# Blog **URL:** https://forum.livingwitherythromelalgia.org/c/general/blog/5.md [Latest](https://forum.livingwitherythromelalgia.org/latest.md) · [Categories](https://forum.livingwitherythromelalgia.org/categories.md) · [Tags](https://forum.livingwitherythromelalgia.org/tags.md) --- ## [About the Blog category](https://forum.livingwitherythromelalgia.org/t/about-the-blog-category/11)
**Author:** [@system](https://forum.livingwitherythromelalgia.org/u/system)\ **Replies:** 0\ **Last updated:** [May 30, 2016, 1:17pm UTC](https://forum.livingwitherythromelalgia.org/t/about-the-blog-category/11 "2016-05-30T13:17:15Z")
--- ## [Update to my Best Christmas Present Blog](https://forum.livingwitherythromelalgia.org/t/update-to-my-best-christmas-present-blog/1335)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 2\ **Last updated:** [February 26, 2026, 10:25pm UTC](https://forum.livingwitherythromelalgia.org/t/update-to-my-best-christmas-present-blog/1335 "2026-02-26T22:25:32Z")
Since being prescribed with a higher 20mg doseof Amitriptyline in early December I have had very little trouble with EM symptoms. Still get breakthrough flares on average once every evening or late night but they are ver… --- ## [Red Scrotum Syndrome (RSS)](https://forum.livingwitherythromelalgia.org/t/red-scrotum-syndrome-rss/6084)
**Author:** [@tedC](https://forum.livingwitherythromelalgia.org/u/tedC)\ **Replies:** 4\ **Last updated:** [January 26, 2023, 2:05pm UTC](https://forum.livingwitherythromelalgia.org/t/red-scrotum-syndrome-rss/6084 "2023-01-26T14:05:44Z")
Hello, I’m new to this Erythromelalgia group and I hope that someone out there has experienced my condition and hopefully has found something that has resolved it. Briefly, I can tell you that I’ve been suffering with R… --- ## [UK sufferers please!](https://forum.livingwitherythromelalgia.org/t/uk-sufferers-please/1394)
**Author:** [@ajh](https://forum.livingwitherythromelalgia.org/u/ajh)\ **Replies:** 17\ **Last updated:** [January 19, 2023, 4:16pm UTC](https://forum.livingwitherythromelalgia.org/t/uk-sufferers-please/1394 "2023-01-19T16:16:12Z")
Could I ask UK sufferers who they have found in the UK that they have confidence in, who they feel is up to date, who is able to prescribe the more potent meds, and who is wholehearted about a scientific systematic trial… --- ## [Amputation as my last attempt for Pain Relief](https://forum.livingwitherythromelalgia.org/t/amputation-as-my-last-attempt-for-pain-relief/1351)
**Author:** [@Mike](https://forum.livingwitherythromelalgia.org/u/Mike)\ **Replies:** 9\ **Last updated:** [April 23, 2022, 4:38pm UTC](https://forum.livingwitherythromelalgia.org/t/amputation-as-my-last-attempt-for-pain-relief/1351 "2022-04-23T16:38:53Z")
These past 4 months have been monumental for me and my life to come. My last post in the discussion “Lower Leg Replacement” was Nov. 20, 2011 with the subject being one of resignation that amputation would not work. I … --- ## [To better serve you, we will be closing Blogs shortly](https://forum.livingwitherythromelalgia.org/t/to-better-serve-you-we-will-be-closing-blogs-shortly/1434)
**Author:** [@Madere\_dancermom](https://forum.livingwitherythromelalgia.org/u/Madere_dancermom)\ **Replies:** 1\ **Last updated:** [October 15, 2018, 3:48am UTC](https://forum.livingwitherythromelalgia.org/t/to-better-serve-you-we-will-be-closing-blogs-shortly/1434 "2018-10-15T03:48:49Z")
It takes a lot of work to maintain our online communities. If we can streamline the effort, it helps a lot. To better serve you, we will be closing the blog feature shortly. Please use the discussion forum in lieu of blo… --- ## [Symptoms - Feet - Check . Others "Do not apply" (Diss.forms)](https://forum.livingwitherythromelalgia.org/t/symptoms-feet-check-others-do-not-apply-diss-forms/1435)
**Author:** [@Sam\_S](https://forum.livingwitherythromelalgia.org/u/Sam_S)\ **Replies:** 5\ **Last updated:** [May 2, 2017, 2:28pm UTC](https://forum.livingwitherythromelalgia.org/t/symptoms-feet-check-others-do-not-apply-diss-forms/1435 "2017-05-02T14:28:04Z")
Hello everybody , While filling out diss. papers my Dr comes in muttering about who is supposed to fill out this and that . I have (since April 18 2011) been seeing this same Dr . He asks me "what it is that I have ?" On… --- ## [Genetic Testing for EM](https://forum.livingwitherythromelalgia.org/t/genetic-testing-for-em/1373)
**Author:** [@Kboyd](https://forum.livingwitherythromelalgia.org/u/Kboyd)\ **Replies:** 10\ **Last updated:** [November 29, 2016, 2:47am UTC](https://forum.livingwitherythromelalgia.org/t/genetic-testing-for-em/1373 "2016-11-29T02:47:08Z")
Hi Everyone! Is there anyone out there that has information on how to determine if your Erythromelalgia is genetic? I believe I'm the first in my family to have it, but cannot be sure since I don't have a relationship w… --- ## [LDN (Low Dose Naltrexone](https://forum.livingwitherythromelalgia.org/t/ldn-low-dose-naltrexone/1439)
**Author:** [@Davipot](https://forum.livingwitherythromelalgia.org/u/Davipot)\ **Replies:** 2\ **Last updated:** [March 18, 2016, 7:59pm UTC](https://forum.livingwitherythromelalgia.org/t/ldn-low-dose-naltrexone/1439 "2016-03-18T19:59:45Z")
Hi Everyone, It has been a while since I have been on the site. I have been keeping in touch via email with David Kelly who some of you will be familiar with and David has indicated that his Doctor will be trying LDN. Ca… --- ## [Improved my Periperal Neuropathy after 10 months](https://forum.livingwitherythromelalgia.org/t/improved-my-periperal-neuropathy-after-10-months/1438)
**Author:** [@MJT](https://forum.livingwitherythromelalgia.org/u/MJT)\ **Replies:** 0\ **Last updated:** [September 25, 2015, 9:46pm UTC](https://forum.livingwitherythromelalgia.org/t/improved-my-periperal-neuropathy-after-10-months/1438 "2015-09-25T21:46:55Z")
For the record I am in my sixties, 15 pounds overweight and otherwise healthy except for the Neuropathy, acid reflux and some Tinnitius. Was taking prescriptions Teka ( Reflux) and Lipidor ( anti-cholesterol) Nov 2014 I… --- ## [Do I have EM?](https://forum.livingwitherythromelalgia.org/t/do-i-have-em/1419)
**Author:** [@Beth2](https://forum.livingwitherythromelalgia.org/u/Beth2)\ **Replies:** 2\ **Last updated:** [August 16, 2015, 11:06pm UTC](https://forum.livingwitherythromelalgia.org/t/do-i-have-em/1419 "2015-08-16T23:06:35Z")
I am wondering if I have this. My feet feel like I've been walking around on hot coals all day. The bottom of my feet are raw, red and 5 degrees hotter than the top of my foot. I also have pain so bad that I can barely w… --- ## [A Summary](https://forum.livingwitherythromelalgia.org/t/a-summary/1437)
**Author:** [@KT1](https://forum.livingwitherythromelalgia.org/u/KT1)\ **Replies:** 0\ **Last updated:** [August 16, 2015, 4:12am UTC](https://forum.livingwitherythromelalgia.org/t/a-summary/1437 "2015-08-16T04:12:03Z")
I have inherited EM, so I've actually had it all my life. However, being raised by East Asian parents, they held much skepticism against Western medication. Therefore, I went untreated and undiagnosed. That's where I beg… --- ## [Help please? Newly diagnosed](https://forum.livingwitherythromelalgia.org/t/help-please-newly-diagnosed/1436)
**Author:** [@Lilbit61](https://forum.livingwitherythromelalgia.org/u/Lilbit61)\ **Replies:** 2\ **Last updated:** [June 29, 2015, 3:11pm UTC](https://forum.livingwitherythromelalgia.org/t/help-please-newly-diagnosed/1436 "2015-06-29T15:11:16Z")
I am not sure where I am to post. I am diagnosed with Peripheral Neuropathy, TOS, and possible Erythromelalgia. If I am in a flare it has lasted 3 months now! They have me on Lyrica and I can hardly walk. Need friend… --- ## [Maybe Helpful INFO for some Sufferers](https://forum.livingwitherythromelalgia.org/t/maybe-helpful-info-for-some-sufferers/1433)
**Author:** [@frostbite](https://forum.livingwitherythromelalgia.org/u/frostbite)\ **Replies:** 5\ **Last updated:** [June 4, 2015, 1:42am UTC](https://forum.livingwitherythromelalgia.org/t/maybe-helpful-info-for-some-sufferers/1433 "2015-06-04T01:42:58Z")
SKIN%20MATTERS%20Identifying%20Pain%20Mechanisms.pdf http://www.hindawi.com/journals/nri/2013/329364/ Hi All - Just wanted to post the link for an interesting document relating to Small Fiber Neuropathy and CR… --- ## [Lazer Therapy](https://forum.livingwitherythromelalgia.org/t/lazer-therapy/1417)
**Author:** [@Davipot](https://forum.livingwitherythromelalgia.org/u/Davipot)\ **Replies:** 2\ **Last updated:** [May 25, 2015, 1:27am UTC](https://forum.livingwitherythromelalgia.org/t/lazer-therapy/1417 "2015-05-25T01:27:39Z")
My Wife found this just after Christmas, Emily has started an intila six treatment cycle to see where we are. http://www.astepabovefootcare.com/laser-for-pain-relief.html I will keep you all posted as to how this goes. … --- ## [Valerian Root?!](https://forum.livingwitherythromelalgia.org/t/valerian-root/1338)
**Author:** [@Abigail](https://forum.livingwitherythromelalgia.org/u/Abigail)\ **Replies:** 6\ **Last updated:** [May 24, 2015, 7:44pm UTC](https://forum.livingwitherythromelalgia.org/t/valerian-root/1338 "2015-05-24T19:44:21Z")
I've been having a crappy month with EM. A whole bunch of things piling up led to some of the worst flaring I have experienced since I moved to Portland. Last night, on a whim I ordered some valerian root tea because I h… --- ## [Purple tint on my lower legs](https://forum.livingwitherythromelalgia.org/t/purple-tint-on-my-lower-legs/1425)
**Author:** [@larson\_k](https://forum.livingwitherythromelalgia.org/u/larson_k)\ **Replies:** 2\ **Last updated:** [May 24, 2015, 10:03am UTC](https://forum.livingwitherythromelalgia.org/t/purple-tint-on-my-lower-legs/1425 "2015-05-24T10:03:56Z")
Hi everyone, in the recent months I've noticed my lower legs (knees and below) turning from a red to a more purple tint when I take my compression hoes off at night :( i'm a little worried that i'm totally obliterating m… --- ## [Something potentially positive](https://forum.livingwitherythromelalgia.org/t/something-potentially-positive/1432)
**Author:** [@Davipot](https://forum.livingwitherythromelalgia.org/u/Davipot)\ **Replies:** 1\ **Last updated:** [May 22, 2015, 12:11pm UTC](https://forum.livingwitherythromelalgia.org/t/something-potentially-positive/1432 "2015-05-22T12:11:56Z")
Just thought I would update you all on where we are , this information could be potentially relevant and I'll post it on the forums when Emily starts her treatment. So , cold laser therapy did not work, long shot an… --- ## [Help at Specialty Clinic](https://forum.livingwitherythromelalgia.org/t/help-at-specialty-clinic/1430)
**Author:** [@Kerri](https://forum.livingwitherythromelalgia.org/u/Kerri)\ **Replies:** 1\ **Last updated:** [May 14, 2015, 12:55am UTC](https://forum.livingwitherythromelalgia.org/t/help-at-specialty-clinic/1430 "2015-05-14T00:55:20Z")
Today is my first day with the group and I want to thank those of you who have already made me feel welcomed. I joined the group looking for support and possibly answers. I was wondering if anyone has been to the Mayo Cl… --- ## [Exercise?](https://forum.livingwitherythromelalgia.org/t/exercise/1431)
**Author:** [@larson\_k](https://forum.livingwitherythromelalgia.org/u/larson_k)\ **Replies:** 0\ **Last updated:** [April 12, 2015, 10:08am UTC](https://forum.livingwitherythromelalgia.org/t/exercise/1431 "2015-04-12T10:08:28Z")
Hi everyone! When I was little and my EM was totally under control and didn't limit me whatsoever, I was an avid swimmer. However, ever since my EM escalated when I was about 12, I've been exercising less and less. I k… --- ## [Research](https://forum.livingwitherythromelalgia.org/t/research/1429)
**Author:** [@Heidi](https://forum.livingwitherythromelalgia.org/u/Heidi)\ **Replies:** 1\ **Last updated:** [March 23, 2015, 5:27pm UTC](https://forum.livingwitherythromelalgia.org/t/research/1429 "2015-03-23T17:27:52Z")
Just wondering what research is currently active for EM? My daughter is a film director and recently got a group of film people to volunteer their time to make a short film to raise money for a childhood disease. They ne… --- ## [Local Fundraiser for Ben's Friends](https://forum.livingwitherythromelalgia.org/t/local-fundraiser-for-bens-friends/1428)
**Author:** [@Scott\_Orn](https://forum.livingwitherythromelalgia.org/u/Scott_Orn)\ **Replies:** 1\ **Last updated:** [March 22, 2015, 4:00pm UTC](https://forum.livingwitherythromelalgia.org/t/local-fundraiser-for-bens-friends/1428 "2015-03-22T16:00:47Z")
I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some friends of mine wanted to support Ben's Friends so they held a "bar night get together for Ben's Friends." It was a big s… --- ## [Nel](https://forum.livingwitherythromelalgia.org/t/nel/1422)
**Author:** [@catlady](https://forum.livingwitherythromelalgia.org/u/catlady)\ **Replies:** 1\ **Last updated:** [March 21, 2015, 9:23am UTC](https://forum.livingwitherythromelalgia.org/t/nel/1422 "2015-03-21T09:23:04Z")
Thank you so much Nel.... yes yes yes accupuncture is working fo me along with Lyrica 75mg 3x day, 1hour between 1st and 2nd, and 3rd around 5 pm. My accupuncturist has degree from China, 98% pain free sessions. here is … --- ## [Raw feet](https://forum.livingwitherythromelalgia.org/t/raw-feet/1427)
**Author:** [@Roach131](https://forum.livingwitherythromelalgia.org/u/Roach131)\ **Replies:** 0\ **Last updated:** [March 10, 2015, 4:29pm UTC](https://forum.livingwitherythromelalgia.org/t/raw-feet/1427 "2015-03-10T16:29:46Z")
My feet have stated peeling, especially my toes. They are also raw. Does anyone else have this problem. I do not soak them in water. --- ## [New Here!](https://forum.livingwitherythromelalgia.org/t/new-here/1426)
**Author:** [@Ash1](https://forum.livingwitherythromelalgia.org/u/Ash1)\ **Replies:** 1\ **Last updated:** [March 8, 2015, 5:37pm UTC](https://forum.livingwitherythromelalgia.org/t/new-here/1426 "2015-03-08T17:37:49Z")
Hello All! I would like to begin by saying this is an incredibly informative and supportive site! Thank you for making this site! I recently discovered erythromelalgia after years of dealing with it. I'm almost 90% sure … --- ## [Doing Great!](https://forum.livingwitherythromelalgia.org/t/doing-great/1424)
**Author:** [@Rg1](https://forum.livingwitherythromelalgia.org/u/Rg1)\ **Replies:** 0\ **Last updated:** [February 23, 2015, 7:33pm UTC](https://forum.livingwitherythromelalgia.org/t/doing-great/1424 "2015-02-23T19:33:54Z")
Thanks so much for the cake.I am glad to report that I am doing great!Still taking Cymbalta and Gaba 100mg once a day. I have very few flares now. --- ## [Nel](https://forum.livingwitherythromelalgia.org/t/nel/1423)
**Author:** [@catlady](https://forum.livingwitherythromelalgia.org/u/catlady)\ **Replies:** 0\ **Last updated:** [February 23, 2015, 12:04am UTC](https://forum.livingwitherythromelalgia.org/t/nel/1423 "2015-02-23T00:04:57Z")
A correction to my other message. In the shower... I do not use plastic bags...I put them directly into water in a plastic shoe box. It is complicated. --- ## [Diagnosis Day](https://forum.livingwitherythromelalgia.org/t/diagnosis-day/1421)
**Author:** [@Willemijn](https://forum.livingwitherythromelalgia.org/u/Willemijn)\ **Replies:** 0\ **Last updated:** [January 30, 2015, 10:22pm UTC](https://forum.livingwitherythromelalgia.org/t/diagnosis-day/1421 "2015-01-30T22:22:59Z")
Dear LWE-friends, You've been on my mind even though I wasn't able to write here for a while. Much happened since the last time I was here: I researched my own diseases. Struggled to get to the right docto… --- ## [Electro Stimulation........ not an option](https://forum.livingwitherythromelalgia.org/t/electro-stimulation-not-an-option/1420)
**Author:** [@steve55](https://forum.livingwitherythromelalgia.org/u/steve55)\ **Replies:** 0\ **Last updated:** [January 28, 2015, 8:00pm UTC](https://forum.livingwitherythromelalgia.org/t/electro-stimulation-not-an-option/1420 "2015-01-28T20:00:00Z")
I'm being treated for my erythomelalgia at university based health care provider. They had been instrumental in making my initial diagnosis worked aggressively with me looking for various treatment options. We decided t… --- ## [Are there any EM specialists in PA?](https://forum.livingwitherythromelalgia.org/t/are-there-any-em-specialists-in-pa/1418)
**Author:** [@Veronica](https://forum.livingwitherythromelalgia.org/u/Veronica)\ **Replies:** 0\ **Last updated:** [January 20, 2015, 7:35pm UTC](https://forum.livingwitherythromelalgia.org/t/are-there-any-em-specialists-in-pa/1418 "2015-01-20T19:35:41Z")
Does anyone know of a doctor who specializes or is familiar with EM in Pennsylvania? I'm trying to seek treatment and need to seek a doctor asap. Thanks! [Next page](https://forum.livingwitherythromelalgia.org/c/general/blog/5.md?page=1)