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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be fed up having to explain this

50 replies

Battenburger · 15/04/2021 19:15

I have a skin condition. It looks exactly like chickenpox.

I’ve even had it wrongly recorded in medical notes from hospital appts that i had c pox !!
Wherever I go I feel stared at and people move away.
At baby groups I used to get parents moving away or the person running it on more than one occasion had a chat with me as ‘parents were concerned I had chickenpox’
I’m just embarrassed
It’s coming up to spring and summer and groups are reopening and I know it’ll all start up again I feel like I need to wear a badge saying ‘I don’t have chickenpox and I’m not contagious’

It looks so bad and I’m just fed up of it

I’m under a dermatologist but there’s very little they can do. Nothing so far has worked and I feel disgusting and it’s becoming a real issue

OP posts:
Maggiesfarm · 17/04/2021 15:46

I don't want to teach my grandmother to suck eggs and you have probably tried this but - Oil of Evening Primrose taken regularly and applied locally to the skin before a wound/rash breaks out and oozes, is wonderful. It is worth trying because if it doesn't help, it will do no harm.

Original poster
Battenburger · 17/04/2021 15:47

@Maggiesfarm

I don't want to teach my grandmother to suck eggs and you have probably tried this but - Oil of Evening Primrose taken regularly and applied locally to the skin before a wound/rash breaks out and oozes, is wonderful. It is worth trying because if it doesn't help, it will do no harm.
Thankyou I will try it x
OP posts:
Redannie118 · 17/04/2021 15:53

Have you ever tried taking any antiviral meds? Im wondering if its some kind of chronic herpes strain? Ihad awful coldsores for years and would get them all over the place on my face and they sound a lot like that. Ultraviolet light treatment is excellent too. Ive not had one for 15 years now. Can you afford aprivate consult for a second opinion? Or even just go to your GP and tell them you want a second opinion. Good luck to you, i have Scleroderma and my skin is awful, its horrible when people stare and whisper :(

Original poster
Battenburger · 17/04/2021 16:01

@Redannie118

Have you ever tried taking any antiviral meds? Im wondering if its some kind of chronic herpes strain? Ihad awful coldsores for years and would get them all over the place on my face and they sound a lot like that. Ultraviolet light treatment is excellent too. Ive not had one for 15 years now. Can you afford aprivate consult for a second opinion? Or even just go to your GP and tell them you want a second opinion. Good luck to you, i have Scleroderma and my skin is awful, its horrible when people stare and whisper :(
No I’ve not been offered anything antiviral. I’m so desperate I might just see if I can access a private appt I just want it to go. It’s sore and it’s unsightly and I’m dreading spring and summer again
OP posts:
Original poster
Battenburger · 17/04/2021 16:02

I had multiple courses of antibiotics as they get ‘infected’ with pus and red tracking from them but it didn’t help so I query were they infected they just follow their cycle and go after they’ve gone through each stage so it appears infected but I don’t think it is

OP posts:
ExplodingCarrots · 17/04/2021 16:07

I sympathise completely OP Thanks I have a condition called Polymorphic light eruption and it can look absolutely horrendous. And this is the time of year when it starts. It starts off as small blistery spots and eventually spreads and joins into a angry raised rash. I always get the horrified stares and 'omg what's that'. I hope you get it sorted. It took a while for it to be diagnosed and was a relief when it was .

MixedUpFiles · 17/04/2021 16:07

Btdt. Have to change privately at the gym because I scare people. My sores sound very similar to yours.

You don’t mention allergy patch testing. It’s a really obvious step so I’m surprised you don’t mention your results. They glue allergens to your body for two days and then read the results two days later. It’s absolutely awful, but it changed my life.

JulietMadeChutney · 17/04/2021 16:17

I am talking 100% anecdotally here...and I am not in anyway implying anything about anyone's housekeeping...but have you considered if a dust-mite allergy is making things worse?

The only reason I say this is that DH used to suffer horrifically from psoriasis. And hayfever. One year his hayfever was unrelenting into autumn and winter, rather than just the summer, and he had medical cover through work, so I booted him off for allergy testing. DH thought it was pointless.

Turns out he has a severe dust-mite allergy. Consultant never seen a reaction like it.

Since then we have dealt with the dust mites (specialised mattress and pillow covers not your bog-standard silent night ones), hoover under the bed and he uses a daily sinus-rinse to clean his nostrils. His hayfever is now negligible (which to him is a miracle after decades of suffering).

More importantly his psoriasis is 95% better. He still has the odd mark. But it is minimal. And he barely notices them. And the only change was treating/getting rid of the dust. We can only think that removing the dust-irritant/reaction has allowed his body to rest and cope with everything else so much better.

Anyway. Not sure if of any use...but so much auto-immune stuff is interlinked I thought I'd share.

JulietMadeChutney · 17/04/2021 16:24

X-posted. Really sounds like an allergy test may be a really good option here. Have you ever had one @Battenburger?

DungeonKeeper · 17/04/2021 16:27

Oh OP I do feel for you it must be so tough. One of mine had severe eczema as a baby and it makes me so sad looking back at pictures of him, I can’t imagine how you must feel.

I wonder if you need to ask for a second opinion or look for someone online who deals with more unknown skin conditions. How long have you been with the same dermatologist for? Are they part of a large centre? There must be someone out there who can help!

I’m surprised you’ve not had a course of anti-virals. Have you had bloods done?

Original poster
Battenburger · 17/04/2021 16:28

Yes I’ve had allergy tests I’m allergic to quite a lot some I knew prior to this dvd others after I’d always carried epi pens for shellfish allergy and have hay fever with tree pollen and allergic to cats and dogs
Also allergic to latex , avocado , fig
I take 2 cetirizine tablets daily as advised

I keep wondering if it’s an autoimmune issue as I have hashimotos but my levels are all ok so it’s a managed well. It did start very suddenly right after my son was born so I wondered if it was triggered by something ?

OP posts:
Original poster
Battenburger · 17/04/2021 16:29

@DungeonKeeper

Oh OP I do feel for you it must be so tough. One of mine had severe eczema as a baby and it makes me so sad looking back at pictures of him, I can’t imagine how you must feel.

I wonder if you need to ask for a second opinion or look for someone online who deals with more unknown skin conditions. How long have you been with the same dermatologist for? Are they part of a large centre? There must be someone out there who can help!

I’m surprised you’ve not had a course of anti-virals. Have you had bloods done?

Yes bloods done (a lot!) only thing it ever showed was anaemia and I had tablets for that and then it was better My thyroid levels are checked a lot and all ok. I think I may ask to try some antivirals
OP posts:
raspberryjamlady · 17/04/2021 16:32

Hi, my mum had a rare skin condition just like you describe, it is called Pityriasis Rubra Pilaris (PRP) and she had to get a biopsy done to get it confirmed, it was bad for a while but she made a good recovery.I hope you get to the bottom of it.

DungeonKeeper · 17/04/2021 16:37

I have hypothyroidism which was triggered after having my first. I wonder if there’s some weird and wonderful bloods you need doing that they haven’t thought of. It could be an auto immune thing. Also the thing with thyroid related issues is that quite often you’re told everything is within range and therefore you must be ‘fine’ when actually you feel like shit!

babbaloushka · 17/04/2021 16:38

I think a private appointment might help, I have a horrible looking skin condition too and the GP did lots of blood etc but wasn't keen to prescribe more than steroid cream and prednisolone when it flared up.

babbaloushka · 17/04/2021 16:39

Have you been offered Montelukast?

MixedUpFiles · 17/04/2021 16:41

Just to be clear though, did they test you for allergies like balsam of Peru, fragrance, sLS, basically all the ingredients in skin care and household cleaning products. Those are tested differently than the skin prick tests and have to be left on for 48 hours.

MixedUpFiles · 17/04/2021 16:42

I would also ask of it might be a variation of eczema and if you might benefit from a trial of a drug that in the United States is called Dupixent.

Original poster
Battenburger · 17/04/2021 16:55

@MixedUpFiles

Just to be clear though, did they test you for allergies like balsam of Peru, fragrance, sLS, basically all the ingredients in skin care and household cleaning products. Those are tested differently than the skin prick tests and have to be left on for 48 hours.
Yes I had 2 sets of different tests. Food ones and pollen / dog cat etc on my arm and another set on my back there was about a year in between these tests
OP posts:
JulietMadeChutney · 17/04/2021 16:56

@DungeonKeeper

I have hypothyroidism which was triggered after having my first. I wonder if there’s some weird and wonderful bloods you need doing that they haven’t thought of. It could be an auto immune thing. Also the thing with thyroid related issues is that quite often you’re told everything is within range and therefore you must be ‘fine’ when actually you feel like shit!
Oh yes. This. And the stuff that can impact on your uptake.

I have recently had the implant and started to feel like death again. got an online cocktail party tonight...fuck knows how I am going to stay awake. Googling has revealed to me that progesterone can inhibit your thyroid uptake. So is probably why I feel so bad. Why do GPs not know this! Or more, why do they not tell us!

HarrietHardy · 17/04/2021 16:57

You need to see a different dermatologist. It's really poor practice for you to have been left like this.

You can ask you GP to arrange a second opinion, or PALS.

Ifixfastjets · 17/04/2021 18:54

My dd had a coeliac test, which came back negative. She is allergic to wheat, but seems ok with other forms of gluten.

When we were trying to work out what she couldn't eat, we were told by the dietitian to cut out a suspected food/group for 6 weeks. As it can take the body this long to be free of some things.

Have you had any blood sugar tests ?
Wounds take a lot longer to heal for diabetics.
That's an easy thing to check. It wont solve the issue of them appearing, but they might heal faster.

And lastly, have you tried honey on the wounds? Honey is supposed to be super magic for healing. It was the only thing that helped when dd totally skinned both her knees.

We did get dd some badges saying "I cant eat wheat" when she started school.
They were very cute.

Mumoftwoinprimary · 18/04/2021 08:10

Off the wall suggestion but any chance it could be chicken pox?

Dd’s Rainbows leader has had chicken pox over 30 times. For whatever reason she can’t make the antibodies to it so she catches it every time she is in contact with it. (And she works with little children so is in contact with it a lot!)

DungeonKeeper · 18/04/2021 09:36

I wouldn’t be happy with a dermatologist saying there isn’t much they can do. If it’s beyond their expertise I would expect them to refer to someone who potentially can do something.

Tanaqui · 18/04/2021 12:55

If you have hashimotos, you should definitely look into going gluten free, it is usually advised.

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