Hello, I am brand new to this site & am sooo happy that this exists! I have had RSD/CRPS for three years this month. I JUST found out yesterday{12/3/13}, that this vicious monster has a name. All this time, 3 years, no one{not ONE of my many specialists} has been able to pinpoint my "problem". I was watching a segment on Inside Edition* about a young boy {who's father works for the program}who has suffered with CRPS for years. When his symptoms were listed, I immediately burst into tears, I could not believe that he was describing me!
I swear I didn't even know that there were others out there that felt this specific type of pain, that KNEW what I had been going through for 3 years! Thank God that I watched that program...I have NEVER watched it before! I was simply "channel surfing", trying to lull myself to sleep. I phoned my primary docs office this morn with the message "I finally KNOW what this monster in my leg is!"

Hi Kate,

I just joined this group as well. I've been doing a lot of online searching and this is listed as one of the most helpful forum for people experiencing CRPS. I think it's really difficult to get an accurate diagnosis and then to actually find people that understand what you're dealing with...and that doesn't even factor in the pain and things that this can take away from us and our lives. Anyway, welcome and good luck!

Hello Kate, and welcome! We sure wish you didn't have to be here but it's a wonderfully supportive place with many wonderful people. I'm so glad you surfed to the right channel and found out the name of the monster! It's really frustrating to have something so wrong with you and not know what's going on. Many RSD patients go to many, many doctors before finding out what's up.

Look around the board - there are many helpful threads, and feel free to vent away if you're feeling the need to vent - we understand

Hi Kate,

Sorry you have to be here but ... Welcome! I have had CRPS for one year...actually coming up on my unlucky anniversary pretty soon. The people here are terrific.

Thank you for calling my attention to the Inside Edition piece.

Links:

http://www.insideedition.com/videos/...ition-reporter

http://www.insideedition.com/videos/...crps-condition



Kim

Welcome Kate and nirvnagrrrl! So sorry that you are both dealing with this monster. This is a great site for sure! You will find so much support and info here.

When did that Inside Edition episode air? I missed it, but just saw something on Facebook about it today. Anyway, I have had RSD/CRPS for almost 23 years now

Nanc

Just wanted to thank you for those sites..I watched with tears..God Bless us All

Welcome to both of you!! I'm so sorry that you are both dealing with this condition but am happy that you have found this site. It has been a real life saver the past 4 years for me and I don't know where I would be if I hadn't found this site. I do know that if I hadn't found it and the people here...my life would be very different and I would probably be a lot more miserable than I am now. Thanks to the support of people here and the great information they have given me...life is pretty good (all things considered) and I have been able to make the most of things and take back some control over my life.

Please feel free to ask questions, vent, etc here. Everyone is very supportive and helpful. We all have different symptoms (though many are the same) and we all respond to different treatments...but there is just so much to be learned from everyone's experience here. I know it makes a huge difference for me just knowing there are people out there who know what I am going through. Family and friends and doctors may sympathize and be supportive...but there is no way for them to truly KNOW what we deal with day in and day out with this monster.

Hi Kate and nirv welcome both of you, although as always it's also a bit sad to see new faces diagnosed with this horrible disease... I hope you are both doing ok today, and it'll be good to get information and tips from both of you! This is a fab forum to learn from, and it's saved me from a few bleak times. This forum IS the old adage "a trouble shared is a trouble halved"...

Bram

The common denominator for many....years to acquire a diagnoses. I wonder if stonewalling is involved by the medical/insurance industry. It took my wife nearly 4 years for a firm diagnoses. It is a relatively rare disease, but is it that rare where doctors just seem clueless for years? I don't buy it. Two docs mumbled the name RSD and dismissed my wife before she received that firm diagnoses. Kate, I hope things now go smoother for you.