LUPUS UK
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Creepy scalp

Does anyone get what I could call a 'creepy scalp'? It's like there's an insect crawling through my hair in just one small area of my head. Or like that childhood game where you pretend to crack an egg over someone else's head.

Could this be some sort of nerve over-activation?

Anyone else had this? And know what, if anything, can be done about it?

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Hello Nob, or can I call you copper?

I get that up my left arm, it is a bit wierd especially when I am driving. Doctors says it is the nerve being pinched or something. Worse than this was the arm going numb, so when I sliced my hand, I didnt notice until I saw the blood dripping on the floor. I am currently having a variation of this where it feels like an insect is in my right shoe. I even took my socks off and flicked them out to make sure. -Fair enough, but I was out shopping at the time.

Try to stay loose, and dont worry about it too much.

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I to get a creepy scalp, seems very itchy, have even got husband to check for head lice before now, Haven't mentioned it to Dr's or rheumy, but as I'm not the only one then maybe I should.

I tend to accecpt that these little things are all part of it so just accept it, but maybe we all should list these little things !,

Without this site I think we would all just accept things, but then we ask on here and find we are not alone.

It's good to be able to share

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I am the same as you and even went to the chemist to get special shampoo for head lice. The pharmasist (thank goodness) who I have known for years as she does my 'shipping order' every month. She said there was nothing there but you can get this when your Platelett count is low and to check with doctor. They said "oh that's nothing to worry about" and was dismissed like a naughty school girl (of 65!). I still get it and to stop me scratching just use a fine comb to run through my hair. Does help a bit, but frightens the hell out of me when it is in the middle of the night and it wakes me up. I am convinced there are 'bugs' in the bed. Oh my poor hubby, how has he put up with me for 44 years?

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Oh Hazel. I am in the exact same boat as you. My heart goes out to you. I am still going through the "trying different ideas" stage with the doctors so I will be sure to let you and Coppernob know if anything comes of it.

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Hi

My mother in law who is elderly complains regularly of the same thing she doesn't suffer with lupus but has been told this happens when she is having an attack of shingles! your description of the insect crawling on your head is exactly as she describes it.

Jan

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You've touched on a tickly topic!

I drive my "other half" mad with hair scratching....and have to wash my hair 2-3 times a week (with baby shampoo - anything else gives me a red rash). I'm constantly having to have my hair trimmed because it is so uncomfortable.....

It is only since I've been on the Plaquinel, Ibuprofen, Thyroxine, and Tramadol to control the Fibromyalgia symptoms that this has been a problem....so I'm wondering if it might be a side effect of one or a combination of these drugs. I do also think there is a link between the itching, and the " sweaty-burn-ups" (which are spontaneous, and also very uncomfortable until it is possible to cool down....we have a fan in every room).

I would be interested to know if this is one of the indicating factors for Lupus because my Consultant is now saying that I haven't got it.......even though many of the symptoms you folks describe also apply to me.

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Looby, no one's told me yet I've got Lupus, but I'm beginning to seriously suspect it, same as you. And also like you, the similarity with people who have a 'definite' diagnosis (is there ever such a beast??) is highly suggestive that we have Lupus too.

I think Plaquenil can cause hair loss, so maybe that's something to do with the itching. I also take thyroxine and, interestingly, this insect crawling has only started since I upped my daily dose of that from 50mcg to 75mcg/day.

And I get the 'hot flushes' too - even thought the menopausal hot flushes were over ages ago, and were different anyway (though try explaining that difference to a medic!).

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Hi copper, I describe it as hot flashes!!!! and I found when I had menopause it sort of creep's up!!! but these just hit!!! I also get itchy head just in the nape of my head and it drives me mad and like "lupydragon" maybe I should mention it when I next see my Lupus Dr!!! as yes I do have Lupus :-( but on here were never alone. I hope you get sorted soon xx

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I am concerned about getting regular hot flushes over my face which start suddenly, even when just sitting still and they wake me at night. At the same time I am aware of my heart pumping. These only last for a few minutes but is unpleasant. I don't feel able to add this to the many odd symptoms when I see my GP as I feel he is very dismissive when I describe all the odd things that I experience.

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No, do mention them! You need to. Keep a list of all the odd symptoms and take it with you to show him. Perhaps even a copy for him to keep. They add up to an overall picture. Does he know you have lupus? Does he know anything about it???? Do you have a rheumy?

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hello everyone!

i have lupus too and i too get "spiders walking" on my head and my left arm. ive just started getting "tropical moments" this year,and they are awful. my gp nurse suggested red clover or black kohosh which are both herbal from holland and barratt.but i cannot take them yet without asking my lupus doctor first in december (just to be safe with other meds . i was tested for early menopause (ive just reached the magic 40) but results were normal.

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I am 58 years old, and was almost diagnosed 18 months ago with SLE. Almost, because the first Rheumy I saw had me at my finest - rash all over face, neck and chest, weak and sore thigh muscles, shoulders locked up, spending way to much time on couch and ANA 1:320. She started me on Prednisone and Plaquenil right away and said, looks like SLE - we will act like it is until we know different. Well unfortunately I had to leave her as we moved for work. In the last year I have seen 3 different doctors that will not commit to anything, the latest one suggesting that I cut Plaquenil dose and see what happens even while still positive ANA, but negative on extra labs. I told him about getting a creeping sensation on my scalp that starts on nape and works up over head. He looked at me like I had lost it - and said perhaps it was just anxiety.

I live in Canada, and I am sorry to see that this disease, that we don't really have, seems to be treated with the same attitude all over the world. If you are not in a hospital bed with all tests howling illness, then you aren't really sick and they lose interest fast. I see myself, to often, in these sites to think it is my imagination or just anxiety. I, like a lot of people, did not really know much about Lupus until after I got sick. The doctors are the ones that introduce it to you and then act like it is you just looking for attention. Sad!

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I have. And no, it's not just me. The cat, I am taking care of, is reacting too.

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It's a mix; nerves being g irritated by allergens, usually grains and sugar.

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Hi I am new to the site, I was just doing some research on the itchy scalp.. I am experiencing this heavily with my 14 year old to the point where she has lost hair, difficult in school concentrating, it's worse at night because she is constantly itching I try to control this buy her sleeping in my bed and holding her hands but what I experienced was so scary.. the frustration the anger oh my God the reaction to not being able to itch the scalp..i am quite concern an looking for any help out there for my daughter.. reading this I think I'm going to have her tested for Lupus because I am a rheumatoid arthritis patient and lupus is a cousin of RA.. and since she is directly linked to me this is a start..

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Have you found the cause and the treatment that works?

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HI i dont know whats it called but my hair gets really itchy and i feal like i have bugs crawling threw my hair when someone else in my houshold has lice its really wierd and i felt like lic

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I feel that too. I also experienced hairloss. And I think that itchy moment is when I have hairloss. Do you have hairloss too?

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I am currently having a terrible time with "creepy scalp" or what feels to me like worms wriggling about.. i at first thought it was something my cat had brought in like a random flea (they're always up to date with flea treatment)

Next it felt like worms. My forehead swells up in a few places and they seem to be in thete and I can disturb them and feel them/see them moving. As soon as it stops I tell myself that I'm going crazy and there's no such thing. I put it down to my sarcoidosis flare up but when I feel it it feels so real. I even have some patterns on my forehead that look like burrow holes and they go really deep. When I pressed hard I heard a gentle crunching sound, like I was squashing tiny eggs.

I have even been given a brain scan but I was told it showed nothing. Something is happening to my poor forehead 100% definitely and something either is, or feels like it's crawling around my scalp and forehead.

Please does anyone have or had anything similar?

Coppernob, I have read elsewhere something about this and I have been told by a psychiatrist that there is a condition to do with worms and scalps but he doesn't think it's what I have because I don’t hear them talk.

No....I dont.

I have read that some females can get something similar when they have recently gone through the Change and it's caused by a withdrawal from their hormones.

I am sitting here with head mites solution on in desperation but I can still feel them!! I'm so stressed out with it.

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Have you found out what the cause was and a treatment?

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