My 14 your old daughter has been selected for erythromelalgia research study. We are hoping to get some news just know if it is truly genetic which our doctor thinks it is. She has not had much success on the cabapentin or cympalata. The cympalata has helped with the emotional stress that has impacted her world. She an all around athlete and has a chance to make varsity as a 9th grader next year. We worry about the limitations that this disease has had on her training as an athlete. It breaks our hearts as her parents to see her in so much pain.
I am so sorry to hear about your daughter. That is heartbreaking. How long has she had EM? Has she tried other treatments? I am sorry if I sound ignorant but what sport does she play? How is she doing? Is she still able to play but in pain when she is done or does she have to quit before she is done? Do you live in a warm environment? Is her EM in her hands? feet? elsewhere?
I don't know if this will help but it may be worth a try depending on the sport she plays.
I used to be a flight attendant and when I worked I couldn't even sit in the crew room or airplane ( typical room temperatures) without terrible flares. I bought a cooling vest like those construction workers wear in hot conditions. It is just an absorbent zip up vest that you get wet and wear under your clothes. This worked well enough I could sit in those temps OK but unfortunately not well enough that I could be active ( walk ,bend ,lift ) and I was wet all day!! I ended up having to leave my job.
If hers isn't as severe It could help and she would only be wearing it for as long as she was playing not for a 12 hour shift!!! Like I said it did make a noticeable difference for me.
I hope this helps. Please keep us posted on how she is doing and ask as many questions as you can think of that may be of help to her.
Take care,
Alina
Dear Melody,
When I read this I thought about this article I saw a few weeks back. It is a powerful article and IF you think your daughter can handle this - maybe reading it with you or a therapist- It may show her that with determination and drive, you do not have to be limited by this disease.
I hope that reading about this young athlete who still plays her hockey despite EM will give you and tour daughter HOPE
See below my name for the link,
Love,
Jordy
She EM on her feet but she just has had a couple if episodes of her face recentelyb. Since about the age of 8 she always complained that she felt like the insides where burning. I took her to the dr but they said she was fine. About 1 1/2 ago she started complaint of feet burning while playing volleyball. Her flare ups became very intense a few times while playing basketball . She had one so bad that I pulled up To the Er because I had never seen her like in so much pain. Then we saw it once track season hit and every time she ran the 400 meter relay and she was the anchor she would run her heart out and just fall across the finish line because she could not walk on her feet. She ran every meet like this even though she knew the consequences. It hurt but she is trooper. We just was diagnosed officially this past march. So she just started medication. We live in south Texas so it gets about 115 sometimes .
Alina Delp said:
I am so sorry to hear about your daughter. That is heartbreaking. How long has she had EM? Has she tried other treatments? I am sorry if I sound ignorant but what sport does she play? How is she doing? Is she still able to play but in pain when she is done or does she have to quit before she is done? Do you live in a warm environment? Is her EM in her hands? feet? elsewhere?
I don’t know if this will help but it may be worth a try depending on the sport she plays.
I used to be a flight attendant and when I worked I couldn’t even sit in the crew room or airplane ( typical room temperatures) without terrible flares. I bought a cooling vest like those construction workers wear in hot conditions. It is just an absorbent zip up vest that you get wet and wear under your clothes. This worked well enough I could sit in those temps OK but unfortunately not well enough that I could be active ( walk ,bend ,lift ) and I was wet all day!! I ended up having to leave my job.
If hers isn’t as severe It could help and she would only be wearing it for as long as she was playing not for a 12 hour shift!!! Like I said it did make a noticeable difference for me.
I hope this helps. Please keep us posted on how she is doing and ask as many questions as you can think of that may be of help to her.
Take care,
Alina
Thank you so much for the article it reminds me so much of her determination just keep playing! That’s what gets her through things. The emotional part for an active kids is terrible. She went through depression period since January. Dr put her on cympalata and that has taken the edge off her. She just gets frustrated because everyone in school ask questions about her feet and she has has always been a private kid. We have already scheduled therapy for her.
Jordy516 said:
Dear Melody,
When I read this I thought about this article I saw a few weeks back. It is a powerful article and IF you think your daughter can handle this - maybe reading it with you or a therapist- It may show her that with determination and drive, you do not have to be limited by this disease.I hope that reading about this young athlete who still plays her hockey despite EM will give you and tour daughter HOPE
See below my name for the link,
Love,
Jordy
http://highschoolsports.mlive.com/news/article/-558853473155189998/…