# Bens Friends **URL:** https://forum.livingwitherythromelalgia.org/c/bens-friends/23.md?page=2 [Latest](https://forum.livingwitherythromelalgia.org/latest.md) · [Categories](https://forum.livingwitherythromelalgia.org/categories.md) · [Tags](https://forum.livingwitherythromelalgia.org/tags.md) **Page:** 3 --- ## [This Week's News](https://forum.livingwitherythromelalgia.org/t/this-weeks-news/3897)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 18, 2019, 9:09pm UTC](https://forum.livingwitherythromelalgia.org/t/this-weeks-news/3897 "2019-04-18T21:09:08Z")
Having a Rare Disease or Condition Changes Everything. All the time. Much sooner than expected, I found myself too tired to continue my life as I planned it. My original doctor didn’t think there was much wrong with me.… --- ## [Mother has marker for LUPUS](https://forum.livingwitherythromelalgia.org/t/mother-has-marker-for-lupus/3887)
**Author:** [@Cherry](https://forum.livingwitherythromelalgia.org/u/Cherry)\ **Replies:** 3\ **Last updated:** [April 10, 2019, 5:49pm UTC](https://forum.livingwitherythromelalgia.org/t/mother-has-marker-for-lupus/3887 "2019-04-10T17:49:12Z")
i’ve had EM since 3. on and off various places of mg body. it’s only been recent 5 years i have raynauds and such bad systematic swelling that i can’t walk… as well as isaac syndrome (muscle spasms and cramps on legs… n… --- ## [A Good Day of Struggle](https://forum.livingwitherythromelalgia.org/t/a-good-day-of-struggle/3884)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [April 6, 2019, 2:11pm UTC](https://forum.livingwitherythromelalgia.org/t/a-good-day-of-struggle/3884 "2019-04-06T14:11:20Z")
Will you be near Washington DC on Friday April 12th? Ben’s Friends is having a Meet 'n Greet. The Ben’s Friends team will be in the National Harbor area (Oxon Hills) on April 12th. Would you like to join us at The Flami… --- ## [Upcoming Events](https://forum.livingwitherythromelalgia.org/t/upcoming-events/3866)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 31, 2019, 7:35pm UTC](https://forum.livingwitherythromelalgia.org/t/upcoming-events/3866 "2019-03-31T19:35:46Z")
Will you be near Washington DC on Friday April 12th? Ben’s Friends is having a Meet 'n Greet. The Ben’s Friends team will be in the National Harbor area (Oxon Hills) on April 12th. Would you like to join us at The Flami… --- ## [3 rare disorders](https://forum.livingwitherythromelalgia.org/t/3-rare-disorders/3820)
**Author:** [@harrietrov](https://forum.livingwitherythromelalgia.org/u/harrietrov)\ **Replies:** 12\ **Last updated:** [March 25, 2019, 3:13am UTC](https://forum.livingwitherythromelalgia.org/t/3-rare-disorders/3820 "2019-03-25T03:13:08Z")
Hi all. I am writing to all of you because I was just dxed w my third rare disorder. I have cervical Dystonia, EM and now silent sinus syndrome. I have no idea why I would have all three but wondering if having one rare… --- ## [Properly Addressing Chronic Illness](https://forum.livingwitherythromelalgia.org/t/properly-addressing-chronic-illness/3846)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 18, 2019, 8:27pm UTC](https://forum.livingwitherythromelalgia.org/t/properly-addressing-chronic-illness/3846 "2019-03-18T20:27:11Z")
You’re invited to Ben’s Friendly Get Together! Will you be near Washington, DC on Friday evening, April 12th? Well then, you’re invited to join Ben (our founder) and Friends for a casual get together. Location will be s… --- ## [Got the call for Lidocaine infusions](https://forum.livingwitherythromelalgia.org/t/got-the-call-for-lidocaine-infusions/3819)
**Author:** [@Cherry](https://forum.livingwitherythromelalgia.org/u/Cherry)\ **Replies:** 7\ **Last updated:** [March 15, 2019, 1:02pm UTC](https://forum.livingwitherythromelalgia.org/t/got-the-call-for-lidocaine-infusions/3819 "2019-03-15T13:02:11Z")
i closed my file at the chronic pain clinic yesterday after being told they were only offering me a referral to a psychiatrist twice! i closed my file just yesterday and got a call this morning that the anesthesiologist… --- ## [Whoopsie-Daisy!](https://forum.livingwitherythromelalgia.org/t/whoopsie-daisy/3825)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 10, 2019, 7:16pm UTC](https://forum.livingwitherythromelalgia.org/t/whoopsie-daisy/3825 "2019-03-10T19:16:51Z")
Whoopsie-Daisy! As we’re sure you noticed, an article “Help, I Need Somebody…” went out to the communities a few weeks ago. Although it was very well received, it did accidentally generate an abundance of email for some… --- ## [Help, I Need Somebody, Not Just Anybody](https://forum.livingwitherythromelalgia.org/t/help-i-need-somebody-not-just-anybody/3802)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 2\ **Last updated:** [February 23, 2019, 7:57pm UTC](https://forum.livingwitherythromelalgia.org/t/help-i-need-somebody-not-just-anybody/3802 "2019-02-23T19:57:29Z")
From: Merl on TBI Having a rare disease or condition can take over your life. It can also limit your entire outlook to the point that you lose all perspective. That is, if we allow it. In my former life I was a living … --- ## [Support: give as good as you get!](https://forum.livingwitherythromelalgia.org/t/support-give-as-good-as-you-get/3762)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [February 7, 2019, 7:39pm UTC](https://forum.livingwitherythromelalgia.org/t/support-give-as-good-as-you-get/3762 "2019-02-07T19:39:34Z")
Here at Ben’s Friends, we live by “To get support, give support!”. When you’ve got a rare disease or chronic condition, life can be tough, as if it’s not tough enough already! We know: most of us here have at least one o… --- ## [Bens Friends 2018 Report](https://forum.livingwitherythromelalgia.org/t/bens-friends-2018-report/3745)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [February 1, 2019, 6:42pm UTC](https://forum.livingwitherythromelalgia.org/t/bens-friends-2018-report/3745 "2019-02-01T18:42:37Z")
The following New communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben’s Friends Patient communities and may be of interest to our existing mem… --- ## [Possibility of EM spreading](https://forum.livingwitherythromelalgia.org/t/possibility-of-em-spreading/3357)
**Author:** [@Arzbeauty](https://forum.livingwitherythromelalgia.org/u/Arzbeauty)\ **Replies:** 10\ **Last updated:** [August 31, 2018, 7:01pm UTC](https://forum.livingwitherythromelalgia.org/t/possibility-of-em-spreading/3357 "2018-08-31T19:01:42Z")
Hello everyone…I was wondering if anyone elses EM has spread. I’ve had EM (primary) in both my feet for almost 3 years. I’ve noticed it has been slowly crawling up my ankles to mid calves. The burning red swollen pain ha… --- ## [MRI ordered](https://forum.livingwitherythromelalgia.org/t/mri-ordered/3233)
**Author:** [@Cherry](https://forum.livingwitherythromelalgia.org/u/Cherry)\ **Replies:** 15\ **Last updated:** [August 7, 2018, 7:11pm UTC](https://forum.livingwitherythromelalgia.org/t/mri-ordered/3233 "2018-08-07T19:11:03Z")
i saw a neurologist who did a nerve test. it came back fine showing no signs of small fiber neuropathy (who knew a quick test could rule that out so easily) he said he was familiar with EM and stated i should just keep … --- ## [Health math!](https://forum.livingwitherythromelalgia.org/t/health-math/3392)
**Author:** [@Cherry](https://forum.livingwitherythromelalgia.org/u/Cherry)\ **Replies:** 7\ **Last updated:** [July 8, 2018, 6:15pm UTC](https://forum.livingwitherythromelalgia.org/t/health-math/3392 "2018-07-08T18:15:48Z")
so my doctor told me about heart math. it’s a way of doing biofeedback. so… if i can control my paresympathetic system i should better be able to reduce flares? the biofeedback should help me use my sympathetic i’ve alr… --- ## [Massachusetts State Awareness Day Video](https://forum.livingwitherythromelalgia.org/t/massachusetts-state-awareness-day-video/3318)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 0\ **Last updated:** [June 4, 2018, 6:23pm UTC](https://forum.livingwitherythromelalgia.org/t/massachusetts-state-awareness-day-video/3318 "2018-06-04T18:23:20Z")
Hello Everyone ! Here is the video from our state awareness day. Governor Baker declared the month of May to be EM Awareness month! It was a successful day. Enjoy ! --- ## [Handicap plate for EM?](https://forum.livingwitherythromelalgia.org/t/handicap-plate-for-em/1844)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 4\ **Last updated:** [May 29, 2018, 5:40am UTC](https://forum.livingwitherythromelalgia.org/t/handicap-plate-for-em/1844 "2018-05-29T05:40:11Z")
Hello everyone ! I had a question. Has anyone ever thought of or been able to get a handicap plate so you can get quickly from your car into a store, etc. during the hot months or for those that live year round in wa… --- ## [EM video to share for May awareness](https://forum.livingwitherythromelalgia.org/t/em-video-to-share-for-may-awareness/3277)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 0\ **Last updated:** [May 23, 2018, 4:55pm UTC](https://forum.livingwitherythromelalgia.org/t/em-video-to-share-for-may-awareness/3277 "2018-05-23T16:55:38Z")
Here is a May awareness video if you would like to share and spread awareness. All the Best, Paula --- ## [Speech for state awareness day](https://forum.livingwitherythromelalgia.org/t/speech-for-state-awareness-day/3171)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 2\ **Last updated:** [April 25, 2018, 9:19pm UTC](https://forum.livingwitherythromelalgia.org/t/speech-for-state-awareness-day/3171 "2018-04-25T21:19:19Z")
Good afternoon my EM family. As you know I have kept all of you in mind while preparing for our state awareness day. We all share the same struggles and our goals are the same. We need awareness, funding, research and a … --- ## [Mass Awareness Day State House](https://forum.livingwitherythromelalgia.org/t/mass-awareness-day-state-house/3113)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 2\ **Last updated:** [March 20, 2018, 9:17pm UTC](https://forum.livingwitherythromelalgia.org/t/mass-awareness-day-state-house/3113 "2018-03-20T21:17:05Z")
Hello Massachusetts Residents: If you haven’t already registered for the state awareness day, you do need to do so asap. I need the EM community to attend. I cannot do this alone. It is VERY IMPORANT that the legislato… --- ## [Massachusetts State Awareness Day](https://forum.livingwitherythromelalgia.org/t/massachusetts-state-awareness-day/2996)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 0\ **Last updated:** [February 10, 2018, 9:21pm UTC](https://forum.livingwitherythromelalgia.org/t/massachusetts-state-awareness-day/2996 "2018-02-10T21:21:29Z")
ATTENTION: Massachusetts residents living with Erythromelalgia, the time has come to register for the first state awareness day “It’s Time to Put the Fire Out” at the Massachusetts State House on May 9, 2018, from 11:00 … --- ## [Massachusetts residents awareness day](https://forum.livingwitherythromelalgia.org/t/massachusetts-residents-awareness-day/2915)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 0\ **Last updated:** [January 10, 2018, 8:22pm UTC](https://forum.livingwitherythromelalgia.org/t/massachusetts-residents-awareness-day/2915 "2018-01-10T20:22:55Z")
Hello everyone ! Any Massachusetts residents here? Our awareness day has been scheduled for Wed. May 9 from 11-12 at the State House in Boston, MA. You are not required to do anything but we do request your presence ! … --- ## [Support bens friends](https://forum.livingwitherythromelalgia.org/t/support-bens-friends/1709)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [June 1, 2016, 5:56pm UTC](https://forum.livingwitherythromelalgia.org/t/support-bens-friends/1709 "2016-06-01T17:56:40Z")
Ben’s Friends operates with very low overhead, allowing us to keep our focus on patients and caregivers and providing them the information and support they need to navigate their disease or condition. Every donation matt… --- ## [Happy New Years - New communities from Bens Friends](https://forum.livingwitherythromelalgia.org/t/happy-new-years-new-communities-from-bens-friends/2889)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 6\ **Last updated:** [January 1, 2018, 11:08am UTC](https://forum.livingwitherythromelalgia.org/t/happy-new-years-new-communities-from-bens-friends/2889 "2018-01-01T11:08:08Z")
Your Team has been HARD at work and through the support of our generous donors we are able to bring some new communities on line. Our hope is through 2018 we will be able to bring on at least 2 new communities per month … --- ## [A Message From Ben](https://forum.livingwitherythromelalgia.org/t/a-message-from-ben/2874)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 21, 2017, 5:26pm UTC](https://forum.livingwitherythromelalgia.org/t/a-message-from-ben/2874 "2017-12-21T17:26:05Z")
As a 501c3 nonprofit, we depend on our generous donors to pay the bills. They donate because they want to make a difference in people’s lives. If your community has made a difference in your life, our donors would love … --- ## [Bens Friends Apps for mobile Devices](https://forum.livingwitherythromelalgia.org/t/bens-friends-apps-for-mobile-devices/2108)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 4\ **Last updated:** [October 13, 2017, 10:20pm UTC](https://forum.livingwitherythromelalgia.org/t/bens-friends-apps-for-mobile-devices/2108 "2017-10-13T22:20:50Z")
\[image\] \[image\] \[image\] --- ## [High School Football Varsity game awareness day!](https://forum.livingwitherythromelalgia.org/t/high-school-football-varsity-game-awareness-day/2652)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 6\ **Last updated:** [October 6, 2017, 10:24pm UTC](https://forum.livingwitherythromelalgia.org/t/high-school-football-varsity-game-awareness-day/2652 "2017-10-06T22:24:27Z")
Exciting news !!! My brother Coach Chris Stamoulis and my nephew Kyle Stamoulis who plays on the varsity football team at St. Thomas Aquinas High School has approached the coaches and the football team to have an awarene… --- ## [Football team awareness this Saturday!](https://forum.livingwitherythromelalgia.org/t/football-team-awareness-this-saturday/2656)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 2\ **Last updated:** [September 14, 2017, 5:42pm UTC](https://forum.livingwitherythromelalgia.org/t/football-team-awareness-this-saturday/2656 "2017-09-14T17:42:39Z")
--- ## [Explaining importance of sharing](https://forum.livingwitherythromelalgia.org/t/explaining-importance-of-sharing/2633)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 0\ **Last updated:** [August 24, 2017, 7:54pm UTC](https://forum.livingwitherythromelalgia.org/t/explaining-importance-of-sharing/2633 "2017-08-24T19:54:49Z")
Hi everyone I have posted a few things for the awareness I am doing for Em and trying to promote funding and research and much needed help for all of us. You may share what you like but when you share just make sure it… --- ## [Methuen woman with rare condition seeks to raise awareness](https://forum.livingwitherythromelalgia.org/t/methuen-woman-with-rare-condition-seeks-to-raise-awareness/2631)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 0\ **Last updated:** [August 24, 2017, 7:51pm UTC](https://forum.livingwitherythromelalgia.org/t/methuen-woman-with-rare-condition-seeks-to-raise-awareness/2631 "2017-08-24T19:51:42Z")
--- ## [My awareness video ! Please like share help](https://forum.livingwitherythromelalgia.org/t/my-awareness-video-please-like-share-help/2586)
**Author:** [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Replies:** 3\ **Last updated:** [August 24, 2017, 7:36pm UTC](https://forum.livingwitherythromelalgia.org/t/my-awareness-video-please-like-share-help/2586 "2017-08-24T19:36:21Z")
Hi everyone. I’m back. Been busy. Trying to get a campaign going for funding, research and yes a cure !!! Much needed help. Isn’t it time we stop burning? I am putting myself out there. It is causing anxiety but I am… [Previous page](https://forum.livingwitherythromelalgia.org/c/bens-friends/23.md?page=1) [Next page](https://forum.livingwitherythromelalgia.org/c/bens-friends/23.md?page=3)