[michelles]

okay here it is, you have friends and family you see them all the time you are doing things because you are active you love life right? then rsd hits .... your phone doesnt ring anymore no one comes over, and you are like what is going on?

so you ask your friends,family whats up? we used to see eachother and talk everyweek? and they say well you are in so much pain we dont want to bother you... okay ... then comes the question from friends and family

WHAT IS RSD/CRPS? i tell them it is very painful, they see the boot on my foot and i can barely walk anymore and ask why are you still wearing that? it is for fashion lol... but i then tell them that rsd is a nerve condition that the brain tells the foot (in my case) that it is still injured and it swell and its cold, blue and just really hurts. and then they reply so it's kinda in your head.

it really hurts my feelings because one they would say that but i just cant make them understand what i am going through.

how do you explain rsd/crps to your friends and family what this is with out saying ,will you go to the internet and read up on it?

thank you for you time and help take care, michelles

[SBOWLING]

Hello Michelles,

I know it's frustrating when you have to explain RSD. I just tell people it's like a short circuit. The sympathetic nerves don't communicate with the brain. The nerves continue to misfire causing a great deal of pain.
Some people understand and some will not. Try not to focus on the people who don't get it. Enjoy, your time spent with the people in your life that care and do understand.
Take care,
Sherrie

[Jomar]

Someone at one time posted a letter about living with chronic pain, to give to family members and friends to help them understand.

I found it!!


http://neurotalk.psychcentral.com/sh...ghlight=letter

[michelles]

o my gosh... that was great thank you, i am going to copy that and send that in a email to my friends and family and THEN MAYBE they can understand what i need of them and understand what i am going through.

thank you so much for sharing your ideas and thoughts with me it does help alot. michelles

[CRPSbe]

That's the exact mistake I made in the beginning. I tried to explain it completely. The symptoms are so whacky that your own sense of coping inhibits you to explain it well. And you do have a part in it! Most people can't listen to long explanations. They need to be told something brief, simple. If they don't get it even then, then they don't get it. I'm not wasting my breath on those people by writing them long letters hoping for sympathy. I don't need sympathy. The people who do understand will come to you, won't run from you.

That's why now I tell people who ask that I had a car accident, that I have a lasting and disabling complication from it and that that complication is called CRPS. I leave it at that unless THEY ask for more information. That seems to be understood better than summing up the whole symptoms list and telling everyone that you're in pain.

Keep it short and to the point. People will be much more understanding.

[daniella]

Hi I can relate and know how lonely it makes this. I have found some people in life will be there and some will not even with all the education in the world. I try to focus on the support I do have and realize the ones who are not there have issues of there own they can't be there for others. It is still hard but a true friend and family are there through good and bad. I have people like mom who will read and educate themselves and some 2 years later who ask me what I have but before that tell me why I am not better cause I am not doing what they feel for treatment. I think that if you can show them what some people rsd looks like with the swelling and color and the pain index being worse then some cancer it may put more of an image in what you are going through.There is also a couple you tube videos that talk about the symptoms and asks the person to imagine the burning like you are on fire or how clothes can feel like torture and that is how rsd people feel and I think that is a good thing for people to see.Simple every day things that many of us can't do like wearing an item of clothing on the rsd area. Often I feel with health problems people don't know what to say when in reality I know for me all I want is a call to say hi and check in. Even a little note means the world. My moms friend made me chicken soup when I first got this and I swear it warmed my heart and made me feel so love. Hang in there