Reflex Sympathetic Dystrophy Support Group

Hi maddiesgram,

I'm going to do my best at not giving up 1/2 way through!

First, my injury was the result of my foot getting caught under a piece of disused rail track (while sliding sideways down a slope) with my body going over the top and twisting 180 degrees. Surprisingly, I had no breaks, and the injury was to my left foot.

Here's what my CRPS feels like:

- My foot feels ice-cold, in sensation and to the touch.

- The underside outside of my foot is numb to touch.

- The top outside of my foot is hypersensitive to touch.

- There is a line of burning from my small toe to my ankle that sometimes will go up my calf. I equate this to the sensation of being hit with hot bacon fat (but a constant sensation).

- For a length of about two centimeters behind my small toe there is a "sour" sensation. Imagine sucking endlessly on a sour lemon. I can vividly feel this behind my eyes, thus giving me constant headaches.

- From the "sour" area to just in front of my ankle I consider it to be "Raw". I describe this as if you rubbed a part of your skin until the raw underside were exposed, then you poured salt all over it and rubbed it in.

- Around my ankle on the outside of my foot there is a "clawing sensation" as if there is a small rodent or cat trying to claw its way out.

- In two very specific locations on the outside of my foot it feels as though it's being hit repeatedly with a ball pein hammer.

- Recent changes are that the cold and the raw sensation has traveled up my leg, into my knee and quadricep.

- The Raw feeling has also moved to my left fore-arm and hand, as well as to the second toe on my right foot.

- Additionally, the colour is mostly blood red with changes to ghost white and deep purple.

- Conveniently it will spontaneously and randomly stop supporting my weight as well.

The overall pain levels are always about the same at 8/10 but these individual sensations do fluctuate with some more noticeable than others at completely random times.

In Laypersons terms I like to tell people it feels like this:

Arctic Ice, Numb, Hypersensitive, Hot bacon fat, Sour lemon, Burrowing headache, Salt in an open wound, Clawing rodent, Smashed with hammers, and seriously freaky colouring. Oh, and completely unreliable.

Ah, I finally made it!

fim

Regarding Shoes...

I have to wear socks all the time, even pj trousers brushing my foot is excruciating. Other than that, I have to wear shoes that can be slightly snug fitting as I can feel the slipping of loose shoes and it's far too unbearable.

Post edited by: footinmouth, at: 06/24/2012 05:35 AM

Congratulations, footinmouth, you have just described both my feet and right hand and arm and lpwer legs. Except I also feel like there is a high electrical current coming out of my large toes and sometimes other toes and my bones ache as well as feeling like the bones are being crushed. Other than that, your description is right-on. Oh, and when I put weight on my feet they feel like I'm walkung on shattered glass.

I am proud of you for putting that description, so detailed, on an email. I know it was hard. Sometimes the first time is hardest and I hope you are able to share more as you share more.

Rev.

Hallejuah!

Footinmouth you and Rev, have also describe what my foot feels like! Job well done! Hope you will continue to share with us!

I am fairly new to this disease but I figured I would give this a shot as well. My CRPS started as a result of labrum repair surgery on my right shoulder. My arm was immobilized for 4 weeks and during that time I experienced extreme burning in my shoulder and swelling in my right hand and forearm. Later on I was diagnosed with CRPS...

So what does it feel like:

At times it feels like someone is stabbing me in the top of my hand with a hot knife.

My hand and fingers are almost always swollen and either mottled blue or red. I they are not swollen, they are white.

If I walk too close to the refrigerated section at the grocery store, my arm and hand will start to burn like a blow torch is hitting it.

Sometimes it feels like the skin on my arm is rubbed raw and the nerves are exposed. At these times I cannot let it or my fingertips touch anything. The only thing I can do is quickly drop my arm onto a surface and try not to rub in any direction.

Then there is the deep aching feeling in my bones. This can be the worst because the pain meds don't touch it.

Sometimes during bad breakthrough pain, my right lower leg and foot will also cramp up, as well as my left arm.

One weird thing that happens at times is the feeling of an electrical charge running through my whole arm down to my fingers. It makes my arm shake and it feels like my bones are crushing, like they are about to break.

CRPS is also a sleep depriver. Not only because of the pain, but because of the nature of the disease and it's effect on the brain.

Sometimes the meds do their job for me, or so I think. Sometimes the physical therapy is helping, or so I think. I will go days with manageable pain then wham! During physical therapy on my shoulder, sometimes the therapist can touch my arm and move it all over no problem. Them I get home and my arm is burning where she was touching me.

Well, I could go on. But you get the idea. I figure I have been suffering with this since around the end of March. Most of you a lot longer. Again thanks to all of you for your support, could not be handling it without you...

So when people ask me what it is like, I say google it...

F820,

I always look for silver linings. Thank goodness there's one with all that I wrote. Sorry to hear that you (and Rev) are experiencing a similar thing. But, In a way I'm glad. I's hard when it feels like no one around you can ever possibly understand it. And I even think that I can't possibly understand what anyone else with CRPS feels because each case is so individual. So, I'm glad that there's an opportunity to understand and to be understood at least as close as we can.

Sorry it sucks. But, I'm feeling it with you. It's kind of a big thing for me as I feel less alone.

Jkb,

Thanks for your note about the knife feeling. Sometimes my "hot bacon fat" feeling is similar to the point of a knife cutting back and forth.

Also, thanks for your note about sleep. You are too right. And it's not just the pain, but the extra stressors that come with it. I've got a couple of solutions. I always sleep with a fluffy synthetic sock to keep my foot less cold (not that it works). I've also built a frame to keep the covers raised up so there is no pressure on my foot. Finally, I stay up so late that I cannot possibly stay awake any longer. That is whne I go to bed. If I go any earlier and the pain doesn't keep me up, my mind starts thinking about all the stress.

fim

Gail,

I wanted to add my 2 cents in on this topic. I feel:

•burning

-like someone has poured gas on my and lit me on fire

-smoldering like white charcoals after the fire has died down but they are still hot

-dry ice burn/ freezer burn like I would imagine being encased in dry ice

•stabbing pain

-with an ice pick

-with a sword or machete

-with an ax

-barbed wire is traveling through the veins of an area of my body

•pounding pain

-like a sharp spike is being driven into me

-like a dull railroad stake is being driven into me

-that I am being hit with a heavy mallot, like one used at the carnival to ring the bell if you swing it hard enough

-that I am being hit with a hammer

•bone pain

-really deep bone aches

-like a bone is broken

-as if someone is taking an ax and hacking at the inner core of my bone

•numbness/ pins & needles

-likes there are bugs crawling on my skin

-like I am being stung by a bee in the same location repeatedly

-like I am being stung by 1,000+ huge fire ants in one area

-totally numb, with no sensation

-like there are bugs crawling under my skin

-that an area itches but when I try to scratch it I cannot feel myself scratching it/ cannot feel the area being scratched so it keeps itching

- genral pins & needles, varying in intensity

•muscle spasms

-constricting and releasing of muscles

-contractions so intense you can see the muscles contract under my skin

-spasms that cause my limbs to torque

•pressure

-like part of my body is in a vice that is closing

-that my body is touching something it is not (nerve memory)

-that my part of my body is in a room in the fun house that keeps getting smaller and smaller and smaller

I don't feel all of these at the same time, but for sure all within a day. These are the descriptors I use to describe to others how my pain feels. Hope that helps. I could add more if you want.

When I saw a reply to this question a few days ago and I had zero memory of asking the question, it really concerned me! Then I saw the date (year-2010) and was so relieved! No wonder I didn't remember. I'm really grateful for the replies. It has to help some of us and it helps me to read descriptions that are just like the pain we have or very similar and be comforted by it. Not that we would wish pain on another person, but that others have experienced such a strange and awful thing it helps us that others do understand and also believe us when we describe our pain.

Some descriptions were so detailed and SO much what I've experienced! I think when I first asked this question I was hoping that we would get answers and have a place to show family members that others felt what we say we have been feeling. Maybe that will happen. Now I'm just glad that we can come here and understand one another. I also have:

The deep bone pain in the bones in my toes which feels like someone has been hammering on them and they are not only broken but trying to explode!

The stabbing/tearing where my incision was and it feels like a giant knife is in my foot, or a potato peeler which is turning around and tearing the flesh.

The burning which feels like a fire from the inside of my feet trying to get out.

The knife slicing the top of my foot/ankle where any pants, even pj's lightly touch it.

The pressure of socks causing my pain level to go from a 5-6 to a 8-9 in seconds.

The touch of clothes feeling like tons of stinging ants or burning cloth.

Pain when very high causing me to hold my breath without knowing it, and/or my stomach starting to spasm, and my foot and leg to jerk around and spasm.

Feeling pain in my little toe so extreme that I wish I could cut it off- oh yeah, I did!

Again, I sure appreciate these answers. To know that others get what we are experiencing SO closely is a relief of some kind. I hope it helps someone who reads it.

gail

Gail,

I have a few different issues going on with my wrist and can tell the difference. The RSD feels like sun poison under my skin, when I attemp to touch it it stings so bad. Also...omg here I go (lol)...I have a fracture, The 1st surgery on left wrist was Aug, 2010, they had to do a bone reduction and then 6 months later a revision was need, the hardware had loosen and/or came out moving the plate and bone. The facture is about 70% healed. Even when I attempt to try and move my wrist, the RSD prevents it, causing me to lose permenate mobility.

Barb

Post edited by: Barcon, at: 06/26/2012 01:53 PM

Gail,

2010? Really? I hadn't noticed the date. Glad this popped up though. I don't feel quite as alone anymore.

fim

Gail

forgot to mention appearances. My wrist is always swollen,but I do not have the rash that all speak of, but both palms are red and very hot all the time, nails on left grows very fast and no hair on left arm, it is shinny white and my right arm trmors and when it gets out of controll the left goes in stero! Also am very hypersensitive to anything close to both wrist. Cold, wind, rain.....oh and humitidy kills me as well!

My right is not as bad as the left, but I do have some concerns about other parts of my body. I am a modest person, not like the Duggars...lol but in the last few months, I hate being completely dressed. Mostly pants, I prefer to have hubbys T shirt, socks and undies on, then wrap me up in a nice warm quilt! Of course with a cup of tea and scone.....with a small amount of butter!!!!!!

Barb

Post edited by: Barcon, at: 06/26/2012 01:34 PM

Post edited by: Barcon, at: 06/26/2012 01:54 PM