Complex Regional Pain Syndrome

Me: I think I'll rotate the couch cushions.

Erythromelalgia: Great!

Me: What?

EM: Yeah. We've been waiting for a chance to flare.

Me. But it's just a couple cushions.

EM: That's all we need.

Me: But why does it burn so much?

EM: Because that's what I do.

Me: And the redness?

EM: A lovely splash of color.

Me: Doesn't take much for you to show up.

EM: You're welcome.

#Erythromelalgia #ChronicPain #ChronicIllness #RareDisease #MightyTogether #MentalHealth #Anxiety #Depression #CheerMeOn #MightyPoets #MyCondition #ComplexRegionalPainSyndrome #Disability #Fibromyalgia #PeripheralNeuropathy #SmallFiberNeuropathy #DistractMe

I have to travel to NYC to see my pain mgmt doctor and through attrition I just had another "new" pain mgmt appt today. The doctor was heavily pushing spinal cord stimulators and I have always said no to them. Should I consider it? The CRPS is in both of my hands. Any thoughts? #ComplexRegionalPainSyndrome #spinalcordstimulator #ChronicPain

One of my favorite parts of erythromelalgia is describing my illness and showing people pictures of what my flares look like.

Me: "Electric charged acid in a campfire flowing through my veins."

Friend: "Really?"

Me: Yes. Here are the pics. Do you like the several shades of red and how the purple color gradient in my toes changes from violet to indigo to eggplant?"

Most people are very compassionate, but they're still surprised at the severity of it all. Because who wouldn't be?

How about you? What do people find surprising about your illness and all you deal with?

#ChronicIllness #ChronicPain #Erythromelalgia #Disability #Anxiety #ChronicFatigue #RareDisease #MentalHealth #MightyTogether #ComplexRegionalPainSyndrome #CheerMeOn #MyalgicEncephalomyelitis #PeripheralNeuropathy #SmallFiberNeuropathy

Here's a word of encouragement to you. Yes, YOU! You matter, your concerns matter, your pain matters. It's true that you often get overlooked or are misunderstood. Sometimes you get blamed. You may even feel guilty for feeling like you make things hard for people or "not doing enough." After a while, that gets to be an extra burden to carry. As hard as it all is -- and "hard" barely begins to describe it. More like impossible. I know because it's My experience too.

But here's the thing. You're doing more than your best and you're so much stronger than anyone will even know. You accomplish more by getting out of bed than some people accomplish all day. You're here, and you're doing the impossible. Maybe you need someone to tell you they care, they see you, they understand. Maybe you wonder if anyone cares. Take this as that sign. You matter. I care, and I believe in you. Thank you for being you. Much Love.

#ChronicPain #ChronicIllness #MentalHealth #RareDisease #Depression #Anxiety #FamilyAndFriends #encouragement #Erythromelalgia #CheerMeOn #ComplexRegionalPainSyndrome #Insomnia #PTSD #DistractMe #Fibromyalgia #PeripheralNeuropathy #RareDisease #Disability