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Comment by Jules Australia on April 24, 2018 at 3:03am

Plf thanks for correlating....yes i have read that article, but I had just wanted to see how many others here had experienced the same sympton. It's so wierd, when it first started i was only a year or so out from when my bizaar scalp symptons started at end 2012 & initially I wasn't sure if it was just me, menopause or what, but my gut feeling was telling me ' yep, i think this is another ghastly sympton of this b@#s#ard disease' ...just what we all need, as if life wasn't already challenging enough living with the loss & discomfort. PBSunshine, Plf took the words right out of my mouth, i wondered same, where do you live?....I agree with you that it often feels like such a lonely disease/disorder as no-one can really relate to or truly understand what it's like dealing with these awful symptons day-in, day-out(although they can at times wax & wane) unless they've experienced it themselves!....I feel for everyone here who has to putup with it progressively & chronically, not having any idea when the hec it will 'give up' & STOP!!!!

Comment by Halfbakedwho on April 24, 2018 at 2:55am

It’s strange but the French alopecia groups are practically non-existent. Here we are a lot more private about practically everything so I guess it’s not so strange. I can relate PB sunshine to you wanting to meet people. Obviously, given your name, you don’t live in grainy-grey France. 

I am so incredibly grateful to have this group to write to (more like vent... « write » sounds too civilized). 

It’s a year after my diagnosis this month. There’s definitely more hair loss. I am no longer waking up freaking out, thinking this must just be a bad dream (though sometimes I still wish it were just a f-ing dream). I am not trying to not eat gluten (dairy, sugar, caffeine, meat, large and small insects, leaves...) (am kidding about the last two, mostly). I am probably too cavalier at times with putting crap on my scalp, and taking iron. At night I am scared of how I’ll look in the years to come. 

As if - the people who love me will no longer love me? As if - I’ll become even more invisible as a woman (maybe not an entirely bad thing?)... As if - this will impact how I am seen in my profession? 

My loving crazy-ass husband is an Alopecia Areata - not a hair to be seen ANYwhere. And I promise you, he DON’T care, not one little whit. What is a whit? Yes he looks a bit odd (no eyebrows, eyelashes, etc.) but it wouldn’t occur to him to think that others wouldn’t love him, or respect him in his work, or would make him invisible out in the world. 

Just my two euros this morning, not sure where I’m going with this. 

Comment by Plf on April 24, 2018 at 2:34am

Where do you live PB sunshine?

Comment by Plf on April 24, 2018 at 2:33am

Hi Jules, I read an article on this..just google frontal fibrosing alopecia and increased scalp sweating:is neurogenic inflammation the common link? Harries Wong & farrant.  Another horrid part of the disease..it's relentless, I feel your pain

Comment by PBsunshine1 on April 24, 2018 at 1:01am

I would love to meet someone local to have coffee with I feel so alone in this Hell :(

Comment by Jules Australia on April 24, 2018 at 12:50am

Hi all, with all the discomfort & common symptons that many of us have, itching, pain, tenderness, creepy crawly scalp sensations, amongst others, do any of you suffer more sweating than normal especially on forehead where hairline once was & now is/& or scalp and where the eyebrows once were (if, like me, you pretty well have zilch left); I never used to sweat in those areas like to the extent I do now, even when I'm moderately active....it's so frustrating, especially when you live in a climate that it is quite hot & humid for much of the year....???

Comment by Lynn555 on April 23, 2018 at 9:43pm

Just be careful with the castor oil because I actually ended up allergic to it. My head was super itchy for days afterward. 

Comment by Plf on April 23, 2018 at 7:45pm

Thanks illustr8r, fingers crossed, 

Comment by illustr8r on April 23, 2018 at 6:16pm

Here’s a website that has some good info about castor oil. :)

https://www.goodhealthacademy.com/health-benefits/castor-oil-for-hair/

Comment by Mel on April 23, 2018 at 12:24pm

@illustr8r Thanks! I am going to try this.... My forehead is red, itchy and peely going on a month now. And the skin is rough and looks ancient. The peeling is going into the hair like you described. But I don’t use Clobetesol or any drugs. Ugh!! Will use more castor oil and see.

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