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September 28, 2025
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A MyLupusTeam Member

Yes, like every time I forget to cut a tag out of my clothes or when someone touches me to soft or to hard. It can be worse of bad pain days or exhausted days. Sometimes I try on 5 or more outfits because that day I can’t stand how the fabric touches my skin even though it might have been fine yesterday but today it is not. Sometimes blankets are to heavy or not heavy enough. Every day is different just like the rest of Lupus. Call it sensory issues or a flare or whatnot but the struggle is real. I have learned to laugh at myself and stay positive in the face of it all but it can still feel a bit much some days.

September 28, 2025
MyLupusTeam

Many people with lupus experience uncomfortable skin sensations, including feelings of numbness, tingling, and crawling on their skin. This is called paresthesia and happens because lupus can cause inflammation of the tissue around nerves.

These sensations can occur without warning and affect various parts of your body like Show Full Answer

Many people with lupus experience uncomfortable skin sensations, including feelings of numbness, tingling, and crawling on their skin. This is called paresthesia and happens because lupus can cause inflammation of the tissue around nerves.

These sensations can occur without warning and affect various parts of your body like arms, legs, feet, and other areas. While painless, they can be very uncomfortable and distressing. The good news is these nervous system symptoms are often treatable. Here are some important steps to take:

• Talk to your healthcare provider about your specific symptoms
• Keep track of when these sensations occur and any patterns you notice
• Discuss if your current medications might be contributing to these feelings
• Consider if UV light exposure might be triggering these sensations, as photosensitivity affects many lupus patients

Your doctor can help develop an effective treatment plan to manage these uncomfortable symptoms and improve your quality of life.

September 28, 2025
A MyLupusTeam Member

In the weeks leading up to my lupus diagnosis (before I understood ANY of what was going on) I would take my clothes off at night to get ready for bed and would experience profound relief that nothing was touching my skin. I had never experienced how painful it was to have something touching me all the time! After my diagnosis I got in the habit of changing out of work clothes and into more comfortable clothing ASAP, and still do that!

September 29, 2025
A MyLupusTeam Member

Yes! Sometime I don't want to be touched.

September 28, 2025
A MyLupusTeam Member

OMG Yes! I can't stand for anything to brush up against me anyone to touch me... I feel like I have the butterfly rash wrapped up in 3rd degree burns, pins & needles poking from underneath my skin, all while feeling bruised and sore like I'd been beaten black n blue to begin with!! 🫨😩🥵🥶🤕😭

So yeah I feel your pain(s)!
Sorry...
God bless

October 15, 2025

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