Join the Conversation on
2.8K people
0 stories
429 posts
About Erythromelalgia
Explore Our Newsletters
What's New in Erythromelalgia

Should I pursue an hEDS diagnosis?

Hi! I am 18, and I have had ME/CFS for 3 years, and Erythromelagia for 1/2? years. I very much suspect hEDS or HSD, as I have a lot of symptoms consistent with connective tissue stuff. My skin is quite stretchy, the skin above my eyelids is quite thin you can see all the veins, I have subluxations, I often can’t get my joints to “sit right” and I have all sorts of “party tricks” with hypermobile knees, shoulders, fingers, wrists, ankles, toes, and my neck range of motion is so insane it looks (AND FEELS) like it’s gonna fall off my shoulders (is that craniocevical instability? Who knows!). There is also, naturally, the fact I’m in fluctuating levels of pain every minute of every day, plus orthostatic intolerance :) My joints have deteriorated in the last couple years, with the subluxations being new. So my question is basically is this smth I should go to the doctor with and be like I think I have this, or am I going to look silly. You guys probably know more about this than my doctors anyway haha. If im gonna be medically gaslit I want to at least be confident I’m right! Thoughts are appreciated on this- Tysm!

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Erythromelalgia #EhlersDanlosSyndrome

4 reactions 4 comments


Tired all the time nothing works have no energy hard to do anything even basic. Beyond the pain it's biggest issue prevent me from living. What do I do??#Erythromelalgia #Anxiety #chronic illness

79 reactions 17 comments

Knee subluxations?

I have ME/CFS, erythromelalgia, and what I strongly suspect is hEDS. With that being said, my knees, mostly the right one, subluxate almost daily, and even when it doesn’t come out I sometimes have to “crack it” for lack of better word, in which I straighten my knee as much as it’ll go and it clicks and feels better, for it to feel right. Often when having my legs bent (I.e. sitting on my knees) is when it subluxates. My question is how rare are knee subluxations actually? When I look it up it only shows patella (kneecaps) subluxations and said that real knee ones are quite rare. I’m uncertain because my kneecap looks normal when I know my knee is out partially. To click it back in, I have to straighten it for it to pop back in, and sometimes push it back and like hyperextend it to get it back in fully.

My question is how do I know if it’s my kneecap or my knee, and does anyone have advice on how I can keep it in the freaking socket. Thank you!! 🫶🫶🫶
#Hypermobility #EhlersDanlosSyndrome #MyalgicEncephalomyelitis #Erythromelalgia

20 reactions 8 comments


Had a breakdown took it out on everyone there so much pressure I'm overwhelmed. How do you deal??? 😱🤯😫😳🤐😬😶. #Erythromelalgia #Anxiety #Depression

6 reactions 4 comments
See full photo



• 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).


• A world where there is greater understanding of EM and where the hope of a cure becomes a reality.

3 reactions 1 comment


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

13 reactions 6 comments

I survive the day at school, and only start to feel really sick after I get to relax

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

8 reactions 2 comments
See full photo


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? #erythromelalgiawarriors #Erythromelalgia #EMWarriors

1 reaction