# Welcome **URL:** https://forum.livingwitherythromelalgia.org/c/welcome/22.md [Latest](https://forum.livingwitherythromelalgia.org/latest.md) · [Categories](https://forum.livingwitherythromelalgia.org/categories.md) · [Tags](https://forum.livingwitherythromelalgia.org/tags.md) --- ## [Site Etiquette for LivingWithErythromelalgia](https://forum.livingwitherythromelalgia.org/t/site-etiquette-for-livingwitherythromelalgia/1686)
**Author:** [@Madere\_dancermom](https://forum.livingwitherythromelalgia.org/u/Madere_dancermom)\ **Replies:** 0\ **Last updated:** [May 17, 2015, 6:08pm UTC](https://forum.livingwitherythromelalgia.org/t/site-etiquette-for-livingwitherythromelalgia/1686 "2015-05-17T18:08:13Z")
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, and mutual support. Members come from many backgrounds. Some have a… --- ## [Welcome To Our New Discourse Site](https://forum.livingwitherythromelalgia.org/t/welcome-to-our-new-discourse-site/1873)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 5\ **Last updated:** [September 22, 2016, 2:18pm UTC](https://forum.livingwitherythromelalgia.org/t/welcome-to-our-new-discourse-site/1873 "2016-09-22T14:18:42Z")
Were you a member of our old Living With Erythromelalgia - Online Support Group site? Simply LOG IN with your email and click on "Forgot password". We will send you a link to claim your old profile. First time visitor?… --- ## [About the Welcome category](https://forum.livingwitherythromelalgia.org/t/about-the-welcome-category/1694)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0
Erythromelalgia (EM) is a rare neurovascular pain disorder that can cause redness and pain in all parts of the body, but most frequently the extremities, such as the hands and feet. It is characterized by intense burning… --- ## [Any new information available?](https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779)
**Author:** [@Tooyoungforthis](https://forum.livingwitherythromelalgia.org/u/Tooyoungforthis)\ **Replies:** 3\ **Last updated:** [September 30, 2026, 11:39pm UTC](https://forum.livingwitherythromelalgia.org/t/any-new-information-available/6779 "2026-09-30T23:39:40Z")
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 d… --- ## [NEED DR. Referral in AZ PLZ THX U!](https://forum.livingwitherythromelalgia.org/t/need-dr-referral-in-az-plz-thx-u/6780)
**Author:** [@rh2026](https://forum.livingwitherythromelalgia.org/u/rh2026)\ **Replies:** 0\ **Last updated:** [September 30, 2026, 7:13pm UTC](https://forum.livingwitherythromelalgia.org/t/need-dr-referral-in-az-plz-thx-u/6780 "2026-09-30T19:13:26Z")
Hi, Im in Phoenix Az , would somebody plz recommend a doctor? I have a doctors appointment in an hour and I need a referral please, thank you! I’m not sure if I’m posting where I’m supposed to be posting? This is the fi… --- ## [New Treatment](https://forum.livingwitherythromelalgia.org/t/new-treatment/6728)
**Author:** [@JonAlan](https://forum.livingwitherythromelalgia.org/u/JonAlan)\ **Replies:** 1\ **Last updated:** [July 15, 2026, 12:07pm UTC](https://forum.livingwitherythromelalgia.org/t/new-treatment/6728 "2026-07-15T12:07:53Z")
Hi, thanks for letting me join. I chose to participate when I discovered a treatment thats actually helping with type 1 EM. It was after learning that this disease ran in my family and that there was an actual explanatio… --- ## [First time Em Any one on here has had their nails grow back](https://forum.livingwitherythromelalgia.org/t/first-time-em-any-one-on-here-has-had-their-nails-grow-back/6660)
**Author:** [@Ale1033](https://forum.livingwitherythromelalgia.org/u/Ale1033)\ **Replies:** 0\ **Last updated:** [May 16, 2026, 1:01am UTC](https://forum.livingwitherythromelalgia.org/t/first-time-em-any-one-on-here-has-had-their-nails-grow-back/6660 "2026-05-16T01:01:04Z")
Noticed my nails don’t really grow anymore. I’m new here my EM started a month ago Started on my hands, I was a bartender (had to quit) my hands would first get really itchy and swell pretty bad (I worked the weekend s… --- ## [New Member Introductions](https://forum.livingwitherythromelalgia.org/t/new-member-introductions/6648)
**Author:** [@Tony](https://forum.livingwitherythromelalgia.org/u/Tony)\ **Replies:** 1\ **Last updated:** [March 26, 2026, 10:24pm UTC](https://forum.livingwitherythromelalgia.org/t/new-member-introductions/6648 "2026-03-26T22:24:46Z")
Hello. I’m Tony. I live in Kansas City. I’m in my early 60s and I’ve had this condition for 15 years but only recently found out it was called Erythromelalgia. As I’m sure you know, it’s rare so most people and doctors h… --- ## [New member introduction](https://forum.livingwitherythromelalgia.org/t/new-member-introduction/6593)
**Author:** [@kjonyx](https://forum.livingwitherythromelalgia.org/u/kjonyx)\ **Replies:** 3\ **Last updated:** [January 17, 2026, 4:32pm UTC](https://forum.livingwitherythromelalgia.org/t/new-member-introduction/6593 "2026-01-17T16:32:31Z")
Hello, my name is KJ. I haven’t been officially diagnosed with EM, but I have been diagnosed with Raynauds. I’m unsure whether my burning symptoms are actually from EM or another autonomic condition, but I’m constantly … --- ## [Burning feet and Introduction](https://forum.livingwitherythromelalgia.org/t/burning-feet-and-introduction/827)
**Author:** [@hayley3](https://forum.livingwitherythromelalgia.org/u/hayley3)\ **Replies:** 19\ **Last updated:** [January 15, 2026, 12:59am UTC](https://forum.livingwitherythromelalgia.org/t/burning-feet-and-introduction/827 "2026-01-15T00:59:10Z")
Hi, I'm Cheryl and I have burning feet. I'm not dx'd but I have been dx'd with Plantar Fasciitis. I always felt I had Raynaud's especially in my hands because cold weather is so painful to my fingers. I was dx'd with … --- ## [Advice for Treatement in NSW](https://forum.livingwitherythromelalgia.org/t/advice-for-treatement-in-nsw/6517)
**Author:** [@john](https://forum.livingwitherythromelalgia.org/u/john)\ **Replies:** 3\ **Last updated:** [December 10, 2025, 8:56pm UTC](https://forum.livingwitherythromelalgia.org/t/advice-for-treatement-in-nsw/6517 "2025-12-10T20:56:58Z")
Hi, Our 27 year old son has just been diagnosed with EM by a neurologist. The doctor isn’t experienced with treatments and was unable to refer us to someone appropriate. We are in NSW Australia and hoped someone could … --- ## [Hello from Victoria, Australia!](https://forum.livingwitherythromelalgia.org/t/hello-from-victoria-australia/4933)
**Author:** [@Gidgee](https://forum.livingwitherythromelalgia.org/u/Gidgee)\ **Replies:** 4\ **Last updated:** [September 9, 2025, 7:35pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-from-victoria-australia/4933 "2025-09-09T19:35:28Z")
Hello everyone My name’s Brandi and I live in regional Victoria. I started having burning feet symptoms about 3 1/2 years ago. Like so many of you it’s been a very bumpy road since then! My symptoms have greatly deterio… --- ## [Anyone in Australia with this disease](https://forum.livingwitherythromelalgia.org/t/anyone-in-australia-with-this-disease/6512)
**Author:** [@Michelle55](https://forum.livingwitherythromelalgia.org/u/Michelle55)\ **Replies:** 0\ **Last updated:** [September 9, 2025, 7:20pm UTC](https://forum.livingwitherythromelalgia.org/t/anyone-in-australia-with-this-disease/6512 "2025-09-09T19:20:21Z")
Hi everyone, I’m looking for people in Australia with Erythromelalgia. I have an intense diagnosis. I also have Raynards with it. I am very depressed. I have no friends and only my mum who health is not good. I’m 55. I … --- ## [Looking for support and resources!](https://forum.livingwitherythromelalgia.org/t/looking-for-support-and-resources/6438)
**Author:** [@Riley1127](https://forum.livingwitherythromelalgia.org/u/Riley1127)\ **Replies:** 13\ **Last updated:** [January 19, 2025, 2:48am UTC](https://forum.livingwitherythromelalgia.org/t/looking-for-support-and-resources/6438 "2025-01-19T02:48:05Z")
Hello! I have a gut feeling I have EM. I have the classic symptoms after doing my own research. I had a very big life changing/stressful event happen in June '24. My symptoms started in Aug '24 and got progressively wor… --- ## [Hi, new here :)](https://forum.livingwitherythromelalgia.org/t/hi-new-here/6361)
**Author:** [@Lin3](https://forum.livingwitherythromelalgia.org/u/Lin3)\ **Replies:** 3\ **Last updated:** [August 16, 2024, 10:36pm UTC](https://forum.livingwitherythromelalgia.org/t/hi-new-here/6361 "2024-08-16T22:36:14Z")
Hi, I just found this support site after recently being diagnosed. My symptoms started about 4 years ago, and it has been gradually getting worse since. It started in my feet, but now I experience pain and hot redness in… --- ## [Introduction and location](https://forum.livingwitherythromelalgia.org/t/introduction-and-location/6327)
**Author:** [@DerekL](https://forum.livingwitherythromelalgia.org/u/DerekL)\ **Replies:** 11\ **Last updated:** [May 28, 2024, 9:19pm UTC](https://forum.livingwitherythromelalgia.org/t/introduction-and-location/6327 "2024-05-28T21:19:04Z")
Hi all I live in New Zealand and am currently working in Istanbul (which can get hot!) I picked up a burning feet issue about 6 months ago and the docs at home all think its a fungal disease. Yet No anti-fungal treatme… --- ## [New member - hi 👋](https://forum.livingwitherythromelalgia.org/t/new-member-hi/6278)
**Author:** [@ASC](https://forum.livingwitherythromelalgia.org/u/ASC)\ **Replies:** 6\ **Last updated:** [March 7, 2024, 8:21am UTC](https://forum.livingwitherythromelalgia.org/t/new-member-hi/6278 "2024-03-07T08:21:52Z")
Hi everyone :wave: I’m new to the forum and came across it by chance which I’m really grateful for as I’m struggling at the moment. I was diagnosed with EM in May 2023 at age 36, along with Raynaud’s. It started in my … --- ## [Welcome Heidi!](https://forum.livingwitherythromelalgia.org/t/welcome-heidi/6191)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [June 21, 2023, 12:13pm UTC](https://forum.livingwitherythromelalgia.org/t/welcome-heidi/6191 "2023-06-21T12:13:12Z")
Hi Heidi (@EMinCalifornia )! I wanted to give you a formal welcome, as well as an opportunity to have your own thread while you’re still getting comfortable with the site. I saw that you mentioned your concern about wild… --- ## [New User Guide](https://forum.livingwitherythromelalgia.org/t/new-user-guide/5166)
**Author:** [@Staff\_BensFriends](https://forum.livingwitherythromelalgia.org/u/Staff_BensFriends)\ **Replies:** 2\ **Last updated:** [June 15, 2023, 12:46pm UTC](https://forum.livingwitherythromelalgia.org/t/new-user-guide/5166 "2023-06-15T12:46:38Z")
Are you a new user? Don’t worry we will guide you through the following videos. How to Create An Account? Click the image to watch the video on creating a new account. --- ## [EM triggered by bright light?](https://forum.livingwitherythromelalgia.org/t/em-triggered-by-bright-light/1197)
**Author:** [@hopingforhealth](https://forum.livingwitherythromelalgia.org/u/hopingforhealth)\ **Replies:** 5\ **Last updated:** [March 22, 2023, 5:35pm UTC](https://forum.livingwitherythromelalgia.org/t/em-triggered-by-bright-light/1197 "2023-03-22T17:35:16Z")
Hi, I'm new to the forum. I'm glad I've found it as it looks like there's lots of good info here. I feel like I have classic EM with the exception that light is a major trigger. Does anyone else experience light as a maj… --- ## [Varying Degrees?](https://forum.livingwitherythromelalgia.org/t/varying-degrees/101)
**Author:** [@MMC](https://forum.livingwitherythromelalgia.org/u/MMC)\ **Replies:** 45\ **Last updated:** [February 25, 2023, 8:16pm UTC](https://forum.livingwitherythromelalgia.org/t/varying-degrees/101 "2023-02-25T20:16:42Z")
All: thanks so much for the warm welcome I received from so many of you. It is nice to know that the terrible suffering you endure has not strained your courtesy! I have joined this board because there is a young lady th… --- ## [Introduction new member with EM since 2005 age 69yrs.lady.Also have Raynaurds](https://forum.livingwitherythromelalgia.org/t/introduction-new-member-with-em-since-2005-age-69yrs-lady-also-have-raynaurds/6080)
**Author:** [@anniemitchell60](https://forum.livingwitherythromelalgia.org/u/anniemitchell60)\ **Replies:** 8\ **Last updated:** [January 17, 2023, 9:19pm UTC](https://forum.livingwitherythromelalgia.org/t/introduction-new-member-with-em-since-2005-age-69yrs-lady-also-have-raynaurds/6080 "2023-01-17T21:19:04Z")
I use to go too clinic in ninewells under vascular clinic Dr Bains, he is ill now clinic is closed down !! Why do not know, no replacement. I have been left now to deal with conditions on my own. I have Raynaurds and e… --- ## [Intrathecal Pump. IVIG. or Plasmapheresis](https://forum.livingwitherythromelalgia.org/t/intrathecal-pump-ivig-or-plasmapheresis/410)
**Author:** [@bella](https://forum.livingwitherythromelalgia.org/u/bella)\ **Replies:** 2\ **Last updated:** [January 9, 2023, 3:32pm UTC](https://forum.livingwitherythromelalgia.org/t/intrathecal-pump-ivig-or-plasmapheresis/410 "2023-01-09T15:32:42Z")
Hi Everyone, I am new to this so please forgive me if I am posting this in the wrong section.I am 19 and have had EM since I was 12. It was out of control and I was eventually able to leave the hospital after learning … --- ## [New Member Inrtoduction](https://forum.livingwitherythromelalgia.org/t/new-member-inrtoduction/5931)
**Author:** [@Charlie](https://forum.livingwitherythromelalgia.org/u/Charlie)\ **Replies:** 15\ **Last updated:** [July 1, 2022, 2:17am UTC](https://forum.livingwitherythromelalgia.org/t/new-member-inrtoduction/5931 "2022-07-01T02:17:11Z")
Greeting Everyone, My name is Charlie, I am sixty-eight year old and new to this forum. I recently developed EM symptoms. Prior to 2020, I was completely healthy, I played racquetball several times a week. Then, I dev… --- ## [Newly diagnosed with EM with other issues](https://forum.livingwitherythromelalgia.org/t/newly-diagnosed-with-em-with-other-issues/5661)
**Author:** [@alexw](https://forum.livingwitherythromelalgia.org/u/alexw)\ **Replies:** 18\ **Last updated:** [February 24, 2022, 1:00am UTC](https://forum.livingwitherythromelalgia.org/t/newly-diagnosed-with-em-with-other-issues/5661 "2022-02-24T01:00:23Z")
Hello everyone, I have recently been diagnosed at the Mayo Clinic and told to take aspirin along with a ketamine and amitriptyline cream. I am 27 years old and have been extremely healthy until December of 2020. On Dec… --- ## [Burning, red, painful feet](https://forum.livingwitherythromelalgia.org/t/burning-red-painful-feet/5795)
**Author:** [@Karen14](https://forum.livingwitherythromelalgia.org/u/Karen14)\ **Replies:** 3\ **Last updated:** [February 14, 2022, 4:53pm UTC](https://forum.livingwitherythromelalgia.org/t/burning-red-painful-feet/5795 "2022-02-14T16:53:43Z")
Hi everyone, my name is Karen and i have been having this problem with my feet for almost ten years along with other symptoms, its mostly after dark that my feet become inflamed, red, burning and elevated temp, i actuall… --- ## [New symptoms](https://forum.livingwitherythromelalgia.org/t/new-symptoms/5783)
**Author:** [@Decoupeur](https://forum.livingwitherythromelalgia.org/u/Decoupeur)\ **Replies:** 12\ **Last updated:** [January 16, 2022, 3:04am UTC](https://forum.livingwitherythromelalgia.org/t/new-symptoms/5783 "2022-01-16T03:04:03Z")
I cannot properly convey how important finding all of you is to me. I have never known anyone with this awful condition. And I’m terribly sorry for all of you and your suffering. I have been symptomatic on and off for … --- ## [A warm welcome to our new members](https://forum.livingwitherythromelalgia.org/t/a-warm-welcome-to-our-new-members/5752)
**Author:** [@Sara\_BFIntern](https://forum.livingwitherythromelalgia.org/u/Sara_BFIntern)\ **Replies:** 0\ **Last updated:** [November 22, 2021, 11:43pm UTC](https://forum.livingwitherythromelalgia.org/t/a-warm-welcome-to-our-new-members/5752 "2021-11-22T23:43:40Z")
So far this month we’ve had a handful of new members join this supportive community! If you click on their @tag or on their avatar you can read a bit of what they’ve included in their profiles. Didi (@Unfinished) has be… --- ## [Privacy Policy](https://forum.livingwitherythromelalgia.org/t/privacy-policy/6)
**Author:** [@system](https://forum.livingwitherythromelalgia.org/u/system)\ **Replies:** 0\ **Last updated:** [May 30, 2016, 1:04pm UTC](https://forum.livingwitherythromelalgia.org/t/privacy-policy/6 "2016-05-30T13:04:02Z")
What information do we collect? We collect information from you when you register on our site and gather data when you participate in the forum by reading, writing, and evaluating the content shared here. You do not have… --- ## [Terms of Service](https://forum.livingwitherythromelalgia.org/t/terms-of-service/4)
**Author:** [@system](https://forum.livingwitherythromelalgia.org/u/system)\ **Replies:** 0\ **Last updated:** [May 30, 2016, 1:04pm UTC](https://forum.livingwitherythromelalgia.org/t/terms-of-service/4 "2016-05-30T13:04:01Z")
The following terms and conditions govern all use of the Ben’s Friends website and all content, services and products available at or through the website, including, but not limited to, Ben’s Friends Forum Software, Ben’… [Next page](https://forum.livingwitherythromelalgia.org/c/welcome/22.md?page=1)