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Inflammation/Ankylosing Spondylitis
I am still losing my hair by the handfuls and it has become drier and breaks with every touch. I can see scalp now where I couldn't ever before. My hair looks so bad because it needs to be colored and there's no way it could survive it. Because of my terrible headaches and eye pain I went to the opthamologist and found out yesterday that the ankylosing spondylitis is now effecting my eyes and that they are full of inflammation just like my body. I believe that is what is going on in my scalp as well-the burning, then the hair just falls. I know this is an autoimmune attack but I what I don't understand is why NOTHING helps. I have changed my diet, taking fish oil, my thyroid meds, and now an anti-inflammatory. BUT nothing is helping...I just keep getting worse. I just want it to all go or stay one..I hate the limbo. It doesn't look like it is growing back anywhere anymore either....I have talked to many people with A.S. and NOT one of them has hairloss..so I am baffled. According to the 200 derms I don't have alopecia areata and according to others A.S. doesn't cause hairloss...I am just so confused and exhausted...and I do FEEL very alone. I don't think I have ever talked to anyone on here either that has A.S...
Replies to This Discussion
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Permalink Reply by Chefpam on
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I am not here to be patronized. If you can't relate to me, simply ignore me. I am very ill and unable to hardly leave my house-to me that is pretty bad since last year I had a career and a body that worked. I have a heart as big as Texas and I am praying for those in Japan, those with cancer, those on the streets, etc. BUT that doesn't minimize MY pain either. I was simply looking for others who might have AS and hairloss. If you don't have it, then I am grateful for you-because it is terrible. I am so thrilled that you have come to terms with your alopecia but please don't make me out to be an ungrateful person that I am not because I am still not ok with my hair falling out. When no one out there in that big world understands what I am going through I would hope I could come here---after all this forum is called ALOPECIA world...
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Permalink Reply by Heather L on
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Hello Chefpam!
Sorry you are having such a tough time! I do know of another person who has both AU and AS. I understand the AS is very painful... miserable I'm sure! I do Know for her that removing both gluten and casein protein ( dairy/milk protein) helped a great deal with the pain she was experiencing. Is that something you have tried? How about acupuncture for inflammation/pain? That worked pretty well for me a few years ago when I herniated a few disks in my back. ( didn't really help for my hair though!) Is AS a condition that going to a chiropractor can help?
You are not alone there are many people who understand. All the gray area surrounding autoimmune diseases is so frustrating & stressful! We never really know what to expect -
Heather
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Thanks for your response Heather. Yes, I have gone gluten/dairy free for about 5 months now. I also saw a chiropractor until he told me there was nothing more he could do for me and it actually made my pain worse. I live in a very rural area and there's not acupuncture available or I would definitely try it. I have yet to find anyone with A.S. and alopecia which I find very interesting. I have now been told it's inflammation pretty much in my whole body so I am sure that is what is causing the scalp pain and the hair to go-just don't know why nothing helps. Thank you for responding and for your kindness. God bless.
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Exactly Alice. I have been told for over 20 years now that I had TE and it would stop. I gave up on derms for years and then thought I would give it another try but never again. She just said it was autoimmune but not AA..Wow, thanks, that was very helpful. I just feel like if it would stop and I was left with this ugly hair or if it would all go I some how could move forward. But having to deal with the constant shedding, not being able to style, the burning, etc. on top of all my health problems is so overwhelming. I keep asking God for healing and acceptance until I get there. I don't think I could handle dark hair right now. It always made me look sicker. (I tried on some dark wigs the other day). Thanks for your kindness and response.
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Permalink Reply by Tuesday on
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Hi Pam. I have severe arthritis and AU and deal with a lot of pain. My cousin has AnkylosisSpondylitis however. Just like you, she went on a very strict anti-inflammatory diet. I am not sure how long it took her to see results but she definitely feels much better - she is off dairy, wheat, gluten and all nightshade vegetables. I believe she takes a variety of supplements, one in particular - it is "Zyflamend ". I also follow a strict diet. It has not helped my hair but I find if I avoid potatoes, wheat, dairy, tomatoes - my pain is much more contained.
I realize it's hard to watch your hair thin. I think the thing that people are getting at is though - people like myself - I too had lovely curly natural blonde hair - and it fell out in a few weeks. Not shedding. Gone. Every last bit. Like you, I liked my hair. It was my identiy and people complimented me all the time although I didn't really pay too much attention - I guess I took it for granted.
So, when you say you don't have alopecia, you are only now, after 20 years of shedding, seeing your scalp - and you are very disgusted by wigs and this hair thinning? It's kind of hard to relate because we are people who are wearing wigs, or have bald spots or are completely bald.
I'm sorry if I sound a bit harsh but I also have severe pain and can barely walk some days. And I"m bald as in not one hair left on my entire body. It's not like I've magically accepted it, either. I wish I had hair that was shedding not just confronted with a bald head every day. ANd yes, I am in a lot of pain too.
But, it is what it is. My arthritis is not going away, my hair is not going to come back and I need to get surgery to help replace joints and I need to adapt to my issues as best I can. So, I'm sort of trying to say - this is what you must accept. If your hair has been shedding all this time and it's not stopping and the doctors are not helping - at some point you just need to accept that it is thinning and get on with things. I would love to have my pretty hair back on my head - like I said - i have alopecia universalis - but it ain't happening. So, I must adjust. There's really not another choice.
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Thanks Larista. I actually started a prayer group for those who are chronically ill but I am just not comfortable talking about my hairloss with them since I have learned no one else has any hair loss. Thanks Tuesday for your reply. I have been gluten/dairy free for about 5 months but not seeing any changes and am on a new anti inflammatory as well. I learned this week that instead of positive results my eyes are now being effected by the AS and my head. I have often thought about those who lose their hair overnight or in a matter of days and think of what a shock that must be. So I understand what you are saying. But also, being told I don't have AA and watching and hoping all these years, raising my iron, Vitamin D, thyroid, etc. and seeing better levels but then losing more hair...it's just such a nasty, vicious, exhausting cycle. I DO have alopecia-my hair is falling out, period. I am just told it's not AA and that it would stop. I guess that's why I it's hard to accept that it hasn't. I never said wigs disgust me. I think the right one is beautiful. I have a very gorgeous wig, but it hurts to wear it because of my awful scalp/head pain. So my options are very limited. Sorry you are in so much pain as well.
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