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Life With One of the Most Painful Conditions Known to Modern Medicine

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November is RSD/CRPS Awareness Month.

RSD/CRPS goes by many names: reflex sympathetic dystrophy, reflex neurovascular dystophy, complex regional pain syndrome, hand-foot atrophy, Sudeck’s atrophy, amplified musculoskeletal pain syndrome, and causalgia (to name a few common ones).

So what is RSD/CRPS? To start, it is the most painful medical condition known to man at a 45/50 on the McGill Pain Scale. Because it is so painful and it is hard to find good doctors to treat this condition, CRPS has a grim nickname: the “suicide disease.” We lose too many RSD/CRPS warriors because the pain is just so unbearable. I personally have lost several friends to the disease, and I’m always fearing who will go next. Many people with RSD/CRPS have been to the deep dark place, where they just want to escape the pain, but not everyone climbs out of it.

RSD/CRPS is a disease of the central and autonomic nervous systems. Within the autonomic nervous system, there are two branches: the parasympathetic or “rest-and-digest” mode and the sympathetic or the “fight-or-flight” response. With CRPS, the sympathetic nervous system is inappropriately activated for a prolonged amount of time. While it is more prevalent in women, men can get it as well. CRPS is a diagnosis of exclusion, meaning that doctors have to test for everything else before they can diagnose CRPS. Bone scans, thermograms, EMGs, and QSARTs can be used to help support diagnosis. I was diagnosed off a grossly abnormal QSART. Therefore, it is easily misdiagnosed/undiagnosed. While CRPS may not be life-threatening by itself, several people, including myself have nearly lost their lives to it because of botched procedures, failed therapies, severe allergic reactions, and side effects of medication.

There are two kinds of CRPS: type 1 and type 2. Type 1 occurs without a direct injury to a nerve. Many people with type 1 CRPS do not know why their symptoms have started. Type 2 CRPS, formerly known as causalgia, occurs after a direct injury to a nerve causes some degree of damage.

Regardless of whether someone had type 1 or type 2, the general course of the disease is similar. Most people experience a burning, stabbing, shocking, gnawing, crushing, throbbing, and cold pain. Every person is different, so these are just a few ways someone with CRPS might describe their pain.

Some other symptoms of CRPS include:

  • allodynia: hypersensitivity to light touch
  • hyperalgesia: extreme hypersensitivity to pain
  • changes in hair and nail growth
  • skin color changes
  • skin texture changes
  • temperature changes
  • changes to sweating patterns
  • stiffness in joints
  • temporary paralysis
  • delayed wound healing
  • hypersensitivity to sounds and light
  • irritability
  • edema
  • depression
  • insomnia
  • fatigue
  • dystonia: involuntary muscle spasms causing a fixed contracture of a single extremity or multiple extremities
  • myoclonus/tremors: the quick random  jerking movements
  • muscle atrophy
  • osteopenia/osteoporosis: bone density loss due to reduced blood flow
  • gastrointestinal problems
  • failure to thrive
  • weight gain/loss

The CRPS community must band together to get us the cure we so desperately deserve. Remission is possible, but we need a cure. It all starts with awareness. Join us on November 7, 2016 to “Color the World Orange.” Simply wear an article of orange clothing, snap a picture and post it to social media! Until then, “Keep your chin up and charge the mountain!”

Please visit the following websites to learn more about RSD/CRPS

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

We want to hear your story. Become a Mighty contributor here.

Stock photo by Wavebreakmedia Ltd

Originally published: November 4, 2016
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