I have in law family that i have tried to explain crps to, but i dont think they really get it. My husbands cousin has fibermyalgia and they always treat her like she dramatizes her aches amd pains as if she is a drama queen.

We have told my husbands family about my crps, and most of the time when they are around i dont say anything about my pain, but if they ask and i say anything about the painful episodes they just say "its been a year, your still having issues with that!" No matter how many times i try to explain its a lifelong thing, its doesnt heal itself.

How do you explain what crps is so they understand your not just being a drama queen?

yeah, that's a tough one huh? I'm trying to train myself to put it simply
that I have a nerve dystrophy that causes my nerves to misfire causing all sorts of pain and BTW there's not cure to date.

Hey there! Sorry you are dealing with this monster.

That is one of the hardest things, trying to get people to understand or even show empathy. No one will ever have 100% understanding unless they suffer from it. Visit rsdhope.org, there is a lot of great info there. Here is a link to a letter to family and friends. I shared this on Facebook and gave it to some family members to read, it helped.

http://www.rsdhope.org/letter-to-fam...-patients.html

I even ordered some pamphlets from that site to give out. I was having pre-op testing done at a local hospital recently and the nurse never heard of RSD/CRPS, so I gave her a pamphlet. It was too late for it to benefit me, but hopefully it will educate her for the next RSD/CRPS patient that goes in.

Wishing you the best,
Nanc

So sorry to hear this. Please read the post I placed above your's. It might help...

Be well, James

After 10 yrs I'm still trying to get my in laws and my family to understand. I tell them I feel like someone decided to place a 100 blowtorches on my bones, while a1000 yellow jacket wasps sting my skin, and they took a fully loaded big rig and places it bumper up on my leg. Thats on a bad day. On a good day the yellow jackets are just starting to sting me a bit. That usually shuts them up for a bit. Then I tell them what is really happening is the nerves in my leg are sending signals to my brain that its broken when its really not. I usually get oh does it really hurt? I as the guys if having their testicles crushed in a continuous vice grip hurts. I'm malicious when I hurt, and I get tired of explaining every day or 2.

The testicle vision would explain it well....
Ouch!

I've given up trying to explain rsd to people, even to my drs. I now hand out pamphlets from rsd hope to give to them because it explains it better than I can. Some of them read it and some of them don't. It can't hurt to try to educate people. I feel that the more people know about what rsd is, the better chance there is to find a cure for this horrific disease. Like I said in another thread, Knowledge is Power. I believe that anyway. I hope you can all get your family and friends and doctors to understand what rsd is. I'm still trying to get mine too. It's not easy even with the pamphlets, but they help. Take care. My thoughts and prayers are with all of you. With love, Renee.

They probably think it's like getting a cold. They don't know it's a lifelong which is probably why they said you still have it a yr later. I just say it's a condition that you get from some kind of injury, or surgery, and list your symptoms. Everyone has dif symptoms.

I have a rule. I don't tell ANYONE that doesn't know me really well. I don't want people thinking that people in chronic pain are grumpy or mean etc...I try to act normal in front of others.

I hope they understand what you go through. I think they'll get it eventually. Good luck to you!!!!
Heather

Thanks for the advice...I also own and operate a small business and I have many clients that have also becomes friends over the years. I am having a hard time decided whether to just go public with my condition or leave it in the dark.
I have slowed down a bit, and I'm not taking on as much work, but I do continue to work day to day. Some have asked why I'm not doing this or that in the business, and I just tell them that I have allot of personal stuff going on right now.
Sometimes I feel like I should let the cat out of the bag, but I don't want it to hurt my business.

Hi Ozzieace

Good question lol, to which there is no easy answer...

I say that I have a rare nerve disease called CRPS which causes me constant pain and makes my body very sensitive to things like cold, touch and wind. All those things cause me more pain. There is no cure yet and painkillers do not take the pain away, even opiates. The pain gives me headaches and affects my concentration sometimes, and can make me very down, but I work hard to appear normal.

I've found that words like 'rare' and 'disease' tend to have a little more effect on people, and even if they don't understand, they listen more to the end part. Obviously it varies but I generally get this much info out. I then stop and don't say any more about it. If they ask more questions I'll happily answer them, but I don't volunteer too much - eyes can glaze over and you end up a social pariah!!! Some people just aren't interested in any illness that can't be cured by surgery or Nurofen lol, and you're fighting the tide there.

I'm always interested to hear how other people explain it - my version has changed several times over the two and a half years I've had it!

Bram.