# \#stories **URL:** https://forum.livingwitherythromelalgia.org/tag/stories/2.md [Latest](https://forum.livingwitherythromelalgia.org/latest.md) · [Categories](https://forum.livingwitherythromelalgia.org/categories.md) · [Tags](https://forum.livingwitherythromelalgia.org/tags.md) --- ## [How do you cope with the heat in summer?](https://forum.livingwitherythromelalgia.org/t/how-do-you-cope-with-the-heat-in-summer/6565)
**Author:** [@Michelle55](https://forum.livingwitherythromelalgia.org/u/Michelle55)\ **Replies:** 5\ **Last updated:** [July 20, 2026, 6:33pm UTC](https://forum.livingwitherythromelalgia.org/t/how-do-you-cope-with-the-heat-in-summer/6565 "2026-07-20T18:33:51Z")
Hi there everyone, I’m just wondering how you all cope with the heat in summer? Im in Australia, and it’s spring time so summer is just around the corner. My EM is very servere , and the slightest warmth puts me in so m… --- ## [Thank you for](https://forum.livingwitherythromelalgia.org/t/thank-you-for/6590)
**Author:** [@Michelle55](https://forum.livingwitherythromelalgia.org/u/Michelle55)\ **Replies:** 3\ **Last updated:** [January 7, 2026, 5:44am UTC](https://forum.livingwitherythromelalgia.org/t/thank-you-for/6590 "2026-01-07T05:44:55Z")
Hi to all who have replied to my posts. I really like it. Everything I eat flares me up. I am fed up because I have to eat. I literary cannot eat anything, it’s crazy. I’m going crazy and don’t know what to do. It’s our … --- ## [Toenail removal flare!](https://forum.livingwitherythromelalgia.org/t/toenail-removal-flare/6574)
**Author:** [@Leeni7](https://forum.livingwitherythromelalgia.org/u/Leeni7)\ **Replies:** 4\ **Last updated:** [December 10, 2025, 9:01pm UTC](https://forum.livingwitherythromelalgia.org/t/toenail-removal-flare/6574 "2025-12-10T21:01:47Z")
Hi everyone! I’m new here so I hope I’m following the rules properly! I’m in my late 30’s married and mom to 3 year old boy and have a laundry list of conditions: hyper-mobile EDS type 3, POTS, MCAS, CRPS, mold illness,… --- ## [Erythromelalgia recent diagnosis](https://forum.livingwitherythromelalgia.org/t/erythromelalgia-recent-diagnosis/6473)
**Author:** [@Kimbersunshine](https://forum.livingwitherythromelalgia.org/u/Kimbersunshine)\ **Replies:** 6\ **Last updated:** [May 31, 2025, 2:16pm UTC](https://forum.livingwitherythromelalgia.org/t/erythromelalgia-recent-diagnosis/6473 "2025-05-31T14:16:11Z")
Hi, my name is Kimberly. I am a 59-year-old woman. I was diagnosed in November 2024 by an infectious disease specialist after 2 plus years of numerous dr.'s shooting in the dark. Being accused of using illegal drugs by m… --- ## [Hello, I'm new here and in search of as much support & resources I can get](https://forum.livingwitherythromelalgia.org/t/hello-im-new-here-and-in-search-of-as-much-support-resources-i-can-get/6437)
**Author:** [@Riley1127](https://forum.livingwitherythromelalgia.org/u/Riley1127)\ **Replies:** 0\ **Last updated:** [January 13, 2025, 7:23pm UTC](https://forum.livingwitherythromelalgia.org/t/hello-im-new-here-and-in-search-of-as-much-support-resources-i-can-get/6437 "2025-01-13T19:23:34Z")
Hello! I am currently in search of a physician in the Hudson Valley, New Yorl area that can diagnose and treat Erythromelalgia. I have a gut feeling this is what I have. I have the classic symptoms after doing my own res… --- ## [Is it healthy to allow symptoms to persist? (and what worked for my symptoms)](https://forum.livingwitherythromelalgia.org/t/is-it-healthy-to-allow-symptoms-to-persist-and-what-worked-for-my-symptoms/5877)
**Author:** [@mark1337](https://forum.livingwitherythromelalgia.org/u/mark1337)\ **Replies:** 2\ **Last updated:** [December 14, 2023, 4:16pm UTC](https://forum.livingwitherythromelalgia.org/t/is-it-healthy-to-allow-symptoms-to-persist-and-what-worked-for-my-symptoms/5877 "2023-12-14T16:16:19Z")
I am wondering if it is physically healthy to push through the pain and allow symptoms to persist for lets say 8 hours a day? I am trying to get a job but I worry about long term damage to my vascular system. I am curio… --- ## [Breakthrough remission with adjustment to Bob's protocol!](https://forum.livingwitherythromelalgia.org/t/breakthrough-remission-with-adjustment-to-bobs-protocol/6233)
**Author:** [@Slee](https://forum.livingwitherythromelalgia.org/u/Slee)\ **Replies:** 5\ **Last updated:** [November 9, 2023, 6:43pm UTC](https://forum.livingwitherythromelalgia.org/t/breakthrough-remission-with-adjustment-to-bobs-protocol/6233 "2023-11-09T18:43:30Z")
I know that Bob believes his protocol works because the process desensitizes the nerves to better tolerate heat but I’ve always been skeptical about this. However, I never had any doubts that it DOES work after witnessin… --- ## [EM symptoms but only in winter?](https://forum.livingwitherythromelalgia.org/t/em-symptoms-but-only-in-winter/6228)
**Author:** [@Lorina](https://forum.livingwitherythromelalgia.org/u/Lorina)\ **Replies:** 2\ **Last updated:** [October 23, 2023, 5:02pm UTC](https://forum.livingwitherythromelalgia.org/t/em-symptoms-but-only-in-winter/6228 "2023-10-23T17:02:40Z")
Hello! My partner is experiencing severe EM symptoms that came on this winter and last winter but disappeared almost completely in the summer for 6 months. This has been the trend for about 3 years, getting worse each y… --- ## [This could be my last post - Mom Passed away](https://forum.livingwitherythromelalgia.org/t/this-could-be-my-last-post-mom-passed-away/5939)
**Author:** [@watchman](https://forum.livingwitherythromelalgia.org/u/watchman)\ **Replies:** 3\ **Last updated:** [January 10, 2023, 10:21pm UTC](https://forum.livingwitherythromelalgia.org/t/this-could-be-my-last-post-mom-passed-away/5939 "2023-01-10T22:21:54Z")
Okay this could be my last post but I may look into the boards from time to time. I’m not going to give away any details regarding who we are as that is a violation of TOS. But I will give some general news about my mo… --- ## [New to the forum](https://forum.livingwitherythromelalgia.org/t/new-to-the-forum/5890)
**Author:** [@Hannahdiane1999](https://forum.livingwitherythromelalgia.org/u/Hannahdiane1999)\ **Replies:** 7\ **Last updated:** [April 15, 2022, 12:29pm UTC](https://forum.livingwitherythromelalgia.org/t/new-to-the-forum/5890 "2022-04-15T12:29:54Z")
Hi, i’m Hannah and im female 22 living in sheffield england i have just been diagnosed with EM.I’ve been dealing with the pain of EM since i was a kid but i’ve only just been diagnosed with it. It started when i was litt… --- ## [Successful Sympathectomy for EM](https://forum.livingwitherythromelalgia.org/t/successful-sympathectomy-for-em/5861)
**Author:** [@elle](https://forum.livingwitherythromelalgia.org/u/elle)\ **Replies:** 1\ **Last updated:** [March 21, 2022, 5:00am UTC](https://forum.livingwitherythromelalgia.org/t/successful-sympathectomy-for-em/5861 "2022-03-21T05:00:33Z")
To anyone who has had endoscopic thoracic sympathectomy for erythromelalgia and had success, could you please share the details of your story? Did your redness and swelling go down along with the pain? Did the redness an… --- ## [Looking for advice - new to EM - Can anyone help](https://forum.livingwitherythromelalgia.org/t/looking-for-advice-new-to-em-can-anyone-help/5402)
**Author:** [@PLewis](https://forum.livingwitherythromelalgia.org/u/PLewis)\ **Replies:** 6\ **Last updated:** [May 2, 2021, 5:38am UTC](https://forum.livingwitherythromelalgia.org/t/looking-for-advice-new-to-em-can-anyone-help/5402 "2021-05-02T05:38:32Z")
Hi everyone; what a privilege it is to share this with people who are struggling like me with EM; I am so new to this and would welcome your advice. Briefly, this is my synopsis: Feet became bad in November 2019. Got wo… --- ## [Breast Augmentation (Breast Implant Illness)](https://forum.livingwitherythromelalgia.org/t/breast-augmentation-breast-implant-illness/5261)
**Author:** [@elle](https://forum.livingwitherythromelalgia.org/u/elle)\ **Replies:** 3\ **Last updated:** [December 11, 2020, 2:30am UTC](https://forum.livingwitherythromelalgia.org/t/breast-augmentation-breast-implant-illness/5261 "2020-12-11T02:30:23Z")
Hi everyone. I am considering undergoing a breast augmentation with silicone implants. I have been doing a lot of research about BII (breast implant illness) and found that some women suddenly experience autoimmune disor… --- ## [Daughter unable to walk](https://forum.livingwitherythromelalgia.org/t/daughter-unable-to-walk/5087)
**Author:** [@PaMom](https://forum.livingwitherythromelalgia.org/u/PaMom)\ **Replies:** 10\ **Last updated:** [September 19, 2020, 1:42am UTC](https://forum.livingwitherythromelalgia.org/t/daughter-unable-to-walk/5087 "2020-09-19T01:42:24Z")
Hi again from Philadelphia. My daughter is waiting to get approved for the site but loves the outreach and advice. She wonders if anyone else has flares that were so bad they couldn’t walk. She is trying to get away fro… --- ## [Erythromelalgia and Pregnancy Question?](https://forum.livingwitherythromelalgia.org/t/erythromelalgia-and-pregnancy-question/5011)
**Author:** [@Renegade](https://forum.livingwitherythromelalgia.org/u/Renegade)\ **Replies:** 1\ **Last updated:** [August 4, 2020, 12:54pm UTC](https://forum.livingwitherythromelalgia.org/t/erythromelalgia-and-pregnancy-question/5011 "2020-08-04T12:54:11Z")
Hello! I’m getting ready to have children in the next few years, and I’m wondering if anyone has insight into how EM affects pregnancy. My doctor has no idea, and basically said she just wants to treat issues as they com… --- ## [A comprehensive study of EM](https://forum.livingwitherythromelalgia.org/t/a-comprehensive-study-of-em/4901)
**Author:** [@goatballs](https://forum.livingwitherythromelalgia.org/u/goatballs)\ **Replies:** 0\ **Last updated:** [June 3, 2020, 2:30am UTC](https://forum.livingwitherythromelalgia.org/t/a-comprehensive-study-of-em/4901 "2020-06-03T02:30:09Z")
summer\_2009\_EM\_survey.pdf (3.3 MB) --- ## [Alcohol, can anyone drink?](https://forum.livingwitherythromelalgia.org/t/alcohol-can-anyone-drink/3833)
**Author:** [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Replies:** 13\ **Last updated:** [April 4, 2020, 1:50am UTC](https://forum.livingwitherythromelalgia.org/t/alcohol-can-anyone-drink/3833 "2020-04-04T01:50:21Z")
Hey guys. I have a mild form of EM, which means no pain, no burning, only redness/warmth and a bit swelling veins when it flares. But is one thing I am curious about, and thats alcohol. Havent tried to drink it since I… --- ## [New here- 28 and suffering](https://forum.livingwitherythromelalgia.org/t/new-here-28-and-suffering/4731)
**Author:** [@webby](https://forum.livingwitherythromelalgia.org/u/webby)\ **Replies:** 4\ **Last updated:** [March 8, 2020, 1:19am UTC](https://forum.livingwitherythromelalgia.org/t/new-here-28-and-suffering/4731 "2020-03-08T01:19:52Z")
hi everyone, I’m 28 years old and I was “quietly” diagnosed in 2012 with dermatomyositis by my old rheumatologist, meaning it was written in my medical notes and I never was informed until about 2 years ago. I stopped s… --- ## [Can you recommend a specialist in the Scotland/UK/India?](https://forum.livingwitherythromelalgia.org/t/can-you-recommend-a-specialist-in-the-scotland-uk-india/2662)
**Author:** [@Jacob97](https://forum.livingwitherythromelalgia.org/u/Jacob97)\ **Replies:** 12\ **Last updated:** [March 3, 2020, 12:01pm UTC](https://forum.livingwitherythromelalgia.org/t/can-you-recommend-a-specialist-in-the-scotland-uk-india/2662 "2020-03-03T12:01:00Z")
Hi everyone, I haven’t been diagnosed with EM yet, instead I have been diagnosed with Raynaud’s by two doctors. But after finding out about EM and reading about all the various symptoms and with its link to Raynaud’s, I… --- ## [EM cure, have u tried this?](https://forum.livingwitherythromelalgia.org/t/em-cure-have-u-tried-this/3756)
**Author:** [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Replies:** 2\ **Last updated:** [February 5, 2019, 6:51pm UTC](https://forum.livingwitherythromelalgia.org/t/em-cure-have-u-tried-this/3756 "2019-02-05T18:51:03Z")
Hey! I found a really interesting cure on a EM-group on Facebook today. Its a guy who cured his EM totally, without any meds. Step by step downbelow. This looks quite sick, and really really interresting. Have anyone els… --- ## [My EM Controlled](https://forum.livingwitherythromelalgia.org/t/my-em-controlled/3728)
**Author:** [@Rg1](https://forum.livingwitherythromelalgia.org/u/Rg1)\ **Replies:** 0\ **Last updated:** [January 29, 2019, 3:37pm UTC](https://forum.livingwitherythromelalgia.org/t/my-em-controlled/3728 "2019-01-29T15:37:41Z")
I would like to share my story to give some hope to others.My EM came on suddenly in 2006 at the age of 43 in both hands and feet and was so severe I could not leave home and no longer work.I was like most I sought help … --- ## [Genital Erythromelalgia need your advice please :(](https://forum.livingwitherythromelalgia.org/t/genital-erythromelalgia-need-your-advice-please/3328)
**Author:** [@Dave000](https://forum.livingwitherythromelalgia.org/u/Dave000)\ **Replies:** 6\ **Last updated:** [December 10, 2018, 4:15pm UTC](https://forum.livingwitherythromelalgia.org/t/genital-erythromelalgia-need-your-advice-please/3328 "2018-12-10T16:15:52Z")
Hello Everyone, I am a little worried and a little confused. I really do apologize if this statement is a little graphic. But I would really love your advice and please inform me if you have heard of these types of symp… --- ## [Chronic pain center](https://forum.livingwitherythromelalgia.org/t/chronic-pain-center/3630)
**Author:** [@Cherry](https://forum.livingwitherythromelalgia.org/u/Cherry)\ **Replies:** 17\ **Last updated:** [November 13, 2018, 10:24pm UTC](https://forum.livingwitherythromelalgia.org/t/chronic-pain-center/3630 "2018-11-13T22:24:24Z")
i’m currently taking nothing to treat my EM now. off the effexor, gaba and carbamazepine my burning has honestly lessened. it has spread to almost everywhere but i am less sensitive to my triggers. my bigger problem no… --- ## [Does EM worsen over time?](https://forum.livingwitherythromelalgia.org/t/does-em-worsen-over-time/3384)
**Author:** [@leosinho](https://forum.livingwitherythromelalgia.org/u/leosinho)\ **Replies:** 26\ **Last updated:** [September 27, 2018, 11:21pm UTC](https://forum.livingwitherythromelalgia.org/t/does-em-worsen-over-time/3384 "2018-09-27T23:21:14Z")
Just wondering what others’ experience is as I am a newbie to this disease.