Prickly skin: Can anyone tell me if they suffer... - LUPUS UK

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Prickly skin

Can anyone tell me if they suffer from a prickling sensation in the skin when suffering flare. This feels like little shocks or as if bugs are on my skin?

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Yes I’ve had this in the past,I put it down to the menopause.which is now past.

I had a diagnosis of lupus this year in the last 3 months I’m getting the crawling/ biting sensations again.

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Hi Deborah. Yes. I do indeed get this. Like tingling sensation all over the body. Mostly when Im super duper tired, dehydrated and almost exclusively at night usually around that time of the month.

It’s never really preceded any flares but definitely seems to be hormonally driven for me.

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Mine is more often like a needle point like a shot. It will be in a large muscle. It hurts. It stops. Sometimes it comes back to the same spot and sometimes it will move to another large muscle group. However I do have the sensation of bugs crawling on me. I don’t need to be in a flare. I take antihistamine all year long to help this sensation and lather on the vitamin E lotion. If I’m in a flare that becomes hives and angioedema.

I’m sorry you’re going through this.

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I’m a bit like you.i have it everyday now. I take antihistamine daily,moisturise skin.doesnt make muchdifference

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Hi I am still trying to figure this out...my sympathy... My legs mostly that start feeling this.

As I have sjogrens & SCLE etc etc I am trying to figure out if it is dry skin or weight of my bedding irritating my skin or something more sinister - abit dramatic word, but we get overlapping issues it all becomes muddled to me....restless leg syndrome?

Will read in interest to your post....ml 😆

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I can be sitting in my back yard. I’ll think it’s a bee sting. Until I came on this site no one understood me.

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Yes, I defo get this one - feels exactly like a bee sting. I've even been known to look for the bee!! Do you know what causes it?

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Hi Maggielee

I have quite a time with Restless Leg Syndrome. It seems to be genetic but is an AI. My p. grandma had it plus MS. My father had it... I started the need to literally run under the sheets as a child which progressively became not just the legs moving at night but when tired or evenings a leg spasm ( always left leg to start) that jerks like electricity. It feels akin to an itch one cannot scratch and once I release the clenching muscle to control it.... it is full out spasmodic movement. Severe times can involve hand to elbow movement. I do take a medication to control it.

Then again, cheap entertainment for the family and dogs:) 😉

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Alot worse than I am experiencing....feel for you...just want to rest & we are given another challenge to reach slumber at last 😴 thanks for the clarification of restless leg big hug to u....ml

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Yep, I get this one too - big time! Is it know to be part of an AI condition?

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Hello

Restless Leg is an AI all by itself. The auto immune diseases/conditions like to make friends, from what I have been able to put together. Fibromyalgia ( tech not an AI but I disagree) is ‘said’ to often lead to Lupus. I have hypothyroidism which is an AI & add RLS ... a team open to Lupus.

Reminds me of a game of tag 😬

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I didn't know it was definitely classed as AI - very interesting. Do you have a link for this? Thanks a lot.

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Hello MEGS53...

Happy to share with you.

aarda.com/diseaselist/

American Autoimmune Related Disease Organization has a list of over 100 autoimmune disorders listed.

If one were to break down the list from primary to secondary, RLS would not likely be a primary. My readings from the Mayo Clinic suggest it is a neurological disorder. Somewhere it mentioned it’s high relation to Celiac Disease and Lupus. Whether it is causing said diseases or a symptom of ... not a clue. Akin to the chicken vs. the egg. 😊

My best to you:)

A

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Thanks again. xxx

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Aaaah, this seems to be a list for recycling??

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HiddenThis reply has been deleted

I think the link is not coming through. For some reason, a recycling company’s web site comes up. Could you please re-send? Thanks. K

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Thank you, K!

Words can be misconstrued... I appreciate your help more than I can write in words today. 🥰

Guess one could add sensitivity to the list...

Best to google :

American Autoimmune Related Disease Organization

The list is there.

Apologize the link did not ‘stick’ ... working from my phone.

a

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Crazy stuff happens to me all the time with this technology. The other day I used a happy emoji inadvertently for a sad comment. 😧

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Hi. I'm very sorry if my reply was misconstrued. I really didn't mean to upset you. Thanks for your help.

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It was me... did not understand:) if we could see facial expressions😊

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Hi. So happy we can kiss and make up! Sending lots of virtual kisses, xxxxxxxxxxxxx

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I have Sjogrens and my dry eyes and dry skin seem to be the worst annoyance. I look after my eyes continually and if I don't moisturize my legs and arms as well as my face very well each day I have prickly itchy skin.

Hope this helps with some supportive explanation of what may be happening to you. 😊

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Thanks will be nicer to moisturising my skin....see if this help. ML 😊

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It can be a side effect of hydroxychloroquine if you're on it.

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Ohh will check that, yes on it, a must..ta ml

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Me too on that...

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I have this all the time, even when not in a flare with many other symptoms.

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Yes! I’m glad you brought this up, it’s just been one more symptom I’ve taken for granted but have taken as a warning sign to slow down, take a nap, get indoors, whatever...

Thanks for this, you brought awareness to a small but important symptom.

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Good to know will note how my day goes good tip to all of us.....

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Hi. I get both: the' bee sting' thing and severe tingling across my back. The first one hurts, but it's brief, the second is long- lasting and more annoying than painful. It's got so bad that my rheumy's got me an appt for an MRI in a few days in case it's a pinched nerve. I sympathise. xxx

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Hi Deb -first off i do not have Lupus yet 0- I am an APS triple positive primary patient - When i have flare not in head every hair on my skin feels like tiny needles and my skin seems to tighten and that prickly feeling always present .So yes i have that feeling with almost all flares whether they are full body flares or just leg-chest-back or leg .

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Thanks, everyone for your comments. Very helpful. I do take hydroxychl. and I am also recognising it as a sign to be careful and take preventative measures if necessary.

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Hi Deb

Do you feel it as a full undercurrent of tingling? When I am flaring ( when am I not?) or over tired it a buzzzzz that I literally can almost hear inside my head that goes head to toe. I have hypothyroidism, severe Fibromyalgia (10 years) and multiple symptoms of Lupus with a neg ANA but a highly elevated SED and CRP. At 6 months, or full efficacy, of Hydroxycl. Blood work for recheck next week at Rheumatology.

Wishing you my favorite sounds lately ... absolute silence.... from a classically trained professional musician.

🥰

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I also get that bee sting feeling in my face! I didn’t know anyone else had this. I also get a buzzing numb feeling in my face around my mouth. I think these symptoms were partially what sent me down the neurology track before I finally got a referral to rheumatology.

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I get crawling in my face around my nose under eyes an mouth xx

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Yep ain’t it great. Incredibly painful

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Absolutely. Especially at nigh, every night but some nights much worse than others. Just have to kick off the covers and then wake up and pull them back on again when cold. Nights are so much fun eh peeps ;)! Tsk. Haven’t got any advice really - drink lots of water all the time and limit any bad food (sugar etc) from a healthy as possible diet. I’m giving up dairy currently in the hope it helps but I think this symptom is part of the deal. Hope it improves for you asap. D

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Oh and my rheumy said it was part of the neuropathy etc. Seems to fit.

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