Our athletic and very healthy son developed EM suddenly over a period of about 3 days from just an uncomfortable feeling in his hands to full blown hot, red, swollen and non-stop burning pain in his hands and feet. It was about a week, four different Dr.'s and an emergency room visit before he was diagnosed with EM. He was in constant flare for about 10 weeks straight including a 10 day hospital stay before we started to get a handle on it.
Now that he has been flare up free for over 3 months and counting, the entire experience seems surreal and we go everyday with worry. He has gained all his strength back and is playing football for his high school and doing great.
I know EM is different for everyone. His case was just the hands and feet blazing red with burning pain in the 9 out of 10 range non-stop for two months. Relief only came from applying cold (ice water) and when cold was removed it came back full blast.
What worked for us was applying Preparation-H (old formula with just the vascular constrictor Phenylephrine HCL) to provide pain relief to hands and feet only, avoided cold at all costs, and applied the Amitriptyline/Ketamine cream 4 to 5 times a day (basically never allowing it to dry out). Flare ups stopped within three days of this constant treatment so there was no longer any use of Preparation-H but we continued the Amitriptyline/Ketamine for 5 weeks and then slowly weened to 3 times a day, then 2, then once a day for a few days. I think stopping the Amitriptyline/Ketamine too early can let the condition come back (like a fire almost put out but then rages back if not all the way put out).
At the end of the 5 weeks of this treatment, all the skin on his hands and feet came off in thick large chunks. This seems like it was almost a reboot of the hands and feet skin.
We weaned him off all oral medications (25 pills a day of various types) as none seemed to help anyway. We are very worried but at the same time haven’t seen a sign of EM since 3 days after starting the above routine.
We are so grateful he is better and really hope this can help somebody else even if it is just one person. There seems to be so many different presentations of EM. If you are suffering from just your hands and feet, please give this a shot, there is nothing to lose and so much to gain.
To think of others going through what my son did and us as close family members is heartbreaking. I’m tearing up just writing this. Good luck to all who have this and my family’s thoughts and prayers are with you.
A short forum type paper written when the flares stopped for good and how we got there:
The Amitriptyline and Ketamine cream was compounded from Dollar Drug in Santa Rosa, CA. They say they can ship to CA and Oregon only but are local for us. They were fantastic. Kaiser doesn’t cover it at all and cannot compound it themselves so we had to have our GP call in the order to them and we had to pay out of pocket. It was worth every penny and 1/100th of the other hospital and Dr. costs.
They said the formula is: 1% Amitriptyline, 0.5% Ketamine and a Lipoderm Base. Even though it says on the bottles to apply 1 to 2 times a day we applied generously 4 to 5 times a day – basically didn’t allow it to dry up and made sure not to wash it off. We wanted the skin basically saturated in this cream – it took a lot. Note that hands took 3 days to show improvement and because of added cold the feet took almost 4 weeks and only when we stopped applying cold.
For pain relief and to avoid applying cold, we tried to find an over the counter vasoconstrictor. Preparation-H has many formulas, take a look at Wikipedia and it details nicely. All we were looking for was the original formula. The one we used has only 3 active ingredients: Mineral oil 14%, Petrolatum 74.9% and Phenylephrine HCI 0.25%. It was the Phenylephrine HCI we were after and as it is available over the counter for about $7.99 it was a no brainer – no need to compound this. The package is yellow with a bluish color. Other formulas contain other items but not the vasoconstrictor.
Be careful if you buy the wrong version of Preparation H it might not contain a vasoconstrictor! What was also great about the Prep-H is it lasted for quite a while allowing long term relief and needed sleep.