Erythromelalgia

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7 years 10 months ago #16834 by Mary
Replied by Mary on topic Erythromelalgia
Hi Gigi and welcome to the forum.

It certainly sounds as though you have had a rough year. I guess that having a diagnosis at least enables you to seek out the appropriate treatment etc. Some of these conditions are a pain because of the lack of current knowledge about them. I guess it is one of those things where what works for one person won't necessarily work for another.

Good luck with all of it and it's so great that you have found someone who can help you!

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
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7 years 10 months ago #16849 by Jac78
Replied by Jac78 on topic Erythromelalgia
Hi Gigi,

Thankyou so much for that, im going to send him an email today, We are still struggling with it as the dr's in melbourne still don't know much about EM, im feeling forgotten!! Chloe is on 800mg gabapentin each day and tramadol and endone inbetween if panadol and nurofen don't help, she has also been diagnosed with hypermobility and CRPS (Complex regional pain syndrome) Thankyou again and id love to keep intouch as I only know 2 other ppl in Australia with EM, 1 in oerth and 1 in dubbo. My email is This email address is being protected from spambots. You need JavaScript enabled to view it.

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7 years 10 months ago #16854 by Florrie
Replied by Florrie on topic Erythromelalgia
Welcome to the forum Gigi, I am sorry you have such an awful condition to live with. I am pleased that you now have a diagnosis as it is so hard living without a "label" as such. It is wonderful that you have had a period of remission too and I'm sure that goes a long way into giving you hope for the future.

Jacqui,

It must be ever so difficult for you to watch what your daughter goes through on a daily basis. It is a truly helpless position to be in where medicine fails our children. Poor little thing is certainly on some high levels of drugs to help control her pain and discomfort. I am pleased that Gigi has come along to this group and is sharing her experiences with you. May this help in giving you a small amount of comfort that there is someone else for you to share your experiences with.

Good luck to you all :)

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