COVID-induced scalp pain?

March 30, 2023 9:38 PM

I believe that I may have contracted (asymptomatic) COVID sometime between 2020 and 2021. My hair began falling out in chunks, and I also have diffuse thinning. My hair before was super thick and beautiful. What's worse, though, is that for almost 2 years, I have intermittent scalp pain accompanied by hair loss. What's going on here?

I tested myself often for COVID 2020-22, and always tested negative. However, there's a good chance that I had COVID anyway, as my partner and I both worked throughout COVID with the general public in various capacities. My hair began falling out, most noticeably from fall 2021 - now. Nowadays I have intermittent scalp pain consisting of burning, stabbing, sharp pain that jumps around my head in patches. Sometimes it feels fine, but it's definitely interfering with my life and I'm not sure what's going on and how to treat it. My dermatologist basically shrugged and said "genetics?" with no evidence for this, and prescribed monoxidil. But beyond the hair loss, the pain is deeply troublesome. What gives? What can I do about the pain (and the hair loss, which I think is linked to the pain)? My blood iron and protein levels are good and I'm fully vaccinated with like 6 COVID vaccines. My cholesterol levels are good too and I'm a healthy body weight and work out often. Age 33 cis female

posted by erattacorrige to Health & Fitness (14 answers total)

Have you had your thyroid checked? If you have not, I would assume that might be the issue before I would assume it's consequences of asymptomatic COVID.

As I said recently in a response to someone else here -- please be aware that the reference interval for normal levels of TSH often does not correspond to people's subjective experiences. It's considered normal up to 5, but when mine was around 5, my hair was falling out, among other issues with fatigue, sleepiness, etc. I feel good when my TSH is around 1 or a bit lower -- so basically only at the low end of the "normal" range.

Hypothyroidism is weird and can cause all sorts of weird symptoms including pain, tenderness, numbness, fatigue, etc.

So my suggestion based on what you are describing and your age would be to get your thyroid checked if you have not done that yet.
posted by virve at 10:00 PM on March 30, 2023 [11 favorites]

There's some suggestion in the literature that post-Covid hair loss syndromes and pain syndromes are not just something you're imagining. It's extremely difficult to make that connection, though, given your tenuous connection to Covid infection. Frankly speaking, both of those outcomes are common to many other post-viral scenarios and also are not uncommon to find in the clinic with no clear cause, especially as we get older.

This is something that you unfortunately will have to track over time. How does the pain change? When is it quiescent? When do you feel it most? Do lifestyle changes impact the pain severity, duration, nature, etc.? Is it better or worse when you're sleep deprived? Etc. These are the details that are impossible for a physician to collect in any given appointment. As you can build up a detailed picture of the signs and symptoms—how they arise, peak, subside, repeat—you're forming a "natural history" of what you're experinecing that can be used to more effectively explore a diagnosis.
posted by late afternoon dreaming hotel at 1:57 AM on March 31, 2023

PCOS can also cause hair thinning, maybe worth getting hormones checked?
posted by nouvelle-personne at 5:14 AM on March 31, 2023

Response by poster: I'm not super worried about the thinning so much as the unbearable pain... I don't have PCOS (I don't have hirsutism, no weight gain, I've gotten my ovaries checked for cysts via ultrasound several times recently, my hormones aren't out of whack, although my testosterone is slightly low but within the normal range, periods are totally normal). The pain flares at random, although of course, like all things, stress seems to increase the intensity of the pain. I have a spreadsheet charting the hair loss and pain, including what I've eaten that day and sleep, whether I washed my hair and with what shampoo, meds from that day etc. My dermatologist seems to have no idea what's going on... I got steroid injections near some of the hair loss sites, and a topical corticosteroid as well. Neither seems to have done much. I got tentative diagnoses of alopecia areata, AGA, and telogen effluvium, but there's not been discussion around which of these cause the pain. I've had hair fall before from a med that I'm not taking anymore, and I didn't experience pain at the time.
I think it's probably not unlikely that I did get COVID but never tested positive for it, as for so long we only had cloth masks and although we were consistent in wearing them, we both worked very public facing jobs in the days before vaccine availability. We'd both also come down with some pretty nasty upper respiratory conditions a few times throughout the pandemic, but never got a positive test result when we tested ourselves. My PCP mentioned a year ago or so that after most people have already had COVID even if they never tested for it/tested positive. I've since tested positive recently, and my scalp pain has flared up mightily since then.
posted by erattacorrige at 6:56 AM on March 31, 2023

I have diagnosed AA but have not experienced scalp pain. I'm wondering if your issues may be related to inflammation. I have been on a modified anti-inflammatory diet and I think it has helped me. I *try* to avoid gluten, dairy, sugar, and certain groups of foods like nightshades. I also take a daily Allegra. Your scalp pain could be related to migraines. I know that cytokine disfunction may be linked to both AA and migraines. Have you had your cytokine levels tested? If I were you, I would also consider seeing if you have any other types of autoimmune disease. I was told that if you have AA, there is a greater chance you have other types of autoimmune disease.

IANYD of course, but these are the things I would discuss with my doctor if I were you. I would also think about finding a dermatologist with more experience with hair loss/scalp issues. From what you shared, it doesn't seem like the derm you saw was very knowledgeable in that area.

I hope you find some relief soon!
posted by jraz at 7:55 AM on March 31, 2023

Just in case the only doctor you've seen for this is a dermatologist, I'd bring it up with a GP and, if they don't have any ideas, ask them whether a rheumatologist or possibly neurologist (in case the pain and hair loss are separate) might make sense.

I wouldn't insist on tying it to covid - it's one possibility, but one out of many.
posted by trig at 8:18 AM on March 31, 2023 [3 favorites]

Have your scalp examined in good light; it's possible to get shingles on your scalp. I don't know if it causes hair loss, but it can be so, so painful.
posted by theora55 at 8:42 AM on March 31, 2023 [2 favorites]

Response by poster: I saw a rheumatologist and got blood work done for (different) chronic pain (where some of my small joints were so swollen they were twisted - briefly - when I was 27. Ofc my rheum didn't see me on a "flare day" and the bloodwork revealed nothing. Current PCP refuses to order additional bloodwork for rheum issues).
I wouldn't insist on tying it to covid - it's one possibility, but one out of many.
ah, yeah, I get this. I pretty much only insisted on this because when I saw my PCP recently, the doctor seemed stumped and said, "unless you insist that it's autoimmune..." With a tinge of doubt in her voice, which is why I'm not pushing for that route anymore and why I've sought information regarding COVID-related hair loss, when all of my hormonal and nutritional related bloodwork came back looking good (which tracks, I'm conscientious about nutrition and working out).
it's possible to get shingles on your scalp
Okay, yes! I had a swollen node on the base of my scalp about a month ago and (a different, weekend) doctor looked at it and said, "hmm, looks like shingles, but... You're so young...?" And the discussion was dropped. An ultrasound of the node (which by then had gone down) revealed nothing.
I'll mention the cytokine stuff to my PCP next time I see them!
I had an appointment with a scalp specialist derm which I had to cancel because I unfortunately got COVID. And of course, seeing specialists usually mandates months-long waits.

I also stopped taking my Adderall in case that was causing inflammation, but my psychiatrist says it is unlikely to be the cause. I'd like to get back to taking it because it basically makes me functional.

So I'll revisit shingles w my PCP and also cytokines.
posted by erattacorrige at 8:54 AM on March 31, 2023

Have you checked for migraines? The scalp pain is one of my symptoms.
posted by Bottlecap at 10:07 AM on March 31, 2023

Scalp ringworm?
posted by aniola at 10:18 AM on March 31, 2023

"hmm, looks like shingles, but... You're so young...?

That makes me strongly suspect shingles and post-herpetic neuralgia (perhaps in addition to something unrelated causing hair loss), because people can and do get shingles at any age! Earlier-age shingles has gotten much more common in recent years.

I know someone who had shingles at 19 after never having had chicken pox, only the chicken pox vaccine. It's less common but very far from unheard of.
posted by metonym at 10:39 AM on March 31, 2023 [2 favorites]

Response by poster: Have you checked for migraines? The scalp pain is one of my symptoms
Does your hair fall out when you get a migraine? Essentially, I'll have a "flare" in a patch of my scalp, and then all of the hair in that part of my scalp starts to shed same day.
Re: shingles- I did have chicken pox twice when I was a child, something the pediatrician at the time was like uhh. Weird. Huh.
posted by erattacorrige at 10:40 AM on March 31, 2023

My husband had shingles when he was 19
posted by aetg at 5:15 PM on March 31, 2023

A scalp biopsy might provide some answers! It's not painful or complicated at all. I had one for hair loss and intense scalp itching. Was given inaccurate diagnoses prior that were ruled put by the results.
posted by CancerSucks at 12:07 AM on April 1, 2023