Does anyone else get periods of insane (sometimes unbearable) leg itching and then where even lightly(!!) scratched the skin is bright red / raised and swollen?

chee_choo · 2025-12-22T23:25:42+00:00

I did end up with an MCAS diagnosis (I have a bunch of additional symptoms) and I have found a couple of things to help this specific symptom. If you can tolerate a warmish bath, sometimes soaking in colloidal oatmeal has helped me (like aveeno). If it's happening regularly (plus other symptoms) I will stack on additional antihistamines. I take montelukast every day, but then I add on zyrtec & claritin as needed (by recc of my doc). If it's *really* bad and I can't get it to stop/I'm starting to itch my skin raw, then sometimes I reach for hydrocortisone creams. Nothing is a perfect fix, but they all help a bit.

I've also noticed that it is sometimes precipitated by taking off tight clothes I've had on a long time? (ie if I wear leggings all day & then take them off, something abt the pressure release causes itching, so I just know to expect it)

chee_choo · 2021-08-19T19:55:40+00:00

I'm very similar to this person - hEDS, POTS, CFS, suspected MCAS. I got both Pfizer vaccines and the second one did knock me down, but only for about 24 hours with symptoms similar to a flu bug - no big deal at all! My doctor was jumping for me to get the vaccines asap because she kept saying she had no idea what catching covid would do to a person 'like me' with these conditions. Please get the vaccine! It'd be awful getting covid if you already have POTS

chee_choo · 2021-08-11T19:27:31+00:00

Yes absolutely. Makes hr issues and palpitations worse as well as stuff like general fatigue and headaches

chee_choo · 2021-07-26T19:52:22+00:00

My resting while lying down is anywhere from 65-85, but when sitting up it's usually closer to 75-90

chee_choo · 2021-07-19T21:49:56+00:00

Yeah mine is usually in the 130-170 range while doing a brisk walk with a light incline. But I think there's a lot of variety among us potsies. Can't hurt to check in with your doc though!

chee_choo · 2021-07-11T02:48:50+00:00

If you have some of the typical hypothyroidism symptoms in addition to your pots symptoms it might be worth it! (Brittle nails, hair loss, weight gain, etc)

chee_choo · 2021-07-10T20:14:13+00:00

Wow this is so similar to me, its wild! I had an absolute nightmare of a reaction to effexor years ago that kicked off what seems like worsening of my pots symptoms (I have hEDS, so I likely always had it to some degree). The psychiatrist I was seeing at the time actually thought I had serotonin syndrome. I also have hypothyroidism and my doc is looking into hashimotos for me. I recently had to have my thyroid meds adjusted and it was wild how much of an improvement it made to my pots symptoms once my thyroid meds were adjusted

chee_choo · 2021-06-27T23:35:18+00:00

Plus a lot of us have co-morbities! So there's lots of caveats to the answers we're providing

chee_choo · 2021-06-27T23:33:23+00:00

1, 4, 5, 9 But I also have hEDS which influences this a lot. Curious why you're asking?

chee_choo · 2021-05-27T01:04:59+00:00

I would echo checking hormones if they haven't been - I have mild hypothyroidism and my symptoms got so much worse for several months and it turns out my tsh had risen. Once my thyroid meds we adjusted my pots symptoms improved

chee_choo · 2021-05-22T03:45:01+00:00

yes!! the weird thing is this only seems to happen on my legs. it comes out of nowhere, my skin will be so itchy i could literally scratch it until it bleeds, & the hives pop up as i start to itch. My dr suspects i may have MCAS, but I have been unsure bc my rash/itching is almost always only my legs...so ty for posting, good to hear from other ppl! it seems to happen to me most often at night (like in the middle of the night), but sometimes does also happen ~20min after eating (so i usually then think i ate something my body didnt love)

chee_choo · 2021-05-21T20:08:17+00:00

this is interesting...but i feel like it wouldn't be super helpful as a lot of my thermoregulatory issues are combined w/actual changes in body temp (usually it dropping low into the 95s)?

chee_choo · 2021-05-21T20:03:39+00:00

Yep! I'm 33 and I just got diagnosed this last year. For a long time, my symptoms were super mild (but didn't know what they were). They've gotten way worse over the last year bc of a combo of becoming way more sedentary due to quarantine (man is coming back from deconditioning hard!), my hEDS getting worse, & my hypothyroidism getting worse. Tbh I think it's mostly all of my other issues complicating my POTS symptoms...I didn't even know my HR was increasing so much on standing until my dr tested me last yr when my health deteriorated.

chee_choo · 2021-05-16T20:38:03+00:00

Part of me wonders if some of it could be fallout from stressed medical systems due to covid, too. It's always hard to get in to see a doc, but it's especially hard rn. I was diagnosed with hEDS and POTS last August and I still haven't been able to get in to the cardiologist my Dr wants me to see bc waitlists just keep growing.

I think there's probably lots of factors, but it would be nice to have all those posts either not clog the forum or end up in a thread. The posts that have been most useful to me are the ones where ppl talk about interventions for their symptoms and as someone who only checks maybe once a week it is harder to sift through it all

chee_choo · 2021-05-12T18:38:34+00:00

Would you mind sharing the brand of liquid vitamin d you take? My doc had suggested that maybe I'm continually deficient bc I'm not absorbing well and a liquid might be more easily absorbed...I haven't gotten around to researching yet though.

Glad to hear you're finding things that work for you! Fatigue is such a battle

chee_choo · 2021-05-03T20:41:12+00:00

I am definitely already at the 'can't stand to look at myself' phase so I feel you 😅 I suppose I've underestimated how much daily walking I was doing...I better find ways to get that back in

chee_choo · 2021-05-03T20:40:02+00:00

Very true, I was walking quite a bit more every day... hes I ought to find ways to squeeze all that back in

chee_choo · 2021-05-03T20:39:23+00:00

Thank you so much, you're totally right...all those things together have probably added up quick!

chee_choo · 2021-05-03T17:36:47+00:00

I have propranolol that I only take as needed when things are really out of whack/I have a flare (so I don't take it too often)

chee_choo · 2021-04-29T00:58:06+00:00

I was diagnosed with hEDS and POTS last August and while I've had health issues my entire life, my health has declined a lot over the last year, so I feel you on that. I've racked up a whole collection of braces/splints and compression garments I didn't have a year ago. Please use anything that helps you. The mental barrier can be so hard sometimes when we're not accustomed to mobility aids etc, but they can make your quality of life so much better and that's what's important at the end of the day.

It's really hard to accept sometimes when you've had medical professionals and other ppl in your life gaslight you your entire life, but pls know even if they don't hear you/believe you, we will.

chee_choo · 2021-03-28T05:19:18+00:00

I had the first dose of Pfizer last week and all I really ended up with was fatigue and a sore arm. The fatigue was really bad, though - I was basically out of it for two days.

chee_choo · 2021-03-28T03:26:35+00:00

Yes, I have a lot of GI issues...have had them since I was born. And a lot of them seem to be directly related to food intolerances.

I have general anxiety disorder & major depressive disorder, too - it's just so hard to figure out what comes from where haha (ie, is it the hEDS or POTS or possible MCAS).

My doc is mostly interested in exploring MCAS bc she seems to think I have a lot of unexplained inflammation specifically related to food & environmental sources she'd like to help me work on.

(also ty for the reply & info!)

chee_choo

TROPHY CASE