My hair is twisted under my scalp…it moves down my body coming out

This is the first I’d ever heard of this, but a quick internet search helped me realize how MADDENING this must be!
Here’s what I found, in case it helps anyone.
Twisted or matted hair under the scalp, sometimes called Plica Polonica or Plica Neuropathica, can be a condition where hair becomes irreversibly entangled, forming compact, hardened masses. This can be caused by various factors, including psychological disturbances or, in some cases, a genetic predisposition.
Elaboration:
Plica Polonica (Plica Neuropathica):
This condition is characterized by tightly packed, matted hair that is resistant to detangling. The hair becomes irreversibly twisted and entangled, often forming a solid mass that is difficult to remove.
Acute Hair Matting:
This refers to a sudden, severe twisting and matting of scalp hair, often forming a tightly packed mass. It's also known as Plica Neuropathica, Plica Polonica, or bird's nest hair.
Causes:
Psychological Factors: Plica Neuropathica is more common in individuals with psychological disorders or those experiencing significant stress.
Genetic Predisposition: Some cases of Plica Polonica may have a genetic component.
Mechanical Factors: In some cases, the matting can be caused by excessive rubbing, scratching, or combing of the hair.
Defective Keratin Production: Pili torti, a condition where hair is abnormally flattened and twisted, can sometimes be associated with defects in keratin production.
Diagnosis:
A physical examination is typically sufficient to diagnose Plica Polonica or acute hair matting. In some cases, a biopsy or hair pull test may be performed to rule out other conditions.
Treatment:
Treatment typically involves gently separating the matted hair with a combination of warm water, oil, and a gentle scrubbing brush. In some cases, a professional hair stylist may be necessary to remove the matted hair.
Other Related Conditions:
Trichonodosis: A condition where hair develops knots on the shaft.
Pili torti: Twisted hairs characterized by flattening and twisting of the hair shaft.
Loose Anagen Syndrome: A condition where hairs in the growing phase (anagen) are easily pulled out of the follicle.

I thought I was losing my mind especially after trying to explain this to different types of doctors for over a year with no answers. Everything you wrote I suffer from, do you know what's causing this or have any answers related to this condition?

I continue having problems with this and trying to find a solution or a reason or a connection to someone or something.after reading through all responses I’ve wondered if anyone thinks it might somehow be related to Covid either having covid or getting the vaccine?….also before all the twisting painful hair problems I had recently used a drill to hang metal shelves and pieces of sparkling tiny fibers (similar to fiberglass fibers) appeared on and under the skin on my arms and hands…could this be somehow related?

Hi everyone,
It looks like I found another group of my people. I say "my people" because I have this same condition and so does my wife. I characterize mine as follows. Imagine a half dozen or so hairs that are twisted into a rope-like structure, then some type of biological thread is wrapping those hairs into a bundle and pulling them down onto my scalp. Once on my scalp, my skin grows over the top, leaving "nodules" as the ER doctor called them under the skin. He said my neck was affected, and clearly my scalp was too, or he wouldn't have seen the nodules in the CT scan.
I wasted some time at a derm's office, and got called "mentally ill" for the symptoms I described. So I went home, shaved my head, and went back to the same derm's office. The head honcho dermatologist walked in, pointed to my head and said "that's psoriasis". This was very surprising to me, as there was no red color anywhere, just inflamed skin growing over my hair follicles/shafts. As derms often do, he gave me a prescription for clobetisol and sent me on my way. I knew this was akin to treating a 3rd degree burn with chapstick, so I made an appointment with a Rheumatologist at Vanderbilt University Medical Center. I turs out that it was my first step toward getting better.
So the Rheumatologist went through his normal list, and after our conversation and some blood work, he put me on methotrexate. Fast forward one year, and my condition was significantly improved. I discussed the improvements with my rheumatologist, and he decided that it was time to try a biologic. Within a couple of days, a Skyrizi injection arrived, and I promptly injected the med into my leg. A couple of months later, it was time for injection #2, and into my leg it went.
As of today, my condition has significantly improved. The scalp and neck issues are annoying, but no longer an emergency or profoundly concerning. And remember when I said my wife has the same condition? Well she's been on methotrexate for 6 months, and her progress mirrors mine. She hasn't started Skyrizi yet, but her improvement mirrors mine when I had been on methotrexate for 6 months.
So what you have is an autoimmune disease. Is it really psoriasis? I have my doubts. It doesn't look like psoriasis (photos I've seen online), but the derm is convinced that's what it is, and it's responding well to immunosuppressants. Whether it's psoriasis or not, it's responding to immunosuppressants.
Now let's apply all this info to the conditions you've described. You've tried everything, right? (Me too.) All the shampoos, oils, conditioners, bath salts, Nizoral, and let me guess - it helped for a few days, then stopped helping. Well that's because your body adjusted to what it was doing. Your body "thinks" it's doing what it's supposed to do, that's why it's overcoming the effects of everything you throw at it. How about non-scalp symptoms? Do the bottoms of your feet sting? Mine too. Do you have random "pin stick" sensations? Yep, me too. I have a list of 20+ more if anyone wants to discuss it.
I know how miserable this is, and I'm sorry a) that you are going through it, and b) there seems to be no obvious cause, or even an obvious diagnosis. What I do know is that if you have what I have (and it sounds like you do), you may as well skip all the derms and GPs, and head to a rheumatologist. Something out there has flared your/our immune system, and immunosuppressants / immunoregulators are the only thing that will help.

Hi everyone,
It looks like I found another group of my people. I say "my people" because I have this same condition and so does my wife. I characterize mine as follows. Imagine a half dozen or so hairs that are twisted into a rope-like structure, then some type of biological thread is wrapping those hairs into a bundle and pulling them down onto my scalp. Once on my scalp, my skin grows over the top, leaving "nodules" as the ER doctor called them under the skin. He said my neck was affected, and clearly my scalp was too, or he wouldn't have seen the nodules in the CT scan.
I wasted some time at a derm's office, and got called "mentally ill" for the symptoms I described. So I went home, shaved my head, and went back to the same derm's office. The head honcho dermatologist walked in, pointed to my head and said "that's psoriasis". This was very surprising to me, as there was no red color anywhere, just inflamed skin growing over my hair follicles/shafts. As derms often do, he gave me a prescription for clobetisol and sent me on my way. I knew this was akin to treating a 3rd degree burn with chapstick, so I made an appointment with a Rheumatologist at Vanderbilt University Medical Center. I turs out that it was my first step toward getting better.
So the Rheumatologist went through his normal list, and after our conversation and some blood work, he put me on methotrexate. Fast forward one year, and my condition was significantly improved. I discussed the improvements with my rheumatologist, and he decided that it was time to try a biologic. Within a couple of days, a Skyrizi injection arrived, and I promptly injected the med into my leg. A couple of months later, it was time for injection #2, and into my leg it went.
As of today, my condition has significantly improved. The scalp and neck issues are annoying, but no longer an emergency or profoundly concerning. And remember when I said my wife has the same condition? Well she's been on methotrexate for 6 months, and her progress mirrors mine. She hasn't started Skyrizi yet, but her improvement mirrors mine when I had been on methotrexate for 6 months.
So what you have is an autoimmune disease. Is it really psoriasis? I have my doubts. It doesn't look like psoriasis (photos I've seen online), but the derm is convinced that's what it is, and it's responding well to immunosuppressants. Whether it's psoriasis or not, it's responding to immunosuppressants.
Now let's apply all this info to the conditions you've described. You've tried everything, right? (Me too.) All the shampoos, oils, conditioners, bath salts, Nizoral, and let me guess - it helped for a few days, then stopped helping. Well that's because your body adjusted to what it was doing. Your body "thinks" it's doing what it's supposed to do, that's why it's overcoming the effects of everything you throw at it. How about non-scalp symptoms? Do the bottoms of your feet sting? Mine too. Do you have random "pin stick" sensations? Yep, me too. I have a list of 20+ more if anyone wants to discuss it.
I know how miserable this is, and I'm sorry a) that you are going through it, and b) there seems to be no obvious cause, or even an obvious diagnosis. What I do know is that if you have what I have (and it sounds like you do), you may as well skip all the derms and GPs, and head to a rheumatologist. Something out there has flared your/our immune system, and immunosuppressants / immunoregulators are the only thing that will help.

This is very interesting and seems so hopeful Thank you so much for telling me this!

Sent from Yahoo Mail for iPhone

Oh, yes, I'm glad to see that there's some people out there that have this. I'm wondering if we are all share a similar time frame of around one to two years ago.

I'll share a few of my key observations and experiences.

1. Excruciating pain
Top middle of my head felt like somebody was stacking bricks in a circle and something was trying to drill in the middle of my sculp, at the same time coming right up my butt through the hole.
2. Location.
Traveled around the body until it locked in. But would settle and always go to the top of middle of my head and the hole in my butt.
3. Nobody could see it
4. Felt mechanical or intentional.
5. Weird sensations and tingling in my nervous system on it, some primary points and extra Tingly on smaller branches. It felt like someone was trying to communicate with me through my nervous system.
6. Small ball of clear, slow moving electricity that would linger on me for days.Cold and heavy felt like it was docking on my back. Water would splash off of it, like a shield, and not get me wet when I was taking a shower.

I do not believe the doctors know what this is. I believe they're stamping, it with their best guess with the closest classification that makes sense to a billable diagnosis.

I'd be interested to know if anybody had similar experiences.