I am not sure I know how to get a hold of a counselor for rsd in my area. I live in Iowa and there is a lot of people that I talk to that doesn't even know what rsd is. So I guess I am not sure how to even begin knowing how to get a hold of a counselor.

Tracy,

Sorry for butting in here, your questions were kind of directed towards Frogga, but here's my experience.

My RSD started on my right arm, and after it got really bad it took about 9 months to spread full body. A lot of people the RSD doesn't spread, or it just spreads a teeny bit. NO! Do not expect it to spread full body- that does NOT usually happen, okay, sweetie?! I know how fast those thoughts can creep into your mind- and that's rough. Don't think it'll happen, it really isn't the norm!


Maybe you could get a counselor who is experienced in dealing with pain- ask your pain management doctor- sometimes they have programs with a PM Dr and a psychologist who works with pain, as far as I know. You should be able to glean ideas from the RSD/ counseling thread. You *can* get a lot of support from RSD folks on the internet, but if you are going through depression, and not blues, a counselor in addition would be great.

Huge hugs, and don't be expecting the RSD to spread like that. xxxxxxx :hug: :hug:

Spread
 

I am also butting in on a question you had directed toward Frogga. I agree that you DON'T need to expect it to spread. I had mine limited to just my left foot and lower leg for many, many, years (my 20-year anniversary is next month, but I am NOT celebrating) and it will vary between severe and almost gone, and everything in-between.

Only recently has it started to creep to other areas. The one thing that is consistant about RSD/CRPS is that is it inconsistant. Everyone seems to have slightly different experiences. Don't get too concerned about what might happen to you, because it may not happen.

Glad you found this support community. I am sure glad I did! Welcome. :hug:

Mike

I want to thank everyone for their input on this disease. And none of you are butting in. I am very glad to get everyones input on my questions. I am still so emotional some days worse than others. I also guess it is because I use to be able to go out and do what I wanted and now I am so limited. Sometimes I do push myself further than what I should, but I am stubborn that way sometimes. I want to have my old life back, but I know it will never happen. Again thank you all for your support. This is actually the first time since I have had this disease that I have been able to talk about it and you understand. Thank you all!

Tracy

Tracy,
I'm a little late in my welcome, but I wanted to welcome you anyway. This is the best group of people. I've had rsd for about 3 years, and have only been treated for about 2 1/2 months. There have been and are days when I don't do anything but sleep. other days, I can do some things before I have to quit. Everyone is different, and rsd isn't just a set of symptoms. It is the strangest thing, and it is so very hard for other people to understand what we are going thru.
Mary

I'm new to this too...
 

:hug: :) Hey... I know exactly what you mean.. for starters... I am new to all this too, but thought I would see who might be out here too. I have had RSD for 4 years, now it is all over my body. I truly understand what you feel. Just remember that there are many people out here that know what you are going through. Just reach out when you need someone...

take care...

Heya Tracy,

Welcome! I just wanted to say that full body RSD is very rare, there are very few people on N/T that have full body and I know very few people with it. I developed full body over the course of 6 months - in fact almost all of the spreads happened whilst I was in hospital anyway! (the drs did love it though - because they got to observe me as it spread). However, that is digressing. There are many people on here who have had almost no spread since developing RSD - I guess, as someone said, the only predictable thing about RSD is that it's not predictable!!

Love

Frogga xxxxxxx

Hi Tracey,
Welcome. You have come to the right place. Everyone here is so nice. Before I found this site, I felt very lost and alone. I have had RSD since 1999. So far just in my fight leg. Coming here has helped me in alot of ways. People here understand me and when iam feeling really bad I just come on here and I feel better right away. RSD is hard to deal with. Only here will you find true friends.

Sue K.

I know you asked frogga this however I would like to respond. Everyone is different. I have had mine (in my right knee) since 12/2006. It has (July 3-4) spread to my hip. I went in to Urgent Care and the doctor informed me that it is not uncommon to have it start in one spot on a limb and have it spread to the entire limb. I hear often about how people have it for years and are full body and others who are still in one location. I guess there is no guessing. LOL