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We are finally getting national attention!#ComplexRegionalPainSyndrome #SmallFiberNeuropathy


UnitedHealthcare Bragged about $8.1 B in profit in 3 mos. made from people who pay them for health coverage. Their money model relies on denying people care–like Rights & Democracy NH member Jenn, who needs the care to manage serious illness.


#careovercost #CRPS #crpsawareness #CRPSWarrior #SFN #SmallFiberNeuropathy #peopleoverprofit

Demand that United Healthcare pay for Jenn’s life-saving treatment

Our friend Jenn Coffey, a member of Rights & Democracy from Manchester, New Hampshire, has spent 20 years of her life providing medical assistance to patients as an EMT and LNA in ambulances and emergency departments alike. Now, she’s in severe need of medical assistance herself but, faces resistance and outright denials from her private health insurance company, United Healthcare. Jenn has a United Healthcare Medicare (dis)Advantage plan. Coffey first got cancer when she was 30 in 2014 and again at 42 and had to undergo a mastectomy and reconstruction at the same time. As a result of her cancer treatments, she now suffers from Complex Regional Pain Syndrome (CRPS) which causes intense pain that has kept her in the hospital for weeks at a time. There is currently no known cure for CRPS, but doctors have found ways to alleviate the pain for patients. Coffey needs ketamine infusions, and low dose naltrexone for her pain and long acting mestinon for vision and mental clarity . But she’s unable to pay for them, and has already sold most of her belongings to be able to pay for some of her treatments. United Healthcare refuses to cover these medications despite them being commonly prescribed to treat pain. “When I worked in medicine, I never imagined not treating a patient. [Someone] needs something, you go get it for them. But now, being on this side, I can’t access the same health care that I worked to get,” Coffey said. As a result of her conditions, she has not been able to work and relies on small SSI disability checks that cannot possibly cover her necessities. Coffey’s rent alone increased $400 last year. “There are treatments and things that can be done, but they’re held away from me by denials from United Healthcare not allowing me to have access to treatments. I have suffered so incredibly that I was in the hospital all the time, every month.” Now Coffey is forced to borrow money and sell more of her belongings to stay alive. United Healthcare, profited $20.1 billion last year alone. Now they are refusing to cover life-saving medical treatments for a policyholder who cannot pay. “If I don’t buy the treatment, I die.” Coffey said.

I'm new here!

Hi, my name is LisaBeyefix. I’m new to The Mighty and look forward to sharing my story. Sept of 2019 I had a simple bunion surgery and as a result CRPS! I read this post about not going to the movies etc and it really spoke to me!

thanks for having me



#PTSD #CRPSWarrior


Try as much as possible to be wholly alive

William Saroyan
Armenian-American writer William Saroyan penned these words in his breakthrough article “The Daring Young Man on the Flying Trapeze,” published in 1934. The quote above is part of a longer, rousing piece of advice that reads like a rallying cry to live life to its fullest: "Try to learn to breathe deeply, really to taste the food when you eat, and when you sleep really to sleep. Try as much as possible to be wholly alive, with all your might, and when you laugh, laugh like hell. And when you get angry, get good and angry. Try to be alive." #PTSD #Depression #Anxiety #significant childhood trauma #CRPSWarrior

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I’m a woman with Multiple Sclerosis for 20 years. I the last 6-7 years, a rare devastating pain developed in my feet. Over the years, the burning, crushing feeling is 24/7. So times it can be ice cold frostbite pain and they look purple. If they are dependent or sun touches them they change in minutes to red swollen feet #CRPSWarrior #central painsyndrome#ChronicIllness  I am a wife, mother, and a Physician Assistant.  Yes, a healthcare provider has more trouble navigating this mysterious disease!  I’ve struggled getting to see specialists across the country.  No answers!  Today I am posting my first thought to share because I want to help someone to try to help myself. I miss the person I was


CRPS - What kind of doctor is best?

Pain doctor is a joke, asked about all the muscle cramps in that foot/leg said drink more water, has no clue what CRPS is or what is does to me. Why do I need a separated doctor for muscle cramps? I am so frustrated I stopped going! I do not get enough relief from pain meds to justify the cost. #CRPSWarrior #ComplexRegionalPainSyndrometreatm #ComplexRegionalPainSyndrome #Complex #Fibromyalgiabattle

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If you need a devotional for Lent- or just because.💜💜💜 #ChronicPain #CRPSWarrior #RheumatoidArthritis #Fibromyalgia

A 40 day devotional, available on Amazon.
Grace, Songs, Scripture, and Spoons.
Written by a spoonie for spoonies. 💜💙💜💙💜


Creeping dread before bedtime?

Does anyone feel a sense of creeping dread before bed? Like knowing oh here we go again, am I going to not sleep at all and then sleep all day tomorrow, am I going to sleep really well but then all day tomorrow too. I hate not being able to sleep and it's become such a concern around 7pm thinking oh no it'll be time for bed soon #Insomnia #CRPSWarrior

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The #CRPS ice block

I just sat down to read a book and I felt it creeping in. I call it “ice block arm” - when my arm becomes ice from the inside due to #CRPS . Doesn’t matter if I’m wearing a sweater (although bare arms can trigger it too), it still feels like I plunged my arm into a subzero ice bath. And then the ache comes on.

Warm bath, heated blanket, going to sleep - these are all options. But sometimes I’d just like to finish reading my book.

That’s one night as a #CRPSWarrior .


Mixed feelings: moving into an assisted living facility/adult family home due to severe, undertreated CRPS

Hello everyone, I joined this app today. Thank you, God, for giving me the strength to reach out to others.

In less than a day and a half, I'll be moving into an assisted living "adult family home" with 24/7 caregiver support.

I have severe CRPS along with several of its eccentric health issues. I'm 31 years old.

Lord, I pray I will always put my faith and trust in you to lead me through life's challenges.