chronicregionalpainsyndrome

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Highly recommend the Netflix documentary Take Care of Maya about a young woman w/ CRPS and the aftermath of her medical "care":

Chronic Regional Pain Syndrome aka CRPS is yet another poorly understood, pernicious illness that disproportionately impacts women and girls. In this case, it led to an utter fucking nightmare for both the patient, Maya, and her family. The film expertly depicts the hell that results when physicians don't believe the patient and wrongfully dismiss debilitating physical symptoms.

It might hit too close to home, so proceed accordingly.

I've been too ill to write here for the past two weeks--the symptoms from the M.E., cancer, and heart attack are currently wreaking utter havoc w/in my body. So maybe it was an odd choice to watch Take Care of Maya tonight. On the other hand, I believe information is power and that it's valuable to keep learning how and why a medical system that's ethically and legally obligated to help instead too often harms so many of us:

www.youtube.com/watch

Day 45 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ThyroidCancer #Cancer #CRPS #chronicregionalpainsyndrome #ChronicIllness #HeartAttack

Take Care of Maya | Official Trailer | Netflix

When 10-year-old Maya Kowalski was admitted to Johns Hopkins All Children’s Hospital in 2016, nothing could have prepared her or her family for what they wer...
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The Pain Scale and Electric Scorpion Jellyfish

You know what's awesome? When your rare disease and chronic illness that cause chronic pain begin to manifest new symptoms! That's what's awesome.

No, not really.

Having erythromelalgia and small fiber neuropathy for so many years, I've gotten adept at recognizing subtle changes in and types of pain. Burning, aches, red hot pins shoved into the tips of my toes.

Not sure where that goes on the traditional 1-10 pain scale.

Recently, the flares in my feet and back (yes, gentle reader, my in back too) have provided a new pain: Stinging like a sunburn zapped by a school of electrified scorpion jellyfish.

I'm not sure where that goes on the pain scale, but maybe we could add it.

(Image: The Psychedelic Jellyfish by David S. Soriano. Source: WikimediaCommons)

#Erythromelalgia #ChronicIllness #ChronicPain #RareDisease #MightyTogether #MentalHealth #PainScale #SmallFiberNeuropathy #PeripheralNeuropathy #chronicregionalpainsyndrome #MyCondition #Disability #Fibromyalgia #Depression #Anxiety

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Longest pain flare?

What's the longest amount of time your pain/disease has "flared" before going back to your previous levels? My longest, prior to this, was about 2 months. Now I'm going into the 4th month. At what point is it no longer a flare and instead a horrible new level of disease? #ChronicPain #ChronicIllness #chronicregionalpainsyndrome #Migraine #Endometriosis #Depression

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How do you get your doctor to consider you may also have CRPS along with already diagnosed FMS? That there are two separate things going on?

#Fibromyalgia #chronicregionalpainsyndrome

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