Patterns of spreading
 

Hey guys!

I was wondering what pattern you all have experienced with spreading. Mine jumped from one knee to the other without spreading through my whole leg first, and my new neurologist said that was kinda weird. Did y'all's jump body parts or spread continuously?

Thanks in advance!

Mine started in my left foot and then settled into my right foot and ankle with a vengeance.

I had it in both knees first, and it spread from those knees throughout the legs (toes to hips), that's still where it is. In 2008, it suddenly (without a "reason") spread to both my arms (fingers to shoulder). So it did spread through the limbs first before "jumping" to another part.

I would agree - kind of weird, but after all these years I've learned that with CRPS apparently nothing is too weird to actually happen.

Mine started in my left ankle. Then after a lumbar sympathetic block is spread to my back, then up my neck, then shoulders, then down my arms into my hands, and around my front into my torso. Then...later...after getting bumped on my left hip the pain spread there and gradually down that leg until now my whole left leg is in pain. After I had a C Section to have my daughter in 2014...I now also have severe pain in my abdomen. That leaves my right leg and my head above the neck without CRPS. Sort of hopped all over but there was always trauma that started the spread.

Any certain types of trauma? I am a clumsy individual and also do gymnastics. I bump all the time and nothing, but my original injury was a pop in my knee, and I may need surgery in the future.

Mine started in my right foot and ankle and has slowly spread up to my thigh. But I've only had it a year.

The injection into my spine caused spread from the lumbar sympathetic block...the slicing of the nerves for my c-section to deliver my daughter, and the bump on my hip (which was really more of a kick...pretty hard when my boyfriend's nephew was rough housing with him). I've had other bumps and stuff that just caused severe pain...but no spread...of course...many of those have been in areas where I already have the CRPS so it's hard for something to spread to where it already is...lol. But I've had bumps on my right leg that haven't caused spread...I'm guessing it has more to do with the severity of the trauma...but then the bump on my hip was HARD but not particularly severe (not like slicing through nerves). So...I don't know...maybe it's just bizarre like so many other things about this condition...

When I bump a CRPS part or move too much (and I can't handle it), then there's no more spread (where would it spread to, I already have it in 4 limbs) but I get pretty booty-kicking flare-ups. Depends on the "trauma".

Whiteaa,

I am attaching an article on spreading and CRPS that I found interesting. It has been about year since I read it but it had helpful information.

Spreading of complex regional pain syndrome: not a random process

I had mirror pain in my unaffected ankle but no upward spread originally. However as my pain decreased and I made progress that resolved entirely. We had at least one poster in the past mention HBOT, hyperbarics for helping reverse/reduce spread and I have seen research data correlating that.

Remember the key here is plasticity. Take good care of yourself, don't push your limits too hard and reduce pain contributors you can control. It is easy to overdo so I am wondering if your gymnastics routine (though exercise is great) needs to be re-evaluated as you are dealing with this. Also, be sure you are not minimizing any potential injuries or strains that could be contributing.

I hope you feel better soon,
:hug:

Thanks Littlepaw! I'll look more into hyperbarics. It has seemed up to this point that my mirror pain is here to stay. It's so similar I once had to remind myself which was the original pain. It would be awesome if I could find a way to at least prevent further spread.
As for the gymnastics, I've become pro at telling between normal sports pain and CRPS-is-mad pain and I have awesomely understanding coaches who immediately accept when I say I can't do something. I actually think it has helped me manage the pain quite a bit!!! I've used it to gain back so much mobility!

Thank you again so much for this article!

Once you have it the slightest trauma anywhere on the body can cause it to start there or nearby

hi whiteaa. i am so sorry you have rsd and spread. i am so sorry that all of you have rsd and spread. my rsd started in right arm and slowly spread down right leg to left arm to left leg to face to stomach. i get burning, swelling, excessive hair growth on arms and legs, cold, shiny, thin skin. lack of mobility and bone thinning because of rsd. i also get sick more easily. i am a 5 and 1/2 rsd survivor.

Whiteaa,

I am glad the gymnastics are doing you good. I too have had a good response to exercise and feel it has positively impacted my improvement I just have to be careful and still try new things at a greatly reduced pace before slowly increasing the work. I just wanted to make sure you weren't getting carried away ;). I notice for myself that if I have sports aggravation my CRPS symptoms can increase so I just pull back a little till they settle.

Kevscar,

My PM made a point to tell me that if I had trauma or surgery anywhere that my symptoms could come back like they were originally. That is a daunting possibility. Surgery seems especially concerning but other trauma may as Catra said depend on degree and the individual. Recently I knocked the heck outta my affected leg on a pointed metal bar on a bed frame that was sticking out too far. Of course I had to hit it right where the superficial peroneal nerve is most easily dinged near the shin. I had that awful sensation like hitting your funny bone. I bruised badly and had some weird nervy symptoms for about a week. My approach was to rest, elevate, use arnica on the bruise, do gentle stretching, take Vit C and try to keep my stress and worry down. Easier said than done! Thankfully it resolved and I am not having any new pain. :) Funny, I got through that but getting my IV for ketamine makes me nervous every time.

I hope we can all take the knocks life throws us without worsening!