[ShaggyChic_1201]

My SFPN is relatively new and I haven't scared away all my friends yet by talking about it incessantly It's hard to describe what it feels like though.

Here's what I came up with, but want to hear YOUR descriptions.

• At my best: the pain in my arms feels as if I tangled with a cactus and was then randomly splashed with lemon juice.
  
• Most of the time: the skin on my arms feels one size too small, as if it were exfoliated with coarse sandpaper & doused with lemon juice, PLUS my wrists and inner elbows were badly bruised.
  
• At my worst: I've dipped my arms up to my armpit into bottles of battery acid.

What would you say?

[echoes long ago]

my feet feel like im being stepped on by a horse from underneath every step i take

[bluesfan]

When I take a shower for about 3 hrs afterwards it feels like I'm walking through a cactus patch - this is the description I use when trying to get across to the doctors what it feels like.

I sometimes have allodynia which I describe as being hit by a hammer when I just lightly touch my arm.

I've stopped trying to describe it to friends and family as I know they just don't get it.

[ShaggyChic_1201]

Echos & Bluesfan

You're both quite descriptive. Even though I don't experience foot pain, I can empathize based on your descriptions. Bluesfan - I'm sorry your F&F don't get it. I guess we are grateful they don't, right.

Originally Posted by bluesfan

I sometimes have allodynia which I describe as being hit by a hammer when I just lightly touch my arm.

I've stopped trying to describe it to friends and family as I know they just don't get it.

I've got that on the right arm. It's miserable.

I have desensitized it just enough to where I can wear loose 3/4 sleeves. So generally I'm freezing in the winter or in air conditioned places.

[onebeed]

I feel like I am being electrocuted while on fire.

[Sven]

I get what you are all describing...unfortunately I have it on my hands, arms,legs and feet...I once described it to a friend as someone pouring hot molten lead on my hands...and several months later on my feet...that is at its worse...when I saw the look on his face I quit sharing...no one needs to imagine that event let alone live it.

This conversation depresses me...can we describe the feelings of long walks on a beach in Kauai? Now I am feeling better....

[ShaggyChic_1201]

Originally Posted by Sven

I get what you are all describing...unfortunately I have it on my hands, arms,legs and feet...I once described it to a friend as someone pouring hot molten lead on my hands...and several months later on my feet...that is at its worse...when I saw the look on his face I quit sharing...no one needs to imagine that event let alone live it.

This conversation depresses me...can we describe the feelings of long walks on a beach in Kauai? Now I am feeling better....

I'm sorry.

[dogwalker]

Originally Posted by onebeed

I feel like I am being electrocuted while on fire.

I think it's interesting how our brains try to make sense of what we're feeling, and come up with something that we've never actually ever experienced. My burning feet feel like I'm standing on hot coals and cactus at the same time.

[glenntaj]

--"imagine you've got a real bad sunburn (in my case body-wide) that someone is rubbing with steel wool. And then add to that the safety pins pricking you all at once."

Of course, this does tend to make people recoil . . .

[Littlepaw]

You open your blinds after a peaceful night and look out. The mist that rolls down from the mountain at night is still clearing. A rainbow has formed on the other side of the bay, promising another day of beauty and restoration. A little catamaran is anchored nearby. Later it will go out on a sail to look for flying fish and turtles beyond the reef.

You make your way down to the shore. It is early and the beach is empty. Your feet are hardly bothering you at all. Just a touch, but as soon as they hit the soft dry sand you forget all about it. The sand is very fine and sticks in between your toes. Your feet sink as you walk until you get to the harder pack. Here it is cool and easy to walk. The grains feel good on the bottom of your feet. The surf is coming in gently from low tide and the waves come up and kiss your toes. You walk further into the water and the coolness of it is perfect bliss. The gentle salt water keeps away any swelling and any pain and you are free to just enjoy.

Tide pools are exposed at this early hour and the majesty of the planet is revealed in an abundance of creatures. Tiny hermit crabs, no larger than a grain of rice can be seen moving at the bottom, a black and white cone snail makes its way across a rock, a baby cornet fish, looking like some strange alien, has become trapped in the shallows but skittles out to sea when you startle it. Pink and yellow corals shelter small colorful fish.

You look out over the water as the sun breaks through the clouds and light dances on the waves. An early paddle boarder is out past the reef getting ready to catch a small wave to the mouth of the river where they will go explore upstream. In the distance the shoreline of the Na Pali coast rises dramatically out of the water in razor sharp crests, reminding you how very small we are and powerful the planet truly is. You sit idly at the shore a while longer, searching for small shells when a rumble reminds you that it is time for breakfast and you head back in to search for mangos....

Have a beautiful day.