Is it CRPS if you don't have pain?
 

So, a little background....last June I had a surgery on the posterior tibial nerve right under my knee. It was my 3rd surgery in 8 months and none of these surgeries worked. They suspected I had some sort of nerve entrapment. Anyway, the last surgery in June 2011 left me with complications...complete numbness from the knee to the ankle and half of the bottom of the foot. The doctors said it was due to an irritated sapphenous nerve and it would calm down but may take a year. Well, it has gotten significanly better, but in the meantime I started to experience bouts of splotchy red toes and bottoms of my feet. Mostly on the surgery foot, but at times on the other foot as well. The flare-ups mostly happen if it's hot outside, in the evening after lying down and then getting up again.

When I have the flare-ups my feet are extremely hot and swell, but only slightly. I don't experience any pain with the flare-ups, just discomfort and I really can't stand on them when they are flared up b/c it's uncomfortable. If I soak my feet in cool water or put them in front of the A/C I can get the flare-ups to go away in probably under 2 minutes.

I went to a pain management center to get a sympathetic nerve block but I'm pregnant so they would not do the block. The dr said if he had to make a diagnosis he would say I have a mild case of CRPS. This was based off me telling him about the flare-ups and the fact that the foot that has the flare-ups was about 7 degrees different in temperature (colder) than the other foot.

My long winded question is can I have a mild case of CRPS if I don't have pain?

It's occuring more and more now that it's 90 degrees in Chicago. I can't really go outside without it happening now. :(

I certainly would get multiple opinions from professionals as this condition is widely misunderstood, but you do not need to have all of the classic symptoms in order to have CRPS.

It would be unusual not to have pain and would be interesting to see if anyone else chimes in that has had a similar experience, but some of the other symptoms you describe do fall into the CRPS definition.

I suppose that anything is possible with CRPS...it really is an odd condition. I will say that not having the pain would seem a bit out of the ordinary...as would your getting relief from COOL water or AC (usually cool/cold anything would flare up CRPS). Definitely would be something that I would want to get another opinion on because if it is something else that could be treated then that would be much better.

I have also read that many patients who are pregnant who have CRPS see a reduction in symptoms while they are pregnant...so there is the possibility I guess that your symptoms right now are mild but could get worse later.

There are probably a lot of other things that could be causing your symptoms too...so definitely would be worth getting another opinion. Would hate for you to possibly have something go undiagnosed and then get worse because a doctor shrugged it off as a "mild" case of CRPS.

Thanks for the replies.

Really...I thought cool water made the heat from CRPS go down. I know ice is not recommended, but that has helped me too. Again, almost instantly.

I did have the sx prior to getting pregnant. The bouts were not as frequently, so if anything it's worse now, but I think that is b/c of the warmer temperatures outside not the pregnancy.

Not sure what else it could be? Other than the pain factor, my sx seems to line up with CRPS. I hope it's not that.

What type of doctor should I see? A neurologist? I already visited a pain clinic and got the 'mild CRPS' diagnosis there.

Thanks and my hearts go out to everyone on this board!

Neurologists (to my surprise) are hit and miss on properly diagnosing CRPS.

If you do go to one, do your research and go to one that specializes and has experience in CRPS. Many neurologists have sub-specialties that they practice within.

You could also try a different Pain Management doctor.

The ice can make it feel better (temporarily), but it really is not a good idea. That has been pretty firmly established. Temporary use of ice is one of the treatments of choice for ACUTE, but not CHRONIC pain.

Have you seen Hooshmand's site yet? Some pretty good information on there.

http://rsdrx.com/CRPSABSTRACT.htm

huh.. interesting set of symptoms. they seem to line up(BUT) one of the things about RSD is that it is only a positive dx when all else is exhausted. Now I haven't seen many cases that do not involve pain but yes it is true not all symptoms show up on red patients and pain isn't always 8,9, or ten some are 1-4 with is uncomfortable . I have not heard ever that cold water or ac usage soothed red symptoms though. that is odd. I hope for your sake you can find a dr to take the time to dx you, but treat yu as it is RSD just in case. this is an odd beast so like they said before me anything is possible. i see a neurologist, spine specialist, orthopedic, shrink, pain management and vascular surgeon. I suggest you see a vascular surgeon, neurologist and orthopedic, all of these areas are noticeably affected, on film and by naked eye. good luck. and I pray that it is a more simple issue and one not very serious.

I had knee surgery that resulted in a cold foot and sensitivity to temperature change as a child, which continues to this day. There was seemingly an abnormal amount of pain in the knee for about 8-10 years. No pain in the foot accept that caused by the cold. Some atrophy to my calf and foot, that still exists. I went through nerve testing at the time and was given the option of meds or spinal surgery, both of which I declined.

Fast forward nearly 20 years, and after a couple hand surgeries, I developed RSD.

I've discussed my history with several docs. The consensus seems to be that perhaps I had a predisposition to the syndrome.

If you require surgery in the future, requesting a block right before hand would be a good idea. Avoid elective surgery at all costs. If you can avoid using ice, that's probably a good idea. If you begin experiencing burning pain in any area of your body, treat it like an emergency...and so long as you remain pain free, count your blessings. ;)

painman...thank you so much for the suggestions on which type of doctors to see. Sometimes I feel like I need a medical degree to navigate all this stuff. I actually had podiatrist tell me I know more than many of his students!

LitLove - so can you help me understand the 'block' you are referring to. I most likely will need another surgery in the future as I still have not fixed my original pain that caused me to have the previous 3 surgeries. I likely have a hematoma in my calf as well as possibly a sural nerve entrapment. Anyway, you said I should ask for block before the surgery. Can you elaborate on what that means?

Also, I guess maybe I do have some pain, but it's hard to say b/c my original pain that isn't related to this is so great. It's more of a discomfort but only when the flare-ups happen. And, 100% of the time take it to the bank, if i put my foot in cool water, the red will be gone in under 2 minutes. Same with A/C.

We were in Antigua and the flight there caused major issues and a flare-up. It was quite hot and very humid and every single day I would have a flare-up. If I could hobble to the ocean and get my foot emerged, it was gone almost instantly. Some days I just stayed in the water for hours b/c it was the only time I felt good.

The idea is to use a Block (in my case stellate ganglion, in your's--a lumbar sympathetic, I believe) as a preemptive strategy, directed at the area that will be operated on.

For example, I had additional surgery after the onset of RSD, and I underwent a SGB immediately beforehand. The block worked so well that I thought the surgery had resolved my pain issue, unfortunately that wasn't the case. It made my post surgical recovery very easy. It's impossible to predict if I had not had the block, that I would have exacerbated my RSD and possibly caused spread, but with RSD, it's always better to proceed cautiously. A block is no guarantee that surgery might not make things worse.

Traditional RSD pain is very severe. If you can recall how intense the pain is stubbing a toe? Fortunately, that only lasts seconds. RSD pain is a similar type of intense burning pain, but it is constant, and over a larger area... Before I started on the right meds, I sometimes fantasized about having my arm amputated (not uncommon)...