Hi,

I have had AU for 1,5 y now. I had AT 20 years ago and have been living happily with light AA (coming and going) since then.

Living with Alopecia for so long I am not so affected by loosing my hair but I have during the past year, living with no hair at all, had a bunch of smaller issues that has run me down. To mention a few; facial numbness, inflamed hip joint, shingles, light sensitivity, headaches, dizziness, fatigue, persistent hive, asthma, extra sensitive to allergies, constant pain in lower back and lower abdomen, menstrual patterns are off and muscle fatigue from the smallest effort.

I´ve been running to the doctors for the past year and have done both neurological tests and blood tests. I´m on heavy asthma and antihistamine doses on top of that I´m getting monthly shots for my urticaria.

I was prescribed sickleave last week as my energy is at the bottom after the year. Still there is no reason or no cause of all this.

 

I wanted to reach out if there are anyone else who has experience or knowledge of associated diseases to Alopecia Universalis?

I often hear that my symptoms could be stress related but I still honestly feel that it´s the symptoms that has caused the stress and not the other way around. At this point I´m happy to evaluate either angle. I just want to know what is off and if there is anything to do about all. People are often sympathetic to me for loosing my hair but honestly that is the least of my health problems at the moment.

 

Greatful if anyone has any ideas or experiences to share.

 

Thanks!

/ Kira

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Hi KiraC
I've had AU for over 40 years. I had doctors say if you have one autoimune disease you've probably got more. I have symptoms at times that make no sense. I'm not a doctor but sometimes I just have to live with it .
I wish you the very best. Hopefully you will get it all figured out

Best of luck
Tom

Hi Kira. Unfortunately I do not have much knowledge or experience with other diseases associated with AU but want to offer you support. I too have had AU for almost 2 years now but otherwise am in good health (minus a slight Vitamin D deficiency which is still up for debate if that is truly a medical condition and a bout of situational depression that I have overcome). My only suggestion is to ask the right questions and listen to your doctors. If you do not agree with your doctor than get a second opinion. Do you eat healthy and exercise? A lot of people underestimate how much diet and exercise (or lack thereof) affects our health, especially us with autoimmune disorders. Are you familiar with naturopathy? This is in NO way a substitute for western medicine but there are ways to treat some of the symptoms you describe naturally (since you already seem to be taking a fair amount of meds). But again you would just be treating the symptoms and not the underlying issue(s). I hope you find what is causing all these symptoms and I wish you well. Take care!

 

Hi Kira!

Am Debbie and I live in Nevada. I don't have any support groups in NV except on here. I had started out having AA first.Then it had turned into full AU! The best part of having I think, is not shaving my legs or my arms. Don't have any odor under my arms either!

I believe that AU has a lot to do with stress and genes. Am a stress person all the time. I've been married for 44 years now. Have had lots of ups and downs in my marriage. I used to loose weight, gained weight, get cancer sores In my mouth when I was under stress. For some reason it finally had attacked my head and body. It has taken me a very very long time in accepting this auto-disease. Since, I had seen this film above, I've  accept being bald and not getting my beautiful auburn/brown hair back .I do wear a head cover when am in the sun. Like the beach, walking the dog. etc.

I think it depends on the person and  how they feel about the disease and themselves. It has taken me a very very long time accepting the fact that I have AU and its part of who I am.  Its been more than 10+ years since I had AA. Now, I go out in public, church, grocery store, or any other place I would be going. Having no hair, it's just part of me and I've learned to go without a head cover now.

As far as your other systems I don't know if it has to do with having AA or not.so I can't tell you very much about it.

What I do know is that when my husband would be under a lot of stress, or didn't want to go to work he would break out with hives all over his body and itched a lot! Drove him crazy!!

Do you work? What do you do at work?  Are you happy at work? Stress could be the cause of some of the things you had mentioned above. One lesson I've learned is if you're not happy in what you do at work.people....you need to quite your job and find something else.!

I hope this has helped you. Would love to hear from you also! Bless you, keep your Faith, and keep going strong. thank you for your letter!

Deborah.

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