Replies to This Discussion

Permalink Reply by Lo on June 15, 2017 at 8:36am

It's funny that you post this because all week I've been agitated by my right ear. But mine is my lobe... where you'd put an earring in. Hot and itchy. I haven't worn earrings for years because they make my earlobes so sensitive.

So sorry to hear yours still losing hair. Are you still able to style your hair and cover the areas that you've lost?

Permalink Reply by Madmasoo on June 21, 2017 at 6:48pm

Interesting.  Mine is never the lobe, but always the cartilage - and its so painful and sensitive, ugh. Yes, still able cover with longer "bangs" and keeping the sides down.  I also use a root spray which works nice for now!  How long have you had FFA and are you able to cover up?

Permalink Reply by Lo on June 21, 2017 at 10:42pm

Hi... I can still cover with existing hair. I do tape in tiny cut pieces to my sides near my ears from time to time... and it fills the area in nicely. Just praying strong that this stops... either on it's own or through the aid of medicine and diet.

Best wishes...
Lori

Permalink Reply by diana on June 23, 2017 at 9:18am

I was thinking of taping in smaller cut pieces as you mentioned but thought it wouldn't work.  i have alot missing behind my ears,so will have to try it.  what do you do or i can probably find this on line somewhere for help.  thank you .  

stay away for the meds.  they will cause worse problems. diet has helped me.  staying away from dairy an gluten.and other foods that i found to be a problem for me.  be your own doctor.

the best of luck.

Permalink Reply by diana on August 17, 2017 at 4:27pm

hi.. you can actually tape in pieces??  do you have to make these up yourself or where  can i get  tape ins?  please let me know as i also need for my "sideburns" so to speak.  thank you!

Permalink Reply by Classical Anne in NC mountains on June 15, 2017 at 10:33am

I have had that outer ear cartilage pain on and off for about 40 years, so doubt that it is directly related to FFA [which I, too, have had about 4 years]. However, it makes sense that when your scalp is more active, other areas of discomfort might be more active as well. That may mean an uptick in the autoimmune response generally. I have seven autoimmune disorders and diseases, some far more consequential than others. But when one of my systems flares, I do feel more sensitive in other areas. Sorry, I'm afraid that's not very encouraging, except to say it's all bearable, and there's always hope the sun will shine tomorrow.

Permalink Reply by diana on August 17, 2017 at 4:30pm

have you tried the autoimmune paleo diet yet?   i;m sure it would help in some way to relieve something no matter how minimal.  worth a shot.   

Permalink Reply by Classical Anne in NC mountains on August 17, 2017 at 11:44pm

Diana, I appreciate the suggestion, but I have too many dietary restrictions associated with some of my chronic issues; can't afford to stir the pot with a diet such as paleo.

But I am glad it works for you!

Permalink Reply by pauliegirl on July 15, 2017 at 10:21pm

Ear cartilage pain/itchiness is new for me in the last month and this is during a flare that started in April. Please see my recent post assuming it gets approved but I am crazy-suspicious about sunscreen use. If I could suggest anything, I'd say stop chemical SPF use and see what happens! I stopped it 5 days ago...cautiously optimistic that this could be big!!!! 

I believe there is a genetic tendency and for some (me included), a hormonal influence.

Take care!~

Permalink Reply by diana on July 17, 2017 at 4:44pm

Anything that we put on our skin that we can not eat will be absorbed and will affect us.  sunscreen being one of those.  use natural sunscreens such as coconut oil & pure organic shea butter from a health food store, but i'm sure there are others.  also there are foods/vegetables that we can eat that help prevent burns.  

Permalink Reply by Jules Australia on August 16, 2017 at 9:59pm

Hi Madmasoo Yes Ear Carilage Pain & extreme  outer ear tenderness was something i experienced when my symptons of FFA started with pain tenderness & itchiness (along with sudden hairloss from front, temples & around ears) almost 5 years ago now. On & off my outer ears would appear really red as well. .very sore when comb would touch ears....this happened intermittently during year prior to the sudden pain symptons & loss in October 2012 when soon after i suspected (& consequently confirmed 9mths later by biopsy) that i had FFA & lichen planopilaris.... it is so good too see others comments here because sometimes the wierd symptons accompanying this disease make you feel very much alone & freaky....it just validates that the issues others are dealing with seem to be related to FFA & makes you feel slightly less alone.....i think sometimes i'd feel as though i was going crazy if not for the ladies on this forum sharing their symptons....i haven't had the ear tenderness for a long time now (several years even)......it was pretty bad during first 3 to 6 months (from memory) from when Ffa first appeared (& on & off during the year beforehand).....This DISORDER baffles me!!???

Permalink Reply by diana on August 17, 2017 at 4:40pm

i agree Jules .. it baffles and freaks me out daily.  i have similar loss..temples, around ears, actually top of my head where i have to do the comb over, but atleast it still works at covering most of it although i do have to use the powder coverup. also have thinning mostly allover.  i believe i also have thyroid issues.... I hate this.  i was diagnosed with lichen planopilaris oct 2013..omg.  i cant believe i am still fighting this. i sometimes would get sensitivity on my ear lobes but thought it was my earrings causing me issues.  i did do the autoimmune paleo diet and now basically stay away from gluten, dairy, most nuts.  sometimes have pizza... have to have it!  have you changed diet in any way?  

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