CRPS help

  1. My sister was diagnosed with CRPS in her left foot/lower leg in September of 2009 after fracturing her navicular bone in her foot in January. It has spread and now involves both legs/pelvis and into her left hand. A failed spinal stimulator trial has left her with urinary incontinence. She has been told by her pain management physician that she cannot do anything more for my sister. She is on huge doses of oral meds with little to no relief. She has been evaluated by a CRPS specialist and he wants to repeat the stimulator trial. Does anyone have experience working with CRPS patients? How much is too much when it comes to pain meds? I am a nurse and some days don't know how to help her. Any advice would be helpful.

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    About lfflygirl

    Joined: Mar '10; Posts: 2
    flight nurse
    Specialty: flight nurse, ED, Prehospital


  3. by   Hoozdo
    I had CRPS and am currently in remission. I was able to get an early diagnosis
    and treatment via stellate ganglion blocks and very vigorous physical therapy.

    Generally, nerve blocks are only effective in the first six months of the syndrome,
    so I am assuming your sister has tried this therapy and failed. The spinal stimulators
    are the second line of therapy. I have no personal experience with them, but
    I used to belong to a very helpful online group of CRPS sufferers. The general
    consensus is that they work for a short time and then don't work anymore.

    There are more aggressive treatments than spinal stimulators. Google up Ketamine
    treatment or ETC treatment for CRPS. You can also look at spinal delivery of small
    dose narcotics to keep the pain at bay.

    Basically, there is no limit in PO narcotics. It all revolves around opiate tolerance.

    The best way you can support your sister is realize her pain IS real and believe
    in her. The pain is just horrible 24/7 with no relief. These pts are some of the
    most depressed population you will ever see. Suicide is a real option to them to
    stop the pain. The judgment she sees as a "drug seeker" is also a problem and
    further plunges a pt into depression.

    *Not medical advice. Been there and done that - few people have. Tell your sister
    to have some hope. I am at least one person that's in remission!
  4. by   traumaRUs
    I'm sorry but we can't provide medical advice. Your sister should discuss her concerns with her provider.