Recently Diagnosed with Erythro.. csomething an't even spell it yet!

Hello New Friends,

I am so thankful to have discovered you and this website! I was recently dx'd w/EM as symptoms came on as I was training for the NYC marathon. A little history- I was diagnosed w/Systemic Scleroderma (another rare disease aren't I lucky :)) and Raynaud's almost 12 years ago. I've been on antibiotic therapy for almost that long and it's literally been a life saver- I'm doing just great even though my prognosis was very grim. While training for the marathon- it's my first and I'm 53!- as my mileage increased to approx 12 miles, my feet started burning like fire- incredibly painful. I have experienced numbness in my feet for years, mostly when running on a treadmill or if my shoes don't fit well, but I've never had the burning. I thought the numbness was part of the SD and Raynaud's. I know that EM causes the burning sensation but does it also cause the numbness? The numbness comes first, then the burning. I recently completed 21 miles, and half way through I really couldn't feel anything from the ankle down. The burning started at about mile 12. I know I don't have to tell you guys that it was just awful. I tried loosening my laces, removing my socks, removing the insoles (not wise!)- nothing helped but stopping. I have two more long runs 21 miles plus, before the marathon and I'm going to complete those come hell or high water. Please give me your advice and insights I am so very grateful!!

Judy

All I can say is WOW…! I know how hard pushing through the pain of EM is, I did a 4 hour charity spin, I was not allowed to ease off at any point so took tremendous determination. It sounds to me like you have a massive amount of determination. I know one lady who did a marathon with EM wore sandals, a friend of mine (and fitness instructor) wears a pair of nike trainers which are very open, in between trainers and sandals, maybe you could see if they are suitable for running. I stopped running about a year ago because of the numbness I was getting left me feeling scared of falling off the treadmill and stopped road running because it made my chronic widespread pain worse. (one dr said it was fibromyalgia whereas another said chronic widespread pain disorder). Are you doing this for charity…? It would be good to get some media coverage if you felt up to it because I have only heard of one other person being able to run a marathon with EM. This would also get some info out there about erythromelalgia. I wish you huge amounts of luck and would love to hear how your journey goes.

Thanks so much for your response. This is all so new to me so frankly I don't know what to expect. I didn't know I had EM before training for the marathon. I am hoping the cooler temperatures in New York come November will help. I live in Southern California now and it's been sweltering. I am currently fund raising for The Road Back Foundation that was so helpful to me battling Systemic Scleroderma. Once I learn more about EM and how to get a handle on it I will definately be up to fundraising. Thanks for the tips about running shoes - I am currently experimenting with different shoes. Right now I'm trying Mizuno Wave Rider 15. It's getting expensive :)! At the moment I can run for an hour or so on the treadmill without burning, just numbness - the numbness I can take until it takes over my entire feet. The burning seems to kick in about mile 10. I know I'm very fortunate to be able to run up to that point, esp with what other folks are experiencing. I too am fearful of falling on the long runs. All the best to you and I'll keep you posted!

lauraflora1 said:

All I can say is WOW...! I know how hard pushing through the pain of EM is, I did a 4 hour charity spin, I was not allowed to ease off at any point so took tremendous determination. It sounds to me like you have a massive amount of determination. I know one lady who did a marathon with EM wore sandals, a friend of mine (and fitness instructor) wears a pair of nike trainers which are very open, in between trainers and sandals, maybe you could see if they are suitable for running. I stopped running about a year ago because of the numbness I was getting left me feeling scared of falling off the treadmill and stopped road running because it made my chronic widespread pain worse. (one dr said it was fibromyalgia whereas another said chronic widespread pain disorder). Are you doing this for charity...? It would be good to get some media coverage if you felt up to it because I have only heard of one other person being able to run a marathon with EM. This would also get some info out there about erythromelalgia. I wish you huge amounts of luck and would love to hear how your journey goes.

Here is what I learned after being diagnosed 15 years after getting the condition. DO NOT expose the affected area to extream cold, this causes more flare ups. For me, if I elevate my hands or feet until they go numb and then wait another few minutes, this allows all the blood to drain and stops the flare up. Sleeping with a bed fan really helps. I also take gabapentin-this works within an hour or two and is amazing! I take 800mg 3 times a day. Capsicin cream was absolutly aweful! after using it as directed for 3 weeks, my feet constently felt like they were on fire. I could not walk without wanting to cry.

Also, if you have a flare up it will not go away on it's own. You have to remove whatever is irritating it.

Finally, I have CLIMACOOL shoes from adidas. I also have the most breathable sox you can get. they have ventalation holes on the top and bottom. these shoes have really helped. I have never seen so much ventilation before.

If you go to You Tube and enter Erythromelalgia and then Kate Conkllin's ESPN Erythromelalgia video- High Res this will show you about another EM patient who ran a marathon. It might give you some tips that would help you. She also has a facebook page and I am sure if you friended her and sent her a message explaining your situation she would be happy to chat with you. I hope this helps you some.

Your new friend, Tollie Esslinger Godwin

Tollie great reccomendation. I don’t know Kate personally but it sounds like some members if the group do. I COULDN’T imagine doing any tyoe of running. I think My feet would just fall off. I have Raynouds as well and probably some other undeelying issue. Wow, you are admirable I am 52in and have always been athletic…just not a runned. Since the EM toom hokd I feel so limited. Some days the moment my feet hit the floor the turn beight red and throb, other days…they go numb.

Thank you so much - great recommendations and helpful tips!!