Sensation: Hi all, I have a very strange sensation... - LUPUS UK

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Sensation

Tinkerjack1912 profile image
19 Replies

Hi all, I have a very strange sensation. A cold feeling down the right side of my head, almost like running water.

I’ve tried looking it up but can not find anything relevant and I’m a little worried. Has anyone else get this?

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Tinkerjack1912 profile image
Tinkerjack1912
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19 Replies
seren1970 profile image
seren1970

Hi I’ve had this once about 3 years ago I actually thought water had leak through my the car roof it was after someone went into the back of my car when I told doctor she said it was ok just whiplash but it worried me I would definitely get it checked xx

Tinkerjack1912 profile image
Tinkerjack1912 in reply toseren1970

Morning thanks for replying, I was only sitting on the sofa catching up with some tv and it just came over like a wave. It was very surreal and quite worrying. Xx

grannypat68 profile image
grannypat68

Wow! Yes, I too experience something similar - like a chill coming over my head 😨- have looked it up but never found anything and always forget to mention it at the very brief appointments with gp.

I am awaiting referral to rheumatology at the QE in Birmingham so will put it on my list before I forget again.

We are strange creatures aren’t we - some things we experience are surreal 👽XX

Tinkerjack1912 profile image
Tinkerjack1912 in reply togrannypat68

Yes very strange. You hope your appointment goes well. X

happytulip profile image
happytulip

Just because we have Lupus doesnt mean that every symptom we have is caused by lupus.

I've heard of this from patients before and it needs checking out by your GP, so I'd get a appointment and discuss it with them x

Tinkerjack1912 profile image
Tinkerjack1912 in reply tohappytulip

I will do thank-you. X

SjogiBear profile image
SjogiBear

I have experienced similar sensations as part of my occipital neuralgia which I get over the right side of my head and scalp and into the front of my face. The feelings over the scalp are like ants or spiders crawling over it - does sound similar?

Tinkerjack1912 profile image
Tinkerjack1912 in reply toSjogiBear

It feels like a waterfall from the he top to the bottom. Very very strange. Xx

Cann profile image
Cann

I have had this on various other places in my body and I have had to check my clothing to see if it is wet - very odd!

Tinkerjack1912 profile image
Tinkerjack1912 in reply toCann

Yes, I had to feel my hair.

Cann profile image
Cann

Good mediums get all these sort of symptoms - do any of you feel you are psychic.

I don't consider myself psychic, but when I was wondering what our new royal baby born on the 23rd would be called - the names Arthur Louis came to me.

I was then amazed when it was announced that his names are Louis Arthur Charles.

Tinkerjack1912 profile image
Tinkerjack1912 in reply toCann

I do believe yes, I wouldn’t say I’m psychic though.

in reply toTinkerjack1912

I have a very diffuse small fibre sensory neuropathy as part of primary Sjögren’s - which causes all sorts of bizzare sensations around my body. For two years my thighs felt wet and I was forever touching my leggings to see if they were damp. Before that I had a few years of sudden warmth on a patch of my arm - to the point where it felt like a hot hair dryer focused on various parts of my arms and shoulders. Then burning soles, then RA, then pins and needles all over the place with ants crawling about. I had a vibrating toe for a few years. Last night I had a feeling like a spider crawling across the top of my hand near my knuckles every time I lay my hand palm down.

I think it’s the inflammatory process causing tiny nerve fibres to become compressed. Presently my thing is a vibration running from my right sole up my entire leg. It’s so strange that I looked it up and found it’s called Pallasthesia!

There are many causes of strange sensory issues all around the body - causes include autoimmune diseases such as Sjogrens, Lupus and MS.

Definitely see your GP and if it continues then I’m sure a neurologist would be able to find the cause.

Tinkerjack1912 profile image
Tinkerjack1912 in reply to

Hi, thank-you for replying. I didn’t think until now, I get a vibration feeling quite often and thought I was imagining it, I never considered it could be anything. Xx

in reply toTinkerjack1912

I was same for ages - thought I was going nuts. Then the pain started with it and I knew I couldn’t make that up! 😖🤷‍♀️

loopy-lou profile image
loopy-lou

I was getting a wet feeling on my arm the other night. I kept feeling it trying to search for water at the same time thinking how odd. I even tried drying it with a tissue. There was nothing there!

i sometimes feel my whole body is vbrating usually when i done too much and completely over tired . its no nice

RhondaB profile image
RhondaB

Hello. Hate to say it but I had that feeling also 16 yrs ago. Felt like some one had opened the right side of my head and started to pour extremely cold water down it. I could also hear a swissing like sound. I had a cerebral aneurysm that nearly took my life. Dr. Said it was a musical I was alive. They had instructed my family to make funeral arrangements, but GOD had other plans. Funny thing is 4 months prior I heard a pop sound and a snap. But no pain or anything so I just put it in my oh well thoughts. This was 6 yrs before I found out I had Lupus. Please ask you Dr for a cat or MRI scan. I'm assuming that first incident was the blood sack forming and then 4 months later bursting. Please get it checked out.

Tinkerjack1912 profile image
Tinkerjack1912 in reply toRhondaB

Thank-you. I am glad you are ok now. X

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