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The “Suicide Disease”

When I first received my diagnosis of complex regional pain syndrome I had never heard of this disease.

When I first started researching this disease the more frustrated I became. For CRPS being the most painful condition known to the medical community (see pain index below) there is very little research done. No definite known cause, no diagnostic test, no proven treatment course to follow, no cure.

rsdhope.org

rsdhope.org

That does not mean those diagnosed with CRPS are without hope or crippled for the rest of their lives. The more I researched the disease the more I was able to understand what was going on at the visible level as well as at the molecular level.

From what I understand, CRPS is speculated to be caused by minor (type 1) or major (type 2) nerve damage. CRPS does not affect everyone. For those that it does it usually starts in a limb that has been injured, has pain disproportional to the injury, and slow to heal. (This describes every injury I’ve every obtained). CRPS spreads to different parts of the body in 70% of cases. Systematic CRPS where the entire body is affected is possible, but rare.

The symptoms associated with CRPS are due to the constant “on” state of the body’s alarm system. Nerves send messages (I like to picture them as balls) all the time and the brain interprets which to respond to. In the case of CRPS the nerves in affected areas send too many pain messages to the brain. The NMDA receptors (I like to picture these as baseball gloves catching the ball messages) in the brain are over-sensitive and respond to ALL of these signals. The brain’s pain response is to protect the body against a threat to the body and respond with pain if there is one. In the case of CRPS there is no threat, but the brain is responding with pain.

uspharmacist.com

uspharmacist.com

The body’s response to the perceived threat are the visible and invisible symptoms of CRPS:

  • Constant burning pain in affected area/extremity
  • Disproportionate pain in the affected area
  • Increased pain due to stimuli such as temperature change, sound, vibration, touch, movement of joints
  • Increased or decreased nail and/or hair growth in the affected area
  • Thin, glossy skin
  • Osteoporosis
  • Weakness
  • Coordination loss and/or incorrect perception of the affected area in space

The autoimmune responses in this condition include:

  • Swelling of the area
  • Excessive sweating in affected area
  • Changes in skin temperature and/or skin color (can change white, red, or blue) of affected area
  • Joint stiffness, swelling, damage

Symptoms can differ per person and can also change over time. This makes this disease difficult for physicians to pinpoint. The most common symptoms are pain, swelling, color change (usually redness), change in skin temperature, and hypersensitivity to cold and touch.Complex Regional Pain Syndrome can not be treated, but the pain can be managed with lifestyle, diet, medication, and physical therapy.

Not all CRPS symptoms are visible to others. That’s one of the problems with “invisible diseases”. Many people think if they can’t see the pain you are in or each and every one of your symptoms then you must not be that sick.


*I am not a medical doctor, this is not a diagnostic tool. Please consult your doctor if you are having above symptoms. Article is original content with information obtained from my doctors at UW-Health, MayoClinic.org , rsdhope.org, powerofpain.org, uspharmacist.com.
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17 Comments »

  1. Hey Hun I loved your article. As a CRPS warrior myself I totally relate to your story. I just wanted to clarify one thing. CRPS Type 1 occurs when nerves that do no correlate to your injury are affected. Like myself I have failed back surgery syndrome, sciatica, spinal stenosis and cauda equina syndrome, osteoarthritis, bone spurs, facet joint degeneration, and the CRPS started in my foot. So I have CRPS Type I …. now crps Type II means that the nerves affected by your injury have presented with crps. The symptoms are identical between both Type I and Type II. The only difference is one has a slightly better chance of remission. There is also primarily hot CRPS and primarily cold crps (which is what I have). The difference being Primarily Cold CRPS is chronic almost every time where as Hot CRPS is more likely to be short duration and go into remission.

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  2. I have this in both feet and legs caused from a broken little toe on both feet. I spent 8 months in a wheelchair unable to walk from the pain, my pain management dr. Got me hooked on pain killers, instead of trying to work with different meds, she kept upping dosage. I had to fight addiction plus the pain from crps. Thank god for my new pain management dr. Has me on all non narcotic meds and now working towards a stimulator.
    I beg anyone that contracts this, please be strong, you can over come.. I now walk with a cane! Don’t give into the pain! You can fight this! Take it from a person that contemplated commit suicide from the pain… I’m so glad I didn’t go through with it!

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  3. My husband has CRPS. He had a crush injury to his right leg in the coal mine on 3/21/2014. It’s been a long painful journey. I found a Dr at the Cleveland Clinic who has been studying/researching and treating this disease since the 80s, what a relief to finally talk to a dr who understands the pain and has some treatment options!

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    • I was injured in a car accident in 2003 and developed CRPS. After spending years in a wheel chair and being told there was no hope I met Dr. Michael Stanton-Hicks at the Cleveland Clinic. I now walk with a cane and have 2 wonderful children that are 4 and 6 years old. Dr. Stanton-Hicks and the Cleveland Clinic saved my life

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      • CRPS is an awfully painful disease and can leave you feeling hopeless. You’re progression is amazing!! Congratulations Brenda! Any triumph with this disease no matter how small or big is something to celebrate!

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      • I’m sorry to hear that treatment has not been effective at managing your pain. Don’t give up hope Wendy!
        Personally I have tried naltrexone, prednisone, gabapentin, lyrica, nerve blocks, radio frequency ablation of a nerve, and currently I am doing IV lidocaine infusions. I talk about my treatment options in this blog if you would like to read more.

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    • My husband as well had a crush Injury and just recently dx with CRPS. I’d be interested in the drs name at Cleveland clinic and what does your husband do for the burning?

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