Erythromelalgia

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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

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Meltdown🤯

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

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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.

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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

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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

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DO YOU TAKE ANTIDEPRESSANTS AS PAIN MANAGEMENT?

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

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GETTING CALLED LUCKY!

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

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PAIN , PAIN, GO AWAY!!!!!!

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

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