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Creepy crawlies in my neck and other stuff

Hi peeps, update on things thus far....after complaint for over 7 months I have finally had my carpal tunnel released and also a tenosynovectomy.. awaiting histology results..due tomorrow...the surgeon said it is the worst case of tenosynovitis he has 'ever' seen, which worried me a little.. but shall see what happens tomorrow...

I was wondering if anybody else on here has the feeling that there are crawly things under their skin. I have had this problem for many years which has been largely ignored by whoever I've told. A number of years ago I had the nerve centre test done, it came back with 'adverse neural tension'. I was sent for several

bouts of physio which really didn't do much. Should I just put up and shut up or

do I keep mentioning it?

Keep smiling everyone...:-)

8 Replies

Hello Cath

I also had a bad case of tenosynovitus DeQuervains to be precise, Surgeon said it was 'Well in need of doing" That was 25 years ago and since then I have had the full gamut of hand/wrist/elbow problems - golfer/tennis elbow carpel ganglions and all the nimbness, buring pins & needles etc.

And I have had phantom sensations up and down the arms and occasionally on the scalp and neck..

I put it down to nerves being pinched or something. But feeling that something is trapped under y foot in my wellie will always get a second check!


Hi Cath,

I have also had those feelings as if something is crawling around me just under the skin. In fact about 20 minuets ago I just had it going up the spine and was as if I had a ripple or Mexican wave. I have mentioned it a couple of times to my Rheumy but I guess that it is of lesser importance as I do not get a diagnosis or response as to what it could be.

If anyone else could let us know what it is or could be that would be great.


I get this as a sense of an insect crawling through my hair. Some have suggested it's a form of peripheral neuropathy. GP called it peripheral neuralgia - though there's no pain. He also said it would eventually just go away. Which it did (I hope!). It seemed to move to my eye for a while where it became a twitch, but that's gone now too. For now!


Are you on amytriptaline (not sure how its spelt, sorry!)? I had this sensation in my hair on one side of my head and the GP said it was an adverse reaction to this, even though I'd been on it for about 5 months with no problems. I stopped taking it and the sensation went away!


Hi!i get creepy crawly feelings all over my body and have had for years ,i sometimes go to flick what i think is a bug off my skin ,lol!for me i dont stress about it ,i assume its something to do with irritated nerve ending?gotta be to do with lupus?i also get many other nuero symptoms ,but for me i kinda just except it is what it is as im fed up with consultants,i reckon,,,,,,,,our systems are super hypersensetive so we are on red alert in all areas of our bodies,hope this helps ,brave


Thanks everyone for your responses... :-* hope you're all feeling well....just back from the surgeon. Histology shows severe tenosynovitis due to rheumatoid arthritis... just need some proper medication now...Hopefully will get something that actually works...instead of just being given things as a matter of course for 12 months.. just to see if it works.

As for the creepy crawlies....I've had the sensation for years..and have kind of accepted it...because nobody else seems to be concerned about it....however I

think I shall mention it again..and see what happens.

Thanks again for your responses.

Keep Smiling :-)


The 'Creepy Crawly' sensation is due to the effect it's having on your Central Nervous System. It COULD be due 2 the lupus, but could also be due 2 some of the meds. If it progresses 2 OTHER neurological manifestations (hallucinations, depression, anxiety, headaches etc) then u need 2 push 4 answers. My lupus & APS has sent me into psychosis (many consultants will deny that lupus, APS etc can cause this but look online & it's actually not that uncommon) & this was 1 of the first symptoms I experienced as opposed 2 'The Normal' pins & needles. Good luck :0)


Hi here Cathbw .....I've been off the blog site for over a week because of an acute case of the "creepy crawlies" in scalp and neck. This is probably more due to an old neck injury that hasn't ever really healed up properly, but it is only recently that it has been actually painful, rather than irritating. The pain level has been up to about 8/10 some mornings...easing off to about 6/10 after taking my usual Lupy meds, Tramadol, and an anti-inflammatory drug.

Locum GP gave me a really thorough examination and came to the same conclusion as Coppernob's Doc : i.e. peripheral neuropathy. He also ordered an "armful" of bloodtests and prescribed an anti-epileptic drug, LYRICA (Pregabalin) which I've been taking now for almost 2 weeks. Because anti-depressants and anti-histamines do not mix well with this drug, I stopped taking them a couple of days before starting the Lyrica. Pleased to say that the pain and "prickles" have subsided to a bearable level, but am not especially happy about taking a drug which has known (and rather unpleasant) side effects for a continued period of time.

It is often difficult to know whether it is our auto-immune condition causing symptoms, or drug reaction. I try to space mine out over the day (and night - my body clock is erratic) so am not taking them all at once. Even so, I have to take plain biscuits, lansoprazole and Pectin before taking anything, because my stomach lining is so sensitive!!!

It will be interesting to know if other friends on here are experiencing similar sensations......


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