Extremely Depressed Over BFS & Weird Skin Problem

[BoAFriend]

I previously shared my experience here in this forum but later opted for my thread to be deleted since everything just came out like a rant. I've decided to just reach out again, but keeping it shorter and simpler this time around.

Since March of this year, I've been experiencing random twitching in my muscles and hair, along with zip/zap/vibrating sensations in my muscles and on my facial skin. I've gone to four dermatologists, one endocrinologist, and two neurologists - one neurologist confirmed that I most likely have what is known as benign fasciculation syndrome (abbreviated as BFS). The problem with this syndrome is that it is deemed harmless, and there's not much that can be done about it.

Skin wise, since March, I've also experienced random, spontaneous scarring (indented pockmarks and thin, indented linear lines) all over my face. The dermatologists I've gone to have done tons of blood tests for autoimmune disorders (Lupus, etc etc.), heavy metal poisoning, a full body check up, and vitamin and electrolyte imbalance. The internet says that I may have what is known as atrophia maculosa varioliformis cutis (known as AMVC) - the dermatologists I've seen have mostly never heard of this so-called extremely rare "disease" (one said she had heard of it but immediately told me she didn't think I had it, without doing any tests. There aren't any tests to test for this, anyways). I've had skin scrapings done to test for scabies, bugs, parasites, mold and fungus infections, but everything has come back negative. Pretty much I have no diagnosis for my scarring, but it's just something that's continuing on its own, with nothing that I can do.

It's been nearly 10 months of living in this hell, and I've been depressed for these past 10 months like no one would ever know. My parents know that I am depressed, but keep telling me to not be sad. I'm literally physically miserable every living day from the twitching, and emotionally am destroyed knowing that my face is looking worse every month (I have chronically bad acne, too). BFS is generally said to be caused by stress (although there is no determined true "cause")...I don't know. I have stress from work, and I'm emotionally stressed out by what I've been going through, but I just don't see how the stress could cause my body to have such weird things happen.

My mom keeps saying that "Oh, you're a guy" blah blah how no one is going to judge me because of my skin, but the problem is - I care. I've struggled with acne for years (still am) and my skin has always been my insecurity...but with pimples, big whoop - they come and go. But when your face is scarring away (literally deteriorating), it's an unimaginable horror. I feel like I've lost all self esteem, and the sad thing is that honestly speaking, I've been told that I'm pretty handsome. Even when I receive compliments, I can't take them seriously now. I hide behind a ton of concealer now, and none of that can cover my pain. Twitching/prickling wise, my parents have told me to just relax and not stress about my syndrome, but I'm consumed by the physical discomfort everyday.

I know there's nothing that anyone here on Soompi can do for me, but I'm....just very depressed. Is there anything anyone can do to be of comfort? I know it's a party pooper to write this on Thanksgiving evening, but it's a day to be thankful....and I just feel I'm trapped in sadness.

[Guest RYUUSEi]

You were given this life because you are strong enough to live it.

[Guest jdeux]

Share your experience by starting a blog? Maybe this can relieve and push out all your heart and feelings. And that also help others, I'm sure someone is out there that has the same thing.

Secondly, how is your diet intake?

[BoAFriend]

jdeux said: Share your experience by starting a blog? Maybe this can relieve and push out all your heart and feelings. And that also help others, I'm sure someone is out there that has the same thing.

Secondly, how is your diet intake?

[Guest jdeux]

you haven't answered my question. how is your diet intake? what do you eat?

[SunniRise]

I am sorry that this is happening to you. If you need sometime to talk to, I am here for you. <3

[BoAFriend]

jdeux said: you haven't answered my question. how is your diet intake? what do you eat?

[glORia...]

I can understand that you are naturally very frustrated over your situation and that it is very disappointing that medical professionals are unable to provide you with the answers you want. As hard as it is, don't lose hope!!! I am not sure if you have tried this already but have you tried seeking medical advice from other medically advanced countries? You seem to have done a lot of research online with regards to your signs and symptoms. This is not necessary a bad thing, but do also remember that the more you know and attempt to self diagnose this can cause you a lot of extra worry and stress you don't need as for all you know this condition may be similar but not the condition you have. A lot of people do exactly the same thing but you need to remember that all patients tend to think negatively of their condition and assume the worse scenario. Besides this, the health forums that you have been sourcing your information from are not necessary reliable sources either. Random netizens could have posted there, hence only regard this information lightly. We are always our worse critics! Speaking for myself, I don't think there is ever a day I can walk out of my house feeling truly confident in myself without wearing at least some concealer. On the days when I am feeling particularly hideous and I feel as if they are all looking at me and judging me on my appearance, I just remind myself that I am also judging what kind of person they are from the way they are staring at me as well. It works both ways. Just my opinion anyways, cheer up buddy!