Alopecia World
www.alopeciaworld.com
Facial papules
It's all so frustrating
I really hate all of this (sorry, having a bad day..)
Replies to This Discussion
-
Permalink Reply by DeniseC on
-
Oh dear Charlotte. Bad days are ... bad!
What sort of papules? I had lichen planus, which is a skin condition with smallish blistery type papules, although not on my face. When I was diagnosed with FFA, I was told categorically that it was linked to lichen planus.
It's horrible feeling you can't do anything. I went to see an integrated medical practitioner (highly respected, well known across the world) and he treated me completely holistically, with both prescription medication and natural products - but none of the drugs mentioned on this site. The lichen planus went and the hair loss (I think) has stopped (very difficult to say, as it is so insidious).
I also have been having acupuncture, cupping and Chinese herbs, which has made me feel much more in balance - key, I think, with anything that is linked to the immune system.
Get through today. If you are wine drinker, have a big glass (or two) (I am assuming here that you are in the UK and therefore are now at wine o'clock time). Have a lovely long soak in the bath. Go to bed early. Just do whatever helps you right now.
Good luck. And remember, tomorrow it might all feel less overwhelming.
x
-
-
-
Thank you so much for your warm & encouraging words. Actually i'm living in Switzerland, but whine-a-clock is my favorite time of the day :D and you really made me smile!! Thanks!!
Whats your dr's name? I really wish I could find someone who would take time for me & would treat me holistically. i had to wait several months to see a Swiss specialist only to be seen for 5 min...
i should try accupuncture soon. Hope i'll find time and babysitters;-)
Wish you a wonderful weekend - Attachments:
-
-
IMG_0765.PNG, 174 KB
-
-
-
Permalink Reply by Anne Louise on
-
This is exactly what my skin looks like. It appears bumpy but when I rub the affected areas they don't feel rough or bumpy, if that makes any sense.
-
-
-
Hi DeniseC
I also have lichen planus with my FFA. It has been driving me to distraction with the itchiness in particular and I am concerned that with all the scratching (which I desperately try to avoid) that I am causing more inflammation and ultimately more hair loss. Can you share with us the prescription and natural products your doctor recommended for you that seemed to help your lichen planus? I would really appreciate it. Thank you so much. -
-
-
I have these papules along my temples, forehead and chin. From what I understand it is the vellus follicles that are inflamed. I have lost all the hair on my arms and legs and never had these papules anywhere else except for these particular parts of my face. My sideburns are gone and that area is totally smooth.
It is so bizarre. I just wrote a post about emu oil. I am hoping it my help with the papules, along with hopefully some regrowth.
-
-
-
Anne Louise, thats exactly how my face looks and feels... its so weird!!! I had to see 5 derms, because noone believed that these bumbs were related to FFA. I was sure because it started the same time.
What about the emu oil? I cant find your post
i already tried rose hip oil. (No big succesd here)
Thanks for sharing your experience -
-
-
My post on emu oil is finally up...but then for a while it wouldn't open for me. Nobody has commented on it, so perhaps no one has tried it? Anyway, I do think the emu oil is helping a bit with the papules, it's only been a week. I've been trying to apply it twice a day.
-
-
Permalink Reply by sallylwess on
-
I saw your post on emu oil earlier. Now, I hope I can find it again. Sometimes this site is a bit funky that way. Are you on LLP Put Out The Fire on Facebook? I find that site very helpful.
I am going to look for your post again. If I can't find it, I will come back and comment here.
-
-
-
Yes, I have the same papules on both sides of my chin. I showed them to my derm and all he said was that they go with FFA. My papules are not noticeable to others, but I can clearly see them and feel them. It is frustrating. I'm sorry you are having a bad day. You are in good company. I think we all have those days. I guess it is one thing to lose hair, but then when we start having these facial papules which could become quite disfiguring, it seems like too much. I'm taking a big step and showing you how much hair I have lost over the past five years. Top photo was taken in 2011.
-
-
-
Dear sallylwess
Thank you so much for posting your photo. For me you are a strong and brave and beautiful Woman! I think your skin looks good, but as you wrote -we ourselves notice that this is not how we used to look like. Somedays I feel I can live with the hairloss, because they are ways to disguise it. But looking in the mirror seeing all these papules makes it so hard, since make up wont hide it. My youngest is 3months old and we're having a Family photoshoot next week. I'm so scared and ashamed of how I will look on the pictures :-(.
Lets hope that our inner beauty will help us:-)
Wish you a nice sunday & don't let ffa put you down -
-
-
Dear Charlotte, thank you for your kind words. This disease is such a difficult one to deal with. It truly does take us on a journey we never expected to be on. I never expected skin problems to go along with the hair loss. It is like a double whammy. I will be thinking of you and your family photo shoot. I hope you will not let shame enter into your picture at all. We didn't cause this disease. We were hit with it. It is out of our control. I am still working on acceptance of the disease. I think we need to give ourselves time, grace, and self care. In the meantime, love your family while you have that photoshoot. Smile for them. Smile for us. We need those smiles. XO
-
© 2024 Created by Alopecia World.
Powered by
