It definately sounds like Reflex Sympathetic Dystrophy Syndrome, also known as Complex Regional Pain Syndrome (RSDS / CRPS) to me.
See my replies to:
Hoku in the Burning, Excruciating Pain in My Upper Thighs, Hurts to Touch thread
sofa weight in the ice cream headache all over thread
nance77418 in the leg burning thread
Changes in temperature, both hot and cold, are part of this syndrome.
So far, this makes five of us here with this supposedly rare syndrome. You are not alone in your pain.
other things to consider would be Reynauds syndrome, RSD (reflex sympathetic dystrophy, or causalgia). Another thing to try would be a blood pressure patch applied to the lower leg or ankle that would cause vasodilation and increase blood flow and heat to the area. Please keep us posted.
I had a nerve test done in June w/a neurolgist, he found no nerve damage. He does not know what's causing this coldnes and is referring me to Vanderbelt to see if they can help me..It's a long shot, but I have to go see. I doubt they will find anything either. I'm trying to figure out how I can live like this..Not so sure I can for much longer..It's so painful. I have to stay in atleast 85 degrees or above to not aggravate my legs and feet and even then it hurts. It's like my legs and feet are empty inside and there's nothing there that would normally keep a persons legs naturally warm. Who know's. It's a mystery and I can only hope that Vanderbelt can solve it....I have tried Lyrica and Neurontin, didn't help. Used to take Cymbalta (about two months) couldn't stand it..I will let you know what the Doc't at Vanderbelt tell me..I don't know when I go, they said it could be up to two months...
Have you had NCV (nerve conduction velocity) studies done. You may have some sort of nerve impingement due to a disc or vertebrae being tweaked. It's rare that it would happen bilaterally, but it could happen. Maybe you could have a dr. prescribe something for nerve pain (Cymbalta, Lyrica, Neurontin) and see if that takes the symptoms away. Let us know.
Thanks so much for caring and telling me that doc's don't reply. Just to know someone cares really touched me. I know you can't help, but letting me know no doc's are on this forum is appreciated. I have had my circulation checked and it was fin, no diabetis..I'm not a diabetic, so I don't know what caused this, except it's a symptom to RLS..It's not my back, I went to a back surgeion to rule it out and he did. I'm going to see about going to the Univ. of Tn..to see if a doc can help me there...I hope to have an appointment soon..Thank you.
The docs don't check in on this forum - for that, you have post on the "pay for answer" forums. However, if you are diabetic and have these kinds of symptoms, your blood circulation would appear to be greatly compromised. If you aren't getting good answers from your current doctor, then you MUST find another one who will take this problem seriously - as it should be.
Keep doing everything you can to stay moving and walking to keep your blood circulating as best as you can. Great idea with the heating pads for when you aren't moving around. But find another doc FAST!