Fall of 2017 I became very ill with fatigue and tingling in my toes. Blood tests revealed a high ANA, so autoimmune disease was suspected. All markers for autoimmune were negative, but the tingling in toes started to move to feet and then legs from knees down. In 2020 the red, hot burning feet appeared. I diagnosed myself that very day once looking online at pictures of others with the same condition. I showed my doctor pictures of my feet and asked if he thought I had erythromelalgia. He agreed and said nothing could be done except pain management. I do not like drugs but I tried lyrica. Nothing happened. It did not help at all, so I discontinued it.
I later came to the conclusion that this was small fiber neuropathy - again after doing my online searches. I went to a neurologist and told him of my suspicion. He agreed to do a skin biopsy before he could diagnose me with SFN. The biopsy was positive. He thought that maybe ivig could help me. I received monthly infusions for six months. No improvement, so I discontinued that as well. I relate to all who have this dreadful condition.
Like others, I keep the heat low in winter and use air conditioning in summer. I love the winter since I can then walk with my dog for our 2 1/2 mile walk each day (wearing sandals of course). I cannot wear closed shoes. My feet heat up way too fast for that. I dread spring and summer. I feel like a prisoner in my home. Since I have a dog, I have to get out there and push through early morning walks and early evening walks.
Depression sets in as I realize warm weather is coming. My happiest days are cold, windy winter days when I can walk for miles.
I know others go through even worse things in life. I try to be grateful I don't have a systemic disease. Erythromelalgia is not dangerous, but it is life changing.