Anyone suffering from an autoimmune disease?

[Heidi]

When an intruder invades your body—like a cold virus or bacteria on a thorn that pricks your skin—your immune system protects you. It tries to identify, kill and eliminate the invaders that might hurt you. But sometimes problems with your immune system cause it to mistake your body’s own healthy cells as invaders and then repeatedly attacks them. This is called an autoimmune disease. (c)

 

I have Alopecia areata. I lost my eyelashes in third grade (they have grown back a bit now) and got bald spots on my scalp around the neck and temple area in fifth and sixth grade. Lately my eyebrows have been getting thinner and thinner, which I can only guess has to do with university related stress. My mum has the rare version of the disease, universalis, meaning she has no hair on her whole body, at all. Stressful events can cause the the disease to worsen, which is why I suspect that mine might hit me harder than before in about 3-5 years after I've graduated and begun working as a teacher.

 

Slight side note; I also suffer from atopy, which is associated with this condition, I have very fragile nails, which apparently also has to do with the disease, and yesterday I realized that my dad has Vitiligo, another associated condition, meaning it's no wonder that I got AA after all. Now this is really intriguing! :D 

 

I'm okay with losing my eyelashes again, been there done that, but the thing that scares me the most is having no eyebrows. I know a lot of people draw them on, my mum for instance (and it suits her), but I'm already struggling with filling them in with eyebrow pencils and similar products..

 

Even though hair loss isn't something that will kill you, it definitely takes a toll on your self-esteem. It took me many years to be comfortable facing the issue and talking about it with family, friends and random people asking about it. I've been trying in recent years to look on the bright side of the situation: if I end up losing all hair on my head, I get to alternate between wearing fancy wigs and walking around bold and proud (perhaps shocking a few persons on the go lol). Quite the classroom topic! I even got my friend to promise me to buy me my first wig. My rather positive attitude might and probably will change when/if this happens, but right now I really like scaring people with stories of the numerous conditions I've had so far.

 

 

Anyway! Is there anyone else who's suffering from an autoimmune disease or am I a loner? How are you coping with it?

It's already past midnight here, so good night!

[Good People]

Wow sorry to hear it.

I believe it won't go away until you are rid of your stress... people might say that's a dumb thing to say, but then wwhy can't doctors cure certain things? Because they're not even caused by medical phenomena...

 

What stresses your mother out? Just think about it for yourself, it's time to free yourself from that or it's going to be a family tradition...

[Snow White]

I'm sorry to hear that. I hope that you will find strength to go through this and that your loved ones will support you, no matter what happens in the future.

 

I'm suffering from Graves' disease, which is different but it's also an autoimmune one. Because of that I had hyperthyroidism and it also affected my eyes but to a lesser extent. 

 

At first before the doctors discovered that I suffer from it and for some time later before they worked on it I was getting nervous very easily, my hands and my body was shaking, I had problems with sleep, heart palpitation, continuous headaches and high/low temperature intolerance. I took meds for several years and when they didn't really help much, the doctors decided that I have to have my thyroid removed. But they miscalculated some things and gave me wrong pills, and I fell deep into hypothyroidism, which is the other side of the spectrum, and then I really felt how my body "turned on me" and attacked itself.  My muscles and joints got really weak, and my spine hurt so much I couldn't walk or I walked as if I was paralised. I lost a lot of hair, was always cold, had swollen limbs and gained weight even though I barely ate. It also affected my psychically and I had a really bad side effects from the medication, so altogether that was one of the worst things that happened to me.

 

Now thankfully the doctor manage to more or less control it but I still feel some of the symptoms now and again when my thyroid hormones go lower or higher. Just like you, it stressed me a lot for years and affected my self-esteem, especially the weight changes when I have to explain to everyone why I suddenly gain or lose a few kilos. That and the fact that quite often my body "fails" me and I get fatigued quite quickly. It's always difficult to explain to other people because it's a disease that usually doesn't "show" outside but I feel the symptomps "inside", if it makes sense.

 

Sorry for the long post, I haven't met many people with autoimmune diseases and it's somehow a little difficult to be understood by people who aren't affected by something like that, so I thought I would share

 

Edit: Ah, I forgot about your other question. So, for the time when it was the worst for me, it really affected my life. I had to drop my second uni and couldn't really do anything. I'm a bit afraid of the future, because recently when I was looking for a job I got a bit worse and couldn't do it, but I'm hopeful that the meds will finally help. I don't think that it will ever be as okay as it is for people who aren't suffering from it and I always get stressed when I feel it getting worse again but I try to work on it, I guess that's the only thing I can do.

[missviolette116]

I suffer from IgA Deficiency. I get frequent respiratory infections, digestive problems , allegies, eye infection. And I am also asthmatic. It is pretty annoying because every single day I have something different. These days I have bad digestion.

[hess]

Found out about 2 years ago that I have lupus. It took a while to diagnose because no one in my family has it, and I was in between school and home so I had 2 sets of doctors on both sides. I just kept having week long fevers and chills about once a month for like a year for no apparent reason, plus a general soreness and getting out of breath really easily. Turned out to be lupus nephritis, and it had started affecting my kidneys, not that I could feel any difference, but apparently my kidneys were only working at 30% efficiency. Luckily there wasn't any permanent damage yet, and after about 1-2 years of medicine, I'm now in remission. The pills really sucked though, a lot of side effects.

 

For me it really was highly correlated with stress. I was stressed about school and not knowing what direction I wanted to in career wise. I think a big part of me getting better, along with the medicine, was figuring out what I want to do and focusing on what I need to do to get there. Hope it only gets better for you guys.

[Heidi]

Sorry for the late reply, guys! University just began and man, there's so much to plan for the upcoming years + I'm writing my Bachelor's thesis this year. Also, I'm here for anyone who feels a bit down, not only from an auto-immune disease. So talk to me and I'll try to help cheer you up.   

 

Wow sorry to hear it.

I believe it won't go away until you are rid of your stress... people might say that's a dumb thing to say, but then wwhy can't doctors cure certain things? Because they're not even caused by medical phenomena...

 

What stresses your mother out? Just think about it for yourself, it's time to free yourself from that or it's going to be a family tradition...

 

Stress definitely plays a big part in it. I'm quite stress prone since I always want to do my best and rarely tell people no when they ask for my help etc. Lately I've been more laid back in my attitude and haven't demanded as much of myself as I used to. So I guess I'm on my way towards a more stress free way of living. We're also considering an environmental factor since there are a couple of more identical cases nearby where my mother grew up. 

 

To be honest, my birth was the tip of the iceberg. She had areata as younger, but the stress of trying to get as much as possible done before giving birth (she wanted to compile some things that she could work on after giving birth) and the actual birth, which was 3 weeks early, was apparently too much.

 

I'm sorry to hear that. I hope that you will find strength to go through this and that your loved ones will support you, no matter what happens in the future.

 

I'm suffering from Graves' disease, which is different but it's also an autoimmune one. Because of that I had hyperthyroidism and it also affected my eyes but to a lesser extent. 

 

At first before the doctors discovered that I suffer from it and for some time later before they worked on it I was getting nervous very easily, my hands and my body was shaking, I had problems with sleep, heart palpitation, continuous headaches and high/low temperature intolerance. I took meds for several years and when they didn't really help much, the doctors decided that I have to have my thyroid removed. But they miscalculated some things and gave me wrong pills, and I fell deep into hypothyroidism, which is the other side of the spectrum, and then I really felt how my body "turned on me" and attacked itself.  My muscles and joints got really weak, and my spine hurt so much I couldn't walk or I walked as if I was paralised. I lost a lot of hair, was always cold, had swollen limbs and gained weight even though I barely ate. It also affected my psychically and I had a really bad side effects from the medication, so altogether that was one of the worst things that happened to me.

 

Now thankfully the doctor manage to more or less control it but I still feel some of the symptoms now and again when my thyroid hormones go lower or higher. Just like you, it stressed me a lot for years and affected my self-esteem, especially the weight changes when I have to explain to everyone why I suddenly gain or lose a few kilos. That and the fact that quite often my body "fails" me and I get fatigued quite quickly. It's always difficult to explain to other people because it's a disease that usually doesn't "show" outside but I feel the symptomps "inside", if it makes sense.

 

Sorry for the long post, I haven't met many people with autoimmune diseases and it's somehow a little difficult to be understood by people who aren't affected by something like that, so I thought I would share

 

Edit: Ah, I forgot about your other question. So, for the time when it was the worst for me, it really affected my life. I had to drop my second uni and couldn't really do anything. I'm a bit afraid of the future, because recently when I was looking for a job I got a bit worse and couldn't do it, but I'm hopeful that the meds will finally help. I don't think that it will ever be as okay as it is for people who aren't suffering from it and I always get stressed when I feel it getting worse again but I try to work on it, I guess that's the only thing I can do.

 

Thank you and how kind of you to share your story! It pains me to hear that you've been through so much, but I'm happy it hasn't completely destroyed you mentally or physically. Do you know what research has concluded so far, what factors could contribute to the emergence of it? I have to admit, I've only read about the disease a couple of times, years ago, so my knowledge it super limited.

 

Did you ever continue your university studies? Though it's really good that you're out there looking for jobs. I hope you'll find something that suits you and that your condition will either remain in stable or get better! Keep yourself positive! Here, accept a virtual hug from me!

 

I suffer from IgA Deficiency. I get frequent respiratory infections, digestive problems , allegies, eye infection. And I am also asthmatic. It is pretty annoying because every single day I have something different. These days I have bad digestion.

 

I'm so sorry to hear that! As if it's not bad enough to be ill with one thing.. How is it affecting your mood overall? I can assume it's quite tiring. How do you cheer yourself up when it's at its worst?

 

Found out about 2 years ago that I have lupus. It took a while to diagnose because no one in my family has it, and I was in between school and home so I had 2 sets of doctors on both sides. I just kept having week long fevers and chills about once a month for like a year for no apparent reason, plus a general soreness and getting out of breath really easily. Turned out to be lupus nephritis, and it had started affecting my kidneys, not that I could feel any difference, but apparently my kidneys were only working at 30% efficiency. Luckily there wasn't any permanent damage yet, and after about 1-2 years of medicine, I'm now in remission. The pills really sucked though, a lot of side effects.

 

For me it really was highly correlated with stress. I was stressed about school and not knowing what direction I wanted to in career wise. I think a big part of me getting better, along with the medicine, was figuring out what I want to do and focusing on what I need to do to get there. Hope it only gets better for you guys.

 

Oh no, 30% sounds really dangerous! I remember when I got anaemia; I suddenly got so weak that I barely could walk up a small hill to our school, got fever every week and just felt like.. meh. Luckily my diagnosis was made already after a month. I can only imagine how it must have felt to not be in a good condition for a whole year. Do you know, what does the prognosis look like? Is it likely that your condition might deteriorate within the near future or does it usually stay stable after a couple of years of medication? I assume it varies from person to person. 

 

I'm really happy that you found your calling; may I wonder what it is?

All the best to you and thank you for dropping in! 

 

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Thank you for all your stories so far! I've learnt so much these past few days about auto-immune diseases and I've also realized that you're a bunch of fighters. Stress seems to have a negative impact on most diseases, so I hope you'll be able to live you life as stress-free as possible in the future!

[hess]

Oh no, 30% sounds really dangerous! I remember when I got anaemia; I suddenly got so weak that I barely could walk up a small hill to our school, got fever every week and just felt like.. meh. Luckily my diagnosis was made already after a month. I can only imagine how it must have felt to not be in a good condition for a whole year. Do you know, what does the prognosis look like? Is it likely that your condition might deteriorate within the near future or does it usually stay stable after a couple of years of medication? I assume it varies from person to person. 

 

I'm really happy that you found your calling; may I wonder what it is?

All the best to you and thank you for dropping in! 

Yeah, I was pretty surprised because I'd just been sort of brushing off my sickness, and tbh I still kind of do. But yeah, that sort of feeling doesn't feel good. I remember a couple times just walking with my backpack and I didn't have the strength, I'd have to walk really slow and still be out of breath. It wasn't every day for the whole year though luckily. There'd be ups and downs. 

 

And yeah, it depends on the person. Some people find out they have lupus and it's like, oh okay. And it doesn't affect their day to day lives. Other people struggle more and have relapses when they become more stressed. It's a chronic disease though without a cure. But it's very rarely lethal. The symptoms themselves vary a lot person to person too.

 

I've decided to pursue a career in medicine. I still find myself struggling with confidence, resolve, and taking initiative, but I'm trying to work on it. It's like, rationally I know I should be able to do it if I put my mind to it, but a big part of me that I just can't reason with holds myself back. 

[!~Aishak~!]

I suffer from a lot of hair loss too :( I try to live with less stress

And u should not worry u are strong person fighting :*

[missviolette116]

 

 

 

I'm so sorry to hear that! As if it's not bad enough to be ill with one thing.. How is it affecting your mood overall? I can assume it's quite tiring. How do you cheer yourself up when it's at its worst?

 

 

 

 

Well, I often change moods since it affect my daily routine. Yesterday I got Chicken pox and it sucks real bad and it worries me since im on my second week of my first semester on college. Worried it will affect me academically and my grades too from the very beginning. Especially since I study architecture where it IS fundamental to assist classes to understand every topic. The only way to cheer myself is my cousin who informs be some important info about class and sometime sleeping and forgetting the worries at least for a while. Chicken pox is not helping with my sleep tho..