INSIDE OUT
Patient Experience    |    Caregiver Observations    |    Treatments & Efficacy    |    Hope & Humor    |    Symptoms

It is important to have a plan... Keep track of medications, pain charts (daily, if not hourly) and to find patterns in pain cycles and levels... Tracking the effectiveness of lowering inflammation food intake and nutritional support impacts.  Then of course there is the various Dr. and PT visits/routines and of course monitoring the efficacy of the Cognitive Behavioral Therapist who's support is as important to aid in the process of living living with this condition as is a regular exercise routine.  Make no mistake about it, CRPS/RSD requires a team to support reversal and patient improvement.

Patient > "Fly-Girl"  

Injury Incident

CATASTROPHIC SHOULDER INJURY - RT 
​Shattered three main shoulder skeletal bones and damaging surrounding tissue of right shoulder. Patient is predominant Right hand.  Main impact was upper right shoulder blade, mid-main nerve line.

​Left untreated for 19 DAYS while awaiting Radiology lab to advise her she was cleared by her insurance company to have the needed imaging done to determine the extent of her injury.

Following imaging diagnostic, surgery was immediately scheduled. Cadaver shoulder structure replacement , internal severing of right arm with metal upper humerus attached and inserted into socket. 
  • Injury (catastrophic shoulder replacement)
    Onset June 3, 2015
  • Surgery (Cadaver Replacement w/metalic upper humerus)  
    ​June 22, 2015 (following 19 days of immobility awaiting Radiology Lab to advise her of her insurance companies approval notification.
  • Diagnosis (RDS/CRPS)
    Dec 7, 2015

General List of CRPS/RSD Symptoms

What does the Doctor look for?
Not all patients will have the symptoms listed below at every stage of the disease, especially early on, but the physican should be alerted to:
  1. Pain that exists long after the injury has healed.
  2. Pain that is out of proportion to the injury sustained (these are two hallmarks of the disease that Doctors look for).
  3. Changes to the skin; color/texture, dryness, tightness, redness, skin rashes, possible sores.
  4. An increase or decrease in sweating.
  5. The presence of a constant chronic burning pain. While there are some cases where there is no burning pain, it is rare.
  6. Spasms of the blood vessels and muscles.
  7. The existence of a prior injury that could have damaged a nerve.
  8. Use of casting, surgery difficulties, injury subsequent to the original incident.

They need to look for symptoms that the patient might not realize are significant and need to be shared with the doctor; some of these are changes that occur in the limbic system.
  • short-term memory loss
  • difficulty concentrating
  • insomnia
  • difficulty finding the right word when
    speaking
  • sensitivity to sound, vibration, smell,
    barometric pressure changes, and touch
  • depression

As you can see below, the upper humerus and shoulder socket were shattered.

Fly-Girl's Symptoms

  • Light Sensitive (noticed 1st at PT)
    August - Sept, 2016
  • Sweating (hyperhidrosis)
    ​Onset Nov 4, 2015
  • Swelling (edema)
    ​Onset Nov 4, 2015
  • Redness (RDS/CRPS)
    Onset Nov 4, 2015
  • Light Sensitivity Increases  
    January, 2016
  • Dr. K   (PT Specialist - one month)
    Ripped / Open Tissue - Got great movement
    Feeling Good
  • Next PT did not have good results  (swelling/red/heat)
    Dec 7, 2015
  • Surgeon Questions if Rejection or Infection   (Lost a month investigating ) 
    He wanted potential re-replacement of joint
  • PM Dr. R   (does not want replacement)
    Upset about accident > surgery gap 
  • Surgeon (not looking in direction of a CRPS diagnosis based on signed) - wanted to rule out Infection & rejection as cause of pain & limits in PT.  Highly Acclaimed Surgeon disregarding RSD/CRPS potential diagnosis 
  • Lost another another month of valuable PT
  • PM Dr. R  (delays in diagnosis put patient & Dr. R behind the 8 Ball)