My first diagnosis of erythromelalgia (EM) came from an ER doctor at a hospital. I went to the emergency room when I had my initial, very painful flare where I had both EM and Raynauld's happening at the same time. See photo! The doctor literally Googled it and said he thought it was what I had. From there I saw another GP at a regular health clinic who agreed with the diagnosis, though he had never heard of it before and also had to Google it. He referred me to University of Washingon Rheumatology, which was a super disappointing experience, though they confirmed I did not have an autoimmune issue causing the EM and Raynauld's. They looked at my pictures and told me they were "telling." I went to a neurologist who told me she thought I had a severe form of Raynauld's and it was the vasoconstriction that was in turn causing the vasodilation. She prescribed nifedipine which I never took because I was afraid of the side effects. Plus, it actually causes EM in some people and the Mayo clinic doesn't advise prescribing it for EM. So... long story short, it was a general practitioner who gave me the official diagnosis but this was only based on my photos, the discoloration of my feet, and Google. As far as I've heard, most people with this condition are either self-diagnosed or their doctors had to look up their symptoms to diagnose them because they had never seen it before. In my case, it was definitely COVID that caused the damage to my nuerovascular system, and I've heard a number of other viruses can also trigger it, such as Lyme, Herpes viruses, Epstein Barre, etc. I should note that I was also tested for the gene mutation that is associated with Primary EM (inherited) and is was negative. A neurologist requested the lab test for me, and it cost about $250 which I paid out of pocket because insurance won't cover it. Best of luck to you and your wife! I hope she is able to find some answers. I do believe it will resolve once the nervous system heals fully.

Please let us know if the Gabapentin and LDN helps with your wife's symptoms. I was offered Gabapentin as well but I have a fear of most medications and so I'm afraid to take it. I know it helps some but doesnt help others. I'm still hopeful the LDN will eventually help me through this if I give it enough time. I also STRONGLY believe this is a nervous system issue, the nerves were damaged by the virus and/or an immune response to it. Either way, the nerves have to either be healed or retrained. Nerves take a long time to heal, so patience may be what's in order for us all.