Author Topic: Revisiting old topic severe skin discomfort  (Read 452 times)

Honeybee

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Revisiting old topic severe skin discomfort
« on: February 07, 2021, 12:49:38 PM »
Hello chaps
Revisiting an old topic which sadly after nearly Two years still persists.
I posted back in June 2019 reporting sudden onset skin discomfort in the form of both intermittent itching and constant feeling as if even my softest of clothing scratches me.
Having made many extensive and indeed expensive alterations to my life, it still persists.
I have spoken to a dermatologist who initially felt it was urticaria but I have to say it did not really fit the clinical picture with no raised welts etc. Antihistimines do not help the slightest or even touch the constant skin scratchiness . After this started I used e45 which is an paraffin based emoillient just to act as a barrier. This started to sting the skin last Jan(suspect alcohol content in commercial moisteriser) so swapped to sweet almond oil which was gentler. Still unable to get back into normal clothing or use normal bedclothes.
Fast forward to the end of December and I got the mild non raised red rash I got the first time this started and then the crazy itching on top with a heightened skin irritation on top of exixting. So think I am flaring within the flare, although is it a flare if it never really went?
So miserable as sitting here looking rather dull in an old silk skirt, arm warmers made of silk and a loose lined silk top. Snow on the ground, urghhhh.
Heating is a no no as it was with my eyes originally.
I have tried an antihistamine diet as I do have IC, but there has never been any change. What did happen was I got lazy one
week and was so busy I did not apply my oil every other day, I also had a general anaesthetic at the same time?
So basically I am wondering whether this, what I now suspect to be a sjogrens related skin thing, has been aggravated by the above factors. Interesting my skin does not flake or peel particularly but if you look closely it is dry, I have always had dry skin but it didn't become uncomfortable until 2019.
It is actually quite life changing oddly as I was always a super quirky little boho kind of girl and I have had to wear only loose baggy silk lined tops and baggy trousers.
The bags of my legs are very uncomfortable indeed so even my baggies are annoying me.
I really am suspecting Sjogrens after all of this time. I have asked for more blood tests which I think are prob fine as have not heard.  I was originally low in iron so took iron but it didn't change the sensation and I had a low tsh but with normal t3 and t4, so no help there.
Is anybody else in this predicament? I know one lady was and I need to try to contact her but wondered about the skin sensation in particular. My rheumatologist simply didn't know and we do not think it is neuropathy as it does not fit that pattern of discomfort. possibly the deeper layer of the dermis is just dried out to a severe level?
Have tried most creams but I think it still needs another approach...?.
I have been offered a vaccine but am holding off for a couple of weeks...?
Honeybee x

meirish

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Re: Revisiting old topic severe skin discomfort
« Reply #1 on: February 07, 2021, 10:17:53 PM »
When I was in nurses training at Rochester, MN I spent a lot of weeks on Dermatology and even extra time as I loved that department. You remind me of some of the patients we had back then. Remember, this was back in the 60's and dermatology issues haven't changed that much over the years. Probably just more of them as there are more autoimmune patients and more chemicals out there.

I would think that there has to be a dermatologist around somewhere with good training. When I was in training Mayos had the largest deem hospital derm unit in the world so I saw saw some interesting stuff. One thing I remember is people with dry, itchy skin that would get a little thick. They used some topical medications on it that required wetting the skin slightly first, applying the topical ointment or cream and then wrapping the area with saran wrap. Sometimes the person would be wrapped everywhere but the bottom and the face.. Also, used steroid creams and oral steroids a lot. Have you been on oral steroids with relief of this??

I will add that Mayo clinic has some good doctors and some specialities are better than others like everywhere else. They have been good at dermatology so I would not count them out as a possibility for help down the road. I trained at Methodist Kahler hospital in Rochester. There is also a huge St. Mary's Hospital there also. The Mayo clinic is a separate huge clinic whose doctors are on staff at both these hospitals.

Just to explain how it works. Many people think that Mayos is a hospital but it is a huge, huge clinic. Just some thoughts for you. Just wanted you to know that there are a lot of options out there for skin issues that many private practice dermatologists aren't always aware of. The best thing one can do for themselves is to seek advanced treatment for skin issues before they get so bad that they are hard to contain and improve. Take care and good luck. meirish

araminta

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Re: Revisiting old topic severe skin discomfort
« Reply #2 on: February 08, 2021, 01:59:39 AM »
This sounds like a very distressing condition, I'm so sorry you're still suffering with it.

Of course I have had problems related to dry skin, but not this particular one.   There's some good advice from meirish above, and I wondered if you'd ever tried online forums for skin conditions (I guess there must be some), as I've found forums almost more helpful than doctors for a variety of problems!

I presume you've already considered side effects of any medications you might be taking, also the products you use for washing your clothes etc.

Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Honeybee

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Re: Revisiting old topic severe skin discomfort
« Reply #3 on: February 08, 2021, 04:00:55 PM »
Thank you for your replies.
Yes I am about to look at the  very small amount of remeron I am on and have been for 20 years.
I take 7.5mg which is hardly a therapeutic amount ,but, it does help me sleep. Dreadful to come off of as lots of people have awful rebound symptoms of sleeplessness etc. And in the past when I did, it kicked in after 24 hrs so I gave up.
It's a class of anti d s that do  cause dry mouth so possible that it is excabating the dryness......
Is it possible I wonder five this dryness to be a flare? Dry eyes can flare so too I hope can skin? If anyone has any hope for me I would be super grateful. Appreciate your help.

meirish

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Re: Revisiting old topic severe skin discomfort
« Reply #4 on: February 08, 2021, 07:18:29 PM »
Also, have you gone over all your meds to see if this is a side effect??? How about getting help from your doctor to get off the Remeron to see if this could be the med that is causing this problem. You may need another drug to help offset the withdrawal that you will have.

You may even need your doctor to check with pharmacy to see what the latest meds would be for help. Be aware that some areas have medical experts on staff of clinics, etc to help monitor patients medications and help doctors with withdrawal problems. A person needs a referral from your doctor to this pharmacy specialist to become a patient with interaction between you the pharmacy expert and your doctor. Doctors can't know all the meds and side effects and methods to withdraw from medication. There are way too many medications and the chronically ill are on so many medications that assessment is needed often so these pharmacy experts are a blessing. My clinic ha s had one on staff for a couple of years but I can't remember his actual title. Good luck. meirish

Honeybee

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Re: Revisiting old topic severe skin discomfort
« Reply #5 on: February 09, 2021, 07:35:10 AM »
Thank you for your reply.
Unfortunately I am in the UK, we do not have that facility with our gp's.
Poor old NHS is cash strapped and my doctor I suspect will just deal with this.
You are right they dont know everything about every medicine. I have researched it and rang specialist pharmacy but they denied any problems!
On my own with this one.
But thank you  and at least I am on only one medication..

Scottietottie

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Re: Revisiting old topic severe skin discomfort
« Reply #6 on: February 09, 2021, 04:38:24 PM »
Hi  :)

I'm allergic to perfume. I break out in a kind of eczema if I encounter it - or other strong smells come to that. have you had allergy testing? I'm in the UK and got it and eventually found out what was causing a problem.
It's a pain in the neck as I have to keep my distance from people wearing make up and hairspray - they smell.  :)
The skin doesn't necessarily react straight away.

Just a thought. I can't wear nylon either.

Take care - Scottie
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meirish

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Re: Revisiting old topic severe skin discomfort
« Reply #7 on: February 10, 2021, 12:43:38 PM »
Allergy testing is a good idea..thanks to Scottie for mentioning it. With autoimmune diseases everything in our body gets screwed up....but not at the same time. And thankfully some of our ailments will drive us crazy and then go away as fast as they came. Keeps us on our toes for sure.

You are so miserable with your itching that it would be great if allergy testing would be possible. As Scottie mentioned ever different types of material cab cause problems. Wool gives my skin itching and rash. Good luck. meirish