Paresthesia is the medical term for altered or abnormal sensations in the skin of which I have several, some of which are really hard to describe but I’ll try and give it a bash.

My worst sensation is that of…………I was going to say pins and needles but it’s more an intense tingling sensation.  It started after my meningitis and developing severe M.E. and has been a constant, 24 hours a day thing for the past twenty odd years.  It’s in my hands and soles of my feet all the time, and sometimes in my scalp, buttocks, face, even my tongue.  When I’m trying to tell people what it’s like I usually describe it as feeling as if I’m plugged into the electric (I do wish someone would kill the bloody switch).  These days it’s more annoying than painful, but when I was severely affected with M.E. the sensation was so intense in my feet walking was tortuous as it felt like my skin was made of broken glass.   Pain aside, it’s not particularly restful to lie in bed every day with your whole body vibrating from an invisible current.  The only time it stops is when I’m just about to have an anaphylactic reaction when, for a few precious seconds, my entire body is blissfully calm until of course all hell breaks loose.  So it seems like an immune-related symptom because my immune system can switch it off.  Weird.  If it were peripheral neuropathy, nerve inflammation or there had been some permanent damage to my nervous system the sensation wouldn’t suddenly disappear when I’m having a mast cell reaction, so my hope is that it’s a symptom which could be treatable should a cure/effective treatment ever be found for M.E.

The electrical theme continues with nerve pain, which feels like lightning bolts under my skin.  It’s sharp, stinging and at times so severe it takes my breath away.  I can be sitting reading a book, or having a conversation, and all of a sudden I’ll jump and shout out “ouch yer bugger!” which usually means I’ve been zapped by my body’s own Taser.  The only saving grace is that it’s a stealth assailant and has come and gone in seconds.

A more chronic cause of pain is burning skin.  It feels like I’m sunburnt and my skin can feel hot to the touch.  My legs are the most affected, particularly my thighs, and it’s worse when I’ve been walking, or done some kind of physical activity though as I’m sat up in bed typing this at 7 o’clock in the morning the insides of my knees are both on fire even though I’ve been in bed for the past 14 hours.  It gets progressively worse as the day wears on, particularly in my feet, and I lie in bed most nights with my tootsies like a raging inferno dangling outside the duvet.  They drive me insane.

Sometimes, I’m lying in bed watching telly and minding my own business when huge goosebumps suddenly break out on the back of my legs.  It’s bizarre to get goosebumps when you’re warm and I have no idea what causes them.  Again these developed when my M.E. became severe and as I’ve improved they’re thankfully nowhere near as frequent as they used to be.  Still not pleasant though to feel your skin inexplicably crawling.

I’m going to include my muscle twitching and jerking as altered sensations, even though they’re not skin related.  I have Restless Less Syndrome and it’s something I’ve had since I was a very small child.  Both my parents have RLS and my biological Dad also had Periodic Limb Movement Disorder, so for me there’s a genetic cause.  As a kid I always knew when I was tired and ready for bed as my legs “jumped”.   However, the second I settled down to sleep they mercifully stopped and until my mid forties my RLS only ever happened in the late evening.  Not any more though.  Oh no.  These days my legs can start jumping in the middle of the afternoon and by the time evening arrives they are cramping, crawling, twitching and relentlessly on the move which is impossible to explain unless you’ve experienced it.  Even my dog gets fed up of being woken by my constant fidgeting and often gets off the bed and goes into his own basket with an irritated sigh just so’s he can get some kip!  To add insult to injury, now my arms are at it too and they ache, crawl and twitch me to distraction.  It’s freakin’ exhausting.  And before anyone asks, yes I have tried Indian Tonic water (eugh!) and it had absolutely no effect other than to keep me awake at night peeing.

While RLS is an internal sensation of movement which you feel but can’t see, I also get visible jerks and twitches.  When my M.E. was severe my legs used to literally jump inches off the bed with violent jerks, which were really very painful.  I also used to twitch  involuntarily just about anywhere on my body, a bit like the ticks seen in brain disorders such as cerebral palsy.  As my M.E. improved the ticks are much less frequent and severe than they used to be, though cramping in my muscles has gotten worse (it’s now 10am and I’ve just taken Bertie out for a 10 minute walk and my legs are cramping away like billy-o).

Talking of cramps, I get them in my brain.  When they were really bad I remember telling my GP about them and she told me not to mention them to anyone but her as medics would think I was nuts.  The sensation is just like the charley horses you get in your calves, only they’re in my brain and feel like a seizure (but without any loss of consciousness).  I feel proper tired afterwards though and often quite spacey.  I had an EEG which was normal so it’s probably been put down in my notes as a panic disorder or some other psychological issue *sigh*.

I have all the usual hyper-sensitivity issues that many people with M.E. do and am particularly sensitive to touch.  When I was severely affected I couldn’t even be hugged as the sensation on my skin was simply too painful 😦  It’s not as bad now thank God but I do still hate contact which is sudden or forceful and don’t get me started on hot and cold which can be acutely painful.

I haven’t found anything which helps my paresthesia.  It’s totally outside of my control and for the most part it’s just something I’ve learned to live with and block out.  I very much look forward to the day, though, when treatment is found for M.E. and my internal electrical current is finally turned off and I can rest in peace!






7 thoughts on “Paresthesia

  1. Sarah

    Three questions (morning, by the way😁)
    1. Does it feel like you have insects crawling over your thighs. I do and they’re worse when I lie down to go to sleep
    2. Does your brain spasm make you feel like you can’t move, only your eyes, if you do your muscles spasm so hard. Your heart rate and breathing decreases, and you feel really hungry too afterwards?
    3. Have you heard of Arachnoiditis?


    1. Jak Post author

      Morning Sarah!

      1. I fortunately don’t have the sensation of insects crawling on my legs, but it sounds awful and you have my sympathy :-/

      2. Re the brain spasms – when they were bad I was unable to move but was fully conscious. I didn’t really notice heart rate and breathing decreasing, but I had over whelming fatigue afterwards often for several hours. Don’t notice any increase in appetite, but maybe that’s because due to the Menopause I’m like the hungry caterpillar 24/7 😉

      3. I haven’t heard of Arachnoiditis and had to Google it. Fascinating and for me would tie in with having meninigitis I’m sure. I wouldn’t dare ask my doctors about it though, as they already think I’m a bonkers hypochondriac who collects rare and difficult to diagnose diseases for fun lol! But I’ll definitely read up a lot more on it, thank you 🙂

      Jak x


  2. Karen, The Walking Allergy

    Most of those feelings are pretty familiar! For me, the muscle cramping is solved by IV potassium once every two weeks. The ‘antsy’ feeling is what is left after all my meds have kicked in, it’s like dialed down itch. Ativan works like a charm for it- (not for you, but for the walking pharmacy I am, it works wonders. My feet move all the time. My toes wiggle non stop, even in my sleep, apparently. If I consciously stop them, my RLS kicks in. It seems I’ve replaced an internal feeling,

    The one thing you didn’t mention was synesthesia. Sounds have colours for me, and vice versa. The correct sensation is louder than the secondary one, but very clearly there. Have you seen ‘Ratatouille’? In one scene he eats one food, then another, and visuals come with the taste. The he puts them together and it creates a symphony. Until that moment I had no idea that to most people, taste doesn’t have colour, sounds and the sensations of touch with it. MSG is sparkly, almost white, and chaotic. Vinegar is slippery, sugar is pink, etc etc. The lit of things I thought were normal… no wonder they think I’m bonkers!

    The headache thing made me laugh- I once told a neurologist that my migraines felt like asthma in my brain. She looked at me with the full-on ‘This woman is batshit crazy!’ look. That was 20 years ago, now they actually use that expression to describe migraines. Told you so, ya dumb doc! A bit like knowing that my dermatographia was tied to certain foods and to mold (mostly from the 20 year of portable classroom where several of my courses were.). Being ahead of the curve in medicine does not always serve me well…

    Always so good to hear someone else describe all those supposedly impossible sensations.



    1. Jak Post author

      Wow, the sounds having colours is fascinating Karen. That’s a bit like what happens for some people on the autistic spectrum, and I think there is work being done linking autism to mast cells. I don’t have that issue, just hyperacusis thank God. Jak x


      1. Karen, The Walking Allergy

        I used to work with kids with autism, and I always identified with their sensory integration issues. I don’t fit on the spectrum, but if I’d been this severe from birth, it would have hampered my brain development. I don’t think the synesthesia is MCAS linked, though. My son (who doesn’t have MCAS) has sensory integration issues as well. It’s more ‘interesting’ than a problem per se. Somehow my son has taken that skill added it to others and become an artist. His art is already so far behind anything I could ever achieve, no matter how long I practiced. He has the IgE allergies, my daughter has MCAS. I’m hoping like hell that it stays ‘split’, ’cause the combo is nasty!


  3. That Other Jean

    You’re a brave woman, jak. I’m reasonably sure I would have given up long ago and spent the rest of my life in a nursing home, if I had your problems. And yet you have built a reasonable, gratifying, and useful life for yourself, and write a blog giving advice and encouragement to the rest of us who suffer only some of what you’re going through. Thank you!



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