Clearer description of RSD & me.

I've been sitting here thinking... I want to be more precise about my pain so that anyone reading could get a more clear picture of the pain that RSD causes... so here it goes...

This is MY PAIN (24/7, 365 days/year):

PAIN LEVEL on a scale of 1 to 10 (1 best, 10 worst):
My pain is a 10+ with often having to redefine what a 10 is as the pain continues to worsen daily.

Starting from top to bottom... then overall...

My head:

• My scalp feels as though the skin (skin all over body feels) has been set on fire!!! Ever get to close to open flames for a little too long?? That searing intense burn?!?! That's how my scalp feels when touched by anything, even by a breeze!!
• An itch on my scalp... to scratch leaves my head feeling RAW, BURNING, as though my fingers have scraped away all of my skin exposing nerves to the air.
• The movement of my hair feels as though each hair is being ripped out of my head!!
• Brushing my hair--not something I can have done more than once a day...feels as though the brush is a sharpened rake and it has dug into skin, scratching deep and is peeling away my skin. Making it feel raw!
• I have a sharp aching feeling in my head right now... I often feel this, It feels as though I have an ice pick being shoved from the top of my head down. It feels as though the pick is being twisted and turned, it feels as though the pick is being being moved around pointing in many different directions.

My face (forehead to chin):

• Mouth: Feels like I am drinking and/or eating razors, sharp needles, pieces of sharp glass. Feels as though the food is a HOT saw, shredding my tongue, cheeks, roof of mouth, and lips.
• My breath: Burns my lips as though the skin has been peeled off leaving them raw. The inside of my nose feels raw when breathing.
• Eyes: Feel as though they are burning--worse than a day at the pool chlorine burn, more intense than soap or shampoo in your eyes. I also feel often like something is stabbing my eye from behind..it's a sharp, long, nail like stabbing feeling.

My hands and arms: Each touch I touch sends Zillions of razor sharp pains through my fingers and hands.. I've lost much strength! I drop things easily...not even realizing I have dropped them...my hands just give and whatever I am holding falls to the floor. I have broken too many glasses to count. I used to cook but the pans are now too heavy and too hot...any heat feels like I'm on fire... I have dropped pans on my feet, on other's feet, spilling contents on everything, injuring and burning myself and others. I'm no longer allowed to cook. I'm no longer allowed to hold little babies without being seated...my hands and arms give out... I can now only lift a few pounds and carry even less.

My Feet and Legs: Walking is becoming more and more difficult!! I can only walk short distances without having to stop and rest or sit down...the pain increases with every step! Each step is becoming more and more PAINFUL with each passing day! My feet feel like the bones are going to shatter with each step!! I feel stabbing pains in my feet and legs...Like I am walking on sharp pieces of broken glass, jagged rocks, hot coals, and molten lava. The pains shoot like electric shocks from my toes through my legs and hips... I also have extreme pain in my hips, legs, knees, ankles, feet, and toes if I have to sit more than 10 to 15 minutes. The muscles and joints seem to want to lock in place and resist with much might when I have to move...feels as though I am tearing my muscles, tendons, and ligaments apart and as if the bones and joints might rip apart and break! My muscles cramp twisting my toes, feet, ankles and legs into weird positions!! I have to walk with small, precise steps...my balance is not longer very good... I fall daily, numerous times weekly, sometimes numerous times daily!!!

I've tried walking with a cane, only to have my legs, hands, or arms give out while trying to support myself and I fall to the ground. I've tried a wheelchair but my hands and arms are no longer strong enough to move myself along for more than a few moments, a few feet. Many days the pain is too much making it impossible to wheel myself at all.

FULL BODY:

1. Muscles: Twitch, Spasm, and Cramp!!!! The muscles feel as though they are being ripped apart. Like something, maybe a dull chainsaw, has grabbed a hold of my muscles twisting, turning, pulling them apart, shredding them into small pieces. It also feels as though something hot or ice cold is jabbing and zapping them with high voltage electrical shocks. These twitches, spasms, cramps, zaps leave me paralyzed with fear for quite a long time after... I fear that if I move these will happen again and will hurt worse. This is what happens...I move the pain increases!!
2. Bones: Feel like they are breaking, like they have been smashed, like they are twisting. The pressure is so very intense it feels like my bones are going to shatter at any second or with the next movement or the next touch.
3. Skin: Turns colors from purple to gray and often mottled. It feels raw, burning as though I have a BAD sunburn--one that blisters and peels deep layers of skin away...and there is nothing you do can ease the pain, not ice, not aloe, not cool water, not ointments of any kind! Any touch from breeze, breath, clothes, bedding, family, friend, young child, shower drops, rain drops all cause so much pain...even the lightest of touches feels like sliding across gravel, glass, hot coals with exposed raw nerves.
4. Joints: Often LOCK and have to be forcefully moved.... sometimes this is not possible. No matter what I do, I just can't get them to move when they refuse to move. Often when I do get them to move, there is a LOUD POP and increased pain. Also, most of the time my joints feel like they are ripping apart--like tearing into meat with a fork.

My body often feels as though it is burning very COLD or very HOT to the touch... other times I feel hot or cold and when I touch the area it is not how it feels on the inside.

Cold and Hot temperatures are very painful.... HOT BURNING, Like hot melted cheese being poured on my skin. I've experienced burn like marks on my legs when they were only exposed to heat... nothing touched them to burn them. COLD BURNING as though I've been left on an iceberg in the sun with no protection from the elements.

A shower feels like I am being pelted and impaled with Zillions of HOT, SHARP NAILS...even when the water is not so hot or so cold. I need help getting into and out of the shower/bath. I need help bathing and washing my hair... I have extreme difficulty and pain trying to move to wash myself and my hair.

Shaving...feels like running a lawnmower over my skin... If I don't shave, I can feel every hair rubbing against my clothes... this feels like the hairs are being ripped from my skin. (I never had much hair on my arms before RSD, now I have loads of hair on them! Anything that touches my arms feels as though the hairs are being ripped out one by one!)

OVERALL: I can't walk, sit, stand, or lay in any one position for very long...Pain increases to the point of having sit when walking or standing, to have to lay down when sitting, standing, or walking, having to change positions frequently when laying. Every position causes pain to intensify... Pain continues to worsen daily, though I don't know how or why...I didn't even know it was possible for pain to continue to increase in intensity. I PASS OUT NUMEROUS TIMES (5-6) Weekly due to pain.

Sleeping: I have extreme difficulty sleeping, only sleeping a couple hours a night most often only 20 to 30 minutes at a time. I often DO NOT sleep at all...recently slept 6 hours in 10 days then slept a couple of hours... and up for 3 days...then back to the 20 to 30 minutes for a couple hours total a night.

Shoes and clothes: I wear slip on shoes as I have extreme difficulty, almost impossible, in tying shoes. Even the lightest weight shoe causes severe pain in my feet. I wear clothes that are easy to get on and off... though I do have to ask for help with buttons, zippers, and socks. I wear the same kind of clothes as I did when I was first diagnosed with RSD--my physical therapist at that time told me to do this so my body would get used to the fabric as much as it could...IT IS STILL VERY PAINFUL WHEN THE MATERIAL TOUCHES MY SKIN.

Medicines: I have been on numerous medicines... I take them as prescribed. Some of the medicines I have been on for a long time... I don't know if they are working or not... I've never been off of them and have been at the same dosage levels for a long time. I can NOT take narcotic pain medicines as I have had severe allergic reaction to each one tried...anaphylactic shock is a terrible and scary thing. I've been on steroids with no relief. I've been on anti-inflammatory meds with no relief. I take anti-seizure medicine that helps, a little--I think, with the nerve burning pain...This is one of the meds that I have been on for a long time. I take medicine for the muscles cramping/twitches/spasms... I do know that this one does work as I take it 4 times a day and get relief shortly after taking...unfortunately the relief is not long lived.

I also take medicines for mental health---Depression, Bipolar, Anxiety, Social Phobia, PTSD, and CONSTANT Suicidal thoughts. I do know when these medicines are working and when they are not. Will talk more about my mental/emotional health in another post soon, though it is probably easily seen in previous posts that mentally, emotionally... I WANT this ALL TO END!!