Hiya - it does seem also that a lot of us are cursed with autoimmune nonsense- mine is an underactive thyroid gland and that was picked up when I was in my early 40s because of hair loss, not because I was gaining weight as I have always been quite ocd about putting on weight. Thankfully, then, once I started the thyroxine tabs my hair was once again thick and glossy. I was actually in India on a 6 month sabbatical with my husband having a whale of a time in 2010, when this wretched condition was first spotted, not in the least bit stressed (although stress is always a factor, whatever the situation, at times). I was having highlights put in my hair by two beautiful Goan girls and they started making comments in their own language about something they were seeing in my hair - I thought it must be nits, or lice (wish it was - easily rectifiable) but no, it was minute bald bits all along the side of my hair line. I tried everything while I was out there, over the counter stuff, but then I got the devastating news when I was back home that it was permanent hair loss, AND progressive...

Seems a lot of us, from what I'm reading below, have spent time really caring about how we look, I'm 62 but my war paint goes on every morning, I love clothes, I look after my weight, eat healthy, have had facial CASI's for about 18 years, get my nails done every week, travel all over the world and off the beaten track, have a very demanding but fulfilling job, kids, grandkids, a great hubby, and am determined this bastard condition will not get the better of me...especially as I am a recovering alcoholic on top of everything else and haven't had a drink or anything else for more than 26 years - no fags, nothing. Jeeze, I live a healthy life!!!

I bet you if we all met  up, we'd all agree we are a fabulous looking bunch. Creativity is the key. Yes, I made a bit of a cockup with my second lot of tattoos that were supposed to look like hair but were nothing like, but after the initial weeping and wailing from me, I'm doing something about it and the laser treatment is working slowly but surely and I'm already planning on getting more done at the end of it. We got to keep smiling girls, and share our stuff, and try out ideas...there really are worst things to have out there, even though it doesn't feel like that at times when we have one of those truly bad hair days, but onwards and upwards, as they say x                        

Right on Nina Jones! Love your attitude & strength and it sounds like you have yourself a fabulous life!

Yes and yes I agree completely, creativity is key for dealing with FFA- I have my powders and potions that I use every morning to deal with my hair and then that is that, I go on with my day as there is no way I am going to let my crappy hair beat me down.  I had bad hair days when I had more hair and I will still have bad hair days with less hair- but actually now that this has happened I am paying more attention to my hair and taking better care of it then ever before, so ironically, it looks better now then it ever did.  

I keep reading about stress being a trigger and I had no stress, no specific stressful event, this just happened over time- one day I noticed I had no hair on my arms and then I noticed I had no hair in front of my ears.  I don't really have any autoimmune issues that I am aware of, never really used sunscreen a lot, took fairly good care of myself, never to extreme in anything- as my doctor once said to me, I was boringly normal!

The only thing I can point to as to the cause of for me is my mother. She didn't start losing hair until her late 60's but it started for me at around 50.  So that is really the only thing that I have to "blame" for my FFA as I don't have any of the other triggers that I read about here.  Again, the mystery of FFA, why, how, what causes it!

Yes, I have indentations in a couple of nails, that began before the hair loss became noticeable - hence why I get them done each week to make them look pretty. Love your attitude too Minter (and the name) - I'm off to Corfu tomorrow and yesterday I was in that salon getting my hair all glammed up - highlights etc - and I take real care of it now (fortunately my daughter is a hairdresser so I get the top end stuff all for free!!!) and I reckon it looks better than it's ever done, like you said. It's long and bouncy and I can still flick it back. Funny, I never really noticed my arms or legs until recently, when I started reading this forum, and like everyone else it seems, hairs there are minimal (still, saves me on the leg waxing, so every cloud has its silver lining).      

DW, I also have had a ridge in my thumbnail for at least the last ten years, I hate it as my nail is always tearing really low at the ridge and it hurts :-(

Nina Jones, lucky you on going off to Corfu and having a hairdresser daughter! Enjoy!  

yes i also have ridges on my thumbs.. not too bad but they are there. and been for maybe close to 10 yrs.  i think they have improved over the past couple of years with supplements etc. like biotin, collagen peptides by vital protein.  hoping they help my hair loss more than my nails!  although my loss is slowed to i believe normal since i removed gluten, dairy and sugar although i do have either of these at times, very imfrequently but we all have to have sugar...please & thank you

Nina Jones, you are a breath of fresh air.  We need you here.  You keep it real, and your advice is fab.  Live life well even if your hair is falling out by the handful.  I agree we must be creative too.  Once I no longer could disguise my hair loss, I turned to toppers, scarves, headbands, and hats.  I also had my eyebrows tattooed.  I dress well and have my nails done.  I even go to the hairdresser and have my weird looking hair "styled."  Last time I was there, two young hairdresser kept looking at me.  Finally they came over and said, "You have the best eyebrows we have ever seen.  We had to get a closer look."  That made my day.  Finally, Liz, the photo of your thumbnail is almost exactly like mine.  I do think this goes with FFA as do the weird papules on my chin.  

Some of you are not on Facebook, so I am giving you a link to the blog post I recently wrote about my hair loss journey.  https://sallysbloggingspot.blogspot.com/2017/09/living-with-hair-lo...

I have also had the ridges in my nails and my big toenails separate from the top - not all the time but it takes forever for them to grow out.  For a long time I thought it was from wearing shoes that were to tight but since everyone has been talking about this lately I did some more digging and actually both of those issues are lichen planus.  This question is for you Sally or anyone else who has seen Donovan as I know he checks peoples nails - what did he suggest about that - the skin condition is suppose to clear itself in a couple of years.  Looking back over the years - self examining and thinking as usual - I know that I have had a small area of this on one of my big toenails long before the FFA and I also know that I had over the years - probably 9-10 years ago just a small pimple for lack of a better explanation on my head on one side or the other - just occasionally - so was all of that just a precursor for lichen planopilaris and FFA?  Also does that mean that we are just hypersensitive to sunblock and ingredients - actually an allergy perhaps - after getting or maybe causing those two issues.  How many have had or did not notice that we had these issues going on long before a diagnosis which sort of - in my thoughts leads us back to the gut issue.  Sorry guys not trying to be tedious just thinking.

Sallylwess, back here again having just read your blog.

You are a beautiful lady with or without hair and I thank you for sharing your words about this stupid disease. 

To add to the microblading discussion: it's been almost 10 weeks since I had them done and it's been a little bit of a roller coaster ridefor me. They were way too dark at first, then they were kind of an opaque "milky" color, and now they are very patchy and have a gray/green color to them. I know we picked out a warm brown color so I'm so disappointed. It sounds like others have had color issues as well. Ughhhh. . .I also feel like I have red scarring where it was done. Such a bummer. I was going to get a touch up but I am way too nervous that it will get worse. From what I'm reading from all of you this could be because of FFA?? I'm not trying to discourage anyone from doing it because so many others have good results.

I will do the best I can filling them in and my daughter keeps reminding me that they're better than they were.

Hi Sallylwess i have been a member of this forum for a couple of years now ( had ffa/lpp) for at least 5yrs......i live in Australia......i just read your blog & whilst having read many of your posts over past couple years (including your story on the carf website, which was so rawly & honestly written), i already had much admiration & respect for you.......but have even more after reading this heartfelt, deeply honest blog......you are a wise, beautiful, brave woman who seems to be able to describe so well the feelings that i think many of us have felt, trying to live with this chronic, painful (both literally & what it does to our peace of mind/sense of well being) disorder which seems to go on & on & on for so many of us. The psychological effects are one of the most difficult challenges we face living & dealing with this on a daily basis. If i manage to find even half  the strength & courage you have found through your long drawn out journey i'll be very happy indeed. Thankyou again for telling & sharing your raw, honest, brave journey....you are such an inspiration & it helps me........ You really are a beautiful soul   .........jules australia

Sallywess- I echo everything that Jules said. Thank you for sharing.

Sally, thank you for your beautiful blog.  My backward progressing hairline seems to be a perfect match to yours at this point.  And I shared your teenage angst over curly hair.  Mine has always had a mind of its own, and it rarely agreed with me. Throughout adulthood, I would get huge, awkward waves at best, and go to my stylist screaming "Surf's up!"  I truly did not appreciate my curls until I was 50.  And at 60, it all started leaving me.  Foolish not to have appreciated God's gift of angel wings all along.

Classical Anne, you made me smile with your comment about "surf's up."  Thank you for your kind words.  Also,Minter,  AnnieMay and Jules Australia, thank you for you words of kindness and support.  It is so helpful to know we are not alone in this journey.  

Sally, I just read your blog post and almost feel like I could have written the same thing, from the fighting my thick curly hair when I was younger to trying to figure out what to do about my hair loss now. I've lost about the same as you, a couple inches all around the hairline and temples and try to find ways to hide it. I've had this about 5 years now and coping with it is easier but still not easy to deal with everyday. I still don't share with everyone but I have become more open about it. And you're right, it's not cancer, but it is permanent and a life long struggle. I'm glad to know I'm not alone.

Love to hear thoughts from anyone using Tacrolimus solution? no idea if it's helping at my hairline. I seem to be going through a stage where my hair feels like it's getting SO much thinner with a lot of shedding and I don't know if it's from the Tacrolimus or just another lovely issue from FFA. But I've also been experiencing a lot of insomnia and I wonder if that could also be from the solution. Feeling discouraged today. . .

I use tacrolimus only when my scalp is itching, burning, or if I see flaking around the hair follicles.  I find you must use a light covering. I use clobetasol solution if the itching and burning does not resolve with tacrolimus.  I have heard others say that the tacrolimus actually helped grow back eyebrows where scarring had not yet happened.  I have not see that it increases loss.  I never know what causes the loss.  

AnnieMay, I went to the top of this page to "search" and typed in tacrolimus.  The search brought up past discussions on this topic.  I am including one such discussion:http://www.alopeciaworld.com/forum/topics/a-million-thoughts-protop...

Very discouraged....getting worse with extreme loss back from forehead and around ears.  I used to be able to pull the sides of my hair down under my pieces, but am finding that will not work anymore.  It is so freakish looking; cannot ever leave my house without head covering and so uncomfortable without it.  But also uncomfortable with it....tape, itch, heat, worries.  Just a shitty, shittly situation.  And yes, I am a cancer survivor (24 years - yea!), but the joy of being healthy is diminished by this which came from nowhere and has no cure.  I am trying.  Everyone thinks I am so cute with my pixie haircut, but I know it is fake and makes me nuts.  

@SadInChicago I find my pixie cut liberating but also frustrating. My instructions to my hairstylist about my hair now is that, "I don't want to feel it and I don't want to see it." I have more hair loss on the right than the left so my bangs are short and swept to right and my "good hair" is cut down in volume to blend with the sad hair in the front/sides. I like my pixie but gone is the fun of changing hairstyles. When this style changes it just gets shorter and shorter...and grayer.

Hubby tries to cheer me up by saying I'll be wise- just like the Bene Gesserit in the movie, Dune. Looking like a sci fi character was never a life goal...but hubby tries to be a comfort. :)

All the best to you. I'm sorry that you are having a tough day.

((hugs))

Ohhh  Sad in Chicago-I'm so sorry you're having such a hard time. It's not fair that this condition robs us of so much. Like illustr8r said I don't want to "feel" my hair so I pull it back all the time because it drives me crazy. There are some days where I wish I could shave my head but I know I would look like an alien! I hate how much this affects all of us. I don't want to think about this everyday for the rest of my life but I think that's the new reality. People don't understand that this is much bigger than just losing some hair.  

Annie May your words describe my exact thoghts.....the awful thought of possibly having to worry about & deal with this chronic progressive conditiion for the rest of our lives or at least much of it....at times it just becomes so draining, taking so much joy from our day to day living.....had ffa/lpp for 5 years now.....had couple years (2015,2016) where the scalp discomfort really calmed down to point that much of the time i managed to put thinking about it to one side ( still had some itchiness & at times pain, with v slow progressive loss, but much milder than first couple yrs). Since mid march 2017 when symptons ramped up & hit again, i have become so sick of feeling the uncomfortable itchiness tenderness & pain...it really does SUCK!!! And our weather in Australia is starting to become quite hot.....often seems more aggravated from the heat; & the loss is definitely creeping back from front, around ears & diffusely....... I think most people really wouldn't understand how intrusive this disease can be to our general feeeling of well-being, unless they experienced it themselves....Although the symptons can wax & wane, i think because, for a lot of us, it progresses over many many years, dealing with the scalp discomfort & the continual adjustment to the asthetic effects on our appearance makes it all the harder to just get on with living.....without the everyday ' thorn in the side' type feeling! 

Curly K, I understand your sadness....this condition certainly does often feel bizarre & weird......i am also dealing with moving my mum right now from her beloved home (in an independant retirement village) into a larger village where she'll be in a 'serviced apartment' with support on site if needed (medical/nursing etc).... she's 88 diag with alzheimers this year (v sad to watch). I, like you, also chose not to take medication, after much research & finding no effical conclusive evidence of its effectiveness (&due to potential side-effects)........look forward seeing your new hairpieces.....may be needing to travel that route in not too distant future...take care

To all: Honestly just being able to vent about things that no one would ever be able to understand unless they are waking up every morning dealing with the realities of this "shitty" condition helps so much. It's so hard (impossible) to explain to anyone why this is so all consuming and so devastating. It sounds superficial but it is so much more than hair loss. I wish I could forget about it but the scalp sensations and skin issues for me are such a reminder everyday. And as a smart woman to not have any clear direction on any way to help or move forward in any way is just beyond depressing. .. . the thought of wearing a wig to my daughters wedding someday makes me cry and keeps me up at night. I have always been such a strong woman but I have no idea how I could ever get through something like that. I thought I was strong but this is testing me in ways I never knew. I wish I had some positive reaffirming things to say but I'm having a bad day/bad week. Not sure what I would do without all of you. . . huge hugs to all of you

AnnieMay I hear you loud & clear & totally relate to your feelings.....i have always been a fairly positive person with a 'live in the moment type attitude', & even though i try really hard to keep up that approach, it simply can at times be such a struggle to achieve. Especially with relentless scalp dysesthesia; it's a gaunting reminder of whats likely to come (more loss & adjustment).... but at the same time we have to try view life by looking at 'the big picture' .....i know its easier to say than do.....but we all only get one chance on this earth.......& somehow have to find a way to cope with this horrible disorder & the challenges it throws at us... i'm thinking of you AnnieMay as i understand your struggle....if i could give you a hug right now i would....it sounds like you have a loving family (as i have also), which is pretty special, a lot more than many have.....if its any consolation it helps me sometimes when i think of my friend (from high school) who died 9 years ago,at 50, from matestatic breast cancer (a long 6 year battle), how strong & brave she was all the way through...and the fact that she never got to see her two young boys (7 & 10 at the time) grow up..... i am not at all religious, but i love  & have a huge respect for nature & the world around us in general.....having said all that i totally get how this disorder can bring you down.....but we r all here to support each other....i have a busy time helping my Mum move over next week, bu t will check back in in few days time to see how you're doing Annie. By the way, what country are you from..... i live west of Brisbane in Queensland, Australia, am 59 in a few weeks.....be kind to yourself...you deserve it!!!!!

http://www.realestate.com.au/rent/between-0-325-in-brassall%2c+qld+...

Hello!

I got connected with a group in San Franciso, from a recommendation from someone here, that I cannot find since I don't know how to go around the site very well. I highly recommend the site and newsletter very informative, encouraging and empowering. I am supporting them!

http://www.carfintl.org/

Best!

Ana

I started the Paleo diet two weeks ago and I'm on vacation now and even Paleo is tough especially in restaurants. Bread is the hardest for me. And I feel like I'm always hungry! The good news is that the itching for me is much better.

Illustra8r- I live in Oregon and I've tried to find gluten free bread that I like and it is SO hard. Trader Joes gluten free bread is ok if you toast it. Bread is hard but cheese and pasta are rough for me. I tired some gluten free pasta and it was awful. If I could have put cheese on it it would have been better but oh yes I can't have cheese on my pasta either? What am I supposed to eat?? Ughhh

As some of you have said there are ups and downs seemingly everyday. One day I feel sort of ok but the next day I am a mess. So long to get ready every morning trying to hide my "secret". And with everything thing else the texture of my hair is also completely different than it was a year ago; receding top and sides, all over thinning and shedding everyday, but also dry and straw like, doesn't even feel like my own hair? Does anyone else have overall thinning and such a texture change??