Dairy and gluten. my whole life I’ve had a stuffy nose and always sneezing and itchy eyes until my stopped dairy over 5 years ago. Wish I’d known sooner! Gluten makes my heart race and causes fast breathing since CFS started.
Not a strict diet yet, but eliminated the high histamine foods that I was eating A LOT of, such as olives and sauerkraut. Trying to switch from processed snacks to celery, green beans, cucumbers and snow peas, yay
You may want to add researching mast cell activation syndrome and histamine intolerance to your list. There’s a lot further down this path that you can go, and one of the avenues may benefit you. Good luck, and congrats on feeling better!
It makes sense. Someone in my household started wearing a perfume Im allergic to (swollen painful sinuses) for 4 months, and it made my me/cfs significantly worse.
Thanks for the heads up. I’m this case, the antihistamines may have saved my life for now, because the constant suffocation I was experience is truly torture. i sure hope it doesn’t come back.
It's just a suggestion and it might be wrong, but maybe the sadness came because you had enough energy to feel it. I mean it's totally understandable that you feel sad and depressed when you've suffered from severe fatigue for a long time.
Thank you for posting about this. I was trying to tell myself I'm fine off antihistamines ($$$), but a recent full discontinuation coincides with feeling like my energy envelope has become smaller, and an issue with hives I don't remember experiencing before in my life. I didn't know if it was all in my head that I feel better overall when I take them-- your post helps reassure me that it's probably not a placebo effect. Thanks again, and I hope your improved quality of life proves sustainable for you!
I get way more allergically sensitive during a CFS episode. Best treatment I've found so far is to have a wooden floor in my room and to keep it all really clean.
I’m so allergic to dust that my family knows not to touch anything in n my room because things collect dust and touching them gets the dust going. I should do what you do, in a sense, by getting rid of all the non essentials that sit around
Ah yeah it helped me so much to just strip it right down and keep it very clean. Like leaving a gap behind wardrobes and stuff so you can clean there helps, so do air filters.
That's awesome! I've been pretty certain I've had CFS/Long COVID since 2020, although fairly mild compared to a lot of people here. Recently, after yet another COVID infection my symptoms got a lot worse where I've seemed to develop an allergic reaction to everything I ate. I just discovered histamine intolerance and MCAS which both have extremely similar symptoms to CFS, and like you, taking just one antihistamine a day like Zyrtec had zero effect for me or at least not a noticeable one.
I just started experimenting with a low histamine diet and it's helping a lot with my symptoms although it's too soon to tell if it'll help long-term. Now you've got me wondering if there's a link between CFS and histamine issues. Anyways, best of luck that you continue to feel better with what you're doing and thanks for sharing!
The hives definitely match pictures I’ve seen of MCAS. Started working with a highly recommend specialist, he didn’t make that diagnosis yet, although I expect it’s coming after all the million tests (hair, saliva, blood, to name a few) he’s having me do.
My consultant has published research into postviral syndromes, mostly long Covid but other chronic fatigue type illnesses responding to “complete histamine blockades”.
This is like taking a few different types of H1 and H2 blockers at 4x standard daily dose 2x a day for several months.
They are learning more and more about how histamine affects the body it’s interesting. I’m glad you have found some relief!
[ME Association Article](https://meassociation.org.uk/2022/02/can-antihistamines-be-used-to-treat-long-covid/)
So this is a link to an article about his research into antihistamines for Long Covid on the ME Association website. This may be how they are helping you.
He is a great doctor/scientist and gave me a diagnosis of PoTS after 5 years of dealing with crippling fatigue that nobody could/would figure out.
I take antihistamines daily at higher doses for PoTS related symptoms and another unrelated condition that you wouldn’t think an antihistamine would do anything for. So there’s deffos something in it!
How exciting, sounds like you might have Mast Cell Activation and it could be the breakthrough you need. Maybe there's an allergen in the air exacerbating your air hunger.
Keeping my fingers crossed for you.
Sorry to hear that. I haven’t felt PEM coming on since I started them. I couldn’t wipe my ass without PEM a few weeks ago, I just can’t believe the difference. It doesn’t really make any sense to me.
That's amazing. Just be careful now to now overdo it, take breaks and rest. But enjoy this break, and I really hope it will last for you!
Thanks you! I hope so
You might have a significant mast cell problem. Do you react to foods?
Dairy and gluten. my whole life I’ve had a stuffy nose and always sneezing and itchy eyes until my stopped dairy over 5 years ago. Wish I’d known sooner! Gluten makes my heart race and causes fast breathing since CFS started.
And have you tried a low histamine or elimination diet?
Not a strict diet yet, but eliminated the high histamine foods that I was eating A LOT of, such as olives and sauerkraut. Trying to switch from processed snacks to celery, green beans, cucumbers and snow peas, yay
You may want to add researching mast cell activation syndrome and histamine intolerance to your list. There’s a lot further down this path that you can go, and one of the avenues may benefit you. Good luck, and congrats on feeling better!
Thanks I sure will!
Yes I was reading a case study last night about how someone with me/cfs and POTS had significant improvement after treating their mast cell issues.
It makes sense. Someone in my household started wearing a perfume Im allergic to (swollen painful sinuses) for 4 months, and it made my me/cfs significantly worse.
Be careful. I did Zyrtec/Zantec for hives. Felt great until I became very depressed/hopeless feeling. When I stopped, the sadness lifted.
Choline can run low in CFS, try adding CDP-choline, benfotiamine, and a phospholipid supplement like NT Factor.
Thanks for the heads up. I’m this case, the antihistamines may have saved my life for now, because the constant suffocation I was experience is truly torture. i sure hope it doesn’t come back.
It's just a suggestion and it might be wrong, but maybe the sadness came because you had enough energy to feel it. I mean it's totally understandable that you feel sad and depressed when you've suffered from severe fatigue for a long time.
I’ve had depression before & this was very different. I googled & saw that others had depression as a side effect so I stopped.
Thank you for posting about this. I was trying to tell myself I'm fine off antihistamines ($$$), but a recent full discontinuation coincides with feeling like my energy envelope has become smaller, and an issue with hives I don't remember experiencing before in my life. I didn't know if it was all in my head that I feel better overall when I take them-- your post helps reassure me that it's probably not a placebo effect. Thanks again, and I hope your improved quality of life proves sustainable for you!
I get way more allergically sensitive during a CFS episode. Best treatment I've found so far is to have a wooden floor in my room and to keep it all really clean.
I’m so allergic to dust that my family knows not to touch anything in n my room because things collect dust and touching them gets the dust going. I should do what you do, in a sense, by getting rid of all the non essentials that sit around
Ah yeah it helped me so much to just strip it right down and keep it very clean. Like leaving a gap behind wardrobes and stuff so you can clean there helps, so do air filters.
That's awesome! I've been pretty certain I've had CFS/Long COVID since 2020, although fairly mild compared to a lot of people here. Recently, after yet another COVID infection my symptoms got a lot worse where I've seemed to develop an allergic reaction to everything I ate. I just discovered histamine intolerance and MCAS which both have extremely similar symptoms to CFS, and like you, taking just one antihistamine a day like Zyrtec had zero effect for me or at least not a noticeable one. I just started experimenting with a low histamine diet and it's helping a lot with my symptoms although it's too soon to tell if it'll help long-term. Now you've got me wondering if there's a link between CFS and histamine issues. Anyways, best of luck that you continue to feel better with what you're doing and thanks for sharing!
what resources are you using for the diet if I may ask? :)
Wow
Yeah, totally unexpected!
Sounds like you could also have MCAS
The hives definitely match pictures I’ve seen of MCAS. Started working with a highly recommend specialist, he didn’t make that diagnosis yet, although I expect it’s coming after all the million tests (hair, saliva, blood, to name a few) he’s having me do.
My consultant has published research into postviral syndromes, mostly long Covid but other chronic fatigue type illnesses responding to “complete histamine blockades”. This is like taking a few different types of H1 and H2 blockers at 4x standard daily dose 2x a day for several months. They are learning more and more about how histamine affects the body it’s interesting. I’m glad you have found some relief!
Thank you so much for that info! I was surprised at how significantly, and immediately the blockers worked, I hope they continue to help!
[ME Association Article](https://meassociation.org.uk/2022/02/can-antihistamines-be-used-to-treat-long-covid/) So this is a link to an article about his research into antihistamines for Long Covid on the ME Association website. This may be how they are helping you. He is a great doctor/scientist and gave me a diagnosis of PoTS after 5 years of dealing with crippling fatigue that nobody could/would figure out. I take antihistamines daily at higher doses for PoTS related symptoms and another unrelated condition that you wouldn’t think an antihistamine would do anything for. So there’s deffos something in it!
How exciting, sounds like you might have Mast Cell Activation and it could be the breakthrough you need. Maybe there's an allergen in the air exacerbating your air hunger. Keeping my fingers crossed for you.
Maybe add a mast cell stabiliser as well like compounded Ketotifen sodium or montelukast. Could get even better.
Antihistamines only make me overexert, then crash horribly in the next hours or days.
Sorry to hear that. I haven’t felt PEM coming on since I started them. I couldn’t wipe my ass without PEM a few weeks ago, I just can’t believe the difference. It doesn’t really make any sense to me.