# New Member Introductions **URL:** https://forum.livingwitherythromelalgia.org/c/welcome/new-member-introductions/12.md [Latest](https://forum.livingwitherythromelalgia.org/latest.md) · [Categories](https://forum.livingwitherythromelalgia.org/categories.md) · [Tags](https://forum.livingwitherythromelalgia.org/tags.md) --- ## [About the New Member Introductions category](https://forum.livingwitherythromelalgia.org/t/about-the-new-member-introductions-category/18)
**Author:** [@system](https://forum.livingwitherythromelalgia.org/u/system)\ **Replies:** 5\ **Last updated:** [June 4, 2021, 8:45pm UTC](https://forum.livingwitherythromelalgia.org/t/about-the-new-member-introductions-category/18 "2021-06-04T20:45:33Z")
New members, start your experience here. Introduce yourself and share your story how you are affected with Erythromelalgia. Welcome! --- ## [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 … --- ## [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… --- ## [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 … --- ## [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… --- ## [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 … --- ## [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… --- ## [Support group for younger EM patients?](https://forum.livingwitherythromelalgia.org/t/support-group-for-younger-em-patients/5479)
**Author:** [@tmss16](https://forum.livingwitherythromelalgia.org/u/tmss16)\ **Replies:** 5\ **Last updated:** [April 18, 2021, 1:36am UTC](https://forum.livingwitherythromelalgia.org/t/support-group-for-younger-em-patients/5479 "2021-04-18T01:36:49Z")
Hi there! I’m new to this community, and apologies if this isn’t the right place to ask this. I’ve had EM symptoms since age 9 and was finally diagnosed this year at age 21. I’ve been looking for some kind of support gro… --- ## [Is your EM part of another condition](https://forum.livingwitherythromelalgia.org/t/is-your-em-part-of-another-condition/1069)
**Author:** [@laughalittle](https://forum.livingwitherythromelalgia.org/u/laughalittle)\ **Replies:** 18\ **Last updated:** [March 6, 2021, 5:48pm UTC](https://forum.livingwitherythromelalgia.org/t/is-your-em-part-of-another-condition/1069 "2021-03-06T17:48:24Z")
Hi everyone, I am new to this site, but not new to chronic illness. Two and half years ago, I had a number of triggers in a short period of time that set in motion a series of health issues that took over my body like a … --- ## [Hi Everyone - I'm New](https://forum.livingwitherythromelalgia.org/t/hi-everyone-im-new/1118)
**Author:** [@nwgirl](https://forum.livingwitherythromelalgia.org/u/nwgirl)\ **Replies:** 8\ **Last updated:** [January 17, 2021, 7:25am UTC](https://forum.livingwitherythromelalgia.org/t/hi-everyone-im-new/1118 "2021-01-17T07:25:12Z")
Hi Everyone, I have been dealing with EM for over a year. I have seen numerous specialists in the attempt to get a diagnosis and EM was finally confirmed (based on reported symptoms and photos) earlier this month. It w… --- ## [Mayo clinic appointment help](https://forum.livingwitherythromelalgia.org/t/mayo-clinic-appointment-help/241)
**Author:** [@Alina\_D](https://forum.livingwitherythromelalgia.org/u/Alina_D)\ **Replies:** 23\ **Last updated:** [November 11, 2020, 10:27pm UTC](https://forum.livingwitherythromelalgia.org/t/mayo-clinic-appointment-help/241 "2020-11-11T22:27:59Z")
Hello. My name is Alina and I have yet to have this diagnosis but am at the Mayo clinic at this time. I had never heard of Erythromelalgia until my appointment here at the mayo. My rheumatologist / vascular specialist sa… --- ## [Andy's story](https://forum.livingwitherythromelalgia.org/t/andys-story/4998)
**Author:** [@Andy](https://forum.livingwitherythromelalgia.org/u/Andy)\ **Replies:** 2\ **Last updated:** [October 15, 2020, 12:22pm UTC](https://forum.livingwitherythromelalgia.org/t/andys-story/4998 "2020-10-15T12:22:45Z")
--- ## [Hi from South Carolina](https://forum.livingwitherythromelalgia.org/t/hi-from-south-carolina/5139)
**Author:** [@Iggy](https://forum.livingwitherythromelalgia.org/u/Iggy)\ **Replies:** 3\ **Last updated:** [October 2, 2020, 1:53am UTC](https://forum.livingwitherythromelalgia.org/t/hi-from-south-carolina/5139 "2020-10-02T01:53:32Z")
I’m new around here. I was diagnosed with EM about 6 weeks ago after maybe 10 years of daily burning foot pain. I had sudden onset of severe back pain about 4 years ago. I had two cycles of steroid injections for the b… --- ## [I will get my life back](https://forum.livingwitherythromelalgia.org/t/i-will-get-my-life-back/5096)
**Author:** [@Desperate](https://forum.livingwitherythromelalgia.org/u/Desperate)\ **Replies:** 3\ **Last updated:** [September 21, 2020, 4:52am UTC](https://forum.livingwitherythromelalgia.org/t/i-will-get-my-life-back/5096 "2020-09-21T04:52:10Z")
My name is “Micki”, I’m 22, and I’ve tentatively diagnosed with erythromelalgia. Before all this, I was your average college student, I suppose. My social life mostly exists online, but I have a few friends in my classes… --- ## [Anyone else dealing with severe Edema?](https://forum.livingwitherythromelalgia.org/t/anyone-else-dealing-with-severe-edema/4950)
**Author:** [@Gemgal66](https://forum.livingwitherythromelalgia.org/u/Gemgal66)\ **Replies:** 19\ **Last updated:** [September 20, 2020, 3:30am UTC](https://forum.livingwitherythromelalgia.org/t/anyone-else-dealing-with-severe-edema/4950 "2020-09-20T03:30:15Z")
Hello from Alberta Canada This is my first post so bear with me lol My EM is the worst it’s ever been and I am REALLY struggling. It first showed up around 2016 when I was 50 years old with just my toes and a small are… --- ## [Hints of EM during pregnancy, nothing for 18 months, then BAM](https://forum.livingwitherythromelalgia.org/t/hints-of-em-during-pregnancy-nothing-for-18-months-then-bam/5073)
**Author:** [@erinwithem](https://forum.livingwitherythromelalgia.org/u/erinwithem)\ **Replies:** 1\ **Last updated:** [September 6, 2020, 7:20pm UTC](https://forum.livingwitherythromelalgia.org/t/hints-of-em-during-pregnancy-nothing-for-18-months-then-bam/5073 "2020-09-06T19:20:54Z")
Hello All! I am 38 and first experienced strange episodes of my hands flushing during my first pregnancy, at age 34. It only ever lasted a few minutes, and I could feel the redness coming as a hot flushing feeling, exac… --- ## [Old and New Diagnosis](https://forum.livingwitherythromelalgia.org/t/old-and-new-diagnosis/5061)
**Author:** [@wils2260](https://forum.livingwitherythromelalgia.org/u/wils2260)\ **Replies:** 1\ **Last updated:** [September 1, 2020, 4:48pm UTC](https://forum.livingwitherythromelalgia.org/t/old-and-new-diagnosis/5061 "2020-09-01T16:48:06Z")
Hi, I’m new to this site and my diagnosis was relatively recent, but EM has been my friend for a long time. I have had EM since I was little, maybe age 6 or 7, and it started with what I used to call “hot ears.” My feet… --- ## [Constant foot pain](https://forum.livingwitherythromelalgia.org/t/constant-foot-pain/4991)
**Author:** [@Kaz](https://forum.livingwitherythromelalgia.org/u/Kaz)\ **Replies:** 6\ **Last updated:** [July 27, 2020, 6:40pm UTC](https://forum.livingwitherythromelalgia.org/t/constant-foot-pain/4991 "2020-07-27T18:40:49Z")
Thank u for accepting me in to your group🤗 I started with fybromyalgia after having an operation Sept 2019. Then from February this year, I first started noticing that my feet were purple if I sat or just stood. Then th… --- ## [Finally found docs who listen](https://forum.livingwitherythromelalgia.org/t/finally-found-docs-who-listen/4975)
**Author:** [@Longhaulmom](https://forum.livingwitherythromelalgia.org/u/Longhaulmom)\ **Replies:** 2\ **Last updated:** [July 19, 2020, 4:47pm UTC](https://forum.livingwitherythromelalgia.org/t/finally-found-docs-who-listen/4975 "2020-07-19T16:47:02Z")
For years I kept trying to explain to my doctors what my feet felt like and doing my own research. When I found EM I talked to my dr. about it and sent him a copy of the pages I had found and they agreed that it looked a… --- ## [New here & Searching for remedies](https://forum.livingwitherythromelalgia.org/t/new-here-searching-for-remedies/4948)
**Author:** [@Frenchy](https://forum.livingwitherythromelalgia.org/u/Frenchy)\ **Replies:** 5\ **Last updated:** [July 8, 2020, 12:00am UTC](https://forum.livingwitherythromelalgia.org/t/new-here-searching-for-remedies/4948 "2020-07-08T00:00:18Z")
Hi there, I’m a 23 year old women and while I’ve never been diagnosed, EM is the closest descriptor of what I have been dealing with since I was like 6. When I was a kid it was so bad my feet would burn all night. It was… --- ## [Newbie and cautious](https://forum.livingwitherythromelalgia.org/t/newbie-and-cautious/360)
**Author:** [@Cindy\_Lou](https://forum.livingwitherythromelalgia.org/u/Cindy_Lou)\ **Replies:** 11\ **Last updated:** [June 24, 2020, 10:19pm UTC](https://forum.livingwitherythromelalgia.org/t/newbie-and-cautious/360 "2020-06-24T22:19:08Z")
My doctor believes I have erythromelalgia, but I'm not sure because I'm not experiencing the pain like the rest of you. I have red palms and feet, intense heat...causing me to sleep with a frozen ice pack in my hands; t… --- ## [Any Recommendations for DR in Hartford CT area](https://forum.livingwitherythromelalgia.org/t/any-recommendations-for-dr-in-hartford-ct-area/4881)
**Author:** [@tucker01040](https://forum.livingwitherythromelalgia.org/u/tucker01040)\ **Replies:** 2\ **Last updated:** [May 30, 2020, 11:05am UTC](https://forum.livingwitherythromelalgia.org/t/any-recommendations-for-dr-in-hartford-ct-area/4881 "2020-05-30T11:05:05Z")
Looking for any recommendations in the CT area from people that have had good results. Or for that matter anywhere… Thanks Tony Parrelli --- ## [Can’t sleep](https://forum.livingwitherythromelalgia.org/t/can-t-sleep/4879)
**Author:** [@MainsRouges](https://forum.livingwitherythromelalgia.org/u/MainsRouges)\ **Replies:** 6\ **Last updated:** [May 26, 2020, 9:02pm UTC](https://forum.livingwitherythromelalgia.org/t/can-t-sleep/4879 "2020-05-26T21:02:00Z")
Hi everyone, New here and have been diligently reading the posts hoping to see if I can find relief. I have had undiagnosed Erythromelalgia and Raynaud’s since my teens and I have never had an issue with it since recent… --- ## [Looking for potential causes for my EM?](https://forum.livingwitherythromelalgia.org/t/looking-for-potential-causes-for-my-em/4780)
**Author:** [@rtstar](https://forum.livingwitherythromelalgia.org/u/rtstar)\ **Replies:** 12\ **Last updated:** [May 23, 2020, 11:01pm UTC](https://forum.livingwitherythromelalgia.org/t/looking-for-potential-causes-for-my-em/4780 "2020-05-23T23:01:11Z")
I have had EM since I was 10 years old, I’m 24 now. I had no idea what it was, my feet and hands swell and turn blood shot red when I touch warm water. I only had pain when I first developed it, it was severe and lasted … [Next page](https://forum.livingwitherythromelalgia.org/c/welcome/new-member-introductions/12.md?page=1)