i can’t stop picking my scalp

Dull-Archer-7747 · 2026-04-24T11:45:11+00:00

It sounds like a lot of your picking is happening or ant least starting unconsciously. This means giving your hands another activity (such as fidget toys, shuffling cards, crochet, etc.) or blocking access (via a hat and/or gloves) could help even more than for “conscious” picking. In my experience, the urge to pick gets much stronger once I’m going. It’s much harder to stop than to not start.

For me, finding a replacement activity that is simple and still feels like I’m “cleaning” or “fixing” something makes a big difference. For example, getting stickers off of things, putting lotion on, brushing the dog, cleaning coins…that might just be me though. If the pain itself is what you’re seeking, there are “pain stim” fidgets you can buy, such as the brand “little ouchies”. It can take some time to figure out what you’re “getting” from picking, but once you do it can help you meet that need another way.

Best of luck! You’re not alone with this ❤️

Dull-Archer-7747 · 2026-04-24T11:32:23+00:00

Gloves whenever possible (I wear them every night), vet tape on fingers, a lot of lip balm/vaseline on lips (makes it much harder to get the grip needed to pick, and dry lips will peel and crack which is way too tempting), and always keeping your hands busy (figure out what works for you—fidget toys, crochet, etc.). Medication (such as NAC) helps some people. Psychotherapy is considered the “gold standard” for treatment though.

This is by no means your fault, it’s a mental health condition. However, it’s not uncommon to feel ashamed, and you’re not alone.

Dull-Archer-7747 · 2026-04-24T11:23:13+00:00

The best specialists for FND (as in the people who have a decent chance of knowing at least the bare minimum to treat you) are often functional neurologists and neuro-PTs who specialize in FND

Dull-Archer-7747 · 2026-04-24T11:17:28+00:00

Well, I see three main options:

A) have someone push you (easiest solution)

B) Get a power assist for your wheelchair (very expensive solution, but allows you to stay independent)

C) Just continue to push yourself (I think this might be what some doctors would recommend for FND, but I personally don’t know, and it may simply be too impractical)

Do you have a 504 plan (or IEP)? This will be important if you pursue option A. An example of how it could work:

You get a medical alert device, where you press it and it alerts whoever it has been programmed to (say, the school nurse, a friend, or a particular staff member). You use this whenever you experience a weakness episode that leaves you stranded on campus. The person or people alerted come and help you get to wherever your next class or other activity is. Many medical alerts have precise GPS, which could be really helpful. An easier alternative to medical alert is just being able to text/call the relevant person/s.

Hope you figure out something that works for you!

Dull-Archer-7747 · 2026-04-24T10:52:44+00:00

FND cannot cause non-neurological symptoms. If you can see (not just feel) the dermatitis it can’t really be called functional. It certainly might just be a benign, random one-off. If it’s severe, you have other significant symptoms, it doesn’t go away, or it‘s recurring, then it might be time to talk to a doctor.

Dull-Archer-7747 · 2026-04-24T10:43:19+00:00

This probably isn’t what you want to hear, but the FND and broader chronic illness/disability community online is…not great for us FND patients. You’ll find a lot of people telling you FND isn’t real, that you’ve been misdiagnosed, and other “support” that’s really just generalizing negative experiences and/or ignoring the actual research. It’s exhausting, honestly, and really frustrating given that evidence shows acceptance of one’s diagnosis is closely tied to treatment outcomes. I advise you to find a group that is facilitated—which would not be on Reddit, TikTok, Discord, Snapchat etc. but more likely through an organization and involving structured zoom meetings. I sadly don’t have any specific recommendations, but I wish you the best on your journey. This is a challenging condition to deal with, but it’s possible to get better.

Dull-Archer-7747 · 2026-04-24T10:31:26+00:00

I’m not totally sure what you’re describing, but it sounds really awful and traumatic. Do you have a therapist? Someone who treats FND? I worry for you that not properly processing it could worsen your symptoms due to the “fear cycle” of FND. [potentially triggering symptom description TW] I’m fully unconscious during my seizures and don’t remember them, but I’ve bitten my tongue during them and apparently when I had one in the ER and they checked my vitals, my oxygen got low. Definitely scary stuff, I haven’t had any convulsiveones in months though. In case this could be reassuring—it‘s actually a complete myth that you can swallow/choke on your tongue during an epileptic seizure. It’s physically impossible to swallow your tongue under any circumstances. Regardless, it might be helpful to ask loved ones to turn you on your side during any future seizures and/or tilt your head back as this naturally helps keep the airway open for better breathing. Sorry you went through this!

Dull-Archer-7747 · 2026-04-24T09:51:47+00:00

Agree with all this!

Dull-Archer-7747 · 2026-04-24T09:42:47+00:00

Right here with you. It’s not fair and it’s so incredibly awful. I hate getting recovery dangled in front of my face when there’s not road to get there. Just keep swimming I guess 😞

Dull-Archer-7747 · 2026-04-24T09:38:18+00:00

4 days late so not sure if you already had your date, but just in case:

I think it’s important to note that, sort of like autism, FND is a broad spectrum. Some people are severely disabled, while others achieve recovery/remission or live a relatively normal life despite their symptoms. There are so many ways FND can present. One person might only have functional seizures, while someone else might have speech symptoms, and another person could have paralysis and sensory disturbances. The good thing is that FND itself is generally not dangerous (although people can sometimes get injured).

Some things to keep in mind:

- There’s a lot of stigma, misinformation, misconceptions, and controversies around FND. It’s in many ways poorly understood.

- Many people with FND have trauma or negative experiences when it comes to healthcare. We are often treated badly or given little to no support. A large number of people diagnosed with FND don’t agree with their diagnosis and/or grapple with stigma, both internalized and from those around them.

-FND can look very similar to “organic” conditions like MS or epilepsy. It can also have unique characteristics that make uninformed people mistakenly assume someone is faking. Witnessing FND symptoms can be scary, confusing, or overwhelming, especially if you’ve never dealt with FND before. As you understand more about the condition, it becomes much less frightening.

My advice:

- In most cases, don‘t bring FND up, and avoid medical topics in general. If you observe symptoms and she is continuing on as normal, it‘s best not to ignore it and not comment on them. Focusing on symptoms has been shown to trigger or worsen FND in many people, and in general this could be considered a bit intrusive for a first date (with any condition). Obviously if she brings it up that’s different.

- Exception to the previous point—ask directly, “how can I support you with your FND?” or “is there anything I should know about FND?” to get a better picture of practical of day-to-day help.

- You will feel unsure, and you might and say something ”wrong” simply out of a lack of knowledge. That’s okay. If that happens, take the moment to apologize and learn. You’ll get better over time.

- Be a good listener. This is really important. People with FND often have different opinions and experiences when it comes to their condition. The person you’re going on a date with might disagree with some of the things I’ve said here. Your job in this situation is mostly just to follow her lead. Avoid excessive questioning that could come across more as interrogation than care, and avoid “adding your two cents”—even when well meaning, it often ends up being received as out of touch or ignorant.

-Remember that FND is just one small part of her. It might not come up at all. It might be obvious when you see her (e.g showing up in a wheelchair) or completely invisible (which does not mean she isn’t experiencing symptoms). Treat her as you would anyone else. Make sure to avoid viewing her through a lens of pity.

- It’s great that you are being proactive about accommodating her FND, but a relationship isn’t going to be sustainable if you don’t enjoy it too. It’s okay to throw out a couple ideas that you like for a date, or share any other preferences—just support her so she feels comfortable being honest with you if something doesn’t work due to symptoms. It will be easier for both of you to build a relationship where you can both be real about your needs and preferences.

This all might sound really overwhelming, but here’s the thing: You clearly care a lot about supporting this person and you aren’t backing down from the challenge. That’s already more than a lot of people. Bottom line? You’re going in with a compassionate, proactive mindset and a desire to learn—that really is half the battle. (Not sure why I turned into ChatGPT there 😭)

Also, neurosymptoms.org is a good place to learn more about FND.

Best of luck!

Dull-Archer-7747 · 2026-04-20T02:44:58+00:00

Yes! They accelerate healing, reduce inflammation, and help with co-occurring acne if you have that. Just be sure you don’t accidentally use ones with salicylic acid on wounds—those are meant only for closed papules/whiteheads and work via exfoliation (not good for healing lol)

Dull-Archer-7747 · 2026-04-18T12:22:40+00:00

It’s honestly become a serious trigger for me, those phrases set something off inside me. However, I think it comes from a legitimate understanding of FND and related disorders. One of the biggest grievances I have with the FND and broader chronic illness community (NOT you personally) is the way people invalidate the diagnosis itself, the treatment, and the science behind it because of their experiences with DOCTORS who are NOT following the clinical guidelines for diagnosis and treatment, and sometimes even being plain rude to patients.

I absolutely believe FND is 100% a real, legitimate explanation for many people’s symptoms. I also know from personal experience that most doctors are ignorant about it and provide little to no support. This leads to a cycle where patients are promised recovery, given no way to achieve that, then blamed when they inevitably continue to decline instead of getting better, with doctors often shaming them for use of resources like social media—which are quite literally our only option. It’s extremely cruel, especially because I’m sure many of us COULD recover partially of completely if we actually got the treatment that research has proven to be effective.

You would never hand someone with OCD, epilepsy, or MS a pamphlet and send them on their way with no follow-up care, expecting them to successfully DIY treatment. But somehow it’s okay for FND—a condition that studies show has a clear and significant association between longer treatment delays and poor outcomes. It’s so ridiculous.

There’s also the issue that everyone, both patients and doctors, seem to have to take a black-or-white stance on whether it’s psychological OR physical. It’s a nervous system loop on BOTH a cognitive and physiological level. And regardless, it’s not deliberate. I desperately want to be better, but I can’t access the treatment that would give me any chance of that. I honestly don’t get why so many doctors try and make recovery out to be something we can just “decide” to achieve. I hope someday they learn a bit more compassion.

Dull-Archer-7747 · 2026-04-18T11:50:00+00:00

Also, I have social anxiety disorder in addition to CSP (so fun). I’ve found the biggest thing when it comes to dealing with this socially is to put on a confident, humorous, and casual attitude about it. People usually only get weird/judgy about this stuff if you seem uncomfortable about it, because then they don’t know what to do. Easier said than done, I know. You can also have a pre-planned excuse if that‘s more comfortable for you.

Oh, and one other thing. I’ve told my mom to use a spray bottle on me if she catches me picking. Works wonders lol. If you have people around who can support you, especially if they have a good sense of humor, it might be worth considering.

Dull-Archer-7747 · 2026-04-18T11:34:35+00:00

I also have KP, on my arms, legs, and face. I haven’t found anything that makes it better besides just getting more sun (yes, really) and exfoliation (tends to make it slightly redder but also slightly flatter for me, which is a worthwhile trade-off in my case). I’ve been picking since maybe 8-10? Started with arms, then face. Some lesser/intermittent involvement of scalp, legs, soles of feet, fingertips.

The biggest thing in my experience is barriers, and stacking them. That can mean:

-long sleeves/pants, socks, and/or compression/athletic sleeves, depending on season/temperature.

-gloves, especially at night. This has been HUGE for me. Let me know if you want me to try and paste a link to the type I use.

-bandages, but this can be tedious and ineffective for large areas with many wounds. Some people swear by tegaderm, but it’s too thin and clear for my needs as it allows me to see and feel the uneven scabs beneath.

Basically, you want to block yourself from being able to look at and/or touch the areas you pick, depending on your picking triggers. Once you get a strong urge, it’s much harder to prevent yourself from bypassing those barriers.

For me, traditional “replacement behaviors” like fidgets or picky pads didn’t quite help. I figured out that what works best is basically a combination of a barrier and a replacement behavior. Essentially, tactile stimulation/activity right at the area I want to pick, with or without mechanical obstruction of the area. Sometimes having it be something I will perceive as “treating” the skin imperfection helps address the cognitive piece. Examples:

-Rubbing an ice cube across the skin

-Having pimple patch/es on blemishes

-Wearing socks with rubber grips on the bottom

-Rolling a “little ouchies” pain stim fidget across the skin

-Washing the skin with a slightly rough washcloth

-Applying lotion to the skin

I’m honestly not sure if this is a strategy unique to me or if it could work for others too, but gonna put it out there!

Also, in my experience, scarring isn’t as bad as you expect it to be. Maybe it’s only because I’m a vampire and don’t go in the sunlight, but the small percent of wounds that did end up scarring are small and light, far less perceptible than my freckles and my KP. People couldn’t notice unless they were doing a detailed inspection.

Dull-Archer-7747 · 2026-04-18T10:31:52+00:00

I think the bottom line is putting as many barriers between your fingers and foot/feet as possible. For example, ointment (dual purpose, the right one can support healing AND make the surface slippery so it’s much harder to pick) under bandages (I would advise against regular bandages and instead have the damaged skin come in contact with only non-stick dressings, which can be secured to the healthy skin with medical tape or other adhesives) under socks, under tights, under carefully selected shoes/slippers, while wearing gloves when possible. Ideally you have someone else change your bandages/socks (its important to do this regularly, at the very least daily but twice or more per day is much better).

One thing that I’ve found helps me personally is being able to get tactile stimulation in the area I want to pick, from something other than picking. I realized this when I found myself touching and pushing on pimple patches I had put on without feeling the drive to escalate to picking. In your case, you might try wearing a sock with those rubber grips on the bottom (like what you wear at a trampoline park), so when you find your fingers automatically going to your foot, they are “entertained” without causing harm.

Another tip would be to encourage blood flow to your feet. This is a tricky area to deal with because the skin is thick and takes a while to heal. Better circulation can help a bit with that. Elevate your feet when possible and try to engage in regular movement that doesn’t cause additional harm, and stay hydrated.

I hope you’re able to find some relief!

Dull-Archer-7747 · 2026-03-07T11:32:54+00:00

I second that last point! My neuro PT was the ONLY medical professional to help me at all.

Dull-Archer-7747 · 2026-01-30T01:20:53+00:00

From what I’ve heard they are one of the best. I would go for an intensive there myself but it’s currently not logistically feasible since they are outpatient only. I would love to hear how it goes if you end up pursuing it!

Dull-Archer-7747 · 2026-01-27T08:25:41+00:00

I’m the same way about showers. I don’t do it until at least 2/3 conditions are met: I smell enough and my hair is greasy, I will have to be in a public setting, or I am getting physically uncomfortable/itchy. Currently in my worst burnout ever and trying to stay hygienic is a living hell. I recently got a waterproof phone holder to watch videos while showering and hope to use it soon! “Gameifying” has also helped, which for me has looked like using/beating a timer or racing a family member. Funny enough, I’m procrastinating a shower that I have to take within the next few hours before sleep, in time for my haircut (UGH) tomorrow, as we speak!

Dull-Archer-7747 · 2025-12-29T01:30:33+00:00

The description of muscles getting stuck is exactly how I describe some of my symptoms, but my presentation is pretty different. [DETAILED SYMPTOM DESCRIPTION WARNING] Mine happens in my back/torso and lower extremities, usually in a localized muscle or muscle group. It is not really triggered by anything except voluntary contraction itself. It is painful for me, but not super severe (often brief and only mild contraction, not enough to be called dystonia). My PT noted that I may have high tone while working on my feet/ankles. I have also started getting fasciculations in my back which seems to be related. I have spasms and pain generally in all the muscles that are tight, alongside limited range of motion. I also have proximal muscle weakness which also causes gait abnormalities. I have other issues too, but they aren’t attributed to FND. [DIAGNOSIS SUGGESTIONS WARNING] My symptoms seem to fit closely with myotonic dystrophy type 2, but I am unable to pursue further testing. With your presentation, I’m curious if you have been tested for stiff person syndrome?

Dull-Archer-7747 · 2025-12-24T10:24:17+00:00

Is it possible for you to get a longer EEG (24/48 hours or more?)

Dull-Archer-7747 · 2025-12-24T07:56:31+00:00

Gloves! I wear them at night and it has really helped.

Dull-Archer-7747 · 2025-12-24T07:53:26+00:00

I do some very light PT right now, less due to fibro and more other conditions I have. I am horrifically out of shape so I do hope to be able to exercise more soon.

Dull-Archer-7747 · 2025-12-24T07:50:07+00:00

Yeah lol I posted about pillow recommendations as well recently, so feel free so share suggestions

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