3 ms·

Thank you for posting this :) I've have chronic fatigue for 6 years, and yeah, there's tons of uncertainty here (if there was an easy answer we would've all use

Thank you for posting this :) I've have chronic fatigue for 6 years, and yeah, there's tons of uncertainty here (if there was an easy answer we would've all used it by now, lol). ME/CFS overlaps a lot with long covid, but there's also common comorbidities that further muddy the picture (MCAS, POTS, ehler-danlos syndrome, CCI, fibromyalgia, etc). The #1 sign of ME/CFS is post-exertional malaise, which is a delayed crash after even mild exertion, with the crash arriving anywhere from 4-48 hours later, and lasts for days after. Exertion can be taking a shower, thinking hard, etc. I just recently ruled out ME/CFS for me personally after figuring out that I don't have delayed crashes, but I still haven't figured out source of the fatigue (potentially MCAS?). Feel free to ask any questions :)

hypercube33 1y ago
I have a thing where I can do abnormal exercise and two days later feel like a truck is hitting me slowly. is this similar? I've always just brushed it off.
- smj-edison 1y ago
  Really hard to say from just that, what do you define as abnormal exercise? Couple of thoughts: 1. PEM is triggered by things that would be fine for a normal person (walking to car, standing in a line, etc). Over exercising is definitely a thing, but it's not the same as PEM 2. Does the following fatigue cause significant impairment, and does it last for a few days? There's some other criteria, but those are the first cut.
Aurornis 1y ago
MCAS is actually one of the trending diagnoses that has attracted a lot of misinformation and misdiagnosis. Specialists who treat MCAS are overwhelmed by referrals and requests from patients who don’t meet the criteria or don’t have any basic lab work that suggests MCAS. Many of the diagnoses from primary care or self-diagnoses are from people who have been led to believe that it explains their vague symptoms. There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication, which is another way of saying they probably don’t have it. So watch out. It’s trending among doctors who dabble in alternative medicine or who use it as a catch-all explanation for vague symptoms, but the social media version of MCAS has diverged from the medical definition. Ehlers-Danlos is another self-diagnoses that is spreading in these communities. This one is so bad that actual Ehlers-Danlos specialists have difficulty sorting through referral requests because so many people and even doctors think it explains vague symptoms. It’s also trending heavily on TikTok. CCI was briefly popular as an explanation due to a few high profile influencers. For a few years everyone was demanding imaging and sending it to one of a few doctors who specialized in it. Unfortunately those doctors were found to be excessively quick to diagnose. There were a lot of people on forums who rushed into those surgeries with no improvement at all. Be really careful on the forums. When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc) all at once it’s more likely that they’ve been either self-diagnosing with each trend or they have a doctor who will confirm any vague diagnosis they suggest. These things come in waves of popularity and you can tell when some of these people joined the social media circles by their list of self-diagnoses. Sadly, so much time has been wasted on chasing dead end diagnoses that spread via social media.
- smj-edison 1y ago
  Thanks for the warning :) I have responded to mast cell stabilizers and H1/H2 blockers, which is one reason I'm pursuing further treatment. I've also read Dr. Afrin's 70 page paper on MCAS diagnosis, so I have a pretty good idea of what is and isn't MCAS. And after 6 years of pursuing and failing to find treatment, I've also got fairly good at avoiding quacks... > There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication Will agree on non-response, but the typical blood test (tryptase) is not accurate in many cases[2]: "For example, in contrast to proliferative mastocytosis which usually drives significantly elevated tryptase levels, relatively non-proliferative MCAS usually presents with normal tryptase levels;" > When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc) Yes and no. [1] is a recent review that finds that these things really are quite comorbid with ME/CFS. All of them at once? Probably not, but a couple is common. [1] https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1.full https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v... [2] https://www.mastcellaction.org/assets/_/2021/09/18/b74c0e90-c404-4b44-8df9-4a453006b67a/presentation-diagnosis-and-management.pdf?v=1 https://www.mastcellaction.org/assets/_/2021/09/18/b74c0e90-...
hollerith 1y ago
I agree you do not have CFS. >I still haven't figured out source of the fatigue (potentially MCAS?). MCAS is easy to self-diagnose or at least it was in my case. Mast-cell symptoms are triggered by exercise, sun exposure, orgasms and having the connective tissue in your abdomen jiggled (e.g., by riding in a bus with bad suspension along a road with many potholes). For me it is always the same symptoms (fatigue, maybe irritability, maybe a feeling of heat on the skin) regardless of the trigger. Sometimes exposure to one of these things is not enough to trigger symptoms, but then a second exposure before the body has had time to recover from the first exposure will trigger symptoms. Also (after you remove yourself from any triggers) if the symptoms ameliorate slowly but surely over a period of 2 to 4 hours, that is a pretty strong sign that that the symptoms were caused by mast-cell "granulation" (activation) or at least it is a strong sign in my personal case: I have other chronic conditions that can cause similar symptoms, but if one of the other conditions causes a bout of fatigue or inability to stay productive, the severity of the symptoms will increase and decrease in chaotic or unpredictable ways.
- smj-edison 1y ago
  Hmm, that doesn't line up with what I've read... Dr. Afrin talks about how MCAS is a lifelong issue that only gets worse later on. Things like a history of bloody noses, strange allergic reactions (random hives or asthma), ear infections as a child, etc. According to him, there should also be at least a couple of active symptoms, such as alternating diarrhea/constipation, edema, skin rashes or hives, foods that are high in histamine, pain while urinating, a constant feeling of being cold, hot flashes, and some others. He also encourages exercise as it helps regulate the immune system. I certainly don't mean to invalidate your own experience—I know how hard it can be to not be understood—but perhaps there's something else that would explain it better? I'm happy to be corrected :)

hypercube33 1y ago

I have a thing where I can do abnormal exercise and two days later feel like a truck is hitting me slowly. is this similar? I've always just brushed it off.

smj-edison 1y ago
Really hard to say from just that, what do you define as abnormal exercise? Couple of thoughts: 1. PEM is triggered by things that would be fine for a normal person (walking to car, standing in a line, etc). Over exercising is definitely a thing, but it's not the same as PEM 2. Does the following fatigue cause significant impairment, and does it last for a few days? There's some other criteria, but those are the first cut.

Aurornis 1y ago

MCAS is actually one of the trending diagnoses that has attracted a lot of misinformation and misdiagnosis. Specialists who treat MCAS are overwhelmed by referrals and requests from patients who don’t meet the criteria or don’t have any basic lab work that suggests MCAS. Many of the diagnoses from primary care or self-diagnoses are from people who have been led to believe that it explains their vague symptoms. There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication, which is another way of saying they probably don’t have it. So watch out. It’s trending among doctors who dabble in alternative medicine or who use it as a catch-all explanation for vague symptoms, but the social media version of MCAS has diverged from the medical definition. Ehlers-Danlos is another self-diagnoses that is spreading in these communities. This one is so bad that actual Ehlers-Danlos specialists have difficulty sorting through referral requests because so many people and even doctors think it explains vague symptoms. It’s also trending heavily on TikTok. CCI was briefly popular as an explanation due to a few high profile influencers. For a few years everyone was demanding imaging and sending it to one of a few doctors who specialized in it. Unfortunately those doctors were found to be excessively quick to diagnose. There were a lot of people on forums who rushed into those surgeries with no improvement at all. Be really careful on the forums. When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc) all at once it’s more likely that they’ve been either self-diagnosing with each trend or they have a doctor who will confirm any vague diagnosis they suggest. These things come in waves of popularity and you can tell when some of these people joined the social media circles by their list of self-diagnoses. Sadly, so much time has been wasted on chasing dead end diagnoses that spread via social media.

smj-edison 1y ago
Thanks for the warning :) I have responded to mast cell stabilizers and H1/H2 blockers, which is one reason I'm pursuing further treatment. I've also read Dr. Afrin's 70 page paper on MCAS diagnosis, so I have a pretty good idea of what is and isn't MCAS. And after 6 years of pursuing and failing to find treatment, I've also got fairly good at avoiding quacks... > There are also a lot of people who believe they have MCAS despite negative labs, non-traditional symptoms and a non-response to medication Will agree on non-response, but the typical blood test (tryptase) is not accurate in many cases[2]: "For example, in contrast to proliferative mastocytosis which usually drives significantly elevated tryptase levels, relatively non-proliferative MCAS usually presents with normal tryptase levels;" > When people start claiming they have a long list of hard to diagnose conditions (MCAS, Ehlers-Danlos, CCI, etc) Yes and no. [1] is a recent review that finds that these things really are quite comorbid with ME/CFS. All of them at once? Probably not, but a couple is common. [1] https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1.full https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v... [2] https://www.mastcellaction.org/assets/_/2021/09/18/b74c0e90-c404-4b44-8df9-4a453006b67a/presentation-diagnosis-and-management.pdf?v=1 https://www.mastcellaction.org/assets/_/2021/09/18/b74c0e90-...

hollerith 1y ago

I agree you do not have CFS. >I still haven't figured out source of the fatigue (potentially MCAS?). MCAS is easy to self-diagnose or at least it was in my case. Mast-cell symptoms are triggered by exercise, sun exposure, orgasms and having the connective tissue in your abdomen jiggled (e.g., by riding in a bus with bad suspension along a road with many potholes). For me it is always the same symptoms (fatigue, maybe irritability, maybe a feeling of heat on the skin) regardless of the trigger. Sometimes exposure to one of these things is not enough to trigger symptoms, but then a second exposure before the body has had time to recover from the first exposure will trigger symptoms. Also (after you remove yourself from any triggers) if the symptoms ameliorate slowly but surely over a period of 2 to 4 hours, that is a pretty strong sign that that the symptoms were caused by mast-cell "granulation" (activation) or at least it is a strong sign in my personal case: I have other chronic conditions that can cause similar symptoms, but if one of the other conditions causes a bout of fatigue or inability to stay productive, the severity of the symptoms will increase and decrease in chaotic or unpredictable ways.

smj-edison 1y ago
Hmm, that doesn't line up with what I've read... Dr. Afrin talks about how MCAS is a lifelong issue that only gets worse later on. Things like a history of bloody noses, strange allergic reactions (random hives or asthma), ear infections as a child, etc. According to him, there should also be at least a couple of active symptoms, such as alternating diarrhea/constipation, edema, skin rashes or hives, foods that are high in histamine, pain while urinating, a constant feeling of being cold, hot flashes, and some others. He also encourages exercise as it helps regulate the immune system. I certainly don't mean to invalidate your own experience—I know how hard it can be to not be understood—but perhaps there's something else that would explain it better? I'm happy to be corrected :)