Complex Regional Pain Syndrome

Part 1 of 2 In April 2023, we launched a campaign targeting my United Healthcare Medicare (Dis)Advantage Overlords. The goal was to get them to actually pay for my infusion to treat Complex Regional Pain Syndrome and Small Fiber Neuropathy. These infusions keep me from being bedbound. I spent two years locked in a bed. I’m not going to do that again.

For the last five years, I’ve struggled to cover the full cost of my infusions and multiple medications, on top of my AARP Medicare Advantage Walgreens United Healthcare Health Insurance premiums, copays, and coinsurance. Like many, my rent went up last year by $400 all at once. The money had to come from somewhere, and the solution became rationing my infusions.

Organizations helped me to create and share our videos, and a petition. Covering the cost to keep me around. After one or two days, United Healthcare reached out to me. Within a week I had a very excited service coordinator telling me that my infusion was approved! The prior authorization approved an office visit and one hour of an infusion. The doctor’s office was still working on approval for the other three hours of infusion, along with the common medication and fluids needed. My thought process was that I could wait for July to have the infusion. I’ve tried to stay ahead of things, and I tell myself that I can hang in there.

Just weeks away from infusion, and I am suffering. I wanted to make it longer, but it was getting tough. I called to find out about moving up the infusion. I’m told that my doctor’s office can’t get United Healthcare to approve things like normal saline to administer the infusion or even standard vital sign monitoring. They had been trying since we got the last prior authorization.

That means filing another appeal, a formal letter trying to ask United Healthcare employees, with little to no understanding of what we are talking about, permission to get care. My providers have become experts in the rare neuropathic and genetic ailments that have caused me to have cancer twice. They have learned and studied things that they did not learn in med school, where they were told that rare diseases existed, but that’s about it. Now I have to beg people who sit in front of computers, knowing nothing about the medical reasons behind the medicine. They get to approve or deny the life-saving treatments that my providers say I need. I have no choice in any of this.

It’s a horrible thing to have to beg to be worthy of life. As someone with CPTSD, it’s really damn hard. I’ve fought my entire life to have a reason to live. The entirety of my childhood is the equivalent of a novel written by VC Andrews or Margaret Atwood. There’s even a potential chapter by Stephen King. I’ve caught myself in vacant stares into space questioning why my life matters.

Now I have to go back to the insurance company with another appeal to get them to cover everything needed for the infusion and for the correct date. I wrote to my senators, Hassan and Shaheen. I asked them to write a letter on my behalf requesting for this to be reviewed. I was also hoping that there would be a way to fix this permanently so that I don’t have to go through so much fighting. The senators did get more attention, and suddenly I had all these phone calls because they don’t like hearing from United States senators. Things started moving, and it looked like everything would be approved.

Well, that appeal did get approved, but not for the right date. They approved the date the request was filed, not the date of the infusion. How can they approve a treatment to put me under sedation for four hours, and also have me lucid and able to talk with an insurance person on the same day? The new prior authorization had everything that was needed fully approved, so I figured that they just had to fix the date. It seems so simple, right? Guess again.I spent the next couple of weeks trying to get in touch with the same people I had successfully dealt with before. I get voicemail after voicemail, and no one calls me back. But they did process the claim. They didn’t pay the doctor the right rate and denied the vital sign monitoring code as “not substantiate service.” Are you kidding me?! They paid a bit over $200, leaving me with approximately $400 to pay.

I have to message everyone again. I have to say it all over again and beg all over again. It’s a simple mistake. All the insurance has to do is change the damn date! I’m told I need to go through the “process” again. I’m even chastised and accused of not being “willing” to go through “the process.” What the heck have I been doing?! We started in April to get coverage for my July infusion. Now it’s September, and I’m still fighting for my doctor to be paid correctly and for charges not to fall on me.

Take away the infusion and I d

Hi, my name is Cronic300. I'm here because I have been diagnosed with progressive CRPS.

#MightyTogether #ComplexRegionalPainSyndrome

Hi, my name is Sue. I've been diagnosed with CRPS and RSD and I have Rheumatoid Arthritis.

#MightyTogether #RheumatoidArthritis

The weather has been Grey, damp, cold, water and rainy and I Hurt and I I'm exhausted and in pain and I just feel blah, uncomfortable in my own skin#BPD #depre #CRPS #anx

The weather has been Grey, damp, cold, water and rainy and I Hurt and I I'm exhausted and in pain and I just feel blah, uncomfortable in my own skin#BPD #depre #CRPS #anx

Part 1 of 2 America needs to take a play from the United Kingdom’s playbook when it comes to Complex Regional Pain Syndrome (CRPS). Sometimes I think that our healthcare system is too arrogant for its own good. We believe we are the best in the world, and in some things, that might be true. In regard to CRPS, there is room for much-needed improvement.

We have our specialists who have mastered the skills required to help some CRPS patients manage their symptoms, but we fail as a nation to diagnose and prevent the onset of CRPS in the first place.

We should be taking a cue from other countries on how they treat CRPS. It always seems to this writer that we are years behind other nations. We know that early intervention can prevent the spread of CRPS, or even stop its onset. The key is early detection and aggressive treatment. However, before we can even get to treatments, we have to improve awareness and recognition among our medical providers, and society generally.

I’ve personally been faced with a doctor in an emergency department refusing to believe that CRPS is real and that I am not a drug seeker. That incident has produced a permanent trauma in my brain that, to this day, brings on anxiety. The entire experience nearly caused me to sign a DNR (Do Not Resuscitate) and give up. How many people do sign a DNR? How many give up on themselves because the medical community gave up on them? With a 70% suicide consideration rate among CRPS patients, you would think that we could do better. We will not reduce those incidents until medical providers are better educated and far more aware. There is no doubt in my mind that countless lives are lost due to the sheer ignorance of Complex Regional Pain Syndrome.

In contrast with the United States, the UK has a national treatment plan and efforts to diagnose and treat CRPS at the onset, which have been in place for a decade now. Here, we haven’t even put out a white paper. These guidelines are not written for just one type of doctor, but 30 different specialties. Each discipline is addressed in theComplex regional pain syndrome in adults (2nd edition). It is due to be updated soon. The RCP revises its policies every five years. The CRPS protocols were last revised in 2018. Here in the United States, we’ve not even begun to have protocols, or for that matter, treatment plans nationally recognized. The federal government is slow to put anything on the books for Complex Regional Pain Syndrome. How slow? It’s been over 200 years since CRPS was first diagnosed on the battlefields of the Civil War, and yet the FDA has never approved a single treatment for it. We have achieved orphan disease status, which “should” give us better access to treatments like ketamine infusions and low-dose naltrexone to name. Yet for some, there is no access to any treatments at all.

I want to lobby for change. I need you to join me. For the medical community in the United States to know that CRPS patients exist. It needs to start in medical school, with more than a twenty-minute cursory lecture. Doctors are told to practice for the majority. If it sounds like the person has heart disease, then it’s heart disease. They say, “If it sounds like a horse, then it’s a horse.” However, sometimes there are zebras. Zebras are a medical rarity, patients who have rare diseases. Medical zebras are not spoken of enough to stay relevant in the minds of our medical providers. Unlike the UK, we do not have protocols and best practices for our providers when it comes to rare diseases. I often wonder how “rare” CRPS truly is, and how much it goes undiagnosed or misdiagnosed. The average CRPS patient will tell you that it took years, and many doctors, to finally arrive at the correct diagnosis, and the right treatment combination to allow them to have some semblance of a “normal” life.

What do I mean by “normal” life? I’m talking about bathing without help, cooking a meal, or even just walking around a grocery store. Of course, my motto is to “work smarter, not harder,” so I use my limited energy for things I truly want to achieve even if it’s only something as simple as grocery shopping.

There is an active protocol in the UK that warns doctors to look out for signs or symptoms of CRPS in instances of physical injuries. For example, orthopedic doctors are specifically told to watch out for symptoms. One recommendation states, “Surgeons should be aware that the diagnosis of CRPS can be made in patients who have only had minor soft tissue injury. It may even occur without a traumatic event. A CRPS diagnostic checklist should be available in orthopedic and plastic surgery departments, including outpatient departments and plaster rooms.” (1) This reminder to providers prevents years of undiagnosed suffering. Why do

Part 2 of 2 we not have those checklists and reminders in the US?

When visiting the Netherlands, I found a copy of those recommendations, protocols, and practices written by arguably some of the best physicians in the United Kingdom. Still, awareness is a problem around the world. Most physicians have never heard of CRPS, which means that more people miss the window to be treated at the onset. For some, this leads to amputation of limbs, or losing their autonomy, forced into assisted living. I spent two years locked in a bed, not knowing what I had or why the ground could feel like shards of glass piercing my feet with each step. It’s no way to live.

“The Royal College of Physicians (RCP) plays a leading role in the delivery of high‐quality patient care by setting standards of medical practice and promoting clinical excellence. The RCP provides physicians in over 30 medical specialties with education, training, and support throughout their careers. As an independent charity representing over 35,000 fellows and members worldwide, the RCP advises and works with government, patients, allied healthcare professionals and the public to improve health and healthcare.” (2)

It’s no big mystery to them that CRPS exists. They have published a book on it twice. Medicine has never been one size fits all, nor should it be. To properly treat CRPS, a provider needs to practice narrative medicine and consider the patient as a whole not limited to one symptom or another. CRPS is difficult to control, but the right mix of treatments, medication, even lifestyle and food changes, can allow a person to maintain a quality life, though it can take an extended period of time to find the right combination of things. Providers need to be present for the long road of care, not just in the moment.

Now the UK is not perfect either. The vast majority of people there have never heard of CRPS. One step to increase awareness that the RCP has recommended is to distribute pamphlets that include warnings about symptoms of CRPS, and when they should report back to their providers. Putting this information into discharge instructions can increase early treatment and interventions to prevent a lifetime of suffering.

My mom was diagnosed with #ComplexRegionalPainSyndrome My daughter and I live with her and are supposed to be helping her, but she refuses. She’s also developing memory issues, and the stress of the pain is eroding her health it seems daily. I want to better understand what she’s going through and how I can help. Seems I can’t do anything right. Then again, she’s diagnosed #NarcissisticPersonalityDisorder so I know there’s only so much I can do. She’s looking at medically assisted… stuff (I don’t want to trigger). I don’t want to trigger. But I still have to try. Any advice or stories would help tremendously! It’s her knee. She has a Nervo implanted, but it apparently barely makes a dent. She calls it her “forever pre-op root canal leg.” Yikes! #Caregiving #SuicidalThoughts (her not me)