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Tender scalp ?

Posted by ronludington @ronludington, Aug 18, 2025

originally i was diagnosed with GCA / PMR , but i didnt have temple headaches, i had the jaw claudification (hurt to chew ir open wide) but i did have a tender scalp, but on the crown of my head. Its 7 years later, many iterations of prednisone... but i still have this tender scalp, kind of feels like a slight sunburn or slight bruise. But if you keep touching / stroking it (lightly) it stops . All the drs just shrug and say they don't know. Wondering if it's still a remnant of gca. Anyone else have this ? Or any ideas ?

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Profile picture for sassysaveur
sassysaveur | @sassysaveur | 6 days ago
In reply to @SusanEllen66 "@ronludington I have been diagnosed with occipital neuralgia. That is the cause of my scalp pain...." + (show)
Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@ronludington

I have been diagnosed with occipital neuralgia. That is the cause of my scalp pain. I tell people that my hair hurts. It also affects my face my neck, my ears. Sometimes I think I have a sinus infection or a tooth infection but I don’t. It’s the nerves under your scalp that get inflamed. I went for physical therapy and they taught me how to stretch my neck when that happens when the pain happens and it really doesn’t help all that much just a little, but you might want to check out occipital neuralgia.

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@SusanEllen66 so you have a diagnosis of PMR or GCA or both? And then a separate diagnosis of occipital neuralgia?
Is the occipital neuralgia totally unrelated to the other diagnosis very curious about this I would like to hear more thank you

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sassysaveur | @sassysaveur | 6 days ago
In reply to @SusanEllen66 "Scalp pain is mainly on the top of the head when you have occipital neuralgia. Inflammation..." + (show)
Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

Scalp pain is mainly on the top of the head when you have occipital neuralgia.
Inflammation of the nerves under the scalp causes pain in your face too.

I have it.

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@SusanEllen66 and it’s totally unrelated to the PMI and GCA? Seems so weird that you would have Pam and GCA and then have some other separate diagnosis unrelated. I’d be interested to hear more of your story about when it started and was it at the same time as the other symptoms and treatment thank you.

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pegpete | @pegpete | 4 days ago

I have had the crown of my head be tender to the touch two times. It lasted a day or two and then went away.
No explanation why it did this. I also get an aching in my right jaw that goes away if I warm it up with my hand for a few minutes.

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Profile picture for SusanEllen66 Susan McMichael
SusanEllen66 Susan McMichael | @SusanEllen66 | 15 hours ago
In reply to @sassysaveur "@SusanEllen66 and it’s totally unrelated to the PMI and GCA? Seems so weird that you would..." + (show)
Profile picture for sassysaveur @sassysaveur

@SusanEllen66 and it’s totally unrelated to the PMI and GCA? Seems so weird that you would have Pam and GCA and then have some other separate diagnosis unrelated. I’d be interested to hear more of your story about when it started and was it at the same time as the other symptoms and treatment thank you.

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@sassysaveur I only have Occipital Neuralgia
The back of my neck the Occipital area is inflamed. The nerves from there branch out all around the head including under the scalp, down the side and across the face.

It’s inflammation of the Occipital nerves.
It is not related to the arteries like GCA, only the nerves.

Does that help you understand?

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sassysaveur | @sassysaveur | 10 hours ago
In reply to @SusanEllen66 "@sassysaveur I only have Occipital Neuralgia The back of my neck the Occipital area is inflamed...." + (show)
Profile picture for SusanEllen66 Susan McMichael @SusanEllen66

@sassysaveur I only have Occipital Neuralgia
The back of my neck the Occipital area is inflamed. The nerves from there branch out all around the head including under the scalp, down the side and across the face.

It’s inflammation of the Occipital nerves.
It is not related to the arteries like GCA, only the nerves.

Does that help you understand?

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@SusanEllen66 yes your explanation is helpful. This is your only diagnosis. And you do not have PMR or GCA also? That would make sense.

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