Skin crawling/formication

This is a gradually increasing problem for me at the moment... it feels like tiny insects crawling on my skin - not everywhere all the time, but seemingly random.

So far, I haven’t scratched too much because it’s not really itchy - it just feels as though there’s something I need to brush off. It’s worse in my hair because it’s harder to get rid of the feeling that there might actually be some little insect there!

Does anyone else get this?
I don’t know if it’s down to the heat/weather, hormones or a new symptom of ME....?

 

@Daisybell . . . this could be hormonal. I had major itching on the top of my legs at the start of menopause. The more I scratched the worse it got.

 

It's very common in menopause ... if that's relevant?

 

Yeah. I get this too. It's horrible/annoying and easily mispronounced!

It get's worse when I relapse, my iron levels drop or when I need to incease my thyroid med dose.

 

It's very common for women going through perimenopause to get this.

 

My daughter has this.
I suspect it may relate to liver function in her case ( it is a symptom in Gilberts Syndrome and she does have particular issues with some e numbers - salicylate based which also are in Gilberts ; don' t have high bilirubin though)

I have heard it is may also be due to non tight junctions on epithelial cells .....

 

@Daisybell I'm getting the same thing. I think it is this tropical weather we are getting? Constantly sweating with the heat. On and on it goes, I can't remember a summer like it. Not complaining, I would rather like this than bitter cold winter.

 

Thanks everyone - for sharing the creepy crawley love!!!
Seriously, it’s good to know you get it too..

 

I had this (both formication and relentless itchiness) earlier on in my illness progression, it does suck!
I don't remember what I did for it then, if anything; but I do take benfotiamine when I get other weird skin burning/hypersensities now and it works well.

 

I'm 38 years old and I feel like I have lice on head and body, I went to my doctor's and didn't find anything on me. I don't see anything on me too but I keep thinking I have lice. I try everything to kill what I don't see, what is wrong with me? What is the earliest you can get menopause ? Or do I have something else?

 

The sensation of insects crawling on your skin, when there are actually no insects, is called “formication”.

It is a neurological symptom, but very little is known about it.

 

I've had this problem in the past but it does seem to have slowly dwindled over the years. In my case the commonest sensation I got was it felt like I had a drop of water trickling down my nose. Sometimes I would feel like I had a hair on my nose or on my eyelids or around my eyes. I still get the feeling of having a loose hair sitting on my skin almost always on my face, but the water trickling down my nose sensation has not happened for a long time now.

Since the sensation occurred repeatedly roughly in the same area I have wondered if I have suffered some minor nerve damage, but if I have I cannot think of any situation in which it could have occurred.

 

Other abnormal cutaneous sensations experienced included a
feeling as of trickles of cold water running over various parts
of the skin, and a feeling of insects crawling under the skin.
The latter type of sensation was experienced in a few cases only
and was limited to the arms and legs.
Four cases complained of feeling as if a worm was
crawling in their legs, under the skin. In one case where I was
present at the time of the complaint, a slow wave of contraction
was seen to travel along a bunch of muscle fibres in the
gastrocnemius muscle at the site of the complaint.

Wallis, A. L. (1957). An investigation into an unusual disease seen in epidemic and sporadic form in a general practice in Cumberland in 1955 and subsequent years, M.D. Thesis. University of Edinburgh.

I have always thought that this passage was of interest in relation to this subject. Unfortunately I have lost the web address.
EDIT https://www.era.lib.ed.ac.uk/bitstream/handle/1842/9382/Wallis1957_FULL.pdf

 

Thanks @chrisb this is quite an interesting read.

the symptoms in that UK village didnt seem to be very extraordinary, but so many ppl reported them and fell sick. the ONSET symptoms were:

• diarrhea, some nausea, vomiting in first 12 - 24 hours
• throat irritable
• slight degree of laryngitis
• inflammatory reaction in trachea
• some had cough, worst bedtime/getting up
• dry nose, prickling feeling in post-nasal region
• some had sneezing spasms, followed by rhinorrhoea

with disease progressing, some said their "legs were gone" (weak, it seems).

they suspected droplet infection. a large number of common culprits was ruled out (psittacosis, bacterial/viral infections). nothing was ever found, when i understand this right.

... and all those budgies died...

i read, that a considerable number of ill households had budgies, and that a lot of them died.
they suspected, the disease was transfered to them.

and also, budgies would infect each other (cage was not sterilized, the next healthy budgie in it died from the same disease as the previous bird).

im wondering, if they could "exhume" some of those dead birds and try to find something with more advanced technology.
there were breaders with many fatalities, who knows if they buried them somewhere in the garden so.

 

Has anyone found anything useful re the formication?

This is currently a huge issue for my daughter - it is worse when sleep is poor and the catch 22 is she can't sleep if this is manifest, even if she does actually feel sleepy ( as opposed to exhausted).

Looking back though diet and supplements etc, there is nothing that has changed, except nasal spray/ decongestants for
sinusitis -this sensation became prevalent again, but has continued to be an issue after the medication finished, and if anything has got worse since discontinuing.
She has also had many adrenaline spikes recently, the most recent after getting ears " washed" out, so wired but tired and little sleep, which as you know, just exacerbates pain etc.

If anyone has any coping strategies/ found anything that has seemed to make a difference they would be much appreciated

 

My worse time of formication occured before I was disagnosed with low folate (NHS blood test). It was one of the symptoms that eventually led to the test by a neurologist.

The formication cleared up within a few weeks of supplementing and I have no idea if this was a coincidence or not.

 

For decades now, I sometimes get the sensation of insects crawling on my skin, but more often I get the sensation of them biting me - as in ouch, that hurt, but there is nothing there. This happens fairly frequently. I also get the sensation of something light on my skin - like walking through a spider's web, or a hair on my face - but there is nothing there either. Another one I had for quite a few months, but haven't for quite a while is the feeling my toes are in water. For decades, I have had hot spots - a sensation of extra heat on my skin in often the same areas, or close by.

I wonder if pwMS get these sensations. Maybe these sensations are caused by neurological damage, or neuroinflammation.

And yes, funny term. Who thought that one up?!

ETA: I also get frequent itching on one arm - there is no rash there.

 

This is about altered sensations; info from the MS Trust - UK organization:

This website indicates altered sensations in MS are from "damage caused by MS to the nerves in the brain and spinal cord."
https://www.mstrust.org.uk/a-z/altered-sensations

"What causes altered sensations?


Although it feels like something is going on in the skin, the sensations are really due to damage caused by MS to the nerves in the brain and spinal cord. This damage interferes with the normal transmission of messages to the brain. The brain can’t interpret the signals it is receiving as it is outside its experience. To deal with this, it tries to relate it to something the body has experienced before such as itching or burning. Alternatively, the brain may relate it to some other sensation that it can imagine like having insects crawling all over you.

Although the sensation feels like it is in a particular part of your body, such as your fingertips, there is no damage to the tissues in your hand. The only damage is in the nerves which report to your brain about your hand and this is what makes it seem like there is something wrong with your fingertips."


Interesting we share these sensations with pwMS.

ETA: @Daisybell - thanks for starting this thread.