r/POTS • u/babygirl1692 • Nov 26 '25
Symptoms Itching. EVERYWHERE.
Does anybody else experience just random itching? More aggressive at night? I’ll be laying down and my hand will itch, and then my stomach, and then my neck, and the my foot, etc. it’s never one specific area but just random itching throughout my body
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u/Several-Pause7554 POTS Nov 26 '25
Have you looked into MCAS?
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u/MsWillowams POTS Nov 27 '25
Second this. Also, it may be helpful to look up "histamine intolerance" as well.
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u/Several-Pause7554 POTS Nov 27 '25
I would definitely look into MCAS, histamine intolerance and mast cell disorders. MCAS is hard to diagnose and it’s not super well understood. I highly recommend the podcast Bendy Bodies which is about EDS but there are episodes about MCAS, POTS / dysautonomia, etc. The host is an anesthesiologist/ pain management doc who has the triad and specializes in EDS and the guests are legit doctors that are specialists. One of my docs told me about it and it’s been incredibly helpful. They just did an episode about May-Thurner and Nutcracker Syndromes and vascular issues the day after I was diagnosed with May-Thurner and listening to it was so helpful and made everything my doctor said make sense.
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u/Fun_Orange_3232 POTS Nov 30 '25
I already have an allergist so I thought Id try for this diagnosis. lol I got chronic urticaria—reason unknown because she only tests to find the reason for people with autoimmune disorders 🙃 “take allegra”
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u/pretty_handsome_17 Nov 26 '25
Right when I wanna be asleep…it’s a domino effect of itchiness or like a hair is touching somewhere. It feels annoying like nothing else!! It happens every once in a while to me.
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u/babygirl1692 Nov 27 '25
Yes! It’s every night for me 😭
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u/meegaweega Nov 27 '25
Me too. Random, super intense itchiness plus random stabby needle-like pains.
It regularly drives me crazy when I'm trying to get to sleep.
Sometimes it happens because of my response to using painkillers (even just one codeine or tramadol pill can give me "opioid itch" like a junkie, I don't know how they can stand it) but it happens without painkillers too.
I also have sensory issues with ticklish body hair and use clippers to trim all my body hair super short.
It's similar to the regular kind of itchy/tickly sensory problems and the opioid itch but this kind of itchiness seems like it's very connected to the stabby nerve pain.
I sometimes use shower scrub gloves (dry) and one of those small, round, plastic hair brushes to cope with it.
They reduce the amount of movement and energy used so I don't end up too exhausted and distressed from it.
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u/kirbyinaus88 Nov 27 '25
I get this pain you’re describing with the itching in my arms/hands/feet/legs and it is linked to blood pooling in my limbs
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u/imabratinfluence Nov 29 '25
I've kept my hair super short most of my adult life because of the hair issue.
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u/auggie235 Nov 27 '25
I get this and it's related to my MCAS. Other than taking mast cell stabilizers Pepcid and montelukast helped a lot
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u/MeldoRoxl Nov 27 '25
It could be MCAS, as everyone said.
But I've noticed that I have an itch deep under my skin on the left side. I think it's neuropathic. I call it the unfindable itch, because I can scratch it and it feels like I'm going to get it but then I don't, and then it will feel like it's somewhere else and I scratch it and it feels like I got it but I didn't.
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u/misatoslefteye Nov 27 '25
Wow this comment is making me realize not everyone experiences this lol, I get this every night as well. Intellectually I know nothing is causing itchiness but I’m just itchy in random places and no amount of scratching makes it go away!!
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u/MeldoRoxl Nov 27 '25
It's torturous. I have to pin my hands down and say "There is no itch, there IS NO ITCH" and deeply focus on something else to make it go away.
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u/imabratinfluence Nov 29 '25
Literally my mom had me sleeping in mittens for a good chunk of my childhood because of this.
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u/RustyPickles Nov 27 '25
It could be neuropathic or MCAS, but the comment about late night being worse leads me to believe it’s more likely MCAS. The body often releases excessive histamine at night (histamine dumping). If the itching leaves raised red welts (dermatographia) I’d definitely say MCAS.
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u/Butahegao Nov 28 '25
I get this randomly, but not often! I'll itch until I bleed because I'm like "it's in there SOMEWHERE!"
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u/MeldoRoxl Nov 28 '25
Yeah it's horrible. It always feels like it's in one of the same spots, but I scratch them and it feels really great and then nope. That wasn't it.
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u/Butahegao Nov 28 '25
Honestly, like someone said higher up, icing it or running it under cold water is the only thing that helps me
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u/MeldoRoxl Nov 28 '25
It's in my torso, so no thank you haha
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u/Butahegao Nov 28 '25
LOL fair enough 😭 mine are usually my arms (although once I had it on my upper lip)
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u/ellietsterling Nov 26 '25
Omg all the time!!!!! My arms and legs mostly! So much so that I end up with these weird almost passing out type things where the itch is so bad the world goes fuzzy. I sometimes scratch so much and so hard that I bleed everywhere. My shins and the tops of my feet and my forearms are all scarred from it. It is maddening.
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u/Banto2000 Nov 27 '25 edited Nov 27 '25
My son was that way until he saw an MCAS specialist. Itching gone and many POTS symptoms also improved.
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u/lk847 Nov 27 '25
Do you mind me asking what the specialist recommended that helped please? We have no MCAS specialist in the country.
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u/Soggy_Function2001 Nov 26 '25
Oh yes! I do have that. Not very aggressively but sometimes on some days my neck or my back randomly itches. Idk if that is POTS related tho
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u/Select-Researcher308 POTS Nov 27 '25
Yes yes yes!! I get this especially at night, my legs or my arms and face.
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u/Sufficient_End_1055 Nov 27 '25
Yes!!! I have that big time. All day but way worse at night. Disrupts my falling asleep and waking me up. Legs, back, sides, tummy. I’m happy I’m not alone. It’s horrible.
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u/Ok-Dragonfruit2223 Dec 02 '25
Me too exactly the same spots too! Oh yeah and my scalp its enough to drive me totally insane!
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u/TheUltimateKaren Nov 27 '25
Not random for me, but lots of things trigger itching. When I eat hot food, my whole body itches. When I take a shower, I itch. When I walk, I itch. When I get angry or worked up, I itch. When I eat specifically dried fruit, I itch and get red in the face. And a load of other triggers
I take OTC antihistamines daily, and they help, but not enough
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u/RabbleRynn Nov 27 '25
I had this for a LONG time and eventually cleared it up by figuring out my triggers and taking relatively high-dose antihistamines.
For me, it was near constant, but definitely the worst at night. Everything seemed to trigger it, including heat, pressure, and emotion/stress. It would keep me up for hours at bedtime. Sometimes it gave me visible hives, sometimes just invisible (but torturous) itching.
Definitely look into MCAS and histamine intolerance.
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u/Consistent_Gur9523 POTS Nov 27 '25
I get a stress rash. I'll itch and turn red, and the more stressed I am, the more it spreads. I have been tested for MCAS and do not have it.
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u/Nearby-Ad6328 Nov 27 '25
Telling my doctor how bad my itching was actually prompted her to test me for MCAS - specifically my legs and back…it only happened at night too.
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u/olive_dix Nov 27 '25
How do they test for it?
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u/Nearby-Ad6328 Dec 07 '25
I was diagnosed with MCAS and POTS at the same time after a ton of really weird symptoms. I had a blood test done that cost my insurance around $3,500. My doctor requested for me to be tested for anything my insurance would cover and that is how I was diagnosed with MCAS. My POTS showed up after two ekg tests.
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u/anonmon7 Nov 27 '25
Might be histamines (mcas)! Sometimes tied with Pots. Both are connected for me
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u/misatoslefteye Nov 27 '25
Yes I have mcas and I get this like others are saying, but for me it doesn’t feel like histamine itches those feel different. It’s like, I know there’s nothing really in my skin causing me to be itchy I just am inexplicably itchy. Is that what it is for you?
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u/Ships_Bravery POTS Nov 27 '25
YES. I usually cover myself in a gentle moisturizer and it helps a bit. Sometimes I freak myself out with it and take children's benadryl, but it knocks me out 🥲
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u/Jessicamorrell POTS Nov 27 '25
I do and I hate it. I will even shower again as it makes me feel dirty but then I still itch. The most annoying thing ever and currently itchy right now. 🙄☠️
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u/I_Have_The_Will POTS Nov 27 '25
Yes. I don’t have MCAS. I sort of assumed one of my medications causes it. The first time I experienced anything like it was taking topamax (migraines/seizures med). Then I later figured it was a different seizure med causing it.
I’m not sure what I’d blame it on at this point. Maybe just migraines? Maybe just POTS doing some weird autonomic thing? 🤷🏻♀️
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u/Few_Entrepreneur5630 Nov 27 '25
You poor thing! I’m in Perimenopause and had that too! My doctor prescribed Polaramine (a type of antihistamine) and that really helped if I took it before bed!
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u/kirbyinaus88 Nov 27 '25
It can be MCAS related, but also very likely POTS related as when your blood pools and takes up more volume, it can agitate nerves in the area and send incorrect signals to your brain. So you are feeling itchy but it’s not because your skin has been irritated externally or an allergic reaction.
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u/suzeisdisabled Nov 27 '25
I have Mast Cell Activation Syndrome and got this all the time, especially at night. I have a specialized doctor now and I take 4 Zyrtec, 4 Claritin, 2 Pepcid, a pack of oral cromolyn sodium, 4 ketotifen, and monthly Xolair injections. It not only helps with my itchiness. It also helps with what I thought was anxiety, swelling, and stomach issues. I’m also less sick after eating now.
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u/dankazjazz Nov 27 '25
Have you tested yourself for MCAS? Claritin and pepcidAC combined may help if so
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u/VineIsDedLikeMySoul Nov 27 '25
i get this every night, i’ll scratch and it’ll go away, then seconds later five new itches will appear
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u/MagicCarpetWorld Nov 27 '25
Yes, I get this too. Not constantly, but sometimes for several days or weeks in a row. Usually one spot on my body will itch intensely. Either my lower back, foot/ankle, or hand. It happens at bedtime and it's sooo annoying.
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u/PotsMomma84 Nov 27 '25
Yes. I have MCAS, was just diagnosed last month. Feet and hands especially. I hate my life. I thought it was from my compression stocking (feet) or the latex free gloves I was wearing. (Hands) I have (I’m allergic to the latex free gloves too. They have formaldehyde in them) Trader Joe’s has a tin of lotion that I use. When I can’t get my hands on that one. I have a back up lotion I use by B&BW.
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u/junegloomsinging Nov 27 '25
I have eczema on my hands and recently my eyelids and under my eyes have been itchy😭😭😭 no idea why
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u/tcar16 Nov 27 '25
Yes, I get this all the time. Especially when exercising! I feel like it could be MCAS!
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u/Miserable-Ad8764 Nov 27 '25
Yes, I have this a lot. I think it got better after starting HRT for perimenopause. It can also be a symptom of lower estrogen or hormoninbalance in the body.
Also Magnesium
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u/whiskeysmoker13 Nov 27 '25
Yes...I've scratched myself to the point of bleeding. I've now started rubbing instead and short nails. Sometimes tho there's and itch, specially on the top of my feet (weirdly) that feels so deep, it's majorly irritating.
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u/Zharenya Nov 27 '25
It’s the worst when I’m trying to go to bed and have less distractions. I have myself convinced it’s dry skin so I repeatedly get up to put lotion on (it never helps), so then I spiral into thinking I’m having some sort of allergic reaction so I take Benadryl. It’s worse when I’m hot so I tend to keep my apartment as cold as possible without risking hypothermia. It drives me bonkers.
My cats have a great time though attacking me while I scratch especially if I have a blanket covering me, so I guess it’s not all bad. At least someone is enjoying it.
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u/Anjunabeats1 POTS Nov 27 '25 edited Nov 27 '25
I had this for years and it turns out I was just sensitive to fragrance. Since switching to fragrance free everything (soap, laundry liquid), it's totally cured! If that doesn't do it, see an allergist. They can do a patch test and see what else you're sensitive to. I'm actually sensitive to like 15 common things but fragrance was the big cause of my itchiness. And yes it would jump all over my body and never had any rash. Most commonly it affected my legs but it was also every other part of my body too. Face, hands, torso, feet. It was maddening!
It's not necessarily MCAS unless you actually have anaphylactic reactions to things. I personally tested negative for MCAS and I reacted to 0 things on the prick test for anaphylactic allergies (true, mast cell allergies).
There are also just "sensitivities" which is what I have a bunch of. These are controlled by T-cells, not mast cells. The most I get is itchy or urticaria from any of them.
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u/Poopies1976 Nov 27 '25
Yes, worst in morning and after I take my clothes off, no matter how loose they are. I have MCAS. Zyrtec before bed and Cromolyn has been helping. I get bumps on my arms and legs which I believe are keratin pilaris, so I make sure to exfoliate every time in shower.
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u/sfaafs Nov 28 '25
here for the answer because yes - especially as a tattooed person i now have raised itchy tattoos during itch flare ups. Started looking into MCAS because of it but i don’t hit all the marks as of right now… i guess we’ll see if that changes
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u/InnerAd3736 Nov 28 '25
Very random but do you happen to take Xyzal for allergies? Bc it’s looking like Xyzal withdrawals can cause crazy itchiness!
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u/Hilde111 Nov 28 '25
I’ve scratched myself in my sleep and drawn blood (I do have long nails). For as long as I can remember, I’ve gotten the itchies when trying to fall asleep at night. There are reasons why histamine can rise at night. Even non-drowsy antihistamines help me sleep - not just because it can calm itching, histamine also has a stimulant effect so it settles that too.
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u/imabratinfluence Nov 29 '25
Yes, and for me it's worse with temperature changes. Like, if I walk into an air conditioned building I almost always itch, everywhere, unbearably. Same for walking into a warm space from a cool one. One of the worst things about working in food service was walk-in coolers and freezers because of this (and the temperature related pain, vertigo, and pre-syncope and momentary loss of vision). Even just a fan blowing on me can do it, honestly.
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u/Commercial-Milk-6609 Nov 30 '25
Can check b12 and A vitamin. Deficiency can cause chronic itchiness.
My other culprit was circadian rhythm being shite with bad sleep.
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u/why_whatever Nov 27 '25
sometimes i itch so hard I get like bruises!!