You don't want me to entertain the does-full-body-CRPS-exist-or-not discussion here.
Even though most everyone says the disease does not occur in strict accordance to these categories, they... okay, we almost always reproduce them. I lifted the following treatment from the Medline Plus Medical Encyclopedia:
In most cases CRPS has three stages. Often, however, CRPS does not follow this pattern. Some people go into the later stages almost right away. Others stay in the first stage.
Stage 1 (lasts 1 - 3 months):
Increased nail and hair growth
Pain that may move farther up or down the affected limb
Severe burning, aching pain that increases with the slightest touch or breeze
Skin that becomes dry and thin, changes color
Swelling with warmth or coolness
Stage 2 (lasts 3 - 6 months):
Decreased hair growth
Noticeable changes in skin texture and color
Spread of swelling
Stiff muscles and joints
Stage 3 (irreversible changes can be seen)
Contractions involving muscles and tendons
Limited movement in limb
Pain in the entire limb
Muscle wasting
Depression or mood changes may occur with these symptoms,
especially in stage 3.
I had changes in the toenails of my right foot pretty early on -- rapid growth and thickening. In my left hand, I only experienced rapid growth. I did not pay much attention, as dealing with the pain was an overarching concern.
It will have been 8 years exactly on May 22 -- We know the exact date, time, place, and original cause of my CRPS onset. In a fit of pique last year, I wrote up how that all went down -- not here on my own blog, of course, but over at The Happy Hospitalist. You will find it reproduced at the end of this post.** Give it a read to better understand the more PTSD-y and nutzoid aspects of my CRPS. Give it a read to see how horribly wrong things can go in a hospital. Give it a read to see how, despite incredible bad luck, honesty and professionalism might have saved the day -- but doctors, nurses, and administrators chose another path.
Anyway, I am confining myself to the nails and skin today!
Because my left hand and forearm were involved from Day 1, I thought that any nail/skin changes in my upper extremities would begin there. Indeed, I did develop skin rot and lost a nail from the left index finger last year -- but we think it was an honest skin rot, and unrelated to CRPS/RSD.
It was something of a surprise that the involvement of my right arm, once "spread" happened, progressed so quickly. Obviously, you want to avoid any surgery on a CRPS-involved area... so the series of seven surgeries on my shoulders last year probably sped things along.
The last few months have seen an increase in pain -- but also, funky skin and deteriorating nails. Prednisone does not help the skin situation, for sure. If I rub my face, for example, there is a pretty good chance that the skin will tear away, leaving an ulcer. Once the skin is torn or otherwise breached, healing that area is nigh unto impossible.
I know that it cannot be, but it seems almost like I am allergic to some of my own sebaceous glands. There where one could ostensibly drill for oil, my skin ulcerates -- on its own, without any inciting event. At the moment, I am nursing three spots on my face -- just trying to get the skin to knit back together. Because my circulation and nerve supply are challenged, this is difficult. Yesterday, my attempt to gently cleanse my nose resulted in the ulcer there reopening, bleeding.
When my pain surged, my fingers and hands were smack dab in the middle of everything. First, the cuticle would simply fall off. Second, an indentation forms at the base of the nail.
Then comes wacky, wicked overgrowth. Overgrowth has occured before, but only in my bones. It fairly freaked out the orthopedic surgeon who rebuilt my right elbow a few years ago. Worried about my bones not knitting together enough, the first post op x-rays put that concern to rest, as new bone was piling up on old and then on top of itself. Unfortunately, it meant that the newly built bone was fragile -- due to shoddy construction.
Same process with the nails.
A picture might help. This is my right thumb. The nail itself is not, of course, painful. But the weird pulling on the nail bed, when combined with an untimely tap, can really set off some electrical shocks. At the moment, 5 of 10 nails are involved.
It is tempting to want to blame some forgotten trauma, and to insist that there must be a fungus at work. No, and no, unfortunately.
It's just CRPS at work.
In other news? My go-to-doctor thinks that, ultimately and unless we ever get the offending pathogen to grow and identify itself, they are going to have to remove my shoulder. Shoulders. As in, no spacers. As in, no prostheses.
What is that noise? It sounds like hysterical laughter...
**unedited comment to happy's blog:
follow the breadcrumbs of errors:
a few years back, i was admitted for a shoulder replacement (avascular necrosis). adrenal insufficiency required stress dose steroid administration pre, intra, and post op. none was given, despite several pre-op interviews with anesthesia and the surgeon, despite it being the premier admonition in my internist's medical clearance. surgery was bumped a few hours because no one could locate the surgeon. turned out he was "lunching" with manufacturer's rep of the company that made my prosthesis (a new technology). whatever. before surgery even began, i was having lower back pain, some fever, and considerable emotional lability. i had required increased hydrocortisone the preceding week due to a uti -- but had taken no oral steroids that day per anesthesia. surgery itself went well.
post op -- fever, diarrhea, back spasm. the nurses charted that i was whiny and uncooperative, told hubby to head home, that i just needed sleep. they were furious when i was incontinent of stool.
i bet they were even more furious when i was found unresponsive six hours later, then coded. my cardiologist was around,administered cpr, got me to icu. life saver was the hospitalist, who did NOT know me and therefore had new eyes. could not reach surgeon (rolling eyes) and was only able to speak with hubby and internist -- both of whom immediately asked about steroids. bingo.
unfortunately, i was already experiencing organ system failures -- kidney, cardiac. on a vent.
five days pass, i am recovering. it was a holiday, nursing staff-to-patient ratio was low. i had a nurse who was deaf --not kidding. she would take out her hearing aids because the machines in icu bothered them. in such a state, she decided i should get out of bed to use bedside commode. i hadn't even sat up since the day of surgery. due to the operated shoulder and all the tubing, there was nothing for her to hold on to when i promptly fell to the floor -- hit my head on the table, my forearm on the bed rail and badly broke my ankle, plus a fx to the fibula. a few hours later began the pain of crps -- no one could figure it out at the time... and it wasn't a priority, for i began a severe gi bleed. ankle was operated on a week or so later, requiring a good amount of hardware to be installed.
the concussion was also fun.
the pain was more than i had imagined was possible. i was terrified of the hospital at that point -- a major award-winning place in a metro area. the hospital said it would pay for the ambulance ride home, a hospital bed, and home PT. it didn't, of course. my pain and disability extended -- crps showed up in my left arm as well as the lower right leg. when the bills began pouring in, i contacted the hospital to find that no one knew what i was talking about. made an appt to see the vice-prez -- she treated me like a piece of shit and said that all falls had to be reported, and certainly she would have heard of an injury... i am sitting there with a cast on my leg, a swollen, red and shiny arm, listening to her say that nothing happened.
i went home and called the state inspection folks who began an investigation that resulted in the declaration of a sentinel event. there was more consternation over their failure to report than over any other aspect. when a "cover up" occurs in an event aftermath, it changes the tenor completely of what went on "before."
i now have crps, types 1 and 2, in all extremities and the lower part of my face. due to cronyism, i wasn't diagnosed until 19 months out from onset. my pain is intractable; i am wheelchair bound; i cannot sleep; i cannot work or socialize to any meaningful extent.
and last week, i had that prosthesis removed -- osteomyelitis. i have the honor of living without any shoulders at the moment. i cannot allow my mind to entertain the notion that my current bone infection may have begun with that hospitalization back in may 2002.
how did i do? [this was all in response to happy's assertion that he'd never heard of a serious mistake being made in his hospital and did not believe that such things really occured.] a lot of annoyance for mistakes that never happened, for errors that were never reported, for a disease that didn't exist if they kept their eyes closed. they never even effing reported *anything*.
Below is a comment I appended to the original post made over at Happy's, as well. Reading it all again, I can feel my extreme frustration, anger, and depression. This year, on May 22, I hope to avoid any pseudo-PTSD-y symptoms. I hope to not even notice the date.
Yep... I sure am laying the groundwork for *that*! I'm off to a rip-roaring healthy start!
La Belle et Bonne Bianca Castafiore, here. I serve as the willing public persona to one Retired Educator -- retired precisely due to the événements detailed above. We failed to provide a few details, not because they were not salient, but because it is difficult to type without shoulders!
**There was a third surgery to that illustrious hospitalization. When my cardiologist was working on me, he inserted a line in my femoral artery. A hefty little embolus formed a day later and emergency surgery was necessary as my leg was pulseless and a lovely ciel blue. *That* complication? Blameless and completely acceptable by me, something that occured in the order of things. Unfortunately, in the aftermath, our relationship was sacrificed to the Medico Brotherhood of Paranoia.
**My surgeon disappeared for a week after the ICU fall. I asked to have a new surgeon -- that request was both squashed and denied. Even my go-to-guy advised me to stick with The Jerk until at least the end of the hospitlizatiion. No one seemed to know what to do next. When he returned, I remember asking him when my ankle would be repaired. He stood at the end of the bed and laughed, saying: "We could just leave it the way it is, you know. I am under no obligation to fix it. It's strictly an elective procedure." I was *terrified.*
**The day of the fall, I asked to see a patient advocate and was told that there were not any, but would I care to speak to a nun? Wile E. Coyote had nothing on these people. When I left the hospital, we thought that I had made three complete incident reports, and I *trusted* that there would be some record made in my chart. Dumb. Dumb. Dumb. What did I recommend in those lively conversations? Inservice education about adrenal insufficiency and how to spot the admittedly vague symptoms in patients undergoing surgery. Dumb. Dumb. Dumb. Legal action? Not even on my radar. I was being told that the incredible sensitivity and horrible shooting, burning pains in my leg and arm were the result of "too much pain medication" [?] and/or "a psychological problem." Would I care to see a psychiatrist? Rather than be offended, as I was, I should have said "yes." The nun, the shrink, and I might have really hit it off. Add a social worker and we had 4 for bridge.
**This ought to interest everyone. I was thrown into a Hell after all this happened -- I kept returning to the same doctors because my trust was not eroded. (Okay, so I am an idiot.) I thought and expected that people would be honest with me. When I finally went to a new neurologist, he left the exam room after about 5 minutes and came back with a heavy tome that had pictures of "classic" presentation of CRPS. Those photos might have been of me, they were that similar. He is wonderfully direct, and even though part of the same system as my former neurologist, quickly laid out the apparent plans for obfuscation that I was up against. Apparently, it was expected that I would sue. I would love to have sued... but had no capacity to handle anything but getting through the day. My friends and loves were angry with me... they would apparently have felt better were I to receive money. Go figure. Anyway, New Neuro Man tried to throw all available treatment at my CRPS, then still confined to the right leg and the left arm, and I tried to find some peace. I did, though, contact the state and report what I felt was a pretty awful state of affairs, and the previously mentioned Sentinel Event was declared, and investigators descended on the joint for a few days. Following that, I was dropped like a hot potato as a patient by everyone except my internist and my newly acquired neurologist. There is a 2-year statute of limitations for legal action. I had contacted the state medical society about the surgeon's various bizarreries (I cannot write about them, cannot take that stress), and they answered that he could not be censured or even investigated based on the information given. Whatever. I had completely given up trying to get the hospital to even pay those few bills it promised to cover (ambulance, bed, PT), and was living on 2/3 of my teaching salary -- the pay out of my longterm disability insurance. We had bought a house just a few months before this surgery -- a place to slum when we strayed from Marlinspike Hall, deep, deep in the Tête de Hergé. Ten days before the statute would expire, I received a call from the Legal Dept of the hospital, asking me to please submit any outstanding bills relating to that hospitalization. I was of (at least) two minds and told them so. "Here are the bills you promised to pay," I wrote, "and here is what you ought to feel compelled to pay, because it would be the right thing to do." Negotiations began and they gave me a [very] small settlement.
Have you ever heard of an unsolicited settlement before?
**The last thing I have to say is that it is true that an apology and openness and Real HELP would have met all my needs, and might have saved my life from being ruined. Please, doctors, nurses, and administrators -- give that a try before you mire yourselves in heartless paranoia and ugly assumptions.
**I am not sure that you've done me any favors, making a post of my info -- but I am having to relive it anyway, given that today's circumstances link up with those of yesteryear. Did a hospitalist save me? Yes, though no doubt my internist would have come through, stud that he is. I never met the man. I have a smudged and bent card with his name on it and am told by the Fredster that he was incredible and that I am lucky he was there. If this is the kind of thing you do, Happy -- well... God bless you.
