# Any new information available?

**URL:** <https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779>\
**Category:** Welcome\
**Created:** [September 29, 2026, 5:08am UTC](https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779 "2026-09-29T05:08:18Z")\
**Posts on this page:** 4\
**Page:** 1

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**Author:** ![Tooyoungforthis](https://avatars.discourse-cdn.com/v4/letter/t/7cd45c/32.png) [@Tooyoungforthis](https://forum.livingwitherythromelalgia.org/u/Tooyoungforthis)\
**Post date:** [September 29, 2026, 5:08am UTC](https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779/1 "2026-09-29T05:08:18Z")

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Hi, new here. I noticed many conversations and information is from several years ago - not too much has been posted recently as far as I can find. Is this the right group, or has another one been made for those of us dealing with Erythromelalgia? Thanks!!

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**Author:** ![Googly\_Eyes](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/googly_eyes/32/3058_2.png) [@Googly\_Eyes](https://forum.livingwitherythromelalgia.org/u/Googly_Eyes)\
**Post date:** [September 30, 2026, 7:34am UTC](https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779/2 "2026-09-30T07:34:42Z")

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Hi tooyoungforthis,

There is sporradic posting here and there. Reading the old posts along with the news and main sections are pretty helpfull. Did you have specific questions you wanted to ask? We are not doctors, but many people have extensive experience with EM and are very wiling to try and help.

Brett-

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**Author:** ![kiwi](https://avatars.discourse-cdn.com/v4/letter/k/e5b9ba/32.png) [@kiwi](https://forum.livingwitherythromelalgia.org/u/kiwi)\
**Post date:** [September 30, 2026, 11:30pm UTC](https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779/3 "2026-09-30T23:30:20Z")

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Hi, yes you are correct. Many people seem to use the Facebook Erythromelalgia group. But as the previous writer has said, many of the older postings are still very relevant. Unfortunately there is still no easy cure and it is often a matter of trial and error over a long period of time. Can you give us more details of your issues please if you are comfortable doing that. All the best, regards Kiwi

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**Author:** ![kiwi](https://avatars.discourse-cdn.com/v4/letter/k/e5b9ba/32.png) [@kiwi](https://forum.livingwitherythromelalgia.org/u/kiwi)\
**Post date:** [September 30, 2026, 11:39pm UTC](https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779/4 "2026-09-30T23:39:40Z")

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Sorry, just saw your description in the patient details. My immediate thoughts are 1/ vitamin b6 can be very harmful for Erythromelalgia and it is easy to overdose as b6 accumulates and can cause neuropathic reactions. 2/ cold water gives great comfort but long term can make the condition worse. Instead consider the hot water treatment. You will see many references to this in other postings so I won’t go into details. It will take a few days to process what you have written so if I think of anything else will let you know. Just got back from the farm and checked my emails. Bit pushed for time today. All the best. You will find a solution, maybe not perfect but better than now.