Complex Regional Pain Syndrome

I am 53 and female. I’m a former teacher and college professor. I have CRPS. Is there anyone here who is familiar with the disorder? I live in upstate New York.

I could drive to Princeton-Plainsboro, but I think House retired.

This is what the NHS says about it:

Complex regional pain syndrome (CRPS) is a poorly understood condition where a person experiences persistent severe and debilitating pain.

Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.

The pain usually only affects 1 limb, but it can sometimes spread to other parts of the body.

The skin of the affected body part can become so sensitive that a slight touch, bump or even a change in temperature can cause intense pain.

Affected areas can also become swollen, stiff or undergo fluctuating changes in colour or temperature.

CRPS often gradually improves over time. But some people with CRPS experience pain for many years.

Thanks, Bob_2! I have been DXed by many physicians and surgeons, from several disciplines/specialties.

I may posted in the wrong category, but I’m brand new to SDMB, and I seek input from other sufferers, their caregivers, and/or healthcare professionals.

—Fiona

I’ve reviewed many files with diagnoses of CRPS. I am not a doctor, but my understanding is that a diagnosis of CRPS ought to be based on a constellation of pretty specific symptoms - as well as observable signs and findings - as bob-2 describes.

Again, I am not a doctor, but my lay observation has been that CRPS symptoms often seem to be longer lasting and more resistant to treatment than many other pain disorders.

Good luck.

Again, I do not seek information about the disorder, just delete the OP.

—Fiona

Cool. And welcome to the Dope. If - instead of closing the thread, it were moved to MPSIMS, you might find the sort of input your desire.

Actually, health-related stuff usually goes in IMHO.

Don’t get discouraged, @KateMathers. A bit of adjusting is all that’s needed. Welcome aboard this Ship of Fools. :blush:

I’ll try! I live in diabolical pain pretty much 24/7.

I understood that you knew about your diagnosis, but I could see it was in the wrong place and thought it may help others who didn’t know what CRPS is. My wife suffers from fibromyalgia so I have some idea about what you are going through.

the Ainsworth Institute of Pain Management in NYC is pretty highly rated for treatment if that’s what you’re looking for

Oh, thank you. I’m pretty sure I’ve been looking for this ragtag group of intellectuals for years. The Onion wasn’t enough and Reddit has been polluted.

For those in the know, our oldest kid was just inducted into Phi Beta Kappa. She’s 22. We are beyond proud. Knowledge IS power.

—Fiona

That’s what we are!

Chronic pain sucks. I have polymyalgia rheumatica, but my pain waxes and wanes.

Cannabis seems to help with chronic pain, not necessarily by making the pain go away, but allowing you to kind of not care about the pain.

My wife has a chronic pain. We’ll have been married 37 years this August! :wink:

Welcome to the boards and congrats to your daughter. Just a week or two ago, I read this: Can Virtual Reality Help Ease Chronic Pain? - The New York Times. Hope it can help. If it is paywalled, let me know and I’ll see if can get a PDF of it.

Like others here, I have chronic pain associated with disability, but I don’t have CRPS. I can offer sympathy and understanding, but unfortunately nothing concrete.

Hari thank you for posting that. I am always on the lookout for information on possible treatments.

Here’s the gift link to that article:

Thanks…love the way you were thinking but that’s not what I’m after. To “control” my pain, they want to put an electrical stimulator into my lower back. That’s the implant. The leads/wires/tentacles from this unit are then attached to my spinal cord.

They canal must be opened first, that’s a gnarly job but neurosurgeons get off on that’s stuff, yay them, yay me? Not so much me. I’m all no still. It’s literally like throwing darts at a dartboard, only these are wires and the board is my SPINAL CORD.

It’s a necessary component of my super machine: my body. Plus, it’s all “in bed” with my brain, so keeping that rail line running is pretty critical.

Oh, the success rate? For me? It’s around 30%. So, I’m looking at odds that are not the best. Plus, the things that can and DO go wrong, can go very, very wrong.

The pain I have now is called agony, it can be “managed” but things only only go downhill from here with this disorder. Thus, this investigation to see if anyone out there has it or wants to comment on it. No one has to out themselves, share private HIPPA stuff, maybe they are a doctor, a surgeon, a pain psychologist. just offer any info.

I welcome all information, isn’t that why we are all here in this group?

My college senior was just inducted into a secret academic society last Saturday. I get it! I didn’t get a key nor was it even offered. Lol. I was a college professor without it!

—Fiona

Hence my Alias.

—Fiona

I have spinal arthritis due to inflammation and degeneration of the vertebrae just above the cages put in for my last two operations. Fortunately, I can get relief by sitting down, which is supremely fortunate since I spend most of my life facing a computer. So it’s nowhere near as severe as what you’re experiencing.

But I can empathize, especially at the lack of long-term solutions for chronic pain. I’ve been through all the throwing solutions at the wall to see what sticks doctoring for decades. Nothing sticks. That’s one of the reasons why there’s an opioid crisis in this country. Pain relief is the least talked-about emergency affecting the greatest number of people.