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@lauraj155

@lorirenee1, Lori, I hope you are having less painful days with your feet. Sigh....I feel like I know what’s been going on with my feet more than the doctors do that I have seen so far. I have been trying to figure this out off and on since 2005. I have researched like a mad woman and my gut tells me I have CRPS. I really hope to heck that I am wrong. I have taken pictures of my feet this past week for documentation. Most of the time they feel cold to the touch and hurt the most in cold, damp weather. If I dangle my feet down and leave them in that position for a few minutes they turn a dusky purple color and get very cold. This brings on a lot of nerve pain. I also have pics of when they feel quite warm and turn red and look swollen. This happened 14 years ago when I had a slight ankle sprain and the pain was very disproportionate to what was only a minor injury. Then soon after the pain spread to my left foot. I saw many doctors who all had a different diagnosis and no one could really figure it out. I quit seeking treatment out of frustration and disappointment. My PCP was very kind and tried to get a referral to go to Mayo but of course it was denied by my HMO plan. I just lived with it and gradually through many, many years it got progressively better until this past January when my big toe started getting sore and soon all the crazy nerve, burning and all other symptoms erupted again. My Podiatrist was perplexed because my X-ray of left foot showed slight osteoarthritis and MRI looked pretty normal as well. I see the Neurologist on Friday and I will bring in these pics I took and I hope these will help In getting a definitive diagnosis. Let me know how you have been doing! -Laura

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Replies to "@lorirenee1, Lori, I hope you are having less painful days with your feet. Sigh....I feel like..."

Hi Laura, I just read your message several times, to try to get a clue as to what is wrong with you. I also read about CRPS. One thing that strikes me that you do not have CRPS, is that I do not have a sense that it goes away. I could be wrong. Leaving for years and coming back is unusual for CRPS? Pain spreading from an injury, to an area not injured at all, does sound like it. Pain much more severe than what has happened with the injury itself does sound like it. The change of color in your feet due to weather makes me think you should check for Raynauds Syndrome, although I do not know if there is nerve involvement with Raynauds. I know you can be in intense pain, and that is so awful that my heart goes out to you. I am so glad you are going to the neuro doc. He will run a lot of blood tests and checking auto immunity for sure. Did something happen to you that you think may have triggered the return again? So stinkin' hard. As far as me, I live around my feet. Shoes on, shoes off, licocaine patches, CBD salves and drops, gabapentin, etc. My neuro doc made a compounding cream. Three hundred bucks for an ounce. Not that impressed. It does help my toes feel like they are not being yanked out of their sockets. Always a good thing. But my twenty five dollar salve works as good for the rest of the foot. Feet are decent today. Yesterday, I could have screamed most of the day if I were a nut job. They hurt like hell. Used all ammunition I had. Nothing worked too well. What can I say? FEET RULE. I don't.

Laura, your description of your feet sounds exactly like mine... and I have Erythromelalgia along w/ Raynaud's.. a rather complicated issue when it comes to finding relief from either hot red burning feet to frozen ice cold white ones! My doc didn't really get too concerned about my complaint until one day in his office the right foot took off and got all hot and red.. finally! he acknowledged it..
I've had this problem with my feet for almost 15 years, and was diagnosed only last year.. When they are burning, and they wake me up sometimes during the night even, I sit in the shower and spray them with COLD water.. but when they are icy cold I sit and spray with warm water.. I also find that wearing warm wool over the ankle socks give me considerable pain relief when they feel cold.. Oddly, they may feel like they are burning sometimes, but when I touch with my hands they are cold... so the warm socks make a difference.. Now, too, I found that using Frankincense and Myrrh rubbing oil on them helps immensely with the burning hot feet issue.. I take Cymbalta, Magnesium Citrate, and at night I also take one Benadryl to help me sleep.. I was only recently diagnosed with Diabetes Type 2, so am on Meformin and Pigolatz?? for that.. And always sit with my feet UP... if they are down, they burn and hurt more.. Erythromelalgia seems to be a vascular problem and of course we know what good ole neuropathy is like.. I'm 76 years old and can take it easy nowdays, thank goodness... Oh yes, I ride a stationary bicycle 2 miles every day for exercise.. We do have to figure out what works and doesn't for ourselves, because what helps one person might not help another.. That's why I love MayoConnect.. we offer up our own regimens and can borrow or try with each other.. That's way better than any doctor might be able to do for us.. We can actually educate them sometimes..