Quote:
Originally Posted by friuli
I saw your video and it looks to me like erythromelalgia (EM), especially since you said it flared up after a shower. The determining question is: are your symptoms relieved when you cool your feet off (by putting them in cool water or in front of a fan)? If the symptoms are triggered by heat and relieved by cold, then it is without a doubt EM. I have those exact same symptoms. I also have tarsal tunnel syndrome in both feet so getting a clear diagnosis has been difficult. One dr suspected CRPS and sent me to the pain mgmt clinic, but I don't believe it is CRPS. I don't have the constant severe pain of CRPS, but there is a lot of overlap with the other symptoms (color, temperature and skin changes). My feet also get colder than normal between EM flares. I've done hundreds of hours of research since this started in June, and to me it seems obvious that the cause is some sort of sympathetic nervous system dysfunction (this causes the vascular symptoms) as well as hyperactivity in the small C-fiber nerves (this lowers the threshold of heat perception). My drs are not familiar with EM so I am having to be my own detective.
Elisabeth
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Hi Elisabeth, thank you very much for your thoughts. My situation does sound quite similar to yours. It is definitely triggered by heat (showering) or increased body temperature from walking or exercising. I haven't actually tried cooling my feet in cold water, but I shall today. Normally I raise my feet above my heart and it settles after 10-20 minutes. I wouldn't say my feet are any colder than normal in between flare-ups. I went to see a pain specialist last week and he seemed to think that it was not CRPS and hadn't heard of EM when I suggested it. He seems to think it could be related osteomyelitis so I'm arranging a bone scan for this week with further blood tests. I don't have any TTS symptoms as far as I'm aware.
The pain specialist I saw was talking about some kind of confused circulatory response linked to this sympathetic nervous system reaction. So really they just don't know right now for sure what's causing it. Hopefully I'll know more soon from these tests.
Out of interest how are they treating your symptoms? I'm just getting off Amitriptylene (thankfully) as that didn't seem to do anything beside prolonging the flare-up time by around 10 minutes and making me drowsy.
Thanks again.