In those "almost" 3 years (1995-1998), it spread from knee to full legs + feet. It was too late to do anything.

Then after a number of years, in 2008 exactly it spread to my arms + hands. So yes, it does spread throughout the body, especially if it was left untreated a while.

Thankfully my doctor was "on it" when it spread to my arms. Before that other doctors weren't as... fast.

Sad, I know.

Hi CRPSbe,
My heart goes out to you! There was so little known during the time that this started for you-- Now there is more awareness, hope and management techniques. You are clearly a resilient person with a strong spirit. I'm so glad they figured out enough to help you maintain your arm in okay position and provide you a quality of movement that allows you to do things. Praying you have more pain free days-- Hotfoot53

Thanks so much! Means a lot to me.

It's both my arms that it spread to, especially the right. The right one was turning cold already. Thank goodness the medication (calcitonin) is the greatest thing since sliced bread for those arms, but I had to be patient (it took longer than the foreseen 3 month period). It really and truly helps, if you are patient enough with it (not for my legs unfortunately).

They are phasing the medication out of treatment plans more and more, I hear, though. Especially in university hospitals. But there aren't many alternatives for it, so they're basically stuck.

I noticed they aren't using it much also- although I read somewhere that they did if bone loss was noticed. I have to ask my doc about that because I do have bone loss in my affected foot, but no one has said anything about doing anything. I pretty much forgot about it until I saw your post. So thank you for the reminder 😊 We are our strongest advocates.
You are on it for pain relief or more for blood flow? I admit I don't know much about it. I have to do some research I just haven't been able to do much lately.
I'm glad that it's working for you even though it took longer to work.
I continue to pray for less pain for you (and everyone reading these threads because I believe prayer can bring relief in many ways)
Hotfoot

You're welcome. I did get a serious round of bisphosponates when it was finally diagnosed in my legs (back in the day) - but neither the calcitonin nor the bisphosphonates did anything for the RSD there.

My arms, though, are different, and they respond well (thank God).

Thank God is right! And thank you for the additional info for when I see my MD
Wishing you a lower pain day!
HF

Wishing the same for you. Good luck on your doctor's visit! :)

Best wishes, hay wired. I'm on the edge of worrying about a spread too as I've been feeling some symptoms in my hand for the last several months. It's been just over three years for me and it's not uncommon for this to happen sadly. CRPSbe, you have an amazing story. Keep trooping! Never stop looking :D

Thanks so much for saying that! 21 years with this, come September 22. It's not been easy, I can tell you that much!!!