Erythromelalgia

Create a new post for topic
Join the Conversation on
Erythromelalgia
2.8K people
0 stories
434 posts
About Erythromelalgia Show topic details
Explore Our Newsletters
What's New in Erythromelalgia
All
Stories
Posts
Videos
Latest
Trending
Post

I'm new here!

Hi, my name is ImaginativeOwl671. I'm here because I have been looking at the signs and symptoms of Erythromelalgia and I think I have found what has been my problem for years now. Anyone else here suffer with this?

#MightyTogether

Post
See full photo

PEDIATRIC SURVEY

#Erythromelalgia

Boston's Children Hospital need your help in promoting a new project on pediatric erythromelalgia.

THE PEDIATRIC ERYTHROMELALGIA SURVEY

Have your say on the future of research on pediatric erythromelalgia (EM)!

If you are (or used to be):

· A kid or teen with EM;

· A family member of a kid or teen with EM; or

· A healthcare provider for kids or teens with EM

We want to hear from you!

Go to redcap.link/pedempsp , or scan the QR code below with your mobile phone.

(edited)
Post

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

Most common user reactions 4 reactions 4 comments
Post

Fatigue

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

Most common user reactionsMost common user reactionsMost common user reactions 79 reactions 17 comments
Post

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

Most common user reactionsMost common user reactions 20 reactions 8 comments
Post

Meltdown🤯

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

Most common user reactionsMost common user reactionsMost common user reactions 6 reactions 4 comments
Post
See full photo

THE ERYTHROMELALGIA WARRIORS

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.

Most common user reactions 3 reactions 1 comment
Post

Stuck

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

Most common user reactions 13 reactions 6 comments