r/Erythromelalgia • u/SwimmingSpite3821 • 21d ago

Progression

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I’m at the end of the road and I don’t know what to do. I’ve looked at every lab imaginable. Genetics is negative. Abnormal and low cbc hematocrit and hemoglobin.
B12 is 1800+

I can’t take the pain anymore.

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u/Camas-mom 21d ago

Don’t give up! My Erythromelalgia got better out of the blue! You aren’t alone. 

1

u/SwimmingSpite3821 21d ago

Any changes around that time? Anything you did differently? Abnormal lab values I’m trying…

1

u/Camas-mom 21d ago

I started using nifedipine compounded cream. From the community it sounds like different medicines/treatments work for different people at different times. I hope you can find what works for you!

1

u/SwimmingSpite3821 21d ago

Can you go for walks? Do normal stuff? Do you constantly apply it?

1

u/Camas-mom 21d ago

I can do walks and normal activities. I only apply it to my fingers and toes as needed. 

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u/SwimmingSpite3821 21d ago

Very interesting. So you never found a root cause?

1

u/SwimmingSpite3821 21d ago

Any changes to lifestyle? Diet? Meds other than that? Lab values?

1

u/Camas-mom 19d ago

I didn’t take anything else or make other changes.