is it spreading?
 

I've had various drs tell me that if there's not temp and color changes its not spreading. But I'm skeptical. This all started in my r toes after ankle fracture + surgery in aug. Now I have pain in r hand , wrist, bicep, shoulder. Not bad at rest but if I soi much as text or use right hand to hold phone its very uncomfortable. Will try to write more later.

I believe there is disagreement among doctors on this subject. It probably also depends on where they trained and how much experience they have actually had with CRPS patients. I can tell you that I was diagnosed with "spread" without any temp or color changes. My doctor suspected that the pain was CRPS spread but I was in denial. I actually had x-rays and other tests to make sure that I didn't have arthritis or any other problem that could be causing the pain. I get ketamine infusions and when I went for an infusion it took care of the pain. Fortunately, the infusions help keep things under control.

If the pain continues, you should probably consider tests to find any possible causes. You would not want to miss something that could be easily treated. You can have CRPS and another problem as well.

Good luck.

Shay

When mine spread it was the same burning pain and sensitivity to touch...but a lot of the other symptoms came and went and were not as severe as the initial location of the CRPS. Part of that I think is that I knew what to do for it and was getting treatment for CRPS already. For example...I feel like my initial site of CRPS progressed worse, faster because they had me treating with ice and doing other things that just were not helping and actually make me worse. When it was spreading...I was more knowledgeable and knew not to ice and all that.

Even still...I had so many tests done and saw so many doctors to confirm that it was in fact CRPS spread...because there were other things that were affecting me as well that were contributing to problems I was having (seratonin syndrome being the big one from my meds). It's very easy for us and for some doctors to just say, "It's spreading." But really there could be other stuff going on so you never just want to take for granted that all new problems are related to CRPS...because they could be treatable and easily fixed.

I hope you find the answer soon. Take care and keep us posted.

Catra, this is pretty much my exact situation. I am currently experiencing what I think is a "mirror image spread" from my right foot to my left foot. Almost the exact same affected area. Because I have recognized the potential for spread early, I am hitting it with everything I know and the symptoms are not as severe as my initial CRPS diagnosis in 2008, when I was told to immobilize the joint, use ice, etc. But I am seeing the discoloration and temp changes and burning pain. I've been documenting all of this along with a pain journal for my dreaded appt. with my primary CRPS doctor.

To Haywired, this dang condition of CRPS truly has a mind of its own and everybody has a slightly different story to tell. I believe that it is one of the most misunderstood conditions of the human body, even by health care professionals. Best of luck to you in figuring it out. We with CRPS are of course nervous of any potential spread to be sure, but not every malady/symptom that we experience is indicative of CRPS spread, many things can seem like spread, but they are not. So be methodical about it, get good care and do not hesitate to get multiple opinions if you feel necessary. Stay on it until you get the answer that is correct and the one you agree with and that you deserve. We are our own best (and often only) health care advocate!

My rsd has spread with various symptoms with and without color and temp changes. Not all drs agree on spread but the in my experience the dr who told me it can spread with and without color and temp changes is the one I believe. Hope you feel better soon.

Hi Birchlake-
Spreading is controversial for MDs. But I've learned one thing to share here. When spreading it can be the neurons being "confused" for lack of a better word. So when I have pain in my foot and it's completely healed from the surgery, it's still acting like it needs to protect my foot from injury. I've have my my Armand "good leg" get caught up in the confusion and start being painful and burning. My PT has me stepping on two pieces of different colored paper in front of a mirror while watching and saying left- right to get my brain reprogrammed to not accept the burning in the previously good foot. So far it's been working.
I'm hoping your days are better soon!
Hotfoot53

When mine spread it just crawled up my leg with no discoloration or swelling. But the pain, burning, stinging, etc. was the same. The calf did get thinner than the other leg, and have the temp change, so we had some clinical change. The whole leg became super sensitive to any pressure, certain fabrics (no jeans...) and my lower leg can't handle flapping pants.
My right foot is the affected foot and my left foot randomly got the CRPS rash. But is otherwise fine. That was weird.

Hi Becca-
I'm sorry that yours spread. It seems to be such a random condition. If it's okay to ask, how long did it take to move up your leg and the rash to be on your left foot? (Please feel free to not reply-I understand it's personal). I noticed your join date here was pretty recent and I joined recently also. Take care, Hotfoot

Mine spread, with the vice-like feel, the bad shoulders, the ice-cold sensation up one arm, the heat in the other arm and the heat up half of one arm (that had started going cold). My doctor started me on treatment right away (calcitonin), and thank God for that. I have to keep with the treatment otherwise it does creep back in.

Wow CRPSbe, three years without knowing what it was sounds nearly as tough as it spreading! That must have been so difficult for you. I'm glad your doc is on it and treating it well now. Best, Hotfoot53

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!!!