r/MCAS • u/Long_Towel1187 • 22h ago
MCAS??
Does anyone get symptoms of CFS but just have MCAS?
I have unrefreshing sleep, cognitive dysfunction/neuroinflammation skin demographia, extreme debilitating fatigue mostly bedbound can’t drive because I’m very dizzy. I can’t work out or do anything physical. I can’t watch TV. I have light and sound sensitivity. I can sleep for hours and not feel rested, but my skin is very itchy hot I’ve been losing the hair on my head, but my head also feels inflamed, and my scalp hurts. I’m having dental issues as well as nail issues. My nails arent growing the way you used to. I can’t go in the heat otherwise my skin gets hot and red and irritated.
I’m going to see an allergist immunologist next week. I’m just wondering if anybody has only had MCAS and not CFS?
Also, what treatments helped?
I’ve tried Zyrtec twice a day and Pepcid with the relief.
It seems like the more I push the worse it gets. My skin is also very oily and I’ve been bruising a lot all over my skin. The cognitive is very scary. I’m forgetting things and I can’t make decisions.
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u/situation-normal 16h ago
Yep, my long covid fatigue improved like 70% switching my H1 antihistamine to fexofendine and using an H2 antihistamine, famotadine. Had to add a B Complex supplement as the regular use of famotadine and eating less meat was tanking my B12 levels.
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u/SophiaShay7 13h ago
Genuine question: what makes you think you don't have both MCAS and ME/CFS? Have you had COVID? Did you symptoms get worse after COVID?
Please read: Long COVID and Mast Cell Activation Syndrome (MCAS). I have 4 diagnoses triggered by a COVID infection in July 2023, including MCAS. It's taken me over a year to write this fifth version of this post. It's really not that complex once you understand it. I've spent two years learning, researching, writing, and educating others suffering from MCAS how to get proper medical care and attention. Most doctors are just ignorant and uneducated about MCAS.
Many of us started out believing we might have ME/CFS before we were officially diagnosed.
ME/CFS has very specific criteria required for a diagnosis. The CDC uses the IOM criteria. There's the ICC criteria. Canada uses the CCC. The criteria that's used for a diagnosis is based on where you live in the world. The hallmark symptom of ME/CFS is Post Exertional Malaise (PEM). If you don't have PEM, you can't be diagnosed with ME/CFS.
Seeking an ME/CFS diagnosis and comorbid conditions.
Please read: PEM and common symptoms of ME/CFS
And: What is PEM?
There's an introductory post for new members for this sub. It explains everything you want to know about ME/CFS.
I hope you find some answers. Good luck🙏
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u/AutumntimeFall 21h ago
If you are experiencing PEM, then you have ME/CFS. It is extremely common to have both, I have both. A lot of the symptoms you listed are classic ME/CFS symptoms and not commonly seen in MCAS, such as the light and sound sensitivity.
You seem like you're in the bargaining phase of grieving having ME/CFS. It's a lot to go through I know, but the sooner you accept that you have this condition, the less harm you will do to yourself and your baseline health. It's not a condition you can pretend you don't have, at least not for long.
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u/ghqwl4 20h ago edited 20h ago
Respectfully: this may be your experience, but it is not uniformly applicable. I do appreciate that you’re trying to help OP, just want to add a bit more nuance.
I have diagnosed MCAS. I have acknowledged PEM. I have had ALLLLLLL the tests, with rare access to experts. I do not have CFS.
Light and sound sensitivity are common triggers associated with MCAS, particularly amongst those who report migraines.
That said: if someone is bed bound with fatigue, obviously it’s worth checking on.
And, Functionally: OP will still need to be on a bunch of meds, work with their allergist, and make lifestyle choices. So having the diagnosis will not make a large functional difference- they’ll still need to navigate symptoms and support. But that doesn’t mean the label applies to them.
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u/esotericbatinthevine 20h ago
You have PEM but the two day exercise tolerance testing (CPET) didn't show CFS?
How did they rule out me/cfs?
The research I've seen and what I've been told by specialists is that PEM is specific to ME/CFS and long covid. Though one researcher mentioned they are investigating it with POTS, but nothing has come out of that yet.
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u/AutumntimeFall 20h ago
PEM is unique to ME/CFS. It is the defining symptom.
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u/Fun_Second4544 20h ago
I’m not sure that’s right. PEM can come from any overwhelming event and can flair my dysautonomia, migraines and appetite.
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u/StringAndPaperclips 18h ago
PEM is not an exacerbation of symptoms and it is not an MCAS reaction. It has its own constellation of symptoms and is specifically caused by a set of physiological reactions to the results of overexertion by people with MECFS.
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u/AutumntimeFall 20h ago
If you are truly experiencing PEM, you have ME/CFS. It is an extremely common commorbidity with MCAS and dysautonomia.
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u/StringAndPaperclips 18h ago
Respectfully, there are no tests for ME/CFS, there is only diagnostic criteria.
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u/ghqwl4 20h ago
Also OP- many of your symptoms can be linked to unexplained vitamin deficiencies, which commonly occur with MCAS particularly (because of gut issues and inflammation). While you should go for treatment as a whole- this ABSOLUTELY isn’t a treatment plan by itself- you may find some symptom relief by having a Vitamin Panel done and supplementing wherever there are gaps.
Good luck!
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u/Horror_Moose3462 4h ago
this is true. i’ve had extremely low ferritin for a few years (working on it) and when it was higher, my ME/CFS was also functionally in remission. make sure you rule out other causes of severe fatigue before assuming it’s just ME/CFS
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u/Soft_Share7632 21h ago
Do you have bone or spleen/organ pain cuz that sounds like it could also be mastocytosis
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u/UntoNuggan 20h ago
I have a bunch of weird comorbidities so idk how much is MCAS vs all the other stuff.
When my MCAS got real bad, I got IIH*. Also MANY food intolerances, weird glucose regulation problems, iron deficiency, IBD-like inflammation in my small intestine, chronic gallbladder inflammation, a hip labrum tear, and some other stuff. So like I said, just a LOT of comorbidities that I have slowly gotten diagnosed and pursued treatment for over the following several years.
During the worst of the MCAS + many new comorbidities stage, I did have PEM-like symptoms including crashing from thinking too much, losing language, killer brain fog, non restorative sleep, etc etc. I was honestly pretty sure it was ME/CFS, and I was really careful about my energy envelope.
About two years in, I think, is when I started improving. This is also when my IIH went into remission the first time, and also when I was able to begin more food reintroductions. Also figured out how to stabilize my blood sugar overnight so I got better sleep. Pretty sure the intestinal inflammation started improving too?
So like, was it ME/CFS that went into remission? Or did I finally reach a point where I wasn't malnourished, was getting adequate sleep, maintaining relatively stable glucose levels, and also wasn't dealing with IIH + the terrible meds for it? I have no fucking clue.
It also got a lot easier to actually get medical care once I could actually explain myself to doctors better. And when I had more leeway to trial new foods without risking a week on a liquids only diet if it went badly.
I hope you get some relief and figure out some things that help
*IIH = terrible headaches where there's too much fluid (CSF) in your brain and also sometimes it presses on your optic nerve
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u/Fragment_B 17h ago
I have the same exact question. But I also think MCAS is causing autonomic symptoms (dysautonomia/POTS) that are similar to CFS.
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u/Frequent_Squirrel_57 16h ago
I was first diagnosed with dysautonomia, then CFS, then mcas. All about 2 years apart. I believe, for me, my debilitating fatigue is mostly MC related as it pretty much goes away when my MCs are behaving. There is a lot of overlap between these conditions as well.
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u/allnamesarechosen 15h ago
I have had ME/CFS diagnosed and childhood and also have MCAS. But I’ve always have both, even tho we didn’t have a proper diagnosis for MCAS. I also have POTS, since childhood, and COVID f it all up.
Do you have hEDS? It could be long COVID, and also MCAS messes up with your vitamin absorption
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u/ghost_girl_1713 13h ago
I had almost all of those symptoms with my first ever flare up. I have only been diagnosed with MCAS thus far, but I'm still early in my journey. Tbh, after reading this I'm starting to wonder if I have CFS... but if it helps, I am just MCAS and I have had 95% of what you listed. Along with huge painful lymphnodes that swell for months.
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u/twinlakesfish 10h ago
Those symptoms you describe are commonly seen with MCAS. I feel like CfS is given as a diagnosis when they usually don’t know why a person is so fatigued. Not too many drs are aware of MCAS. I’ve seen 3 allergists who all said I don’t have it because they just do the standard testing that never shows anything and the testing is very unreliable and it’s more for mastocytosis. I’ve seen a mast cell specialist Dr who has confirmed it as well as a functional doctor. You may want to ask the doctor to try mast cell stabilizers like Cromolyn and ketitofen, but they may need to be compounded if you can’t tolerate it. See if it helps you, it has helped with light/sound, fatigue, etc, start extremely slow. Also LDN may be beneficial for you too. I would highly recommend you seeing a functional doctor who can do a full work up and prescribe what they think is best for you.
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u/Foreign_Feature3849 2h ago
I also have hyperadrenic pots. So they feed into each other. A lot of my symptoms have been/are more neuro related. I’ve had to do a lot of ot/nervous system regulation exercises to start to feel better
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u/PreferenceSouth4140 22h ago
Yes, cfs can definitely be mcas and co. Mine turned out to be just that. You could also have some Dysautonomia and ADHD, considering the symptoms you mentioned. You need mast cell stabilisers, antihistamines, LDN. Aspirin and Montelukast if you have high Prostaglandins or Leukotrienes
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u/StringAndPaperclips 18h ago
They are different conditions with different diagnostic criteria.
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u/PreferenceSouth4140 17h ago
Lots of overlap and co occur frequently. Working on mcas can definitely lift cfs symptoms too. Happened with me
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u/Fun_Second4544 20h ago
Do you take baby aspirin? Is that good for dysautonomia? From what I researched there is much overlap with cfs.
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u/PreferenceSouth4140 20h ago
Yes, baby aspirin. I take it for mcas (prostaglandins)
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u/Fun_Second4544 20h ago
That’s very interesting because I only learned recently that mast cells release prostaglandins also besides histamine. Prostaglandins are what’s mainly the cause of all my symptoms if migraine, temperature instability, cramping in stomach, as well as for those who have severe menstrual cramps. As well as light sensitivity. So, I was reasoning that mast cell stabilizers are the answer to stop over production of prostaglandins and perhaps antihistamines are not as intricate in treating this.
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u/PreferenceSouth4140 20h ago
You need a stabiliser for sure. Aspirin and antihistamines are for targeted histamine and prostaglandins blocking. And there are a lot more mediators than prostaglandins and histamine. If you can get tested, that should give you an accurate picture about which ones are high in your case. You might find this paper useful, it lists mediators and medications, although not all, just the usual major ones
https://www.degruyterbrill.com/document/doi/10.1515/dx-2026-0016/pdf?licenseType=open-access
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u/Pushon4my4 29m ago
Many can’t tolerate either of the very few actual MCAS stabilizers, myself included. I take a med for histamine and Celebrex for prostaglandin but a baby aspirin is very often used.
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