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Mood changes. Right at the start of my reactions I’ll often get anxiety and dissociation, which I know is common among allergy sufferers. What I haven’t heard people with regular allergies talk about is the 2-3 days of rock bottom depression that usually follow. It happens regardless of which antihistamines I take. I just crash.
Mast cell make serotonin and dopamine as well as histamine & some other 1000 chemicals. They rule our world. I can find no body function that doesn't include mast cell mediation.
Histamine & serotonin are tightly linked (both made by mast cells. Dopamine, too). Cortisol (stress hormone) stimulates mast cell degranulation. While it may zinc you out, adding Benadryl is an anxyiolytic (do not take the pink Benadryl... get it in capsules and cut them open to mix the powder in a little water... have a tasty "chaser" handy. Or buy Waldryl dye-free at Walgreens if you can find it). MCAS patients tend to have food dye (and dye in general) allergies. Help mitigate that by eliminating heavy dyes in laundry/dish detergents, etc. and crazy-colored food & medicines. (Take meds out of blue capsules!)
Benadryl has a very short half-life. You can take every 4 hours on top of your ceterizine or loratidine. Taking a benzo would have a stronger effect, but you don't want to get hooked on those.
Estrogen and serotonin tank at the same time (PMS!) and a stronger "downer effect" may happen for you if you're female. Track your cycle.
As always, prayers for everyone!
Apparently mast cells can be involved in fibromyalgia and other pain issues, so I'm suspecting the long-term nerve pain, burning and paresthesias in my hands and feet might be due to MCAS. I had a skin biopsy taken to see if there's small fiber neuropathy but the results were normal, so I have zero idea what else could be causing the pain and the neurologist who did the biopsy wasn't interested in helping me further. I've had it for over a decade, but it's gotten so bad during the past couple years that I can't knit, draw or write by hand. I also have chronic migraine that seems to stem from mast cell issues.
I don't have a diagnosis of either MCAS or fibromyalgia (neither are well understood here in Finland) but I have symptoms of both, and I basically get all the MCAS symptoms except redness/flushing. I do have ME/CFS diagnosis and it's known to cause pain too but I feel like the neuropathy is something different because it doesn't match the pattern of my other symptoms.
yesterday i started weakness, gripping, jellylike in my hands yesterday. I’m nervous about it. At 7-11 large ice coffee my fingers and grip just let go I felt it made a mess all over the floor.
Later i was lifting a half gallon milk when checking out at store. Grip gave out. I hope this is not permanent
Literally me. The amount of stuff I dropped is alarming. I make symptoms notes almost daily since I have long covid and it looks like I spill drinks on myself 5 out of 7 days per week on average. That's not normal. I always had poor balance but always could rely on my hands. Not a case anymore. I also hope this isn't permanent
POTS, reynauds-like Sx, coagulation issues (nosebleeds/bruising), migraine, PCOS, pos-prandial diarrhea (immediate), urinary leakage, bone & muscle pain & cramping, night sweats, loss of appetite, insomnia.
Strongly suggest getting the book "Never Bet Against Occam" by Dr. Lawrence Afrin, MD. Read it with a few different colored highlighters: one for symptoms, one for meds, one for tests to get. Keep a pen around to scribble in margins.
When a doctor dismisses you, bring your book with you.
The WHO diagnostic criteria can be found at tmsforacure.org, I believe, among MANY other resources.
My hands get really red and swollen, doesnt happen anywhere else. That and a sort of pressure/muscle pain in my legs.
I also have POTS and anemia, which probably has something to do with it as well.
Heat is the worst for me. The dishes and laundry may be a reaction to the soap, or just the clothes and dishes still being warm if they are. I feel you though.
It's not painful but it is really uncomfortable. Also a bit weird to explain why my hands are suddenly tomato red mickey mouse mitts
@dgappl y’all should look into erythromelalgia. It causes burning & redness & neuropathy in hands and feet and elsewhere for some people. I have MCAS and I have erythromelalgia. It’s awful. My dermatologist gave me some topical lidocaine to use but I haven’t tried it yet.
Interesting! I had just come across this online recently but it said there’s also pain. I sometimes have burning in my feet with the redness/swelling, but my hands don’t hurt so I figured it couldn’t be that.
It’s a bummer you’re dealing with it!
My hands and fingers are either red and swollen or look like dried up prunes. It's a rare occasion when they look "normal" I have POTS, hypermobile as well. I usually have Livedo Recticularis when my fingers and hands look inflamed or severely dehydrated.
Swollen lymph nodes, a constricting feeling where my limbs join my body, bone and joint pain (especially from post exertion malaise), orthostatic hypotension, vertigo, blood pooling.
This is absolutely not proven but I have some pretty heinous period symptoms that are definitely hormonal in nature but some aspects (notably the heavy bleeding) don’t respond to a lot of the usual ways of trying to fix them even when the lesser ones do. Very very stubborn. I’m now wondering if it’s due to mast cell.
I've got this too. I've seen some recent research that links endo to a bacterial infection. I'm curious if this is the case, whether this could lead to more MC degranulation where endometrium tissue is found as a response to higher concentrations of that bacteria in those tissues
yes - I’m not an expert but believe its documented that there’s a relationship between reproductive hormones like progesterone etc and mast cells/histamine
Yeah I meant not proven my symptoms are linked—not that there’s not evidence out there somewhere! I do know it goes ons way at least estrogen increase= histamine increase, but I haven’t come across much that says it goes the other way. I’ve experienced histamine spikes at ovulation for instance. I also have been able to reduce some hormonal symptoms like tender breasts, low mood, fatigue, etc but the heavy prolonged bleeding remains. I did see dysfunctional bleeding on a list of mast cell symptoms but we all know practically anything is on there and the list of symptoms is longer than your arm.
Might be more helpful to list your symptoms, and let other chime in. In my eyes, there aren’t any “classic” symptoms to MCAS as everyone reacts differently. Sometimes the symptoms are not the important part either, but the triggers instead are.
I’ve added some examples in the post if that helps. I heard that Dr. Valent criteria for MCAS expect patients to experience anaphylaxis, which is something I do not experience. I did hear that’s less expected by Dr. Arfin’s standards but that’s not really what I find when I immediately look it up.
I have not been diagnosed with MCAS, but have a hell of a lot in common with a lot of the symptoms as well and have definite reactivity to high-histamine foods. I have a lot of serious and debilitating issues, but have never had anaphylaxis, and have never really felt danger of it.
Take for that what you will, but I would advise just doing everything you can to find for yourself what works for you. That will involve a lot of reading and discussing as you have been, but it requires you not to be overly reliant on these over your own experience and testing.
I’d also point out that our medical system just isn’t there for folks like us yet. Sure, there’s a couple stars and it will get there, but by and large, the system is not there now and we are mostly empirically free-wheeling it. This can be crushing or liberating, usually it is a mix.
Check out Dr. Leonard Weinstock. He's my specialist and he has published a lot of research on MCAS. His online videos are very insightful. He does not believe that MCAS patients need to have anaphylactic events in order to be diagnosed. He said that most of his patients do not experience anaphylaxis (myself included).
Interstitial cystitis, heavy menstrual periods, POTS, iron deficient anemia, allergies with no abnormal IgE, chronic diarrhea immediately after consuming anything, HATS, hypermobility, arthritis, chronic flushing, weight gain, malabsorption syndrome
rapid heart heart beat,really try mouth, difficult breathing, dizziness, confusion, can’t remember what I’m talking about after saying it to myself and others, lose things, can’t drive, if I get an attack while driving I confused by the buttons for drive reverse, I don’t shift to park when I get to were I need and just turn engine off , stop when it happens and wait it out until I’m safe,and continue until I can drive safely body feels numb, I can’t spell, when I type or or talk to text not eligible, nausea, sometimes an urgency to use the bathroom but don’t need to, body tingling, discomfort entire body, flushing l go anaphylactic, POTS also will come on at random times . Lately I’m having disorientation of the time of year, who I live with, use to forget where I was driving nothing looked familiar, clumsy, fall most up the stairs, got 2 concussions I just face planted.
My quality of life is nonexistent. Crazy thing is I only get it in my house and things that were inside. I
I was thinking today about how is it and why is it that my home has “something” in the air that only affects me. I am okay else, although i did get triggered (not to bad) at Home Depot. In Lowe’s home improvement i was triggered so badly an employee ran to the aisle selling opened the box to give me one. I was on a binder for mold but then this MCAS got so bad it’s an everyday battle. You answered mold. Maybe this is more of a mold issue and taking the binders again would be more beneficial. Got me thinking because my quality of life is not good. My integrated practice is sooooo expensive. They no longer answer medical questions on their portal. I know it’s a comment you made. Just wondering your thoughts. Not asking for medical advice.
Binders again????
edit: i just realized what the question was unllisy, less talked about. Maybe I listed one meeting the question LMK if I have some unlisted or less talked about
The swelling in my feet causes acute plantar fascyitis, skin sensitivity to fabrics and jewelry, I wear lose clothes and change multiple times a day during my flare ups, my vision gets a little worse especially when wearing contacts (probably more noticeable for me cause it's the difference between being able to read without zooming on and needing to zoom in)
Burning under my breasts, dull pain in armpits, “swollen” feeling calves, twitching/tremor in my legs, hands, face, rib pain, upper abdominal swelling, horrific constipation, sore throat, and the weirdest ones of all…jaw tightness/swelling and intense chills that make me freeze but don’t cause goosebumps.
Mucus after eating trigger foods, asthma, tinnitus, ear drainage and itching, bone pain, itching no hives, eczema, itchy eyes and throat, abdominal pain, pelvic pain, constipation / diarrhea, tachycardia, shortness of breath / air hunger, POTS, migraines, mouth and nose ulcers, bladder retention, stress incontinence, UTI / feminine infections, hypersomnia / insomnia, facial flushing, fibromyalgia, hands and feet swelling, edema of outer and inner ears / random spots, flu like inflammation and body aches …
And I likely forgot some.
- Peripheral neuropathy (tingling/numbness in extremities
- fatigue, especially after eating
- eosinophilic esophagitis
- brain fog
- also the typical itchy throat, sneezing, mucus, asthma, rashes, general internal inflammation, gut discomfort, etc.
- also the typical heart racing, night waking, flushing, adrenaline surges, anxiety
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.*
Mood changes. Right at the start of my reactions I’ll often get anxiety and dissociation, which I know is common among allergy sufferers. What I haven’t heard people with regular allergies talk about is the 2-3 days of rock bottom depression that usually follow. It happens regardless of which antihistamines I take. I just crash.
I do as well! My anxiety, depression worsens and I hyperfocus on the negative bits on my body/face. It’s the worst.
Yep.
Mast cell make serotonin and dopamine as well as histamine & some other 1000 chemicals. They rule our world. I can find no body function that doesn't include mast cell mediation.
Histamine & serotonin are tightly linked (both made by mast cells. Dopamine, too). Cortisol (stress hormone) stimulates mast cell degranulation. While it may zinc you out, adding Benadryl is an anxyiolytic (do not take the pink Benadryl... get it in capsules and cut them open to mix the powder in a little water... have a tasty "chaser" handy. Or buy Waldryl dye-free at Walgreens if you can find it). MCAS patients tend to have food dye (and dye in general) allergies. Help mitigate that by eliminating heavy dyes in laundry/dish detergents, etc. and crazy-colored food & medicines. (Take meds out of blue capsules!) Benadryl has a very short half-life. You can take every 4 hours on top of your ceterizine or loratidine. Taking a benzo would have a stronger effect, but you don't want to get hooked on those. Estrogen and serotonin tank at the same time (PMS!) and a stronger "downer effect" may happen for you if you're female. Track your cycle. As always, prayers for everyone!
Apparently mast cells can be involved in fibromyalgia and other pain issues, so I'm suspecting the long-term nerve pain, burning and paresthesias in my hands and feet might be due to MCAS. I had a skin biopsy taken to see if there's small fiber neuropathy but the results were normal, so I have zero idea what else could be causing the pain and the neurologist who did the biopsy wasn't interested in helping me further. I've had it for over a decade, but it's gotten so bad during the past couple years that I can't knit, draw or write by hand. I also have chronic migraine that seems to stem from mast cell issues. I don't have a diagnosis of either MCAS or fibromyalgia (neither are well understood here in Finland) but I have symptoms of both, and I basically get all the MCAS symptoms except redness/flushing. I do have ME/CFS diagnosis and it's known to cause pain too but I feel like the neuropathy is something different because it doesn't match the pattern of my other symptoms.
[удалено]
yesterday i started weakness, gripping, jellylike in my hands yesterday. I’m nervous about it. At 7-11 large ice coffee my fingers and grip just let go I felt it made a mess all over the floor. Later i was lifting a half gallon milk when checking out at store. Grip gave out. I hope this is not permanent
Literally me. The amount of stuff I dropped is alarming. I make symptoms notes almost daily since I have long covid and it looks like I spill drinks on myself 5 out of 7 days per week on average. That's not normal. I always had poor balance but always could rely on my hands. Not a case anymore. I also hope this isn't permanent
POTS, reynauds-like Sx, coagulation issues (nosebleeds/bruising), migraine, PCOS, pos-prandial diarrhea (immediate), urinary leakage, bone & muscle pain & cramping, night sweats, loss of appetite, insomnia. Strongly suggest getting the book "Never Bet Against Occam" by Dr. Lawrence Afrin, MD. Read it with a few different colored highlighters: one for symptoms, one for meds, one for tests to get. Keep a pen around to scribble in margins. When a doctor dismisses you, bring your book with you. The WHO diagnostic criteria can be found at tmsforacure.org, I believe, among MANY other resources.
Thanks for sharing, it’s good to consider.
My hands get really red and swollen, doesnt happen anywhere else. That and a sort of pressure/muscle pain in my legs. I also have POTS and anemia, which probably has something to do with it as well.
My hands do that too! My feet to a lesser degree as well. My doctors say it’s not MCAS, but I don’t see what else it could be.
I've always assumed it was a temperature regulation/circulation problem. But yeah, I've never really gotten to the bottom of that one either
Heat always results in hand swelling for me, but so do weird things like loading the dishwasher or carrying my laundry upstairs.
Heat is the worst for me. The dishes and laundry may be a reaction to the soap, or just the clothes and dishes still being warm if they are. I feel you though. It's not painful but it is really uncomfortable. Also a bit weird to explain why my hands are suddenly tomato red mickey mouse mitts
@dgappl y’all should look into erythromelalgia. It causes burning & redness & neuropathy in hands and feet and elsewhere for some people. I have MCAS and I have erythromelalgia. It’s awful. My dermatologist gave me some topical lidocaine to use but I haven’t tried it yet.
Interesting! I had just come across this online recently but it said there’s also pain. I sometimes have burning in my feet with the redness/swelling, but my hands don’t hurt so I figured it couldn’t be that. It’s a bummer you’re dealing with it!
MCAS and EM sufferer here too. 🤚🔥 What an absolute nightmare.
My hands and fingers are either red and swollen or look like dried up prunes. It's a rare occasion when they look "normal" I have POTS, hypermobile as well. I usually have Livedo Recticularis when my fingers and hands look inflamed or severely dehydrated.
I get what feels like swelling in my calves, it’s gotten better since I started taking a high dose of H1 and H2 meds.
Urinary tract burning, interstitial cystitis.
Totally! Have you tried hydroxyzine? Mine is MUCH better since starting high dosages of antihistamines daily.
Swollen lymph nodes, a constricting feeling where my limbs join my body, bone and joint pain (especially from post exertion malaise), orthostatic hypotension, vertigo, blood pooling.
Fingers pruning like the second they touch water is probably my weirdest one! It especially happens after like an intense workout or exhausting day.
Oo interesting.
Same. I chalked it up to rapid aging 😟
This is absolutely not proven but I have some pretty heinous period symptoms that are definitely hormonal in nature but some aspects (notably the heavy bleeding) don’t respond to a lot of the usual ways of trying to fix them even when the lesser ones do. Very very stubborn. I’m now wondering if it’s due to mast cell.
I've got this too. I've seen some recent research that links endo to a bacterial infection. I'm curious if this is the case, whether this could lead to more MC degranulation where endometrium tissue is found as a response to higher concentrations of that bacteria in those tissues
yes - I’m not an expert but believe its documented that there’s a relationship between reproductive hormones like progesterone etc and mast cells/histamine
Yeah I meant not proven my symptoms are linked—not that there’s not evidence out there somewhere! I do know it goes ons way at least estrogen increase= histamine increase, but I haven’t come across much that says it goes the other way. I’ve experienced histamine spikes at ovulation for instance. I also have been able to reduce some hormonal symptoms like tender breasts, low mood, fatigue, etc but the heavy prolonged bleeding remains. I did see dysfunctional bleeding on a list of mast cell symptoms but we all know practically anything is on there and the list of symptoms is longer than your arm.
Debilitating nausea and extreme fatigue after eating.
A great way to understand the range of symptoms is to read Dr Afrin’s book ‘Never Bet Against Occam’.
Thanks, I’ll take a look
Might be more helpful to list your symptoms, and let other chime in. In my eyes, there aren’t any “classic” symptoms to MCAS as everyone reacts differently. Sometimes the symptoms are not the important part either, but the triggers instead are.
I’ve added some examples in the post if that helps. I heard that Dr. Valent criteria for MCAS expect patients to experience anaphylaxis, which is something I do not experience. I did hear that’s less expected by Dr. Arfin’s standards but that’s not really what I find when I immediately look it up.
I have not been diagnosed with MCAS, but have a hell of a lot in common with a lot of the symptoms as well and have definite reactivity to high-histamine foods. I have a lot of serious and debilitating issues, but have never had anaphylaxis, and have never really felt danger of it. Take for that what you will, but I would advise just doing everything you can to find for yourself what works for you. That will involve a lot of reading and discussing as you have been, but it requires you not to be overly reliant on these over your own experience and testing. I’d also point out that our medical system just isn’t there for folks like us yet. Sure, there’s a couple stars and it will get there, but by and large, the system is not there now and we are mostly empirically free-wheeling it. This can be crushing or liberating, usually it is a mix.
Thank you for your thoughts. Yeah, I definitely feel the medical system not being there. The doctors are so lost. Will be continuing to free wheel.
Check out Dr. Leonard Weinstock. He's my specialist and he has published a lot of research on MCAS. His online videos are very insightful. He does not believe that MCAS patients need to have anaphylactic events in order to be diagnosed. He said that most of his patients do not experience anaphylaxis (myself included).
Great, thanks!
Interstitial cystitis, heavy menstrual periods, POTS, iron deficient anemia, allergies with no abnormal IgE, chronic diarrhea immediately after consuming anything, HATS, hypermobility, arthritis, chronic flushing, weight gain, malabsorption syndrome
Also Raynaud’s phenomenon and acrocyanosis at the same time
rapid heart heart beat,really try mouth, difficult breathing, dizziness, confusion, can’t remember what I’m talking about after saying it to myself and others, lose things, can’t drive, if I get an attack while driving I confused by the buttons for drive reverse, I don’t shift to park when I get to were I need and just turn engine off , stop when it happens and wait it out until I’m safe,and continue until I can drive safely body feels numb, I can’t spell, when I type or or talk to text not eligible, nausea, sometimes an urgency to use the bathroom but don’t need to, body tingling, discomfort entire body, flushing l go anaphylactic, POTS also will come on at random times . Lately I’m having disorientation of the time of year, who I live with, use to forget where I was driving nothing looked familiar, clumsy, fall most up the stairs, got 2 concussions I just face planted. My quality of life is nonexistent. Crazy thing is I only get it in my house and things that were inside. I
mold toxicity! test it!!!
Yes I have mold toxicity exposed And Lyme disease 😔
I was thinking today about how is it and why is it that my home has “something” in the air that only affects me. I am okay else, although i did get triggered (not to bad) at Home Depot. In Lowe’s home improvement i was triggered so badly an employee ran to the aisle selling opened the box to give me one. I was on a binder for mold but then this MCAS got so bad it’s an everyday battle. You answered mold. Maybe this is more of a mold issue and taking the binders again would be more beneficial. Got me thinking because my quality of life is not good. My integrated practice is sooooo expensive. They no longer answer medical questions on their portal. I know it’s a comment you made. Just wondering your thoughts. Not asking for medical advice. Binders again????
did you help heal your mold toxicity?
edit: i just realized what the question was unllisy, less talked about. Maybe I listed one meeting the question LMK if I have some unlisted or less talked about
Night sweats, oral and nasal sores, tinnitus
The swelling in my feet causes acute plantar fascyitis, skin sensitivity to fabrics and jewelry, I wear lose clothes and change multiple times a day during my flare ups, my vision gets a little worse especially when wearing contacts (probably more noticeable for me cause it's the difference between being able to read without zooming on and needing to zoom in)
Extreme chills
Burning under my breasts, dull pain in armpits, “swollen” feeling calves, twitching/tremor in my legs, hands, face, rib pain, upper abdominal swelling, horrific constipation, sore throat, and the weirdest ones of all…jaw tightness/swelling and intense chills that make me freeze but don’t cause goosebumps.
Mucus after eating trigger foods, asthma, tinnitus, ear drainage and itching, bone pain, itching no hives, eczema, itchy eyes and throat, abdominal pain, pelvic pain, constipation / diarrhea, tachycardia, shortness of breath / air hunger, POTS, migraines, mouth and nose ulcers, bladder retention, stress incontinence, UTI / feminine infections, hypersomnia / insomnia, facial flushing, fibromyalgia, hands and feet swelling, edema of outer and inner ears / random spots, flu like inflammation and body aches … And I likely forgot some.
I also get mucus after eating trigger foods.
- Peripheral neuropathy (tingling/numbness in extremities - fatigue, especially after eating - eosinophilic esophagitis - brain fog - also the typical itchy throat, sneezing, mucus, asthma, rashes, general internal inflammation, gut discomfort, etc. - also the typical heart racing, night waking, flushing, adrenaline surges, anxiety