small fiber neuropathy

Pain is weird. To help relieve the pain in my legs from small fiber neuropathy, I need to keep weight on them, so I use blankets. However...heat causes my erythromelalgia to flare. So, I'm always monitoring the temperature and in a continual negotiation with my own body. Does this kind of thing happen to anyone else? How do you negotiate with your body? #ChronicPain #ChronicIllness #Erythromelalgia #SmallFiberNeuropathy #ComplexRegionalPainSyndrome #MightyTogether #Depression #Anxiety #MentalHealth

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

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

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

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

Every time I think it's too much and I can't go on, I reflect on how many times I've thought that and look at how far I've come. By the grace of God, I keep going and have made it a lot farther than I could have imagined. My pain and its effects are real, but I keep going. Thanks to all the love and support from family, friends, and people I've met here for all you do. #MightyTogether #ChronicIllness #InvisibleIllness #MentalHealth #Disability #Relationships #ChronicPain #Erythromelalgia #ComplexRegionalPainSyndrome #PTSD #ComplexPosttraumaticStressDisorder #Insomnia #SmallFiberNeuropathy #SuicidalIdeation #Faith #Hope

It's past midnight, which means I'm in the middle of another #Erythromelalgia flare. Every night. For years. My feet are on fire, swollen, and all red. It's torture, and I'm exhausted. There's no way to sleep like this. People think I'm exaggerating when I say this condition is taking years off my life. But the constant high level of pain plus the lack of sleep has a lasting effect. It's hard. Really very hard. #SmallFiberNeuropathy #ChronicPain #ChronicFatigue #MyalgicEncephalomyelitis #Insomnia #MentalHealth #MightyTogether

I had one of the worst flares of my life last night and woke up with a high level of pain this morning. I'm taking my meds, praying and meditating, using distraction and relaxation techniques. Still, it's extremely difficult to deal with all this. How do you do it? What are your most helpful resources or tools to help you deal with your pain? #ChronicPain #ChronicIllness #Erythromelalgia #RareDisease #Anxiety #Depression #selfcare #MentalHealth #SmallFiberNeuropathy #Fibromyalgia

I've been struggling since I was hit with a pain spike in my legs last night. This involves an electric gripping sensation, shaking, spasms. It lasted all night, I woke up with it, and it hasn't gone away yet. It's been over 14 hours so far, plus now I have a flare in both feet and ears. I've taken all my meds and meditated. This is very difficult, and I'm struggling. #Erythromelalgia #SmallFiberNeuropathy #PeripheralNeuropathy #ChronicPain