Remission and CRPS

Hi!

I'm a registered nurse with full-body CRPS, but before I became affected by this thing, I did a bit less than a year as a nurse case manager for an independent firm. Most of what we did was step in on complex, catastrophic, or difficult to close files for work comp and accident claims.

During that time, I did see one complete recovery: One of the first cases I was ever assigned was a lovely middle-aged lady, wife, and grandmother, who had slipped in the icy parking lot as she stepped up onto the entryway of her place of work. Within 36 hours she was in the OR having the ankle fracture repaired. Four weeks in a hard cast, 4 more weeks in an air cast, and the NP wanted to send her back to work full duty. Patient burst into tears and said: "I haven't put any weight on this thing in 2 months because you guys told me not to. And I'm just supposed to show up to work on Monday morning like nothing's happened??"

NP then somewhat reluctantly wrote for physical therapy for 2 weeks, may repeat for two more weeks if needed, remain on off work status for now, return to surgeon/NP's office for recheck in 4 weeks. NP's last words: "You can't stay home from work forever, you know".

Keep in mind I'm meeting all the players mid-play, and have almost no experience as an NCM at this point.

My perceptions were as follows: Patient was of a category that you see a lot in my downstate, largely rural region, which is to say, she had a high school education, had married at age 20, and had worked a series of part to full time low-paying service or clerical jobs around raising a family, and now baby-sitting for her grandchildren a couple of days per week.  I mention this only because I want to emphasize she had no world view that included such a thing as CRPS; it basically blindsided her in every way. She was a very nice person, but somewhat emotionally labile; during our intake interview, she cried three times. She reported that recently, her foot and ankle had begun to bother her more at night; she had gotten permission to remove the air cast while in bed, as she thought maybe it was somehow interfering with her circulation. Aside from this, no alarm bells went off for me, or anybody else as near as I could tell.

Fast forward to this patient being in the middle of PT. Lucky for all of us, the therapist was a sharp, well-read and very experienced guy: He called me and said: "I'm pretty sure we're looking at CRPS here. He then described the patient's continued complaints of night time sensitivity, and new onset burning pain in the foot and ankle. He stated that he had just witnessed patient's foot turn purple and start to sweat during that morning's therapy session. He had already put out a call to the surgeon's office to inform them.

I had to bone up on CRPS really, really quick; I'd been a nurse for over a decade at that point, and graduated first in my class and my division. I had never heard of CRP...what?!?!?

Anyway: Patient saw the surgeon two days later, was formally diagnosed with CRPS, and was referred to neurology and pain management. She had a protocol in place within 2 weeks of her foot first turning purple: 10 days of oral steroids, Gabapentin TID, and Hydrocodone/APAP for breakthrough pain. Also Ambien, to help with her messed up sleep patterns. Continue physical therapy, with focus on coping, safety, and desensitization as tolerated.

12 weeks later, all the patient's signs and symptoms had resolved completely. She was so happy and grateful. She no longer burst into tears at the drop of a hat, and hugged us all after her "graduation" from therapy, back to her regular part-time job.

She is the only person I know to have been treated in such a timely fashion, and the only person I personally know to have recovered 100%.

My company got bought out soon after, so I lost touch with this patient. I don't know if this lady ever had a recurrence of her CRPS.

We did have some problems episodically with her employer and to a lesser extent, the family, during this lady's recovery...Which I'm sure anybody on this forum will recognize namely: Family didn't understand why mom/grandma kept complaining about the burning pain in her foot, and why she was up at night and sleeping during the day, was putting on weight, was so emotionally up and down for what seemed to be no good reason. Patient summed it up to me once as: "Well, my family was sympathetic for about 2 weeks, but then they got confused, and now they are just plain sick of it, I guess".

Also the employer: Got the NP to write for return to work 2-3 days per week, 4-5 hours per day, arguing that the job was sedentary and that patient would be able to sit at her desk and put her foot up on a stool as needed.

Patient called me in tears to report that what the employer had neglected to mention is that the service staff took lunch in the middle of the day, leaving her to tend the desk of the busy parts and services department...In which she needed to go into a back room, perhaps climb a short step ladder to retrieve a box, and carry said box, which could weigh up to 40 lbs., to the front desk. Not so easy to do if you are using a walker, right?? An additional problem that the PT guy discovered was that the fire doors at the employer's office were so heavy that our client couldn't open them without assist/increased risk of fall while using her walker. For all practical purposes, this would keep her from opening the front door or fire exit, as well as the ladies' room. Crazy, right? But so it goes. PT wrote a letter and I called the surgeon, and we got him to write for off work status for another 4 weeks, for safety. Sheesh.

Anyway, this is the case that has pretty much been my template for how well things can turn out when if not everything, but at least most of the big things, go right: Experienced healthcare providers, timely and appropriate medications and therapies, safety maintained, etc..

Statistically, 80% or so of CRPS patients eventually recover, but I just haven't heard from any of them. But when you think about it, this is an example of watering hole paradigm: The people who participate in this forum have ongoing CRPS issues, otherwise, they would have moved on to some different watering hole in the vast Savanna of human experience, right?

The recent research on the autoimmune and inflammatory contributors to CRPS and similar disease states such as Sjogrens and fibromyalgia, polyneuropathies, etc., is going to really change things up for CRPS sufferers in the next decade, but in the meantime, we still have a lot of healthcare providers, employers, and family members saying CRP...what?!??? Sigh.