# Blog **URL:** https://forum.livingwitherythromelalgia.org/c/general/blog/5.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 --- ## [Discrimination and EM](https://forum.livingwitherythromelalgia.org/t/discrimination-and-em/1383)
**Author:** [@Annette1](https://forum.livingwitherythromelalgia.org/u/Annette1)\ **Replies:** 2\ **Last updated:** [August 5, 2013, 5:07pm UTC](https://forum.livingwitherythromelalgia.org/t/discrimination-and-em/1383 "2013-08-05T17:07:26Z")
Thank you for your welcome , I have suffered fom Em since 2004 and have tried everything over the years to alleviate my symtoms. However with trial and error I have manage to tolerate my life with EM by a heavy reliance … --- ## [Help](https://forum.livingwitherythromelalgia.org/t/help/1388)
**Author:** [@Myself](https://forum.livingwitherythromelalgia.org/u/Myself)\ **Replies:** 1\ **Last updated:** [August 1, 2013, 12:35am UTC](https://forum.livingwitherythromelalgia.org/t/help/1388 "2013-08-01T00:35:32Z")
How to you send responses? --- ## [Severe dermatitis on hands](https://forum.livingwitherythromelalgia.org/t/severe-dermatitis-on-hands/1389)
**Author:** [@Cindy\_Lou](https://forum.livingwitherythromelalgia.org/u/Cindy_Lou)\ **Replies:** 0\ **Last updated:** [July 24, 2013, 3:35am UTC](https://forum.livingwitherythromelalgia.org/t/severe-dermatitis-on-hands/1389 "2013-07-24T03:35:51Z")
Do any of you have severe dermatitis on your hands from the heat and sweating? My hands are a dried up mess and nothing I have tried has been helpful. They are continually wrinkled (like they've been in water all day...w… --- ## [Assembling The Team](https://forum.livingwitherythromelalgia.org/t/assembling-the-team/1387)
**Author:** [@Trekker](https://forum.livingwitherythromelalgia.org/u/Trekker)\ **Replies:** 0\ **Last updated:** [June 20, 2013, 6:56pm UTC](https://forum.livingwitherythromelalgia.org/t/assembling-the-team/1387 "2013-06-20T18:56:32Z")
Anytime a victory is sought, one must examine the best (and shortest) strategy for achieving the win. Do you have the right people in place? Are the "players" the best you can find? Is winning everyone's ultimate goal. I… --- ## [Preparing For An Appointment With A New Doctor](https://forum.livingwitherythromelalgia.org/t/preparing-for-an-appointment-with-a-new-doctor/1386)
**Author:** [@Ben\_Munoz](https://forum.livingwitherythromelalgia.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [April 27, 2013, 11:34am UTC](https://forum.livingwitherythromelalgia.org/t/preparing-for-an-appointment-with-a-new-doctor/1386 "2013-04-27T11:34:47Z")
Finding a new doctor can be difficult, and very scary. Being prepared can make the whole experience much easier on you, and on the new doctor. Remember that the doctor works for YOU, and if you are uncomfortable, then… --- ## [My iloprost honeymoon is over](https://forum.livingwitherythromelalgia.org/t/my-iloprost-honeymoon-is-over/1385)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 0\ **Last updated:** [April 23, 2013, 5:26pm UTC](https://forum.livingwitherythromelalgia.org/t/my-iloprost-honeymoon-is-over/1385 "2013-04-23T17:26:13Z")
Since having iloprost treatment on 25th February I had 3 weeks of total remission of symptoms and then the flares started to gradually return during the next 3 to 4 weeks. The pain was not bad during this time but now … --- ## [My first treatment with iloprost infusion at the Royal Free Hospital (London)](https://forum.livingwitherythromelalgia.org/t/my-first-treatment-with-iloprost-infusion-at-the-royal-free-hospital-london/1380)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 1\ **Last updated:** [March 9, 2013, 8:18pm UTC](https://forum.livingwitherythromelalgia.org/t/my-first-treatment-with-iloprost-infusion-at-the-royal-free-hospital-london/1380 "2013-03-09T20:18:16Z")
.On 25th February 2013 I began a weeks treatment with iloprost infusions at the Royal Free hospital in London (PITU wards on the second floor. I was a bit apprehensive not knowing what the outcome would be but it has be… --- ## [Freezing hands](https://forum.livingwitherythromelalgia.org/t/freezing-hands/1379)
**Author:** [@liz2](https://forum.livingwitherythromelalgia.org/u/liz2)\ **Replies:** 1\ **Last updated:** [February 9, 2013, 12:07am UTC](https://forum.livingwitherythromelalgia.org/t/freezing-hands/1379 "2013-02-09T00:07:54Z")
And it's here again, cold as \*\*\*\* outside (well inside the house it's not much better, we have central heating and uhhh it's hard to make more than 16°C here inside now). Btw I fell down into the snow on a walk yesterday… --- ## [EM on Wiki](https://forum.livingwitherythromelalgia.org/t/em-on-wiki/1378)
**Author:** [@liz2](https://forum.livingwitherythromelalgia.org/u/liz2)\ **Replies:** 0\ **Last updated:** [January 23, 2013, 1:24pm UTC](https://forum.livingwitherythromelalgia.org/t/em-on-wiki/1378 "2013-01-23T13:24:50Z")
I guess it's proly nothing new to most of you, but theres nice artice about EM on wikipedia, I remember few years ago there wasnt anything like that there, in fact there werent too many info on net about EM at all. Makes… --- ## [Thanks to One and all](https://forum.livingwitherythromelalgia.org/t/thanks-to-one-and-all/1377)
**Author:** [@Tom](https://forum.livingwitherythromelalgia.org/u/Tom)\ **Replies:** 0\ **Last updated:** [January 19, 2013, 8:45pm UTC](https://forum.livingwitherythromelalgia.org/t/thanks-to-one-and-all/1377 "2013-01-19T20:45:27Z")
Thank you for the responses I got to my post but if the red colored feet is a prerequisite of Erythromelalgia it must not be what I had. When I read the article about the disorder all my symptoms matched the disorder but… --- ## [The elephant in the room started to talk](https://forum.livingwitherythromelalgia.org/t/the-elephant-in-the-room-started-to-talk/1376)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 1\ **Last updated:** [January 15, 2013, 11:41am UTC](https://forum.livingwitherythromelalgia.org/t/the-elephant-in-the-room-started-to-talk/1376 "2013-01-15T11:41:35Z")
A few weeks ago before Christmas I had a little dance with the devil on the subject of suicide. At home in the middle of the afternoon after a long run of sleep deprivation I was feeling very low and in my usual place o… --- ## [I hate winter!](https://forum.livingwitherythromelalgia.org/t/i-hate-winter/1375)
**Author:** [@liz2](https://forum.livingwitherythromelalgia.org/u/liz2)\ **Replies:** 0\ **Last updated:** [January 3, 2013, 2:56pm UTC](https://forum.livingwitherythromelalgia.org/t/i-hate-winter/1375 "2013-01-03T14:56:11Z")
Just wanted to type few words. Winter sucks. I underwent sympatectomy in october 2011. Was told the effect should be permanent for feet but no guarantee for hands. So it seems it's back for the hands. Not as bad as befor… --- ## [Help from a Spinal Cord Stimulator](https://forum.livingwitherythromelalgia.org/t/help-from-a-spinal-cord-stimulator/1374)
**Author:** [@Little\_Sister](https://forum.livingwitherythromelalgia.org/u/Little_Sister)\ **Replies:** 0\ **Last updated:** [December 31, 2012, 3:48am UTC](https://forum.livingwitherythromelalgia.org/t/help-from-a-spinal-cord-stimulator/1374 "2012-12-31T03:48:43Z")
Does anyone currently have a Spinal Cord Stimulator (SCS) for help with the pain, burning, and other symptoms in your legs or feet? Or, has anyone participated in the 5-day trial with the SCS before it is implanted? It h… --- ## [Waiting for sleep](https://forum.livingwitherythromelalgia.org/t/waiting-for-sleep/1371)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 6\ **Last updated:** [December 20, 2012, 5:44pm UTC](https://forum.livingwitherythromelalgia.org/t/waiting-for-sleep/1371 "2012-12-20T17:44:23Z")
The rain outside is pouring, my husband's upstairs snoring, It's 3am and I have yet to sleep, The pills they aren't a'working, they're job they are a'shirking, I'm so fed up it makes me want to weep. My feet are full… --- ## [Follow on blog re my visit to the Royal Free Hospital](https://forum.livingwitherythromelalgia.org/t/follow-on-blog-re-my-visit-to-the-royal-free-hospital/1369)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 2\ **Last updated:** [December 20, 2012, 5:37pm UTC](https://forum.livingwitherythromelalgia.org/t/follow-on-blog-re-my-visit-to-the-royal-free-hospital/1369 "2012-12-20T17:37:13Z")
I'll try not to be too long winded but can't promise. This is just as much for my benefit in keeping track of my EM as well as hoping others might gain some information from it. I started the Losartan on the 14th Septem… --- ## [You have to see the funny side..!](https://forum.livingwitherythromelalgia.org/t/you-have-to-see-the-funny-side/1372)
**Author:** [@lauraflora1](https://forum.livingwitherythromelalgia.org/u/lauraflora1)\ **Replies:** 1\ **Last updated:** [December 19, 2012, 11:13pm UTC](https://forum.livingwitherythromelalgia.org/t/you-have-to-see-the-funny-side/1372 "2012-12-19T23:13:46Z")
http://media.beta.photobucket.com/image/erythromelalgia/JovialGnome/Philip%20Bailey/P8213192.jpg --- ## [Facebook help](https://forum.livingwitherythromelalgia.org/t/facebook-help/1370)
**Author:** [@Lauren](https://forum.livingwitherythromelalgia.org/u/Lauren)\ **Replies:** 0\ **Last updated:** [November 10, 2012, 5:04pm UTC](https://forum.livingwitherythromelalgia.org/t/facebook-help/1370 "2012-11-10T17:04:05Z")
Hi there, If any of you lovely people are on Facebook I created my own Facebook page- Erythromelalgial- A helping hand .. I just created it today so it's empty lol! But I created it for help, knowledge, personal help to … --- ## [There is a Scalpel-wielding, Napalm-spreading, Sadistic Gnome Tyrant in Between my Toes](https://forum.livingwitherythromelalgia.org/t/there-is-a-scalpel-wielding-napalm-spreading-sadistic-gnome-tyrant-in-between-my-toes/1368)
**Author:** [@NiceGuyDanny](https://forum.livingwitherythromelalgia.org/u/NiceGuyDanny)\ **Replies:** 0\ **Last updated:** [October 30, 2012, 9:26am UTC](https://forum.livingwitherythromelalgia.org/t/there-is-a-scalpel-wielding-napalm-spreading-sadistic-gnome-tyrant-in-between-my-toes/1368 "2012-10-30T09:26:33Z")
For HIM, Night Time, Is the, Right Time. For HIM, He don't want me walking For HIM, HE is only there to make me miserable FOR HIM, I HAVE A WEAPON FOR ME FOR ME FOR ME FOR ME FOR ME FOR ME FOR ME FOR ME FOR ME I hav… --- ## [Hot and cold](https://forum.livingwitherythromelalgia.org/t/hot-and-cold/1364)
**Author:** [@Lauren](https://forum.livingwitherythromelalgia.org/u/Lauren)\ **Replies:** 1\ **Last updated:** [October 23, 2012, 12:32am UTC](https://forum.livingwitherythromelalgia.org/t/hot-and-cold/1364 "2012-10-23T00:32:13Z")
Hi everyone, was just wondering, besides EM obvious areas and EM obvious symptoms how people react to hot and cold. My body as a whole, if I get warm it's OTT warm, the sweats dripping from me like I'm in a shower, I f… --- ## [Genetic testing](https://forum.livingwitherythromelalgia.org/t/genetic-testing/1367)
**Author:** [@lauraflora1](https://forum.livingwitherythromelalgia.org/u/lauraflora1)\ **Replies:** 1\ **Last updated:** [October 21, 2012, 9:04pm UTC](https://forum.livingwitherythromelalgia.org/t/genetic-testing/1367 "2012-10-21T21:04:08Z")
I am really relieved to have my genetic testing results back. I have secondary EM which (as far as I know) means that my gorgeous daughter isn't going to be at risk of getting it..! Phew.. Hopefully I will be lucky enoug… --- ## [1st appointment at Royal Free Hospital - London - 13th September 2012](https://forum.livingwitherythromelalgia.org/t/1st-appointment-at-royal-free-hospital-london-13th-september-2012/1366)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 7\ **Last updated:** [October 17, 2012, 8:11pm UTC](https://forum.livingwitherythromelalgia.org/t/1st-appointment-at-royal-free-hospital-london-13th-september-2012/1366 "2012-10-17T20:11:28Z")
I attended The Rheumatology Department at the Royal Free after being referred by my own GP. Wasn't sure what the outcome would be but I was very pleasantly surprised at the efficiency and courtesy shown to me throughou… --- ## [Feeling alive](https://forum.livingwitherythromelalgia.org/t/feeling-alive/1365)
**Author:** [@lauraflora1](https://forum.livingwitherythromelalgia.org/u/lauraflora1)\ **Replies:** 4\ **Last updated:** [September 27, 2012, 7:05pm UTC](https://forum.livingwitherythromelalgia.org/t/feeling-alive/1365 "2012-09-27T19:05:24Z")
I am starting to feel really good (if you can see past the pain) since coming off all my medication. I am feeling positve, happier and weirdly healthier than I have in a long long time. Fingers crossed this feeling lasts… --- ## [Rash with EM](https://forum.livingwitherythromelalgia.org/t/rash-with-em/1363)
**Author:** [@Tammy](https://forum.livingwitherythromelalgia.org/u/Tammy)\ **Replies:** 3\ **Last updated:** [September 25, 2012, 2:44am UTC](https://forum.livingwitherythromelalgia.org/t/rash-with-em/1363 "2012-09-25T02:44:48Z")
Ok I am wondering if anyone gets a rash when they have episodes of fluff up? I have EM on my ears but often experience a rash does this happen to anyone else? --- ## [Diagnosis](https://forum.livingwitherythromelalgia.org/t/diagnosis/1362)
**Author:** [@Rachee\_Rache](https://forum.livingwitherythromelalgia.org/u/Rachee_Rache)\ **Replies:** 2\ **Last updated:** [August 23, 2012, 5:35pm UTC](https://forum.livingwitherythromelalgia.org/t/diagnosis/1362 "2012-08-23T17:35:56Z")
Well, maybe I don't have Lupus afterall. I had 21 more vials of blood drawn yesterday. I also had upper and lower arterial doppler, so now I wait for the results. My vascular disease specialist did diagnosis me with EM a… --- ## [Old dog, new tricks](https://forum.livingwitherythromelalgia.org/t/old-dog-new-tricks/1358)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 1\ **Last updated:** [August 19, 2012, 12:28pm UTC](https://forum.livingwitherythromelalgia.org/t/old-dog-new-tricks/1358 "2012-08-19T12:28:00Z")
Had a fall 14th June and broke my left wrist which required surgery involving plates and screws to put things back together. Fortunately I am right handed. I was most apprehensive about being kept in hospital for three … --- ## [A New Life](https://forum.livingwitherythromelalgia.org/t/a-new-life/1359)
**Author:** [@Mike](https://forum.livingwitherythromelalgia.org/u/Mike)\ **Replies:** 2\ **Last updated:** [August 19, 2012, 12:10pm UTC](https://forum.livingwitherythromelalgia.org/t/a-new-life/1359 "2012-08-19T12:10:45Z")
Greetings, The past 3 months have been a wonderful beginning to rest of my life. I love my prosthetic leg and get better and stronger using it everyday. I use crutches when leaving the house; however I practice using o… --- ## [Cymbalta/Duloxitine - reason why I didn't take it](https://forum.livingwitherythromelalgia.org/t/cymbalta-duloxitine-reason-why-i-didnt-take-it/1361)
**Author:** [@tillyp](https://forum.livingwitherythromelalgia.org/u/tillyp)\ **Replies:** 0\ **Last updated:** [August 15, 2012, 4:51pm UTC](https://forum.livingwitherythromelalgia.org/t/cymbalta-duloxitine-reason-why-i-didnt-take-it/1361 "2012-08-15T16:51:33Z")
I was prescribed Cymbalta on 6th July. Before trying it I weaned myself off Amiltriptyline which I had been taking for some time and which had ceased to help the EM symptoms. Prior to this I had broken my wrist which re… --- ## [A little Help!](https://forum.livingwitherythromelalgia.org/t/a-little-help/1360)
**Author:** [@schineon](https://forum.livingwitherythromelalgia.org/u/schineon)\ **Replies:** 0\ **Last updated:** [July 20, 2012, 3:58pm UTC](https://forum.livingwitherythromelalgia.org/t/a-little-help/1360 "2012-07-20T15:58:24Z")
I have started a regimen of asprin of up to 1300mg a day with minimal relief. I am still continuing to be active with alot of discomfort and many flare ups with the heat and my activity. I don't want to take any medica… --- ## [Official diagnosis!](https://forum.livingwitherythromelalgia.org/t/official-diagnosis/1357)
**Author:** [@Rachee\_Rache](https://forum.livingwitherythromelalgia.org/u/Rachee_Rache)\ **Replies:** 1\ **Last updated:** [June 25, 2012, 8:27pm UTC](https://forum.livingwitherythromelalgia.org/t/official-diagnosis/1357 "2012-06-25T20:27:27Z")
Well, after over a year of dealing with this I FINALLY have an official diagnosis to what is causing my EM and Sjogren's Syndrome (SHOW-grins)...LUPUS! Not "excited" that I have Lupus, but I'm very relieved to finally k… --- ## [May 2012 LivingWithErythromelalgia Community Newsletter](https://forum.livingwitherythromelalgia.org/t/may-2012-livingwitherythromelalgia-community-newsletter/1356)
**Author:** [@Ben\_Munoz](https://forum.livingwitherythromelalgia.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [May 25, 2012, 3:49pm UTC](https://forum.livingwitherythromelalgia.org/t/may-2012-livingwitherythromelalgia-community-newsletter/1356 "2012-05-25T15:49:10Z")
Dear Friends and Family of LivingwithErythromelalgia, We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patien… [Previous page](https://forum.livingwitherythromelalgia.org/c/general/blog/5.md?page=1) [Next page](https://forum.livingwitherythromelalgia.org/c/general/blog/5.md?page=3)