Itchy head, face, neck, and shoulders

Husband of

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Hello friends,

my wife for some weeks now has had itchy little 1-3 cm scalyish rashes on her neck and shoulders, which are becoming more prevalent (started as one and now she has several), along with itchiness in surrounding areas, plus itchiness on face and neck although no obvious rash there ( her face does look kinda flushed around the cheeks and nose). The level of itchiness, including where there is no obvious ra, is also getting worse.

possibly coincidentally she has had a rubbery lump above her right collarbone which could possibly be where her right supraclavicular lymph nodes are but also it might not be quite the same place.

Also it’s winter - just had shortest day, and she is at home with heat pump blasting all day.

any thoughts on the itchiness? Has anyone else had this?
 
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Husband of

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Now she has a bigger, but less intense looking , rash on stomach. It’s spreading exponentially it seems. It was just one blotch for a few weeks but then a few more weeks and now she has new rashes appearing daily
 
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does it look anything like the rash people sometimes get with epstien barr? i get itching like you describe but now days no rash. i did get the epstien barr rash when i first got sick with it due to antibiotics and in retrospect i got a rash much like it a number of times in the 5 years after that maybe a little more than 5.
 

lenora

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Hi @Husband of.....I'm sure you've thought of this, but has she tried any new medications? This is often a sign of allergic reaction and her Dr. should be notified.

A longshot, but one that has brought relief to many is the fabric softener used. One of my daughters had a terrible problem when she was a child, and here it was the fabric softener sheet (l/3rd of one) while drying clothes. It went away when I stopped using them. Now I just use the wool balls as softeners.

I had a no. of cases of shingles a few years ago and became allergic to absolutely everything. I now use a bio laundry detergent, said sheep balls and had to stop using my usual soap and shampoo. I used Ivory soap for showering and even for washing my hair. After the attacks, I was able to very slowly add one product after another back in. I'm very fair if that's any help.

If she isn't on meds and this continues, then she needs to see an allergist or dermatologist. Allergies can arrive at anytime in life....I used to have one, but as we age our immune systems often fail. If allergies are the problem and can't be helped, then a small HEPPA air purifier in each most used room is very helpful. Also as filters for your furnace. The list of things we can be allergic to is endless, including inside the home. Yours, Lenora
 

Husband of

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Thank you everyone.

the thing that makes me doubt allergies is I would have thought it would go away, and then maybe come back in a different place, if it were allergy related. Instead, it started as a single blotch (around 2cm wide) around a month or more ago and that blotch is still there but more have come along, none of which have gone away.

she isn’t in any meds at all, and she hasn’t been taking any supplements consistently over that time (omega 3 would be the most consistent); maybe she has reduced her vitamin c intake . No new food habits that I can think of. We definitely have had new shampoo and conditioner around that time ish but would you expect the rash to come and go rather than stay?

here are pictures of some of the rashes.
7DDE276C-1D00-4988-9F03-422C7A716BDA.jpeg
265C8471-1205-4DB0-A774-65FB74BB39CF.jpeg
FC626801-5FBA-4CEE-B4E1-2CF4DC991CC7.jpeg
 

Husband of

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@appa it doesn’t look like typical mono rash but thanks because I didn’t even know that was a thing ;I did see one case report of a mono rash that looked a little bit like it so I guess it is possible.

@lenora , thanks, see post above plus we don’t use fabric softener but will try different washing powder

@vision blue see post above plus what is a malar rash?

@Crux looking up the phosphorous thing now
 
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Pityriasis rosea?
Lyme?
more remote: ringworm
still could be allergy
What do the derm sties say? do they help narrow it down?
malar rash = a lupus rash- look it up
What does a derm say? you'd want to go before it fades
Is the swollen thing a bite? is this a parasite?
Does your wife have CFS? any AI conditions diagnosed? I assume that's (CFS) why your on the list but i haven't seen your/her other threads yet- haven't looked
 

Husband of

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Pityriasis rosea?
Lyme?
more remote: ringworm
still could be allergy
What do the derm sties say? do they help narrow it down?
malar rash = a lupus rash- look it up
What does a derm say? you'd want to go before it fades
Is the swollen thing a bite? is this a parasite?
Does your wife have CFS? any AI conditions diagnosed? I assume that's (CFS) why your on the list but i haven't seen your/her other threads yet- haven't looked
Thanks.

No diagnosis of autoimmunity. Not sure how to get that.

It doesn’t seem like there is any chance of it fading given the first blotch has been there for over a month and she has much more recent one's, but have a doc appointment Tuesday so hopefully they will refer her to a specialist.

pityriasis rosea sounds possible although the mother blotch in her case isn’t as big as what “usually” occurs with pityriasis rosea. Also interesting that they think pityriasis rosea might be caused by hhv 6 or 7 and there have been studies showing a higher prevalence of hhv 6 antibodies in pwme.

we live in New Zealand so unlikely to be Lyme; I think we’ve had one case ever and they had recently been overseas. We haven’t been overseas recently

yes she has had MECFS for one year. Doctor says she suspects long COVID but my wife got sick at a time when there was no COVID detected in the community so I think the doc just wants to diagnose as something that is taken more seriously and for which treatments are more likely to become available. When we press her on it she says that she reckons there was COVID that wasn’t being reported; however, in many towns/cities they were testing the sewage for it so it seems unlikely.
 
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And doesn't look like lichen planus.
Please post what the MD says about it - interesting.
yeah, why not, grab the long covid diagnosis!
Some AI things can start with PR, so those should be on radar too. If you say they never tested her for it in the course of her illness , then def ask the doc on tuesday (there's a whole panel they can run, starting of course with ANA, but others too)
what's her blood work been like so far in the last year? Sed rate (ESR) normal?
 

Husband of

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And doesn't look like lichen planus.
Please post what the MD says about it - interesting.
yeah, why not, grab the long covid diagnosis!
Some AI things can start with PR, so those should be on radar too. If you say they never tested her for it in the course of her illness , then def ask the doc on tuesday (there's a whole panel they can run, starting of course with ANA, but others too)
what's her blood work been like so far in the last year? Sed rate (ESR) normal?
All the blood tests are in normal range, but no esr test has been done, and platelets are very close to the high end of the range. I’ll ask doc about autoimmune testing, thanks
6BB3D0F1-6978-4B7D-983E-1CAFA4197879.jpeg
 
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i hope someeone else on list chimes in since thre's some condition with high platelets that may be relevent here - am spacing on it. (i'm assuming she's not bleeding a bunch despite the good rbcs.)
the WBC seems on the higher side but then again if she's young, it may just be that.
surprised they didn't run an ESR (SED) to give idea of inflammation (or an hsCRP

bloods before the rash?
 

Husband of

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We’ve only recently got the app that allows us to see test results unfortunately, so the only results I have are since after the first blotch of rash appeared.

We got the tests for MECFS reasons and because we were concerned about lymphoma or lung or esophageal cancer on account of a rubbery and growing lump that we thought might be a right supraclavicular lymph node (not sure that it is actually in the right place to be a lymph node by the doc neither confirmed nor denied the possibility and ordered some x rays to look at chest and the lump - dont know what if anything the results of those x rays imply)
 
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Sp the doc had no idea what the lump was? Didn't give at least a set of possiblities? I'm sure she can at least tell if its fluid under there or if tis movable or fixed (I think fixed worse than movable) Sounds like she also did see the rash? Frustrating health care- but frustrating everywhere. Maybe push her to share what she's thinking and the possiblities? Are you going to push for a needle biopsy? or for a derm referreal? or both?

Sorry, I guess I'm not being helpful If you have a link to any post youve made om the whole history , post the link if you get a chance. Maybe if enuf of us look at it, youll get somewhere. I'm bad with anatomy- i'm sure another list member can tell you what's right there.

If her short term memory is fine, one wonders if she;s had something all along this past year that has nothing to do with CFS.
 

lenora

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Insofar as memory goes, not everyone with ME has problems. Mine was fabulous until I had autoimmune encephalitis (I'm also 75, so take you choice).

I have since recovered a lot of my memory, very disciplined about reading...even began with things that I normally wouldn't go near. If I have to read a page or two twice, that's exactly what I do.

I suffered from ME/CFS/FM for approx. 30 yrs. before this memory problem became active. Out of interest, my husband will soon be turning 78 and has the same problem....so perhaps it's just age related.

@Husband of....I do hope you'll soon have some answers. It's worrisome, although I find that I tend to worry less probably b/c of age. You do what you can, and leave the rest for another day. Good luck. Yours, Lenora
 
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any thoughts on the itchiness? Has anyone else had this?
Yes. I was plagued with odd rashes and itchy, welty things for months at a time during the early days of my really bad decline into ME. It could be an MCAS reaction of some sort, or as @appa mentioned, a EBV rash.

I wasnt aware of the hyperphosphatemia that @Crux mentioned either. It would probably be worth looking into, just to make sure. High levels of phosphorus can affect your body's ability to effectively use other minerals, such as iron, calcium, magnesium, and zinc. Generally, we're constructed to eliminate any phosphorus that isn't needed by our bodies quickly and efficiently thru the kidneys.

@vision blue mentioned the different composition of lumps that can superficially sort them out between 'dangerous' and 'probably not'. Movable lumps are almost definitely not lymphoma tumors, which usually produce firm, unmovable, painless lumps. The malar rash she referenced is also sometimes called a butterfly rash, and can be a sign of rosacea or possibly lupus. It would be a good idea to eliminate the possibility of lupus, however remote that possibility might be ...

Your wife's blood tests look pretty normal, except for the high 'normal' range of platelets. High platelet counts can cause too much clotting in your blood vessels. Or it can cause too much bleeding if the platelets interfere with clotting. It could be a sign of immune system issues, and might also explain the strange bruise-y looking rashes. Infections are the most common cause of a high platelet count , which might bring us back to a reactivated Epstein-Barr virus.

Except for the input re lymphoma (been there, done that, not going back if I can help it), this is largely speculative, but it's intended to ease your worries pending other input ....:):) :hug:

 
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We'are al ; zebra hunting. One wonders why docs don't seem to figure out even simple stuff anymore.

Hopefully when husband is at the docs next week , he can also ask for copies of all past labs. maybe if you need a release form, you can fill that out now, and so records ready to pick up at the visit

hyper...somethhg, name of the platelet thing on tip of tongue

could ask for a PT or PTT if there's a clotting concern or issue. maybe a chem panel would shed more light

no evidence of ebv that i see, unless the OP's wife had some kind of history there I'm unaware of.

not enuf to go on yet
 

Crux

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Excess phosphorus with low calcium. magnesium, and vitamin D intake can result in elevated PTH, elevated FGF, etc. , as the body tries to balance itself.

This may result with calcifications of the vascular system, joints, skin, etc. These calcium phosphate compounds are even found in dental plaque.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8301440/

" It has been shown that feeding nephrectomised rats a high phosphate diet even after a short time (two days) results in a significant increase in serum Pi and intact serum FGF-23 and PTH, as well as a significant decrease in ionised calcium [79]. PTH increases [Ca2+]i levels, resulting in Ca2+ overload in platelets [80] and cardiomyocytes [81]. "

I wonder if this applies to human platelets, and if this process elevates them.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8437092/
 
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@Crux If that turns out to be the explanation, i'll come back and give you a bunch of likes..I'd eat the proverbial hat as well, if can figure out what that might be on here.

NOt a mechanism on my radar but will mention a few months back i started drinking oat milk. The brand has a bunch of phosphorus. i'd guess Previously my intake of such things was at zero- never have soft drinks etc.

For about a month i felt really good from the oat milk. Started wondering if i had some phosphorus deficiency. But then...started making me sick. mostly bad digestive upset but i think other things too. I've poured out 3 containers thinking they must be bad since never happened before.. (there's two types of packaging, one is "shelf stable" and entertained - falsely- maybe it was that). Anuyway, right now staring at an unused mostly full container and will have to spill out for the last time and not get again.

I just had blood tests and think my calcium is higher than usual- will have to check again.

Have you had personal experience with calcification from phosphorus?