Long covid, MCAS, fluid rentention, rash, bleeding

I am so sorry for your daughter and am grateful you are so involved with her care.

My comments, @sharonmcmillan , are my experience and may not apply. since I've never been treated except for symptoms.

Rashes, on my right ankle and inner upper right thigh, began with COVID in early April 2023. Oddly with it came a severely ingrown right big toe nail, something I'd never had before tho' the podiatrist thought it wasn't related, it too returned 3 times even after procedures. Both legs and feet swelled to a size I didn't know tho' the left leg had no rash. Two ER visits and different diagnoses (one: cellulitis; the other: we don't know but not cellulitis); to derm: "rash of unknown origin." Each visit resulted in different topical and oral meds, none of which helped. The rash continues to this day, sometimes worse, sometimes not - and yes, it has bled, mostly when I scratch it or the blisters break.

I was diagnosed with edema/lymphedema/lipedema - lipedema which they said was probably triggered by COVID because it's a hereditary disease tho' I had never noted it in my parents. Yes, mine flares with no apparent cause. The skin on my right leg no longer feels like mine.

In 2020, I traveled the first week of March to speak at a conference - from East to West coast and back, with a very long layover each way, so in planes, with people at a conference, and in airports. That was the just before lockdown, before we knew how the virus was spread. During the rest of 2020 and 2021, I had a tiny rash on both upper arms. I thought I wasn't moisturizing enough. In retrospect and with docs, it is likely I had very mild COVID [I was always exhausted and had sinus congestion after travel] that could have then, in 2023, been exacerbated by full-blown symptoms (not hospitalized) resulting in more rashes on right leg, and now, in 2026, on face. (Now thought to be possibly hormonal - it's like going through a second menopause - I'm 78 - with hot flashes and pimples!)

NONE of this may be at all what your daughter has nor may it be from any treatment. From all I am learning, COVID triggers immune systems that decide what they want to do independent of most studies. I posted separately this link to this article from The Guardian. Under it are more articles. We are a mystery and funding in US cut. We have to watch what others are learning. I have a google alert on "Long COVID" and find that much more is being done in other countries. https://www.theguardian.com/society/2026/feb/18/long-covid-symptoms-treatment

My wishes for less of this for your daughter and finding a cause to treat.
JE

I have had tremendously itchy rashes only on my calves since having covid in 2020. They erupt in anywhere from a pinpoint to a quarter size, run in a line down the calf so probably down a nerve, itch like crazy when erupting and can take weeks to months to heal. Mine are dark red in color and have a raised, dry surface...the first year or so it would create a shiny scale (like on a fish) that would flake off. I have been diagnosed with scleroderma then eczema then dermatitis then cellulitis so who know what it is. I have topical cortisone creams that contain the itching and have tried about 20 lotions/creams, OTC and prescription. The only cream to work as a preventative is colloidal oat cream from Canada. As soon as I feel a tingling, I put it on and the rashes does not appear. Now using it daily.

I have MCAS. The painful itchy spots last a long time and left scars. Full relief came by eliminating all high histamine foods. Difficult yet essential.

Thanks Robin. I am sure new functional medicine/naturopathic team will recommend low histamine diet. Did you have a lot of fluid retention and spontaneous bleeding?

Thank you. Will try the cream.

@sharonmcmillan
No. That sounds miserable.