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3d rendering of a damaged nerve cell

It is an often misunderstood injury that might take months to manifest itself after an accident, but has been ranked worse on the McGill Pain Index than unprepared childbirth. It is a condition that can cause pain so bad, some patients would prefer amputation of affected limbs. It is known as Complex Regional Pain Syndrome, or “CRPS” for short.

CRPS is a painful condition that is characterized by extreme pain, swelling, limited range of motion, and changes to the skin, hair, and nails. One of the reasons that CRPS is often misunderstood is because the pain is so disproportionate to the injury that it defies common sense. Some studies suggest that 90% of the time, this central nervous system injury occurs even though there is no study that can confirm an obvious injury to a nerve, although almost all cases have some type of precipitating injury that leads to CRPS.

Because the condition has historically been relatively rare, for a long time only a handful of medical experts existed who had meaningful experience treating the condition. As a result, some of the world’s top medical experts met in Budapest in 2003, developing the “Budapest Criteria” for diagnosing CRPS. The Budapest Criteria remains the standard for diagnosing CRPS, and is reproduced below:

The following criteria must be met:

  1. Continuing pain, which is disproportionate to any inciting event.
  2. Must report at least one symptom in all four of the following categories:
    • sensory – reports of hyperaesthesia and/or allodynia
    • vasomotor – reports of temperature asymmetry and/or skin colour changes and/or skin colour asymmetry
    • sudomotor/oedema – reports of oedema and/or sweating changes and/or sweating asymmetry
    • motor/trophic – reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin).
  3. Must display at least one sign at time of evaluation in two or more of the following categories
    • sensory – evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or temperature sensation and/or deep somatic pressure and/or joint movement)
    • vasomotor – evidence of temperature asymmetry (> 1 °C) and/or skin colour changes and/or asymmetry
    • sudomotor/oedema – evidence of oedema and/or sweating changes and/or sweating asymmetry
    • motor/trophic – evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)
  1. There is no other diagnosis that better explains the signs and symptoms.

A good prognosis is possible if CRPS is caught early and treatment started, however, all too often CRPS is not caught early enough. Medical literature reports that if not caught within the first few months, CRPS can spread throughout a limb, sometimes affecting opposite limbs as well. One report from Johns Hopkins, indicated that CRPS spread in 77% of cases. In such situations, future care and treatment can be involved, expensive, and ongoing.

Many patients who suffer from CRPS experience a total change in the way they experience life. Pain may be so unrelenting that it manifests in almost every aspect of life, causing loss of normal daily function, loss of employment, loss of relationships, and diminished quality of life. Oftentimes, patients seek out medical care, but are accused by insurance companies and doctors without CRPS experience of being malingerers or even drug-seekers. A recent report from Oklahoma noted how a woman with CRPS who has a handicapped placard was accused of being a faker by a stranger. https://ktul.com/news/local/woman-with-chronic-pain-gets-hateful-note-for-parking-in-handicap-spot

Those suffering from CRPS caused by the negligent conduct of another should do everything they can to have a CRPS focused team fighting for them. They should also know that they are not alone. Support groups exist, such as the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), whose website is http://www.rsds.org. Founded in 1984, the organization promotes patient advocacy and serves as a network for patients to share their common experiences with each other.

Finding a top-notch medical team is essential to trying to live a life as close to normal as possible, but financing your future medical care needs can be daunting. When it comes to ensuring your future CRPS medical care needs are taken care of, finding an attorney with CRPS experience can be almost as important as finding the right doctors.

6 Comments

  1. Gravatar for christina zappa
    christina zappa

    i have had 3 dr diagnose me with rsd in 2009. was on ssdi and wk disability. wk decided after 10 years to video tape me. (i have been using hempworx cbd and the pain was starting to be tolerable in small doses.) Wk sent me to evaluation. dr used a hammer on me i was in tears, but since i could walk 4 steps she put down i could wk 8 hts and there was no apparent distress..i was bailing like a baby. yhe burse told me to sit till i felt i could go to my car. i lost my wk disability. there letter first sentence was we do not have to use the same criteria as ssdi.

    1. Gravatar for Karen Wright
      Karen Wright

      I'm so blessed my g.p was excellent and although his knowledge of this was limited he learnt very quickly, I had an accident on the stairs at work, 2013 but my body refused to heal right arm/ hand first then my left arm,right leg know had slight mishap and slipped 7 yrs on I do take a host of very strong opioids and other nerve related meds .my skin is dry scarred and blotchy no real nails they just crumble, I have good days then bad weeks. Am I feeling sorry for myself..damn right I do just regular blood pressure monitoring can send me through the roof omg I could whinge for the whole of England. All I can say is you have no choice but to put up and shut up very few people have heard of it and those that have are very rare for those that have it my heart is with you to my gp thankyou without you believing me god knows where I'd be ,and finally my husband who cares for me daily I wish it didn't exist ....

  2. Gravatar for Cissy
    Cissy

    I have yet to find an attorney who will take our case for my 22 year old daughter in Atlanta. This was caused by a orthopedic surgeon who later we learned noted that he saw signs or crps. WHAT CAN I DO? Alternative treatments aside from insurance are costly! And she won’t be on our insurance forever unfortunately

    1. Matthew S. Sims

      Cissy, you can keep contacting lawyers and look for those with experience handling CRPS cases. Feel free to contact our office directly for a free consultation.

  3. Gravatar for Deb
    Deb

    Truly a nightmare. We have a attorney who is not helping.

  4. Gravatar for Laura
    Laura

    I'm so impressed that you are very knowledgeable in regards to RSD CRPS warriors. I had surgery on my right knee and thought everything was fine. For a little while it was.. until I tore my meniscus on the same knee and already prior to this second injury pain was getting horrific. My orthopedic doctor tried shooting me up with cortisone injection directly in the knee and to start walking on it even though I couldn't. I searched high and low for another surgeon to fix the meniscus and stop this nightmare. Finally my daughter who works in a hospital as well examined me and he couldn't even touch me anymore. He left the room to go over all his finding and came back into the room and said... have you ever heard of RSD? Obviously not and said it's time for you to Google it because that's exactly what you have now and said I'm so sorry but nobody is going to perform surgery on your knee now because it would make everything even more painful 😥. That was in 2009. Now your article clearly stated that no one should be alone in this battle. I've been through hell and back with my husband... thank God for him. I've had many expensive treatments and medicine but no opiates. Today I'm in serious pain and my pain specialist office said that he is extremely booked and he's isn't seeing any follow ups until September!!! I tried calling my GP and his assistant said that my doctor can't do anything for me and try again with your PM doctor. No help any where. BTW I forgot to mention that when my husband and I went to get a copy of my records, the assistant said..why do you want a copy..are you going to sue him too? Also he was already on leave and found out that he actually got nerves while repairing my knee. When I saw his assistant doctor who said I reinjured it again said that I'm aware that you sought out a second opinion and he concurred that it is RSD CRPS. Welcome to my story. Thanks for reading this. Keep getting the word out and we need more doctors who are trained on this DX.

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