Having a severe flare in my face, ears, back of neck. Even my back is burning. The pain spike in both legs has been high all day. Erythromelalgia is not fun. Solidarity with all who deal with chronic pain. Here's what my left ear looks like. #ChronicPain #Erythromelalgia #ChronicIllness #RareDisease #DistractMe #SmallFiberNeuropathy #MentalHealth #Depression #ChronicFatigue #ComplexRegionalPainSyndrome #MightyTogether
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Do you ever wake up feeling bad? I mean, worse than you usually do when you wake up? That's where I was this morning, after an erythromelalgia flare that kept me awake past 2:00 AM. And my body is still in significant pain. This affirmation was helpful. Knowing I'm seen somehow lightens my burden just a little.
So, I've texted some family members and friends to see how they're doing and to let them know I care. My chronic pain is still significant, but I can take my mind off myself for just a moment and check in on other people. It may be just momentary, but this is a way to turn my pain inside out.
So, I truly want you to know that I care about you. How are you feeling today? And what do you do when you feel worse than you usually do? Do you have any physical, mental, or spiritual practices that help you? Thank you!
#ChronicPain #ChronicIllness #RareDisease #InvisibleIllness #Erythromelalgia #SmallFiberNeuropathy #MentalHealth #Depression #Anxiety #Loneliness #ChronicFatigue #MyalgicEncephalomyelitis #ComplexRegionalPainSyndrome #MightyTogether #CheerMeOn #CheckInWithMe #DistractMe
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Me: Yesterday, I posted about not pushing myself, and people on The Mighty said they had similar experiences. So, don't push yourself.
Also Me: Ignore all that and push yourself beyond your limits, even if it means possibly getting stuck out alone, missing your meds time, and spending the rest of the day recovering.
#ChronicPain #ChronicIllness #Disability #Erythromelalgia #MentalHealth #Anxiety #Depression #RareDisease #MightyTogether #SmallFiberNeuropathy #ComplexRegionalPainSyndrome #ChronicFatigue
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Over the weekend, I wanted to get out and go to church. So, I decided I would just power through my illness and make it there. As soon as I got dressed, a flare hit, and I was unable to go. I've tried to just "power through" more than once, and it never ends well. My body won't let me "power through," and it's important for me to accept this reality. Funny thing is that I know it, but occasionally I try it again. It happens less and less, but the results are always the same. I have to listen to my body. What's your experience with trying to "power through?" #ChronicIllness #ChronicPain #RareDisease #Erythromelalgia #MentalHealth #MightyTogether #Disability #ComplexRegionalPainSyndrome #Depression #Anxiety
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51 comments
My legs hurt. They hurt when I woke up. They've hurt ever since then. They hurt when I finally went to sleep after 1:00 AM. Oh, yeah. I also had an erythromelalgia flare in my feet when I went to sleep. Pain is my constant companion. Yes, I have meds, have talked with my doctors, have tried cannabis and CBD, meditate, pray, use distraction, use PMR, use breathing techniques, and have participated in nearly every known pain management regimen. The pain never goes away. Distraction techniques today include watching Formula 1, soccer, and college basketball. And, of course, petting my cat. What do you do to help relieve chronic pain? Bless you.
#ChronicPain #ChronicIllness #Erythromelalgia #RareDisease #DistractMe #MentalHealth #Depression #Anxiety #Fibromyalgia #ComplexRegionalPainSyndrome #ChronicFatigue #MightyTogether #MightyPets #Disability #SmallFiberNeuropathy
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I visited an oral surgeon today. (That's a long story that I'll save for another time.) The immediate issue was with the disability parking spots. The landscaping of the building and parking lot required the designated spaces to be farther away than the non-disability spots because the closer spots had a little hill to navigate. Neither was a good option. I was using my cane and not my wheelchair, so I took the closer place. Did I mention it was snowing? After an hour-long appointment, I literally wanted to cut my legs off, but I have to navigate that wet little hill to get back to my car. This kind of thing is not unique, and it's certainly not the worst one I've encountered. It's almost like the architects and contractors never think about these things. What difficulties to access in public places have you encountered?
#ChronicPain #ChronicIllness #SmallFiberNeuropathy #Disability #Erythromelalgia #RareDisease #MentalHealth #ComplexRegionalPainSyndrome #MightyTogether #DistractMe
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Yesterday evening around 6:00, I had an erythromelalgia flare in both feet. It went down after a couple hours. Then, around 10:00, a "double flare" hit in my hands hands and feet. Are you kidding me? That one lasted until well after 1:00 AM. That's exhausting and discouraging, especially because I always wake up with a flare in my feet and pain in my legs. Currently, my hands are starting to flare, and I know my feet (and ears) will flare again as the day goes on--likely more than once. I'm supposed to meet with some friends for an hour or so this evening, but the chances of that happening are low.
Even so, I start each day with welcoming the day as it comes.
I'm not alone in this. What is your experience of dealing with experiencing pain-upon-pain and knowing that it's going to happen again and again?
#ChronicPain #ChronicIllness #RareDisease #erthyromelalgia #SmallFiberNeuropathy #Depression #Anxiety #MentalHealth #MightyTogether #DistractMe #Fibromyalgia #ComplexRegionalPainSyndrome #ChronicFatigue #MyalgicEncephalomyelitis #Insomnia #Arthritis #InvisibleIllness
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Having an extreme pain day. I'm taking my meds and using the skills I've learned. But this is an immersion in chronic pain. It might be sparked by a precipitous drop in the barometric pressure. What do you do when your pain or illness spikes? How do you get through those times? #ChronicPain #ChronicIllness #MentalHealth #Erythromelalgia #SmallFiberNeuropathy #ComplexRegionalPainSyndrome #MightyMinute #DistractMe #MightyTogether #Depression #Anxiety #RareDisease
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