I was diagnosed with CRPS about 8 months ago, although I suffered for a couple years before that. It is a very debilitating disease and is a big part of why I have filed for disability this year. I feel pain 24/7.
CRPS is a disease of the sympathetic nervous system. It normally starts after having an injury or surgery to an area of the body. CRPS causes the nerves in the body to go into overdrive and act crazy. The body perceives even the smallest pressure or touch as an extremely painful event. Sometimes the affect limb will turn red and will become very swollen. The pain is rated higher than cancer pain, labor pain, and amputation on the McGill pain scale. Patients often describe the pain as feeling like being on fire or being stabbed.
Mine stems from having 3 surgeries on my foot (see post about that here). My body thinks I am still recovering from the foot surgery and I have pain as if I did just have surgery. My worst site is the foot, but CRPS has spread throughout my whole body. I can't even scratch an itch without causing excruciating pain. I literally feels like I was hit with a baseball bat in that spot. Having my cat walk on me feels like knives. Scratching an itch or having a cat walk across your lap should not be painful!! In some of my worst flares, I can not even be lightly touched. Even my clothes hurt during a big flare. When I am laying down, the pressure of resting my foot on the bed or couch is too painful, so I have to put a pillow under my leg to keep the foot up. I also can't tolerate a heavy blanket being draped over my foot. I often have that foot sticking out of the covers. I hate wearing shoes, because the pressure of them is not comfortable. My foot swells terribly and sometimes becomes red and hot. I get excruciating charlie horse cramps in the foot and leg. I also have fairly severe muscle atrophy in that leg. I have very painful recoveries after any surgery or procedure. I take longer to heal than a normal person and require more pain control drugs. Even injections in my spine result in me needing wheelchair assistance for at least 3 days after.
My CRPS is being managed by an amazing pain doctor. He really cares and is extremely educated in treating this complex syndrome. I currently take 2 nerve pain medications, opiod pain medication that is similar to morphine but stronger, muscle relaxer, and I get IV infusions of ketamine, tylenol, and ibuprofen every 4 weeks. The ketamine is one of the few things that is proven to really help CRPS patients. The ketamine does give me relief.
What is ketamine and how does it work?
Ketamine is an anesthetic drug. It is called a dissociative anesthetic. This means that is disconnects the mind from the body. The mind is unable to perceive any pain that is happening. I get a 3 hour IV drip of this drug every 4 weeks. During the drip, I feel very sedated. I can hear things happening around me, but I can not respond to them. I am also unable to feel pain (YAY!). My body goes numb. I can't even feel myself bite my lip. This is because my mind doesn't get the memo that I am in pain. The ketamine essentially shuts off my crazy pain signals. It is like a total reset for the nervous system.
During my very first infusion, I experienced hallucinations and the whole experience was weird and not peaceful. Now, my doctor adds versed (a calming sedative medication) and I am able to sleep through the infusions.
Some very severe cases of CRPS require a ketamine coma. This means the patient is actually put into a coma state for anywhere from 5 days to a year. Some patients also require more frequent infusions than I do (I might need more frequent infusions someday).
Other treatments for CRPS are nerve medications (such as neurontin, savella, and lyrica), muscle relaxers, strong pain medications, IVIG infusions (very costly), and spinal cord simulators.
CRPS can be a very isolating disease. Patients feel very misunderstood. It also causes depression and anxiety. It is very hard to be in that much pain 24/7. Many patients have suicidal thoughts. There are some great support groups available online and through the RSD foundation. I hope this post helps my friends, family, and other readers understand the condition a little better.
A video of patients describing CRPS:
Check out these websites for more information and help:
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