Replies to This Discussion

Permalink Reply by Jacqui on September 16, 2017 at 10:08pm

AnnieMay yes I noticed changes in my skin as well!  My face has "age spots" on it now and skin on my arms and legs looks different as well (hard to explain, raised hair follicles etc).

Yes it is a lonely disease and I find no-one seems to get it apart from our lovely friends here. xx

Permalink Reply by illustr8r on September 17, 2017 at 2:47am

I have age spots too. My skin went from smooth and no blotches to red and brown blotches on my cheeks, chin, nose and side of my neck. It beautifully contrasts my stark white sides and temple. I have red and black dots that are broken blood vessels. It's so weird-my skin feels thicker. I don't know how else to describe it. I was told the cheek blotches were Melasma-but at the time I wasn't on birth control, HRT or pregnant. Maybe that was an earlier sign of this crap.

My skin is so blotchy, yet I had been using make up with sunscreen that was supposed to prevent skin damage then I get a disease that makes me look like I've never used sun screen. WTH! The AIP diet has lessened the redness but my porcelain skin is forever gone gone gone. Dammit! (shakes-fists-in-the-air!!!)

Permalink Reply by Jacqui on September 18, 2017 at 5:20am

illustr8r you made me laugh out loud with that "shakes-fists-in-the-air!" xx

Permalink Reply by illustr8r on September 20, 2017 at 7:41pm

Some days...swearing and raised fists in frustration is the only outlet that helps in managing this stupid disease! 

:)

XXOO

Permalink Reply by TMB on September 20, 2017 at 8:27pm

I agree. It really works!

Permalink Reply by Jacqui on September 21, 2017 at 8:26pm

I am totally going to try it!

Permalink Reply by Molly on September 20, 2017 at 6:44pm

I've had a very similar experience. It hadn't even noticed my hair loss, but went to the dermatologist for the changes of the skin on my face. My dermatologist said the bumps and appearance of my face was due to the same process that was making me lose my hair. The hair follicles on my face were inflamed and raised. I hate this more than my hair loss. My face burns, itches, and drives me crazy, and I can't really try to hide my hair loss with bangs, etc., because I have to keep my hair off my face. Otherwise, it actually feels like my hair is scratching my face. I, for one, believe that this is caused by sunscreen. I diligently used sunscreen every day in my moisturizer and foundation. I've probably done this for the last 20 years. My problem areas (face, neck, hairline) are the exact areas that would have absorbed the sunscreen.

In the scheme of things, I know that I could have many worse things happen to me, and I try to be positive, but the relentless itching/burning feeling has been very frustrating.

Permalink Reply by Jacqui on September 21, 2017 at 8:25pm

Oh Molly I had 4 flair ups on my face that no one could put down to anything but I now think it was FFA.  It was so terrible and I am sorry you have it too.  I hope you can find something for the burning and itch.  When I had flares on my face I was prescribed prednisalone short term and that helped immensely.  My eyebrows don't itch anymore as they have practically all gone and I have more of an itch at the nape of my neck now which I think is where my activity is at the moment.

Until there is a long term evidence based study I don't believe it's sunscreen, but I understand many do.  I live in Australia and I would rather have FFA than skin cancer so I will continue to use it everyday. 

xx

Permalink Reply by AnnieMay on September 25, 2017 at 2:16pm

My skin feels thicker too. I call it "chicken skin!" It looks rough but doesn't really feel rough? At first I thought it was that my pores looked bigger but my dr says it's actually scarring from the hair follicles on my face. Really strange looking on the sides by my temples. As Molly said I hate this more than my hairloss because it's impossible to hide and yes illustr8r my porcelain skin is gone forever too. Blotchy, rough looking skin on my face but shiny white smooth skin at my hairline. Dammit!!

I think I'm going to look into a powder foundation rather my liquid one to see if it helps. I have been using BareMinerals Invisible Glow powder and it helps a little. I wonder if anyone has tried retin A to see if it helps?? 

Permalink Reply by Jacqui on September 25, 2017 at 10:27pm

Let us know if you find a new foundation, I have had no luck yet with one... let alone trying to blend something into my receding hairline...

Permalink Reply by Jacqui on January 1, 2018 at 3:10am

Hi AnnieMay, I am sorry I missed your reply from September!  

I totally agree.... everytime I took my meds it reminded me of my FFA and even though I still know I have it... I don't feel like I am thinking about it as much.

It is a lonely disease... but we do have each other x

Permalink Reply by TMB on September 18, 2017 at 12:15pm

Thank you. It is such a slow and frustrating process. Take care xo

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