Explaining parasthesia to others proves funny

[stoshooo]

So, while I realize that a lot of you have experience with this sensation - it has become so bothersome and painful that I cannot work - all I do is lay in bed and go to Dr. Appointments the last few days. I cannot concentrate on anything - I honestly feel partially disabled from this - it is so unbelievably uncomfortable. ALSO - describing this to family and friends is proving to be difficult. The only person that immediately nodded her head and was like "yep" was my neurologist lol. Everyone else - well, I'm starting to see the humor in it... lol

Them: "how are you today Stacey?"

Me: "oh you know, the same..."

Them: "so...your still, like, numb or something? You seem to be walking fairly ok..."

Me: "Yeah.... You know when your foot falls asleep...and then you go to step on it, and it starts to wake up and hurts, and you feel pins and needles, and its still kinda half asleep...? Yeah - that is my left side of my body from head to toe - constantly"

Them: "well that sounds aweful - can you feel this? (pokes my face) can you feel this? (pulls my ear) can you feel this??? (pinches my arm)"

Me: "Yes demmit! It hurts! Stop doing that!!"

I have used the foot-fall-asleep description about 20 times in the last two days and my family wont stop poking and pinching me. lololol

[mjan]

First of all, did your family/friends REALLY poke you etc?
Gee wiz...

What I would suggest is that they stand outside in the cold and put their hands/feet in the snow. Okay, maybe that is too harsh..but you could have them put their whole hand, past their wrist in a bowl of crushed ice. Keep it there no matter how much it starts to hurt and go numb..then keep it there some more.. maybe THEN they would appreciate what you are trying to explain to them about your pain and numbness!!!!

Cruel? Yes, but it makes the point.

Okay,, I'll crawl back into my cave now..

Jan

[CaroleL]

Stoshooo,

Having a sense of humor is sometimes the only way to go. Sounds like you're doing it right!

[mama292227]

so true

i have used this discription so many times and all i receive is funny looks. also have said " have you ever put your tounge on a 9 volt battery? yep like that. I'm charged" good luck to you

[Jason87]

Weird, I can't imagine a feeling like that. My paresthesia has always manifested as crawly/tightness on the right side of the face followed by a lack of feeling for a couple days. Pins and needles that don't go away sounds hellish lol

[CaroleL]

I must remember that one mama! Lol!

[Leannrough]

I can. Relate I've had numbness and burning in my legs for 3 months constantly
Can anyone relate to that
I'd love to get out if this state any advance

[stoshooo]

i have used this discription so many times and all i receive is funny looks. also have said " have you ever put your tounge on a 9 volt battery? yep like that. I'm charged" good luck to you

lol I'm toooootally using the 9 volt comparison from now on...

[stoshooo]

oh - lol - and yes a few of them have poked me - mostly my face and ear - luckily they all have a sense of humor too!

[stoshooo]

Leannrough I am so sorry - that sounds terrible. One leg is bad enough!

I know for me, they are about to put me on another round of steroids - but this time they are going to taper me off. The didn't do that when I took them a week and a half ago - I had 6 days of 1000mg methylprednisolone IV treatment and then BAM, stopped. It took about 4 days for my left side of my body to revert back to the original symptoms only in more full-force.

I'm very new to this - have you been on steroids for this? And did they work and then stop?

[KateA2]

Oh yes, I can relate:

pins/needles, electrical-zings, crawling skin, and intermittent burning + freezing from my mid-thighs on down on both legs. It's permanent, I think, as it's been over a year since the causative attack with almost-nil sensory improvement (but tons of balance and gait improvements...phew!)

You may need to increase your neural-pain medications until you get some relief. I'm on 2200mg/day of Neurontin, and it's been a life-saver. I can go about my day somewhat comfortable now instead of constant torture 24/7.

[lemstar]

I got a few more:
--there's a lump of something in my sock
--my foot/hand/whatever is wet/cold/hot
--i feel like there is a rod inside my leg, and someone put a vibrator on it, and it is buzzing inside my leg
--like someone cracked an egg over my head and it is running down my head
--uhoh--the room is tipping....

[HETA78]

OMG the lump in the sock thing is so annoying! I said it felt like I was standing on top of a rope or cord of some kind. I alos felt the egg over the head thing and what I consider "novacaine leg". Luckily I didn't have the pulses or any pain, just annoyance. My numbness slowly went away after about one month. It was seriously a little bit at a time until one day I noticed the very tips of my fingers were the only numb part of me. Today I have no numbness.

[Leannrough]

I wold so live to be free of this numbness and burning
They did give me a steroid pack try went from 6 down to one
But first day I thought it was helping a little and the cramping in my calf was better so I could walk a little bit better but then as it tapered each day l found no relief
I see the neuro tomorrow for EMG testing and to talk about my mRI
Has anyone had the IV steroids with being diagnosed with MS yet ?
They have not prescribe me anything other than that one pack but I can't stad living with the numbness, burning and cramping in my leg all day and night long

[Tracelyn]

I have what I call the "triangle of numb" that occurs pretty often in my face. Put your index fingers together and then thumb to thumb and place it top of the nose and that gives you the idea of the area. It tingles and is numb and also affects my tongue.

I also have the bunched up sock feeling in one foot, there is the hyper sensitive area from elbow to wrist, and lets not forget the icy cold feelings in my feet.

I have to take a low dose of neurotin, otherwise I sleep too deep and will not wake up with the middle of night urge to pee hits.