I wanted to update this thread and say that I spoke to a couple of people who have RSD and one said he had burning foot syndrome symptoms for 1 year and then it resolved. The other said they had RSD or CRPS type 1 which is the new technical name for it. But he used the older term of RSD. And when I mentioned that a lot of people with CRPS/RSD say they may have burning feet for a year, he said he’s had burning feet and RSD symptoms for 8 years. This second person I talked with who had RSD had the onset after surgery and the removal of a nerve in his spine.
So it seems that according to some that I have chatted with and obviously posts here, that a person can have burning foot syndrome like symptoms from CRPS/RSD. As there are many kind of nerve damage that can cause EM or burning feet flares, one can have it as a part of another disease and that may change the way you deal with the symptoms. With RSD according to one video on youtube by a doctor who has treated it, advanced treatments for some cases of CRPS may treat glial cell over-activity.
That may be different than treatments that help other EM suffering patients deal with the pain.
Generally speaking the more rare and perhaps “pure” forms of EM are responsive to cold water immersion or chilling of the feet in some way. And they will almost always get worse symptoms when the feet are being warmed up. And it’s usually something that happens on both sides in the case of EM and happens to both limbs at the same time during onset. With CRPS the problem may start on one side, that is injured, and then be mirrored to the other side, and symptoms can move all over. Also mobility is often effected. I can’t speak for all the other EM suffering patients and the EM symptoms could be secondary or related to other types of damage. But in my mom’s case her EM didn’t affect her ability to walk or use her feet, in other words her nerves were not causing her feet to move in such a way that she lost control or function, it was pain that stops her from walking. As she doesn’t walk as much to avoid pain, natural lack of endurance and weakness result, but it’s not an attack on the sympathetic nerves causing her feet to turn in or something that we might see in a bad case of RSD. Her ability to walk or move or use her feet was hampered from lack of use, but not the signals being sent as far as we can tell.
More recently in her case, but this should be a subject to a different post, some medications may have helped hamper her ability to walk and have balance. Maybe she has some CRPS like symptoms mixed with her disease, but her case like many others here is strange and perhaps very unique. These were likely side effects of treatments, and could be other declines in her health.
With RSD the decline of the ability or flexibility of the feet to move may happen if the RSD is affecting your feet for example. You may not only see pain, but lack of functioning, which is a sign it’s something more than a “pure” EM issue. This leads me to speculate with others that the EM you’re experiencing or burning symptoms is secondary to some kind of CRPS like issue.
As many could have more than one disease and more that one type of nerve damage, it’s difficult to give a full explanation and it’s easy to see that most posts are limited by our own experiences. And doctors can be baffled of course by these rare diseases.
It sounds more like a burning foot like symptom from CRPS to me as well. But this is just a guess from a caretaker of someone who has EM, not a medical opinion.