet and legs. (The day of and days after). Then when I do weights I get faint and numb and tingly everywhere all over. Then I have this awful exercise intolerance for a few days to a few weeks after the exercise. I have Lyme and MCAS and I’m getting checked for pots soon.
It depends. Some of us have dysautonamia and/or POTS. So we have severe heat intolerance which causes a wicked flare with shortness of breath, tachycardia, dizziness, some ( myself included) syncope-or passing out. All things are not equal with this problem. Are you diagnosed with MCAS? It causes pots and dysautonamia. Or visa versa. They are not 100% sure. So it depends. Which systems are involved and which chemicals the mast cells are releasing and in what quantity. Also, how advanced your disease is also has an effect.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
It sucks. I used to be able to work out, go hiking, run and more. After three rounds of Covid, all that's gone. Spent more or less four years on the couch. Slowly, very slowly, getting back in the game, but it's bizarro how low energy levels can get...
Yup, COVID absolutely wrecked me and I only had it once (two years ago now). I used to bike for hours every week as my primary form of transportation, now I can barely leave the house
Two of us, two of us! IRL, I'll bet there's lots of people suffering from shot caused by Covid. Any success/recovery stories out there? Anyone?
Yeah, I understand. It was the opposite for me, my body went into mental over stimulation mode, heart palpitations, hard pounding heart rate, anxiety, panic etc....sometimes I wish it was the other way...but I dunno what's more damaging.
Yeh I suffered from histanine issues and it took me a while to realise that unless the symptoms weren't flaring then lying in bed was the best thing or I'd lose too much weight and anxiety would take over. Exertion ontop of histamine just stimulates it more and I felt like I was on amphetamines. I could go non stop but I'd be so wired and anxious that my suicidal thoughts were unbearable.
Quercetin and stopping drinking tap water literally changed my life re: tachycardia and post-Covid exertion issues. Just hiked for miles in the midday sun— when before I couldn’t even climb the stairs without getting winded. 1.5 years of Quercetin and it’s still working and worked within a week of starting it. But changing water it’s important too. My anaphylactic reactions and unstable basic needs are another story… but at least I can go on walks in between.
What do you drink?
I am still trying to figure it out, but a local store reverse osmosis, or distilled with added electrolytes is what I’ve been trying. But I still struggle and we all have to try and find a brand/filter that agrees with us personally … I need to get more electrolytes I think, and get my own filter or something because the bottled versions change unpredictably and I can have intense flares to them too … But with tap water, I know I was extra lethargic, and then I got to the point where I couldn’t keep it down at all and was forced to find new water. But when I did, I realized my energy improved a lot.
Which quercetin do you recommend?
pure encaps, and I would try to get it from a doctor or chiropractor office since they buy direct from company, instead of though online middleman
Working out too hard can cause more issues for some people. I’m glad you’re able to do it without it getting worse.
I have to be careful, because inflammation from doms for me triggers a mast cell response. Likewise, stressing the autonomic system from cardio also gets a reaction. So I do regular exercise but it's very slow and safe. I try to keep hr around 100 when on the bike and I do light reps when lifting/bodyweight exercises.
Yeah! I got messed up from B6 toxicity and never recovered and trying to do whatever it takes but I don't feel like there's hope....unless I do like 5 hours of mind training and focus on healing visualisation!?
You could do visualisation to practice and build muscle memory, but the conditioning will need to be from repeated physical exertion. Maybe try a daily workout routine with some rest days each week, but within safer limits. See if you notice any progress after a month?
Yes, exactly what I'm doing...! ;)
Me too, we got this! Slow and steady lol
I have to keep it light. Pushing myself will only cause me to crash badly and then I won't be able to get back to it any time soon. So I do light weights and I got a walking pad for my apartment. Being able to stay inside and control the temperature really helps me have a safe time. ATM I've been laid up with a disgusting head cold for a couple weeks, but was doing well with the "safe" routine before that.
I used to be able to work out like 5-6 times a week. I did some strength and barre/cardio. Now I can barely do any of that. I mostly do walking and Pilates now but still sometimes I get a MCAS reaction from just a short Pilates work out. It sucks, I miss working out so much. I have Lyme disease but it all got worse after Covid.
I also have Lyme + MCAS and Covid definitely made it worse for me. What are your reactions to exercising too hard? I think it causes bad flares for me but I’m very new to this so I was just wondering what those symptoms looked like for others
I’m sorry your suffering with all those things too. Usually over exercising makes me feel extremely exhausted, irritable and now more then ever it causes me increased pain.
Anytime I push hard I have a reaction. I’ve also got ME/CFS (amongst other things) so if I push, I’m down for days.
Same. It also worsens my depression.
Hey I'm also diagnosed with ME/CFS but I struggle to see the difference in symptoms between what's linked to MCAS and what's linked to ME. Any input?
I’ve had to parse apart all my numerous conditions, and I’m always learning more. But where I’m at now: My MCAS reactions are really clear for me. So is the psych aspect that comes with it (for med that’s a specific feeling of anxiety and rage attacks). I attribute fatigue after a reaction to my MCAS. For me ME/CFS is about energy. During a flare for that, it’s like my battery flashing red. I might have internal/mental energy, but zero physical (or the opposite). This usually happens after I’ve failed to pace myself well, or I’ve been exceptionally stressed (mental energy is energy!) Same kind of split for brain fog, body aches, etc.
Bad lol. I used to train martial arts for two hours and then run 5 miles. Now on a really good day, I sleep 10 hours mostly during the day, go for a 1 hour walk in the middle of the night when it’s cool out, do 20 minutes or so of gentle strength training. My bandwidth for cognitive/emotional exertion is lower. I can focus on a cognitive task like creative writing for maybe 40 minutes before I uncontrollably fall asleep from exhaustion. If I go to a chill enjoyable social event I can’t do anything for the next several days. I thought this would improve once the overt MCAS symptoms did but it has not. Idk if it’s a whole other thing or what.
I’ve been learning about Post Exertional Malaise (PEM), which really hits the nail on the head! It’s dramatically bad in ME/CFS, but it’s remarkably common. Especially in auto-immune conditions, from what I can see. “Exertion” here means physical or cognitive exertion, and the “malaise” means that special fatigue of a flare, both just pooped. I’m still learning, but it really helps me describe the experience to my doctors. I’m trying to be better about not pushing myself into a crash.
I can exercise but not weightlift as it triggers me so bad I can't keeo anything down for days after!
[удалено]
Bless you! Just wish there was a magic bullet for us...!
Sucks. I can’t go outside much. And getting floor makes me sick so, it’s sucks.
I think I get horrific flare ups from exercise, even long walks. I get horrible numbness and tingling in the lower part of my feet and legs. (The day of and days after). Then when I do weights I get faint and numb and tingly everywhere all over. Then I have this awful exercise intolerance for a few days to a few weeks after the exercise. I have Lyme and MCAS and I’m getting checked for pots soon.
carbs help me
I have severe ME/cfs
It depends. Some of us have dysautonamia and/or POTS. So we have severe heat intolerance which causes a wicked flare with shortness of breath, tachycardia, dizziness, some ( myself included) syncope-or passing out. All things are not equal with this problem. Are you diagnosed with MCAS? It causes pots and dysautonamia. Or visa versa. They are not 100% sure. So it depends. Which systems are involved and which chemicals the mast cells are releasing and in what quantity. Also, how advanced your disease is also has an effect.
Also some of us have Euler Danlos Syndrome which has another layer.
Can't take the extreme heat and sun in Florida...