What is CRPS/RSD?

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Many people haven’t heard of CRPS (Complex Regional Pain Syndrome), its a fairly rare condition. I hadn’t either until I was diagnosed with it. My hope is that one day it will be better known and a cure will be found. Unfortunately at this moment in time there is no cure and getting into remission once you have had CRPS past 6 months becomes very difficult.

It’s hard to believe that we know so little about a disease that is known as the most painful disease in the world.

My CRPS has affected my life in ways I never imagined.

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I got CRPS from a simple running injury while trying to change from a heel striker to a forefoot striker. This is me before & after CRPS.

I have CRPS in many places: my left foot, my entire left leg up to my hip, my right pinky toe, and my entire left arm, left hand, and parts of my right arm.

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My legs March 2016 when my CRPS was it’s worst

I have been in a wheelchair for over two years because the pain in my feet and leg is so severe I lost the ability to walk normally in February 2015.

Some days I can’t wear shoes and I have to take Morphine to just shave my leg (something I was unable to do for almost a year because of the pain). Some days its so extreme I can’t walk and even bedsheets, pants, or a fan blowing on my feet and leg is EXCRUCIATING. 

This video is a small glimpse of how CRPS has affected my ability to walk and even bend my toes.

I have a fairly high pain tolerance, Ive had probably 20 piercings and at least 30+ hours of tattoo work…but I have NEVER felt pain like this.

My feet and leg feel like they are being broken and electrocuted all at once.

COMPLEX REGIONAL PAIN SYNDROME

(previously known as RSD or Reflex Sympathetic Dystrophy)

SYMPTOMS:

  • Constant chronic burning pain – The pain, which is usually significantly greater than the original event/injury;  though the affected area may feel cold to the touch to the patient it feels as though it is literally on fire; and is ranked as the most painful form of chronic pain today by the McGILL Pain Index. This symptom also includes allodynia which is an extreme sensitivity to touch, sound, temperature, and vibration. People with CRPS often are unable to tolerate wearing clothes, shoes, or even having blankets and sheets touch their body.
  • Inflammation – this can affect the appearance of the skin, bruising, mottling, tiny red spots, shiny, purplish look; as well as affect the skin temperature of the affected area, cause excessive sweating, etc. People may lose hair on the areas affected along with having brittle nails and accumulation of dead skin.
  • Spasms – in blood vessels (vasoconstriction) and muscles (sometimes referred to as rolling spasms) of the extremities.
  • Insomnia/Emotional Disturbance – includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, sleep disturbances, confusion, etc.”  (source:RSD Hope)

TYPES:

CRPS Type 1-occurs after a minor injury like bumping your leg against a table or fracturing your arm. There is no nerve damage with type 1.

  1. The presence of an initiating noxious event or a cause of immobilization
  2. Continuing pain, allodynia (perception of pain from a nonpainful stimulus), or hyperalgesia (an exaggerated sense of pain) disproportionate to the inciting event
  3. Edema, changes in skin blood flow, or abnormal sudomotor activity in the area of pain
  4. The diagnosis is excluded by the existence of any condition that would otherwise account for the degree of pain and dysfunction. (source-The International Association for the Study of Pain)

CRPS Type 2-occurs after nerves have been damaged due to injury.

  1. The presence of continuing pain, allodynia, or hyperalgesia after a nerve injury, not necessarily limited to the distribution of the injured nerve
  2. Evidence at some time of edema, changes in skin blood flow, or abnormal sudomotor activity in the region of pain
  3. The diagnosis is excluded by the existence of any condition that would otherwise account for the degree of pain and dysfunction. (source-The International Association for the Study of Pain)
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how crps works (source unknown)

This graphic explains how the CRPS/RSD cycle begins with an injury and then turns into a brain biofeedback issue. Your brain constantly thinks your limb/crps affected place is being injured and is continually firing nerve signals over and over when there is NOTHING wrong with the area. People with CRPS then begin to not use the affected limbs/area because of the severe pain which then reinforces to the brain that the areas with CRPS are “bad”, “wrong”, “injured”. The real issue is your brain and pulling both the brain and your nervous system out of this feedback loop….well, its VERY complicated.

As I mentioned above there is no cure for CRPS at this time, only remission and remission is difficult to achieve if you have had the disease for over 6 months. Since CRPS is rare, it is not always diagnosed right away so many will not find out they have CRPS until they have already had it for a long time.

Just to give an idea of what CRPS looks like as it progresses here are two pictures of my feet, about 2 years apart.

The first was taken when my CRPS was moderate but I was still working part-time , driving, walking short distances etc. I could only wear flat shoes with nothing touching the bottom of my foot. I couldn’t run or do anything high impact. I did not allow people to touch my foot. At this point it had not spread.

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This is when my CRPS was JUST in my left foot. I had CRPS for 2 years at this point.

The second photo was taken 8 months after my CRPS progressed to severe and I was unable to walk, drive, or work. My feet and leg would later progress to look like the photo at the top of this page.

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This is when my CRPS spread from my left foot to my right pinky toe and then up my left leg to my knee. By this point I had had CRPS for4 years.

You can see in the difference between the pictures in how as the CRPS progressed how my foot went from being bright red to swollen and purple. You can also see how the skin on the foot has been affected and how a lot of my leg hair on my left leg had fallen out.

To find out more about treatments please go here and here.

Its important to remember that different things work for different people.

To date I have tried the following for my CRPS:

I have done 5 nerve blocks, 20 sessions of Hyperbaric Oxygen Treatments, 2 weeks of Calmare therapy, and 4 ketamine infusions. Medications like Neurontin, Trileptal, Low Dose Naltrexone, Celebrex, many opiates, and Ketamine nasal spray. I have also done acupuncture, chiropractic care, PT, pool PT, and neuro-prolotherapy

Ketamine infusions and pool PT are the only things that seem to help me but it is a very very slow process since I lost the ability to walk normally and have had to literally RELEARN how to walk again.

You can read about all of my ketamine infusions on my blog, just chose the ketamine category on the sidebar!

Websites:

Forums: I don’t really do forums (you can read why here) but if you are new to CRPS it can be helpful to find out what others have done treatment-wise etc

Blogs about CRPS:

  •  The Invisible Warrior-this is my friend Kelly’s blog. We have never met in person but talk many times a week and have been helping each other through this difficult and painful condition. I am very grateful the universe put this smart caring lovely person in my life.
  • Jessica’s Journey– Jessica’s story is intense and her blog is how I first found out about ketamine infusions (and ketamine comas) She is also one of the first people I found online who had both CRPS AND Lyme Disease. Her journey has been extreme and awful but her tenacity is so inspiring.
  • You’ve Got A Lot of Nerve-  another young woman who developed CRPS from a running injury
  • Life of Fire and Pain