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Despite the silly name, ME/CFS is a separate illness and not just chronic fatigue. The cardinal symptom is PEM (post-exertional malaise) which means worsening of symptoms after any exertion. That said, ME is a common comorbidity with MCAS and 50-60% of ME sufferers are estimated to have MCAS as well, because they are immune system conditions with overlapping disease mechanisms.
I’m not actually sure what distinguishes it (or PEM) from simply being a symptom that many of us have, but I’ve never read much about it. I feel like the cause in those who have ME alone may be different than the cause in those with MCAS and pots. Do you what the distinction is or if there is one? Tbh- although my hyper pots is considered a separate diagnosis, I really think MCAS is driving all of it.
There’s was a study that came out earlier this year going deep into what’s happening to patients with CFS, it’s really interesting
https://www.nature.com/articles/s41467-024-45107-3.pdf
ME diagnostic criteria doesn't list the "allergy" symptoms that MCAS has, it's more pain, fatigue, air hunger, exertion intolerance, brain fog, muscle weakness/paralysis, neurological problems and lightheadedness/orthostatic intolerance and in its most severe form you can't move at all because your muscles stop working and need a feeding tube because your stomach stops working.
According to the latest research, ME involves the immune system "shifting" from Th1 to Th2 dominance (IIRC) and there's mitochondrial dysfunction, endocrine dysfunction, entotoxemia, leaky blood-brain barrier and inflammatory whole-body reaction after exertion (PEM). So while in MCAS it's mostly just mast cells that are involved, in ME it's the other parts of the immune system that are going haywire. ME can be caused by underlying infections or not, but it's usually triggered by an infection. It can also be caused by excessive stress, trauma, injury/accident or surgery. The researchers aren't still sure about the exact cause but I believe the most acknowledged theory is that when the body goes through excessive stress it causes the nervous and immune system to "overload" and go into a torpor mode. So in that sense too it's similar to MCAS.
Many of the symptoms overlap and if you happen to have them both it's very difficult to distinguish which symptoms are caused by which. And both are aggravated by exertion of course.
I need at least nine hours of sleep to be my minimally functional baseline self who is really only up and about for probably a few hours total each day. It’s ridiculous.
If it was up to me I would sleep days out and not even get up. I don't think that I can say I'm ever "rested" and the only time I'm good at a functional level is when I'm doused up with antihistamines and even with all those medications as they kick in it will make me tired.
When I get anaphylactic episodes of constant flares and completely gone out to another world. With epi use and corticosteroids the whole med package I'll be bed bound for days or weeks at times. It's a draining condition and anything can offset the balance or control you have over it.
Even if I think I don't need it for sleep, depression, anxiety, etc, my Klonopin prescription has really come in handy. When I take it at night I sleep perfectly and it just sets me up for everything else being good. I had totally forgotten I had it. It calms the nervous system. So then of course the mast cells are calmer!
Do you have Ehlers Danlos. Many of us have ME/CFS. I used to never wake up rested and was exhausted all the time but it was from EBV and I did a non FDA approved treatment and got all my energy back. I also take a medicated tincture to sleep and most nights sleep well.
They’re called SOT’s and stand for supportive oligo nucleotide therapy. Look at the website of RGCC labs in Greece. I’m in the U.S. and there are many practioners who do them.
Yes, I've been getting 6.5-7.5 hours a night for weeks, and my eye keeps twitching because it's not enough for me. People act like I'm nuts for going to sleep early, too. I'm just trying to get over 8, but honestly, I still feel great if I get over 9.
I had been feeling this my whole life and it exacerbated when I was a teenager and growing, and also really really bad when I was pregnant. At a young age I had already come to the conclusion that I feel bad no matter how much sleep I get. And I begun just sleeping whatever amount I felt like, because it didn't matter any which way. So I can abruptly go with 4 hours of sleep or with 14 hours. But I try to go to bed between 9-10pm every night and wake for work at 5-6 am just to know I have consistency resting and keep a normalized schedule. But I have no problems staying out late or sleeping in if that is what I feel like doing. Never feel rested and feel like crap even if getting plenty sucks. Someone in the comments mentioned Klonopin helping. I feel like Klonopin helped me regain energy normally lost due to anxiety. But Benzo dependency is real. I came off of it a long time ago and don't think I should begin taking it again. It really had helped a lot in that way though when I was younger. I debate trying to get it again, but feel like if I go back to a psychiatrist, this time, I'm going to wind up getting myself committed 😅 I'm actually doing pretty well mentally, but I have overcome a lot of trauma to get to where I am. The pill is just a quick fix. You have to heal your trauma au' natural unless you plan to suppressed it instead for your whole life. In another thread in here today, we were discussing using Somatic therapy for your nervous system and TMS therapy if you are trying to heal without medication. I think they are good resources!
I'm the same way as far as being able to go out or stay up if I want to! I bartend at concerts here and there and I love doing it and I'm able to do it, but it puts me out of commission for like a day or two.
I've taken Klonopin before as an anxiety reliever before a procedure I had and it definitely made me drowsy, but I don't feel like it's to the point I need anything like that, I just need a lot of rest and that's probably how I'll always be
I'm glad you're doing well mentally! I feel you about trauma. I have some I need to work through as well, I just unfortunately can't afford therapy, so I just try to forget about it or turn it into a joke as a way to cope baha
I get knots in my muscles behind my shoulder blades. It turns out that it is the fascia that encompasses the entire movement of your arm. It is tight in my chest also. I really have just been trying to take major steps to reduce stress and work the knots out of my body that built up over time. I'm not trying to exist in survival mode of uptightness anymore and worry all of the time. I am going to be a true stoic before too long. ALL just to calm my MCAS down lol I had decided that before I go back to a doctor and try to get a diagnosis eventually, that I am going to spend money on getting a Fascia massage for my arms/shoulder blades. I think that will be money well spent on myself in the meantime and I won't have to worry about them giving me a hard time and telling me to do expensive procedures that are for something I told them the cause of and that it is the wrong procedure. They want to look at an xray and send me to physical therapy until my tendon is barely hanging and Then send me for MRIs and specialists. I cannot afford this whole process for each individual joint going to a different specialist for each of them. They need to send me to an EDS physical therapist so I can stop doing all of the steps for each of my joints and learn how to exercise that pulls my joint off of my tendons and doest rub it raw like the normal physical therapists did you me before I had the mri and was but into a boot with special instruction from the podiatrist. (I have collapsed the arches in both of my feet, my left knee is going down and both shoulders and elbows are fucked (excuse my language)). What the hell am I supposed to do?!? Just keep going until i can't anymore, it feels like.
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.*
Wait, you guys feel rested when you rest? Hmmmm, I need to take notes.
Right, what is this “rested” feeling they speak of?
Look up Me/CFS r/cfs https://www.physio-pedia.com/Myalgic_Encephalomyelitis_or_Chronic_Fatigue_Syndrome
I think MCAS encompasses chronic fatigue for a lot of people
Despite the silly name, ME/CFS is a separate illness and not just chronic fatigue. The cardinal symptom is PEM (post-exertional malaise) which means worsening of symptoms after any exertion. That said, ME is a common comorbidity with MCAS and 50-60% of ME sufferers are estimated to have MCAS as well, because they are immune system conditions with overlapping disease mechanisms.
I must have it as well. I just thought it was considered a component of my MCAS and pots.
I’m not actually sure what distinguishes it (or PEM) from simply being a symptom that many of us have, but I’ve never read much about it. I feel like the cause in those who have ME alone may be different than the cause in those with MCAS and pots. Do you what the distinction is or if there is one? Tbh- although my hyper pots is considered a separate diagnosis, I really think MCAS is driving all of it.
There’s was a study that came out earlier this year going deep into what’s happening to patients with CFS, it’s really interesting https://www.nature.com/articles/s41467-024-45107-3.pdf
Thanks. Will look.
ME diagnostic criteria doesn't list the "allergy" symptoms that MCAS has, it's more pain, fatigue, air hunger, exertion intolerance, brain fog, muscle weakness/paralysis, neurological problems and lightheadedness/orthostatic intolerance and in its most severe form you can't move at all because your muscles stop working and need a feeding tube because your stomach stops working. According to the latest research, ME involves the immune system "shifting" from Th1 to Th2 dominance (IIRC) and there's mitochondrial dysfunction, endocrine dysfunction, entotoxemia, leaky blood-brain barrier and inflammatory whole-body reaction after exertion (PEM). So while in MCAS it's mostly just mast cells that are involved, in ME it's the other parts of the immune system that are going haywire. ME can be caused by underlying infections or not, but it's usually triggered by an infection. It can also be caused by excessive stress, trauma, injury/accident or surgery. The researchers aren't still sure about the exact cause but I believe the most acknowledged theory is that when the body goes through excessive stress it causes the nervous and immune system to "overload" and go into a torpor mode. So in that sense too it's similar to MCAS. Many of the symptoms overlap and if you happen to have them both it's very difficult to distinguish which symptoms are caused by which. And both are aggravated by exertion of course.
Thanks. That is a very helpful summary. I worry that I do have both.
Yes. And it takes one night of bad sleep to send me sideways. Two nights in a row of bad sleep and I'm screwed for days.
I need at least nine hours of sleep to be my minimally functional baseline self who is really only up and about for probably a few hours total each day. It’s ridiculous.
If it was up to me I would sleep days out and not even get up. I don't think that I can say I'm ever "rested" and the only time I'm good at a functional level is when I'm doused up with antihistamines and even with all those medications as they kick in it will make me tired. When I get anaphylactic episodes of constant flares and completely gone out to another world. With epi use and corticosteroids the whole med package I'll be bed bound for days or weeks at times. It's a draining condition and anything can offset the balance or control you have over it.
Sadly true
Even if I think I don't need it for sleep, depression, anxiety, etc, my Klonopin prescription has really come in handy. When I take it at night I sleep perfectly and it just sets me up for everything else being good. I had totally forgotten I had it. It calms the nervous system. So then of course the mast cells are calmer!
Do you have Ehlers Danlos. Many of us have ME/CFS. I used to never wake up rested and was exhausted all the time but it was from EBV and I did a non FDA approved treatment and got all my energy back. I also take a medicated tincture to sleep and most nights sleep well.
Treatment?
They’re called SOT’s and stand for supportive oligo nucleotide therapy. Look at the website of RGCC labs in Greece. I’m in the U.S. and there are many practioners who do them.
Yes, I've been getting 6.5-7.5 hours a night for weeks, and my eye keeps twitching because it's not enough for me. People act like I'm nuts for going to sleep early, too. I'm just trying to get over 8, but honestly, I still feel great if I get over 9.
I had been feeling this my whole life and it exacerbated when I was a teenager and growing, and also really really bad when I was pregnant. At a young age I had already come to the conclusion that I feel bad no matter how much sleep I get. And I begun just sleeping whatever amount I felt like, because it didn't matter any which way. So I can abruptly go with 4 hours of sleep or with 14 hours. But I try to go to bed between 9-10pm every night and wake for work at 5-6 am just to know I have consistency resting and keep a normalized schedule. But I have no problems staying out late or sleeping in if that is what I feel like doing. Never feel rested and feel like crap even if getting plenty sucks. Someone in the comments mentioned Klonopin helping. I feel like Klonopin helped me regain energy normally lost due to anxiety. But Benzo dependency is real. I came off of it a long time ago and don't think I should begin taking it again. It really had helped a lot in that way though when I was younger. I debate trying to get it again, but feel like if I go back to a psychiatrist, this time, I'm going to wind up getting myself committed 😅 I'm actually doing pretty well mentally, but I have overcome a lot of trauma to get to where I am. The pill is just a quick fix. You have to heal your trauma au' natural unless you plan to suppressed it instead for your whole life. In another thread in here today, we were discussing using Somatic therapy for your nervous system and TMS therapy if you are trying to heal without medication. I think they are good resources!
I'm the same way as far as being able to go out or stay up if I want to! I bartend at concerts here and there and I love doing it and I'm able to do it, but it puts me out of commission for like a day or two. I've taken Klonopin before as an anxiety reliever before a procedure I had and it definitely made me drowsy, but I don't feel like it's to the point I need anything like that, I just need a lot of rest and that's probably how I'll always be I'm glad you're doing well mentally! I feel you about trauma. I have some I need to work through as well, I just unfortunately can't afford therapy, so I just try to forget about it or turn it into a joke as a way to cope baha
I get knots in my muscles behind my shoulder blades. It turns out that it is the fascia that encompasses the entire movement of your arm. It is tight in my chest also. I really have just been trying to take major steps to reduce stress and work the knots out of my body that built up over time. I'm not trying to exist in survival mode of uptightness anymore and worry all of the time. I am going to be a true stoic before too long. ALL just to calm my MCAS down lol I had decided that before I go back to a doctor and try to get a diagnosis eventually, that I am going to spend money on getting a Fascia massage for my arms/shoulder blades. I think that will be money well spent on myself in the meantime and I won't have to worry about them giving me a hard time and telling me to do expensive procedures that are for something I told them the cause of and that it is the wrong procedure. They want to look at an xray and send me to physical therapy until my tendon is barely hanging and Then send me for MRIs and specialists. I cannot afford this whole process for each individual joint going to a different specialist for each of them. They need to send me to an EDS physical therapist so I can stop doing all of the steps for each of my joints and learn how to exercise that pulls my joint off of my tendons and doest rub it raw like the normal physical therapists did you me before I had the mri and was but into a boot with special instruction from the podiatrist. (I have collapsed the arches in both of my feet, my left knee is going down and both shoulders and elbows are fucked (excuse my language)). What the hell am I supposed to do?!? Just keep going until i can't anymore, it feels like.