Diagnosis: CRPS/RSD

I’d been trying to avoid it, to think of alternate possibilities, to keep hope alive that surely there could be some other cause to the burning pain that I’ve had for the last 10 years and which has become many times worse since December 2, 2012.  Surely there was another explanation.  

Pain Specialist #1 wouldn’t even see me.  In fact, he wasn’t in the office that day for my first appointment and I was pawned off on the nurse practitioner (poor dear) who couldn’t answer any of my questions.  She gave me a list of criteria I’d need to fulfill before seeing doctor #1: must have ANOTHER MRI and neurological evaluation; must FAIL physical therapy; must also have a procedure scheduled for nerve ablation or lumbar block, otherwise, no, I wouldn’t see the doctor. Evidently she paid little attention to the 35 pound laundry basket teetering precariously on my lap, filled with X-rays, EMG/NG results, 3 inch binders chocked full of medical records, CDs of CT scans, and other such goodies – all mine.  My wheelchair and I left that office for the disappointing drive home on icy roads, only later to collect a $7.18 bill from the Department of Transportation for using the toll roads to get to/from my appointment that wasn’t; salt in the wound.  

So here I was, more than a month later, looking into the steely eyes of Pain Specialist #2, who I will call Dr. F.  She was running a needle over my skin – first across my forehead, down my arms, on both sides of my hands, then….Down My Legs. I didn’t flinch as the needle scratched my face or arms.  “Does this” (she scratches my arm) “feel the same as this?” (she scratches my right leg).  “No,” I said, as the anxiety rose.  She took the needle further down my right leg, asking me to describe how it feels different.  “Uhm, it’s like a feather” I said.  She determined the location on my leg where the sensation changed.  Oh no, she’s going to do my left leg too.  She started at my left thigh which was okay, then down the needle went to my knee, then to the upper part of my shin.  The sensation changed.  “How is it different?” she asked.  “It’s uh…well…it’s deeper and sharper.  I don’t like it.”  The needle proceeded along its predisposed path toward my foot and my body screamed out with a kind of pain that’s not the kind you experience when you stub your toe…it’s a kind all to its own.  “What happened?” she asked, as I pulled my leg as far away as it could get while taking a fast breath and holding myself back so I wouldn’t deck her with a knuckle sandwich, my eyes wild.  “I don’t know how to describe how it feels.  It’s like I’m being chased by a bear, like something attacking me.  It makes me sweat.  It makes me feel nauseous.  I don’t like anything touching my leg!”  She threw the needle in the trashcan and I could see cogs turning behind her eyeballs.  

“Put your feet on my hands like you would on the floor” she said as she bent down and placed her upturned palms under my feet.  “No, are you going to move your hands?  I can’t if you’re going to move your fingers.  Will you stay still?”  I had already told her as she came near to pick up the needle before, “If you need to touch me, we need to talk about it first.  I’m not joking; I don’t want you to touch my leg.”  She didn’t give me a definitive answer about whether or not she’d move her fingers but she told me again to put my feet on her hands.  I was scared, but I also felt like a sissy.  Surely I can put my feet on her hands, right?  Slowly, I trusted her with my right foot.  A heavy, anxious sigh escaped.  Her fingers didn’t move.  Twice as slowly I lowered my left leg into her cold right hand.  She looked closely at my feet, then took her hands away and touched the tops of my feet.  I tried not to move or breathe.  She wasn’t watching my face to see my grimacing.  

She resurfaced and told me briefly that we could start biofeedback so that I could learn to direct the blood flow into my legs to improve my circulation and she wanted me to try this medication, Lyrica, to help with the neuropathic pain.  

“Do you think I have CRPS?” I asked, afraid of the answer.  “Yes, you have a classic case of CRPS,” she said.  “But couldn’t it be something else?  Is there any other disease that looks like this?”  She muttered to herself while facing the computer, “Is there another disease with the same symptoms?” and didn’t turn back around when she said “No.”  

Crushing silence.  That wasn’t what I was hoping to hear even though I already knew it was probably the case.  

Alright, girl, pull it back together.  Get your head on.  She’s moving fast and you’ve got to think of those questions you were going to ask her before this appointment is over.  “I have a few questions for you.  What are…can we do…what’s the likelihood……uhm….NERVE BLOCKS?”  My brain was scrambled.  Luckily, she deciphered my babbling with her gluten free cereal box decoder ring.  “Those are too invasive at this point.  I don’t want to start with that.”  No explanations.  That was that.  I thought to myself, “Well, it’s obviously not HER leg that’s been on FIRE for 10+ years, is it!  There goes my hope for any more immediate relief.”  

The appointment was over.  I felt it went pretty well but I’m a detailist and I like to understand how things work, and I felt that Dr. F didn’t have the time to break it down for me…nor the people skills.  I had an appointment scheduled to see Pain Specialist #3 in just a few days, and I’d heard #3 was much more the friendly type, so I left with hopes that the third time would be the charm as I picked up my prescription for Lyrica from my pharmacy.  

“No,” she said.  It can’t be anything but CRPS.  *Sigh.*  Maybe Pain Specialist #3 will disagree and give me back a bit of that hope?



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