# General **URL:** https://forum.livingwitherythromelalgia.org/c/general/10.md?page=1 [Latest](https://forum.livingwitherythromelalgia.org/latest.md) · [Categories](https://forum.livingwitherythromelalgia.org/categories.md) · [Tags](https://forum.livingwitherythromelalgia.org/tags.md) **Page:** 2 --- ## [Tips for exercise and symptom control](https://forum.livingwitherythromelalgia.org/t/tips-for-exercise-and-symptom-control/421)
**Author:** [@leelee28](https://forum.livingwitherythromelalgia.org/u/leelee28)\ **Replies:** 8\ **Last updated:** [April 20, 2024, 2:35am UTC](https://forum.livingwitherythromelalgia.org/t/tips-for-exercise-and-symptom-control/421 "2024-04-20T02:35:42Z")
Whenever I exercise, I get flares in both my hands and my feet. Although uncomfortable, I can deal with my hands (I discovered a few years ago, prior to my diagnosis, that if I hold them in a certain type of fist, it rea… --- ## [Asking for opinions](https://forum.livingwitherythromelalgia.org/t/asking-for-opinions/6263)
**Author:** [@Lnyland](https://forum.livingwitherythromelalgia.org/u/Lnyland)\ **Replies:** 1\ **Last updated:** [February 6, 2024, 2:56pm UTC](https://forum.livingwitherythromelalgia.org/t/asking-for-opinions/6263 "2024-02-06T14:56:24Z")
I want to ask people who have EM if they think I may have it and if so what should I do. I am a heathy 53 year old with hypothyroidism and migraines but both are managed well. In my teens my feet started turning purple w… --- ## [To much b6 in my blood work](https://forum.livingwitherythromelalgia.org/t/to-much-b6-in-my-blood-work/6252)
**Author:** [@Judith164](https://forum.livingwitherythromelalgia.org/u/Judith164)\ **Replies:** 2\ **Last updated:** [January 18, 2024, 3:03am UTC](https://forum.livingwitherythromelalgia.org/t/to-much-b6-in-my-blood-work/6252 "2024-01-18T03:03:10Z")
I have a very high level of b6 in my blood I don’t take extra vitamins has anyone esle with em have this thank you --- ## [Looking Your Stories - How has this site benefited you?](https://forum.livingwitherythromelalgia.org/t/looking-your-stories-how-has-this-site-benefited-you/6253)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [January 9, 2024, 2:21am UTC](https://forum.livingwitherythromelalgia.org/t/looking-your-stories-how-has-this-site-benefited-you/6253 "2024-01-09T02:21:12Z")
@trust\_level\_0 Dear Erythomelalgia Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living… --- ## [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… --- ## [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… --- ## [Lipoprotein A](https://forum.livingwitherythromelalgia.org/t/lipoprotein-a/6232)
**Author:** [@shannons](https://forum.livingwitherythromelalgia.org/u/shannons)\ **Replies:** 0\ **Last updated:** [October 21, 2023, 1:12am UTC](https://forum.livingwitherythromelalgia.org/t/lipoprotein-a/6232 "2023-10-21T01:12:53Z")
Has anyone ever heard anything about elevated lipoprotein A? Read something that elevated lipoprotein A helps contribute to EM. My son has Em really bad. He has never been tested for this but I do know that I have elev… --- ## [ADHD, sensory integration issues and erythromelalgia](https://forum.livingwitherythromelalgia.org/t/adhd-sensory-integration-issues-and-erythromelalgia/1001)
**Author:** [@Jame](https://forum.livingwitherythromelalgia.org/u/Jame)\ **Replies:** 20\ **Last updated:** [July 2, 2023, 5:38am UTC](https://forum.livingwitherythromelalgia.org/t/adhd-sensory-integration-issues-and-erythromelalgia/1001 "2023-07-02T05:38:18Z")
Does anyone else here see a connection between these. If EM is such a rare disorder, why are so many kids with the above symptoms/diagnosis having EM? Our Doctor says it is not related to the meds. Never thought my child… --- ## [Medication that works](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445)
**Author:** [@herdfan](https://forum.livingwitherythromelalgia.org/u/herdfan)\ **Replies:** 44\ **Last updated:** [June 23, 2023, 9:38pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445 "2023-06-23T21:38:08Z")
This is my first post and it's a very positive one. After 4 years and trying many different therapies and drugs. I can say I have found relief. I went to Cleveland Clinic where I saw Dr. Bartholomew in the vascular dep… --- ## [My history of EM](https://forum.livingwitherythromelalgia.org/t/my-history-of-em/6126)
**Author:** [@TaniaSinger](https://forum.livingwitherythromelalgia.org/u/TaniaSinger)\ **Replies:** 9\ **Last updated:** [June 22, 2023, 4:36am UTC](https://forum.livingwitherythromelalgia.org/t/my-history-of-em/6126 "2023-06-22T04:36:17Z")
Hello!! Its the first time i am posting. I am Tania, a 24 years spanish girl, i have been 8 years suffering from EM, it almost took my life away. I lost my teenager years and my young years, that seem the most important.… --- ## [Preparing for Your Doctor’s Appointment](https://forum.livingwitherythromelalgia.org/t/preparing-for-your-doctor-s-appointment/5994)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 1\ **Last updated:** [June 22, 2023, 4:21am UTC](https://forum.livingwitherythromelalgia.org/t/preparing-for-your-doctor-s-appointment/5994 "2023-06-22T04:21:51Z")
Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been do… --- ## [Bobs protocol](https://forum.livingwitherythromelalgia.org/t/bobs-protocol/3871)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 28\ **Last updated:** [June 22, 2023, 4:16am UTC](https://forum.livingwitherythromelalgia.org/t/bobs-protocol/3871 "2023-06-22T04:16:55Z")
Hello everyone ! I hope today brings a pain free day! I posted Bob’s Protocol video of five of us giving testimonies etc. about it under EM treatment. I know there were a lot of you here that were waiting for the vide… --- ## [EM and other neurological disorders](https://forum.livingwitherythromelalgia.org/t/em-and-other-neurological-disorders/6145)
**Author:** [@elle](https://forum.livingwitherythromelalgia.org/u/elle)\ **Replies:** 3\ **Last updated:** [June 14, 2023, 6:56pm UTC](https://forum.livingwitherythromelalgia.org/t/em-and-other-neurological-disorders/6145 "2023-06-14T18:56:35Z")
I wanted to come on here to talk about the connections between erythromelalgia and a lot of more commonly known and understood disorders. I think sometimes the medical field gives so many labels that it separates communi… --- ## [7 Things to Look for When Choosing a Doctor](https://forum.livingwitherythromelalgia.org/t/7-things-to-look-for-when-choosing-a-doctor/6172)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [May 18, 2023, 10:28pm UTC](https://forum.livingwitherythromelalgia.org/t/7-things-to-look-for-when-choosing-a-doctor/6172 "2023-05-18T22:28:11Z")
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know eve… --- ## [For everybody who has nerve pain and dont know why](https://forum.livingwitherythromelalgia.org/t/for-everybody-who-has-nerve-pain-and-dont-know-why/6166)
**Author:** [@Andy](https://forum.livingwitherythromelalgia.org/u/Andy)\ **Replies:** 1\ **Last updated:** [May 14, 2023, 9:32am UTC](https://forum.livingwitherythromelalgia.org/t/for-everybody-who-has-nerve-pain-and-dont-know-why/6166 "2023-05-14T09:32:34Z")
hi, if any of u have pain in ur feet like i do and have no idea why or what to do about it i want to make a suggestion that u go have an MRI done on ur spine. weather it be the whole thing or in my case i threw my lower … --- ## [Spotlight on Our ModSupport Member: Sharon a.k.a Stoney](https://forum.livingwitherythromelalgia.org/t/spotlight-on-our-modsupport-member-sharon-a-k-a-stoney/6162)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [April 26, 2023, 6:52am UTC](https://forum.livingwitherythromelalgia.org/t/spotlight-on-our-modsupport-member-sharon-a-k-a-stoney/6162 "2023-04-26T06:52:36Z")
Sascha Gallardo – June 4, 2020 Providing a safe and supportive community for patients is our top priority at Ben’s Friends. We want members to freely ask questions, share opinions, and express emotions without having t… --- ## [Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MD](https://forum.livingwitherythromelalgia.org/t/spotlight-ben-s-friends-former-intern-dr-melissa-jones-md/6157)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [April 13, 2023, 5:29am UTC](https://forum.livingwitherythromelalgia.org/t/spotlight-ben-s-friends-former-intern-dr-melissa-jones-md/6157 "2023-04-13T05:29:34Z")
Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they… --- ## [Diagnosed with CRPS](https://forum.livingwitherythromelalgia.org/t/diagnosed-with-crps/6140)
**Author:** [@Kats](https://forum.livingwitherythromelalgia.org/u/Kats)\ **Replies:** 2\ **Last updated:** [March 27, 2023, 3:59am UTC](https://forum.livingwitherythromelalgia.org/t/diagnosed-with-crps/6140 "2023-03-27T03:59:00Z")
It’s been years since I’ve been on here but I felt bad just vanishing like I did. In 2020 I was finally diagnosed with crps (complex regional pain syndrome) I’m not sure how or if it relates to EM in anyway but I will sa… --- ## [Low blood pressure! Experiences? Anyone on meds for it?](https://forum.livingwitherythromelalgia.org/t/low-blood-pressure-experiences-anyone-on-meds-for-it/5936)
**Author:** [@LibbyK](https://forum.livingwitherythromelalgia.org/u/LibbyK)\ **Replies:** 11\ **Last updated:** [March 11, 2023, 6:57pm UTC](https://forum.livingwitherythromelalgia.org/t/low-blood-pressure-experiences-anyone-on-meds-for-it/5936 "2023-03-11T18:57:30Z")
Hi, everyone. I have been struggling with symptoms from my (always been) low blood pressure - headache, lightheadedness, episodes of sudden pre-syncope, fog, etc. I’ve seen many doctors, but they’ve done a lot of shoul… --- ## [Do you think EM is the most painful and the most terrible disease of the world?](https://forum.livingwitherythromelalgia.org/t/do-you-think-em-is-the-most-painful-and-the-most-terrible-disease-of-the-world/6139)
**Author:** [@TaniaSinger](https://forum.livingwitherythromelalgia.org/u/TaniaSinger)\ **Replies:** 2\ **Last updated:** [March 11, 2023, 6:49pm UTC](https://forum.livingwitherythromelalgia.org/t/do-you-think-em-is-the-most-painful-and-the-most-terrible-disease-of-the-world/6139 "2023-03-11T18:49:58Z")
EM destroyed my life and i think i am the only person from Spain that has it. I dont know any disease that is so painful as this one. I feel like i am burning alive, i am completely destroyed. Is EM really the most painf… --- ## [Wheelchair and disability](https://forum.livingwitherythromelalgia.org/t/wheelchair-and-disability/3352)
**Author:** [@Kats](https://forum.livingwitherythromelalgia.org/u/Kats)\ **Replies:** 32\ **Last updated:** [March 10, 2023, 11:06pm UTC](https://forum.livingwitherythromelalgia.org/t/wheelchair-and-disability/3352 "2023-03-10T23:06:29Z")
I’m currently working on getting on disability and getting a wheelchair in which I can elevate my legs when needed. I’d love to hear other’s stories, I myself am going to be working with an attorney and am eagerly waitin… --- ## [Ben’s Friends inks partnership with ClozTalk](https://forum.livingwitherythromelalgia.org/t/ben-s-friends-inks-partnership-with-cloztalk/6138)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [March 9, 2023, 8:35am UTC](https://forum.livingwitherythromelalgia.org/t/ben-s-friends-inks-partnership-with-cloztalk/6138 "2023-03-09T08:35:21Z")
Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs app… --- ## [Rare Disease Diagnosis: Difficulties and Advancements](https://forum.livingwitherythromelalgia.org/t/rare-disease-diagnosis-difficulties-and-advancements/6137)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [March 8, 2023, 2:17am UTC](https://forum.livingwitherythromelalgia.org/t/rare-disease-diagnosis-difficulties-and-advancements/6137 "2023-03-08T02:17:03Z")
Sascha Gallardo – August 31, 2020 Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their symptoms, and then they would be told there is nothing wrong … --- ## [Pain,pain,pain!](https://forum.livingwitherythromelalgia.org/t/pain-pain-pain/333)
**Author:** [@i\_love\_jah](https://forum.livingwitherythromelalgia.org/u/i_love_jah)\ **Replies:** 20\ **Last updated:** [February 28, 2023, 11:22pm UTC](https://forum.livingwitherythromelalgia.org/t/pain-pain-pain/333 "2023-02-28T23:22:35Z")
hey everyone. just out of curiosity, whats the worst part to you all about living wwith EM? --- ## [How Frequent Are Your EM Flares?](https://forum.livingwitherythromelalgia.org/t/how-frequent-are-your-em-flares/392)
**Author:** [@Ellie](https://forum.livingwitherythromelalgia.org/u/Ellie)\ **Replies:** 22\ **Last updated:** [February 28, 2023, 11:18pm UTC](https://forum.livingwitherythromelalgia.org/t/how-frequent-are-your-em-flares/392 "2023-02-28T23:18:37Z")
This is a question of general curiosity that has not been answered for me by the scientific literature. I know that the frequency of flares for people can range from only a few flares a month to being in constant flare.… --- ## [Looking for Ways to cope](https://forum.livingwitherythromelalgia.org/t/looking-for-ways-to-cope/3283)
**Author:** [@Jordy516](https://forum.livingwitherythromelalgia.org/u/Jordy516)\ **Replies:** 10\ **Last updated:** [February 28, 2023, 8:07pm UTC](https://forum.livingwitherythromelalgia.org/t/looking-for-ways-to-cope/3283 "2023-02-28T20:07:47Z")
I started to write this as a reply to our colleague who just went to the Mayo Clinic but i have gone so far off topic that I just posted this as my own post asking for advice. I am perfectly safe- i have three therapist… --- ## [Global Genes’ Rare Daily website features Ben Munoz](https://forum.livingwitherythromelalgia.org/t/global-genes-rare-daily-website-features-ben-munoz/6124)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [February 23, 2023, 8:08am UTC](https://forum.livingwitherythromelalgia.org/t/global-genes-rare-daily-website-features-ben-munoz/6124 "2023-02-23T08:08:37Z")
Sascha Gallardo – September 29, 2020 Ben’s Friends co-founder and chairman, Ben Munoz, was interviewed recently for the Rare Leader, a regular feature of the Global Genes’ Rare Daily website. In the Q&A piece, Ben s… --- ## [Some of Ben’s Friends secrets to maintaining healthy communities](https://forum.livingwitherythromelalgia.org/t/some-of-ben-s-friends-secrets-to-maintaining-healthy-communities/6123)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [February 21, 2023, 3:15am UTC](https://forum.livingwitherythromelalgia.org/t/some-of-ben-s-friends-secrets-to-maintaining-healthy-communities/6123 "2023-02-21T03:15:08Z")
Sascha Gallardo – October 26, 2020 Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are home to the most active communities of AVM survivors… --- ## [What’s Your And? Podcast features Scott Orn](https://forum.livingwitherythromelalgia.org/t/what-s-your-and-podcast-features-scott-orn/6114)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [February 9, 2023, 6:45am UTC](https://forum.livingwitherythromelalgia.org/t/what-s-your-and-podcast-features-scott-orn/6114 "2023-02-09T06:45:55Z")
Sascha Gallardo – November 5, 2020 Ben’s Friends co-founder and board member Scott Orn was featured recently in John Garrett’s podcast. Titled What’s Your And?, the podcast focuses on the guests’ interests or what t… --- ## [Benefits of Having a Rare Disease and Chronic Illness Support Group](https://forum.livingwitherythromelalgia.org/t/benefits-of-having-a-rare-disease-and-chronic-illness-support-group/6110)
**Author:** [@BF\_Writer](https://forum.livingwitherythromelalgia.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [February 6, 2023, 2:00am UTC](https://forum.livingwitherythromelalgia.org/t/benefits-of-having-a-rare-disease-and-chronic-illness-support-group/6110 "2023-02-06T02:00:40Z")
Sascha Gallardo – January 29, 2021 Having a rare or chronic illness can make a person feel isolated and lonely. They may have people who definitely care but they would constantly need to connect with someone who is … [Previous page](https://forum.livingwitherythromelalgia.org/c/general/10.md) [Next page](https://forum.livingwitherythromelalgia.org/c/general/10.md?page=2)