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Anybody reacting to ALL clothing? Any ideas? (Read 8301 times)
BlueSkies
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Anybody reacting to ALL clothing? Any ideas?
12/17/12 at 09:03:12
 
This is how I actually got diagnosed with Masto.   We went to a very good dermatologist because all clothes make my skin burn, and then it progresses quickly to burping, nausea, brain fog, exhaustion, and then faintness.     (The doctor diagnosed me with a skin biopsy.)
Lots of regular Masto triggers make the clothing problem worse - like heat, cold, stress, wrong foods, being hungry, overdoing, sunlight, and more.    

This problem is much worse in the morning, and tends to improve some in the evening.    This gets so bad that sometimes I have not been able to leave the house, because I could not wear enough clothes!  

Currently I wash the few remaining items of clothing that I seem to ever be able to wear, in water only.   In a washer that has never had any type of detergent in it.   Then, hopefully, after I hang dry it, I may be able to put the item back on.    

I do also have environmental illness - which I have had for decades - but this goes way beyond that problem.    

Any thoughts?   Ideas?
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Anaphylaxing
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Re: Anybody reacting to ALL clothing? Any ideas?
Reply #1 - 12/17/12 at 09:37:26
 
There was a time where yes I couldn't wear anything :S

With time my skin settled and soft fabrics are ok. If new I need to wash them 20-30 times with an unscented detergent I tolerate and sometimes baking soda. Have used vinegar for bad ones with hot water but need to wear a mask and rinse well as I react to vinegar.

I can't wear most of my old clothes and had to start fresh.

An old washer that had detergent or a new one that's leaching it's newness into the water would both be issues for me and I would run in empty a bunch of times to flush.

Me too on the reactions to all chemicals/scents

More on my blog

http://mastcellactivation.blogspot.ca/
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BlueSkies
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Re: Anybody reacting to ALL clothing? Any ideas?
Reply #2 - 12/17/12 at 14:40:36
 
Anaphylaxing,

Wow - thank you for sharing!  This is so encouraging that now you can wear the clothes again!!!  So - there is hope!

I am also glad to know that you are feeling well enough to be reading on the forum!   I've been wondering how you were since your surgery.

Did you have to detox, or eat solely organic food, to get to this point?  Or, did gaining more control over your masto help with this?

I'm going to check out your blog.   Thanks!
BlueSkies

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Re: Anybody reacting to ALL clothing? Any ideas?
Reply #3 - 12/17/12 at 14:44:45
 
Hey Blue,

Do antihistamine meds help with this problem at all? Sometimes we just can't avoid the trigger (such as clothing), so then we have to figure out the meds to halt the symptoms. What meds are you taking, and what is your diagnosis exactly?
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BlueSkies
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Re: Anybody reacting to ALL clothing? Any ideas?
Reply #4 - 12/17/12 at 15:41:44
 
Hi Deborah,

Good question!   So many things happen, that with brain fog and everything I forget a lot of things.   But, this is what happened with me and meds...

When I was diagnosed about a year ago, the dr recommended I try Claritin.  The first day it helped a lot, I think it helped with the clothes, too.  (It was reducing my low level tongue & throat swelling.)  The second day it helped about half as much, and then after that it didn't help at all.   But the scary part was when I stopped it - I had a rebound effect, and I was worse off than before I tried it.

Since I have a history of bad reactions to meds - I was afraid to try any more antihistamines.  However, after reading more on this site, I am willing to give them another try.  I am going to see a new dr. in 2 days!   I am hoping he will work closely with me on meds.

But, since I was mainly thinking about helping the swelling with the Claritin, I had forgotten that it helped with the clothes.  (That's why I'm glad you asked!) I will talk to the new dr about that.

My diagnoses is Telangiectasia macularis eruptiva perstans Mastocytosis.   What a name!   Also called TMEP Mastocytosis.   Since I have so many internal reactions, I am wondering if I may really/also have systemic Mastocytosis.

I didn't mean to be so wordy.   Thank you for your thoughts!   If you think of anything I should ask/share with the dr - please let me know.  (I read your list to take to the dr - thanks for that!)


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Re: Anybody reacting to ALL clothing? Any ideas?
Reply #5 - 12/17/12 at 20:42:29
 
Yes to all of the above blue skies

Getting on top of everything helped. Initially and as nasty as the meds were I seemed to need high dose steroids to breathe, but was on them too long.

Getting off some of the meds helped me, Sorting out triggers (and still sorting out triggers), doing, yes, and organic, rotation elimination diet which I am still on, and UNSCENTING my entire existence, getting as much fresh air and exercise and my body would let me--which some days meant sitting up in bed or standing, getting out of the hospital environment, finding ways to manage stress etc

I'm currently still tapering off meds and trying to find my baseline.

I have found the most help from the mast cell disease experts in Boston and from the MCS/EI side of things eg Dr. Rea as far as the environmental triggering component.

Thank you for caring about my surgery. I am still recovering but making huge progress daily. Had rashes around most of the incisions but I THINK they are starting to fade, hooray. Had a complication of the arterial line they placed (which I didn't want) and my radial pulse is no longer but I'm praying my body will find a way to recanalize it, but in the scheme of things I thought I'd have massive anaphylaxis so these issues are small beans!

Take care and keep us posted on your progress!
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Re: Anybody reacting to ALL clothing? Any ideas?
Reply #6 - 12/18/12 at 10:07:11
 
didn't see your post before, but i have burning skin pain all over. I as well use unscented detergent & softners for my wash. The clothing that works the best for me is silk. I wear silk under most of my clothes. The for dress shirt & pants microfiber. It's very light weight, but the problem is doesn't hold any body heat, that what the silk does. I also make sure my skin is good & moisturized. Nothing worst that dry skin.
Since I'm nasids intolerant not many meds to help. Key one is ketitofen & then for the pain tramadol. Mine is oposite of yours mornings are my best time, afternoon & evenings worst. But take some liquid benedryl at night to help.
MikeV
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BlueSkies
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Re: Anybody reacting to ALL clothing? Any ideas?
Reply #7 - 12/25/12 at 10:25:26
 
Hi Mike,

Thank you for your post!   I just read an article about silk, and it mentioned that silk can help with some skin diseases because the amino acids that the silk is made from are gentle to the skin.   Interesting.   I'm going to try some silk things - used of course.   Anything new is like pouring gasoline on a fire!

That's interesting that your best time is in the morning.   So, my being worse in the mornings is not necessarily a clue to what's going on.

I just had some tests run last week, so maybe I'll learn some more soon.   In the meantime I am having a very long flare and am wishing I could wear clothes without having them touch me!  

Thank you for your suggestions!
BlueSkies
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