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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I feel crawling and most of the time my head feels like someone beat me in my head top

A MyLupusTeam Member asked a question 💭
Lakeland, FL
January 12
 · 
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Lupus and Crawling Scalp Sensation: Causes and How To Manage It Read Article...
A MyLupusTeam Member

@A MyLupusTeam Member I've got that too sometimes, it got much better when I listened to friends and Dr's and stopped eating white sugar which causes ongoing inflammation in an already challenged body. Try stevia, bake with a bit of real organic maple syrup or sugar free applesauce, bananas or dates. There are healthier alternatives out there, give it a shot my friend, it's worth the effort! Feel understood and gently hugged 💜👋🏼😃I'm sending you a bunch of Love from my heart to yours, please keep us updated if the sugarfree experiment worked for you or not, up until then, I asked you to not give up and know you are not alone. You've got this and we've got your back! 💜

January 12
MyLupusTeam

What could be causing a crawling sensation and pain on top of your head?

That crawling feeling combined with head pain can be really distressing. Several lupus-related issues might explain what you're experiencing.

Possible causes include:

- Nerve damage from lupus - Inflammation can irritate nerves on or near your head Show Full Answer

What could be causing a crawling sensation and pain on top of your head?

That crawling feeling combined with head pain can be really distressing. Several lupus-related issues might explain what you're experiencing.

Possible causes include:

- Nerve damage from lupus - Inflammation can irritate nerves on or near your head, causing tingling, crawling sensations, or even shooting pain on one side of your scalp (occipital neuralgia)
- Medication side effects - Some lupus medications like leflunomide or cyclosporine can affect your nervous system and cause crawling sensations
- Lupus flare - UV light exposure can trigger flares that bring on tingling, numbness, and pain
- Hair loss - About 7 in 10 people with lupus experience hair loss, which can create a crawling feeling as hair falls

A MyLupusTeam member shared: "I sleep fine, then wake up with a flushed face and ringing ears and feel the most terrible buzzing feeling all over, like crawling critters."

What to do:

Talk with your healthcare provider about these symptoms. Share details about when they happen, how long they last, and any patterns you notice. They may recommend nerve conduction studies or other tests to identify the cause. If it's medication-related, switching treatments might help.

If you notice these symptoms worsening with sun exposure or alongside other flare symptoms, protecting yourself from UV light and revisiting your treatment plan could make a difference.

January 12

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