THE ERYTHROMELALGIA WARRIORS
For support and information please contact -
erythromelalgiawarriors@gmail.com
For support and information please contact -
erythromelalgiawarriors@gmail.com
OUR MISSION:
• To empower lives touched by erythromelalgia by facilitating the tools for self-advocacy.
• To advance up-to-date knowledge , raise awareness and educate through a strong social media presence, innovative online campaigns and range of erythromelalgia and erythromelalgia-related resources.
• To develop , produce and distribute free EM-related resources as part of our offline global erythromelalgia awareness campaign and our education/schools project Global Awareness Campaign And Education/Schools Project)
• To help sponsor research and to support and conduct innovative independent/in-house projects through fundraising (Burning for a Cure).
OUR VISION:
• A world where there is greater understanding of EM and where the hope of a cure becomes a reality.
Ever since this happened even with a diagnosis I can't move forward and I can't ever go back to the way it was. I'm trapped stuck. #Erythromelalgia #chronic illness #Anxiety #Depression
Hi, my name is CharlotteE534. I want to find new info
I have ME/CFS, erythromelagia, and symptoms congruent with POTs that come and go. I understand post exertional malaise, ofc I have had that constantly since getting the disease. However, my body has reached a point where I can get through a day of school or through a really stressful week of finals, and I won’t crash until after the stressor (school or having to do responsibilities etc) is gone. Does anybody know how this happens? Does it have to do with adrenaline or cortisol? Is there any reading I can do into this? Thank you! #ChronicFatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PosturalOrthostaticTachycardiaSyndrome #Erythromelalgia
A recent meta-analysis reveals several antidepressants with statistically and clinically significant positive outcomes for pain relief. Tricyclics and SSRI's, for example, can be very helpful in erythromelalgia. Do any antidepressants help your erythromelalgia? www.medcentral.com/pain/antidepressants-for-pain-management-... #erythromelalgiawarriors #Erythromelalgia #EMWarriors
Many erythromelalgia sufferers are unable to work. Has anyone been told that they should consider themselves lucky that they don't have to hold a job down? 🙄#EMWarriors #erythromelalgiawarriors #Erythromelalgia
Don't know about you but I don't want to talk or have anyone near me when I start to flare🔥. I just want my cooling fan, wet towel , my numbing cream and to be alone.#EMWarriors #erythromelalgiawarriors #Erythromelalgia
My name is Michael Ann. I have had erythremia going on eight years and I’ve been active in the Erythromelalgia Warriors for most of that time. I am hoping to be a support and answer questions and help you find which you might need to find on the erythromelalgia warrior site . The site has been a godsend for me, I hope it is for you too.
This is a disorder that we will probably live with for a long time but that doesn’t mean it has to stop us from having a good productive happy lives.
What's the best way to get the word out. Rare disease like erythromelalgia. #chronic illness