# \#symptoms **URL:** https://forum.livingwitherythromelalgia.org/tag/symptoms/3.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 … --- ## [Foods that don’t trigger](https://forum.livingwitherythromelalgia.org/t/foods-that-don-t-trigger/6585)
**Author:** [@Michelle55](https://forum.livingwitherythromelalgia.org/u/Michelle55)\ **Replies:** 2\ **Last updated:** [January 4, 2026, 6:40am UTC](https://forum.livingwitherythromelalgia.org/t/foods-that-don-t-trigger/6585 "2026-01-04T06:40:33Z")
Hi everyone, What do you guys with EM eat for breakfast lunch and dinner? I’m finding most foods trigger me. Michelle --- ## [Toe affected](https://forum.livingwitherythromelalgia.org/t/toe-affected/6581)
**Author:** [@Rclouviere](https://forum.livingwitherythromelalgia.org/u/Rclouviere)\ **Replies:** 1\ **Last updated:** [December 22, 2025, 10:05pm UTC](https://forum.livingwitherythromelalgia.org/t/toe-affected/6581 "2025-12-22T22:05:08Z")
I’ve been diagnosed with EM. Doctor isn’t 100% positive. I’ve had symptoms for 7 years and I’ve gone to every type of doctor imaginable. Finally a dermatologist thinks it’s EM. I have neuropathy that may be a symptom of … --- ## [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,… --- ## [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… --- ## [Has anyone been prescribed NIFEDIPINE? Did it make your EM symptoms worse?](https://forum.livingwitherythromelalgia.org/t/has-anyone-been-prescribed-nifedipine-did-it-make-your-em-symptoms-worse/5116)
**Author:** [@sierra400](https://forum.livingwitherythromelalgia.org/u/sierra400)\ **Replies:** 8\ **Last updated:** [June 12, 2025, 6:02pm UTC](https://forum.livingwitherythromelalgia.org/t/has-anyone-been-prescribed-nifedipine-did-it-make-your-em-symptoms-worse/5116 "2025-06-12T18:02:44Z")
After many months and many doctors we think we may have my diagnosis narrowed down to EM. I posted before regarding my swollen red foot, just one foot having symptoms no where else really. The doctors have ruled out CRPS… --- ## [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… --- ## [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… --- ## [Erythromelalgia and Scleroderma any connection?](https://forum.livingwitherythromelalgia.org/t/erythromelalgia-and-scleroderma-any-connection/6318)
**Author:** [@pilgrim55](https://forum.livingwitherythromelalgia.org/u/pilgrim55)\ **Replies:** 4\ **Last updated:** [April 29, 2024, 8:49pm UTC](https://forum.livingwitherythromelalgia.org/t/erythromelalgia-and-scleroderma-any-connection/6318 "2024-04-29T20:49:33Z")
Have been told by several Doctors at the VA that I have erythromelalgia and some have said scleroderma. I looked up both and find there seems to be a connection one to the other. Has anyone heard of this connection? Than… --- ## [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… --- ## [Reactive Hyperaemia ...found on my medical.reports today 13th Dec 2023](https://forum.livingwitherythromelalgia.org/t/reactive-hyperaemia-found-on-my-medical-reports-today-13th-dec-2023/6092)
**Author:** [@anniemitchell60](https://forum.livingwitherythromelalgia.org/u/anniemitchell60)\ **Replies:** 0\ **Last updated:** [January 13, 2023, 1:30pm UTC](https://forum.livingwitherythromelalgia.org/t/reactive-hyperaemia-found-on-my-medical-reports-today-13th-dec-2023/6092 "2023-01-13T13:30:51Z")
Attended GP appointment to ask for further referral about Erythromialgia and Raynauds Due to clinic closed. Was given letter sent to my gp. I did not know this existed until I read it on my.letter. I looked it up on … --- ## [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… --- ## [MEXILETINE reduction](https://forum.livingwitherythromelalgia.org/t/mexiletine-reduction/4768)
**Author:** [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Replies:** 24\ **Last updated:** [September 21, 2021, 7:34am UTC](https://forum.livingwitherythromelalgia.org/t/mexiletine-reduction/4768 "2021-09-21T07:34:06Z")
Five years ago I started mexiletine therapy for erythromelalgia. I’ve written about that here: MEXILETINE, 450mg. (In addition to mexiletine, I also take a once daily extended release propranolol, 60mg.) For the first c… --- ## [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… --- ## [Nodules between knuckles during flair](https://forum.livingwitherythromelalgia.org/t/nodules-between-knuckles-during-flair/5482)
**Author:** [@godschildrenweep](https://forum.livingwitherythromelalgia.org/u/godschildrenweep)\ **Replies:** 2\ **Last updated:** [April 15, 2021, 2:21am UTC](https://forum.livingwitherythromelalgia.org/t/nodules-between-knuckles-during-flair/5482 "2021-04-15T02:21:00Z")
I get these Nodules between my knuckles feel like jelly filled balls. lt feels like my knuckles are spreading apart as they swell and flare too bad for too long. When they really flare up? Has anyone ever experienced th… --- ## [50% redness and pain reduction in my hands and feet!](https://forum.livingwitherythromelalgia.org/t/50-redness-and-pain-reduction-in-my-hands-and-feet/5109)
**Author:** [@Jyandav](https://forum.livingwitherythromelalgia.org/u/Jyandav)\ **Replies:** 8\ **Last updated:** [March 2, 2021, 2:30pm UTC](https://forum.livingwitherythromelalgia.org/t/50-redness-and-pain-reduction-in-my-hands-and-feet/5109 "2021-03-02T14:30:16Z")
Hi ya’ll, I just wanted to share some great news! I started taking a CBD pain blend 5 days ago along with a topical CBD balm and the redness and pain I have in my hands and feet has decreased by about 50%. I have been sk… --- ## [Massive EM flare after Covid? (moderate severity before)](https://forum.livingwitherythromelalgia.org/t/massive-em-flare-after-covid-moderate-severity-before/5363)
**Author:** [@Karyn](https://forum.livingwitherythromelalgia.org/u/Karyn)\ **Replies:** 7\ **Last updated:** [February 17, 2021, 1:10am UTC](https://forum.livingwitherythromelalgia.org/t/massive-em-flare-after-covid-moderate-severity-before/5363 "2021-02-17T01:10:36Z")
Hi all- I have been lurking for years after determining that the strange phenomenon in my hands and feet was EM (and after being ignored by my Rhuematologist when I mentioned my symptoms).I have been diagnosed with prima… --- ## [My EM - is it is? (few doctors in Russia know about EM so I have no official diagnosis)](https://forum.livingwitherythromelalgia.org/t/my-em-is-it-is-few-doctors-in-russia-know-about-em-so-i-have-no-official-diagnosis/5309)
**Author:** [@Vinny](https://forum.livingwitherythromelalgia.org/u/Vinny)\ **Replies:** 37\ **Last updated:** [January 26, 2021, 4:27pm UTC](https://forum.livingwitherythromelalgia.org/t/my-em-is-it-is-few-doctors-in-russia-know-about-em-so-i-have-no-official-diagnosis/5309 "2021-01-26T16:27:06Z")
Hello! Sorry for my poor english. I am from Russia and my symptoms started at 2019 with red hands and soles - sometimes these flares were asymmetrical - only to one hand or to one sole. I have a long history of eatin… --- ## [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… --- ## [Does anyone have days in a row when symptoms are worse?](https://forum.livingwitherythromelalgia.org/t/does-anyone-have-days-in-a-row-when-symptoms-are-worse/4855)
**Author:** [@elle](https://forum.livingwitherythromelalgia.org/u/elle)\ **Replies:** 2\ **Last updated:** [May 15, 2020, 4:11pm UTC](https://forum.livingwitherythromelalgia.org/t/does-anyone-have-days-in-a-row-when-symptoms-are-worse/4855 "2020-05-15T16:11:58Z")
Hi everyone, I was wondering if anyone else has an entire day or multiple days in a row when their symptoms are significantly worse, for no reason. I try to figure out why its happening but my hands get all red puffy an… --- ## [Does anyone else have burning legs?](https://forum.livingwitherythromelalgia.org/t/does-anyone-else-have-burning-legs/4829)
**Author:** [@brookehd](https://forum.livingwitherythromelalgia.org/u/brookehd)\ **Replies:** 1\ **Last updated:** [May 4, 2020, 2:14am UTC](https://forum.livingwitherythromelalgia.org/t/does-anyone-else-have-burning-legs/4829 "2020-05-04T02:14:42Z")
Hi everyone. I’ve been living with EM symptoms my whole life. I have it in my feet, hands and ears. Within the last year or so I’ve been noticing my legs are turning purple when I’m standing for more than a few minutes. … --- ## [MEXILETINE, 450mg](https://forum.livingwitherythromelalgia.org/t/mexiletine-450mg/1185)
**Author:** [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\ **Replies:** 130\ **Last updated:** [May 2, 2020, 3:28pm UTC](https://forum.livingwitherythromelalgia.org/t/mexiletine-450mg/1185 "2020-05-02T15:28:07Z")
It’s been awhile since I posted. In June I started to have regular flaring again, so I decided to seek further medical care. After fighting with my insurance provider, I found a new doctor that prescribed mexiletine. He … --- ## [Can any relate to this? Is this EM or Raynauds? No doctor seems to know](https://forum.livingwitherythromelalgia.org/t/can-any-relate-to-this-is-this-em-or-raynauds-no-doctor-seems-to-know/4777)
**Author:** [@MatthewG](https://forum.livingwitherythromelalgia.org/u/MatthewG)\ **Replies:** 3\ **Last updated:** [April 9, 2020, 12:33am UTC](https://forum.livingwitherythromelalgia.org/t/can-any-relate-to-this-is-this-em-or-raynauds-no-doctor-seems-to-know/4777 "2020-04-09T00:33:08Z")
Hi there. I am a 25 year old male and for around 3 years I have had a number of strange issues. It first began with neurological symptoms (ataxia) which to this day are still undiagnosed. I then began to experience burni… --- ## [Severe itching](https://forum.livingwitherythromelalgia.org/t/severe-itching/148)
**Author:** [@lauraflora1](https://forum.livingwitherythromelalgia.org/u/lauraflora1)\ **Replies:** 22\ **Last updated:** [August 1, 2019, 9:48pm UTC](https://forum.livingwitherythromelalgia.org/t/severe-itching/148 "2019-08-01T21:48:07Z")
I was just wondering if anybody else suffers from severe itching. I have noticed that when I get slightly warm I have been getting horrendous itching on my neck and chest area. It is so bad that i end up clawing at it. C… --- ## [Digestive issues](https://forum.livingwitherythromelalgia.org/t/digestive-issues/3936)
**Author:** [@Alv](https://forum.livingwitherythromelalgia.org/u/Alv)\ **Replies:** 6\ **Last updated:** [May 12, 2019, 11:41am UTC](https://forum.livingwitherythromelalgia.org/t/digestive-issues/3936 "2019-05-12T11:41:22Z")
Hi, I’m experiencing digestive issues, mostly abnormal frequency as well as flatulences. I wonder if any of you is experiencing these symptoms and if you think they might be correlated to worsening of other classical s… [Next page](https://forum.livingwitherythromelalgia.org/tag/symptoms/3.md?match_all_tags=true&page=1&tags%5B%5D=symptoms)