I have had one doctor and one nurse tell me that given my symptoms ( level 1 pain) and earlier treatment ( 110 days) their is a good chance my crps won't spread.

However I can't pin down a statically sound estimate of spreading in any circumstance. Is their a resource that might be of help in understanding this aspect?

As an example of confusing and contradicting material. **
In other places I read about studies where the spread was around 50%. Yet other sources casually (no sources) proclaim that "CRPS generally is limited to one limb"

Given I have crps in my toe, was diagnosed with it 110 days in, is their any way for me to get a likelihood it will spread in my lifetime?

Links to resources and studies welcome. Thanks for your support.

I don't think there is anyway to predict possible future spread or not.

A second bump, surgery or injury could possibly activate or aggravate a spread.
Then again it may not happen at all.

I agree with this statement, and I would add that perhaps even a major life stress could cause spread. I went years before I experienced spread. I even had surgery on the original limb (knee) without spread, and then years later slowly the progression started.

With others spread is more rapid, or on the other hand, nonexistent. It's crazy. It is my understanding that the incidence of spread is rather low. So perhaps there is some sort of good news.

Try not to marinate on the idea of spread. Perhaps it will never happen.

The others are correct. There is no way to predict if or when spread will happen. I went for 16 years with it located only in the right side of my face. New injuries brought on spread and progression. Some experience a lot of spread, like me, and even full body and some experience no spread at all.

And yes, early treatment is very important!!

Wishing you the best!
Nanc

The best source I can find on spreading (though aimed at type 1 crps) is called the 2014-outcome-crps-type1-systematic-review. It seems to be a review of over 1500 papers on the subject, which are then filtered on quality measures. I plan on reading it more, but what i'm gathering is that their are likely sub-categories of CRPS. Or at least thats the only way I can rationalize information like the following from that study:


However, the estimations on spread, remission, pain-increase, etc... paint a much better picture then those posted by a lot of other sources and with a lot more weight.

Just be a bit careful using this as a source of information and read it with the health warning it requires. The study only looked at 18 previous research studies and if you read it you will find there were lots of problems with the studies they reviewed as well as bias in 4 of them. In fact, the conclusion even says:

"Overall, the quality of the evidence was poor, and the data should be interpreted with caution"

Anyone just reading the abstract would have little idea of the limitations because it's not unusual for an abstract in a research paper to be mismatched with the actual conclusions and findings of the study itself.

Harry, I can relate to you as I have CRPS in my big toe as well.

There is absolutely NO way to determine if yours or mine will spread. None. I trust no studies as there is nothing that really has meaningful scientific significance. There are not enough of us with CRPS to justify big money and long term studies. Sorry to all of us.

My CRPS started in 2009 after a toe surgery. I have been able to manage it with a med cocktail (gabapentin, amatriptyline, naproxen). I started with percocet, but that became a dead end for me with many side effects, so I weaned myself off of it. That wasn't fun!!!

I have a religious daily management strategy that includes a warm (not hot) soak of the toe, (I actually soak my whole body in the tub) stretches to keep the toe limber, full lower body stretches prescribed by my physical therapist, some yoga (don't laugh) and some meditation. Not done yet. Along with the above, there is occasional chiropractic and massage because my walking gait has been altered because of the pain in the toe and it now affects my hip. I need a knee replacement on my other leg, but because of the possibility of CRPS spread, I'm postponing that as long as I possibly can.

I researched CRPS until the cows came home (they never did). I am a huge fan of internet research and there is some very good information out there, but what I found is that you can get to a point of "paralysis by analysis". Research is good and very important as knowledge is power, but you can get overwhelmed by it and addicted to it. Don't go to that place; it will make you crazy.

Find what works for you (it varies tremendously) do it religiously and cross your fingers. CRPS is best managed with a "multi-disciplinary" strategy. Don't rely on just meds; that is a dead end road. Be sure the professionals you work with are familiar with CRPS. Ask them point blank. If they aren't familiar, be on your way.

Those of us with CRPS just never know when the other shoe will fall. Just hope it doesn't. For some, it doesn't. If you need surgery, be damn sure you NEED it. Get multiple opinions as surgery (or trauma of any kind) can spread CRPS. And if you do need surgery, have consults with doctors and anesthesiologists who can help you keep you central and sympathetic nervous systems calm (nerve blocks, etc). while you have that surgery.

Good luck and keep us updated! We toe guys have to stick together!

Thanks birchlake & everyone else,

One CRPS specialist said he wanted to try pain reliving patches for two weeks to see how they did. He said i don't meet all the symptoms of CRPS. I had another appointment the next day with another specialist and he diagnosed it as CRPS and recommended the Lumber nerve block + some medication. I'm going to wait out the two weeks and see how things develop. about 95% confident it is CRPS but the good news is that while spreading seems a matter of time, they have really good confidence the pain wont increase. As the pain is almost non-existent at the moment, this is something to be thankful for.

Hello Harry,

I would hold on to hope that it is not CRPS given the fact that it has improved over the last few months and as you just stated above that pain is non-existent that is unusual for CRPS as the most prominent symptom is pain and increasing pain. Honestly, from my internet based opinion on what you have written that it seem less likely for it to be CRPS.

Hoping for the best,
Tessa

Thanks for the kind words zookester,

I'm holding on to that hope. I'm also kindling the hope that even if its CRPS, that my outlook looks comparatively good.