Today’s blog post is going to be a little different than our usual traveling and having fun posts but it deals with being a mom and with November 4th. My son Jason is 15 years old and is a typical teenager with the attitude and not wanting to hang out with his mom. But he is also a very strong and brave person. He’s been diagnosed with Asthma, Costochondritis and Hemiplegic Migraine Syndrome along with one more condition. The last condition he was diagnosed with is the most painful chronic pain condition known to man. Jason was diagnosed almost 2 years ago with Complex Regional Pain Syndrome I or CRPS. Just looking at him, you would never think that anything is wrong with him or that he spent months in horrible pain and now has severe weakness in his left hand. November 4th is CRPS Awareness and Wear Orange Day to bring awareness to this little known condition.
Complex Regional Pain Syndrome can develop from illness or injury but there is no known answer to why some people get this and some people don’t from the same illnesses or injuries. Type 1 is from an injury or illness that didn’t directly damage the nerves in your limb. Type 2 is from direct never damage. It is also known as the suicide condition as there is no known cure for it and many treatments to help the pain and other symptoms don’t help for long. Some sufferers have also willingly amputated their limbs to get some relief. CRPS affects the nervous system through the entire body, it can start in one part of your body and spread without rhyme or reason to any other part of the body. While medical documents state that the average age of diagnosis is 42, many are children and the youngest that has been diagnosed was just 18 months old. CRPS is also known as Reflex Sympathetic Dystrophy Syndrome (RDS), Reflex Neurovascular Dystrophy (RND) and Amplified Musculoskeletal Pain Syndrome (AMPS).
Some of the symptoms for CRPS are burning or throbbing pain in the affected area, sensitivity to touch or temperature, swelling, changes in skin color and texture, joint stiffness, muscle spasms and weakness, decreased ability to move or use the affected area, muscle atrophy, nail and hair changes including loss of, and changing in how you process the temperature for instance Jason feels cold when the rest of us are saying it’s hot inside. He has the skin color change, muscle weakness, sensitivity to touch and burning/throbbing pain in his left wrist and hand. Symptoms change from person to person and no two people will be affected the same way.
Jason broke his wrist during gym class in January 2017. After the 6 weeks of healing and x-rays that showed the bone was healed, he still had horrible pain. We saw our family doctor, a sport medicine specialist, an orthopedist, and finally a rheumatologist between March 2017 and January 2018. The rheumatologist was the one who finally figured out what was wrong with him. While there are many different treatments, Jason’s started with more x-rays and an EMG test (electromyography) which measures the muscle response to the nerve’s stimulation. Thankfully he passed so there is no nerve damage at the moment. He was then send to physical therapy which helped a lot with the pain. He sees a rheumatologist every 6 months to check on his progress. Another great thing that helped with his progress was belonging to a group called the Ferocious Fighters, a group for children and their parents that have been diagnosed with this monster of a condition. They sent him a care package and have sent several more letters since we joined them. Please be sure to check them out on Facebook and at their website https://www.ferociousfighters.org. If you feel moved at all to donate, all donations go to help provide care packages to kids going through this fight so they know they aren’t alone.
While this can be a rehabilitating condition, I’m so thankful that Jason is currently in a remission state. His pain is very minimal but it’s looking as he will never regain the strength in his hand that he once had. We can only hope that it stays this way for a long time but with CRPS, you can never tell. Any small injury can trigger the spread and my son loves playing sports so every line drive and run down between bases makes me catch my breathe. But I love how he won’t let his conditions stop him from living that is the biggest thing. He knows his limits but still tries with 100 percent of his heart. He inspires me.
If any of your children are fighting through a condition or illness, your child is a super star and you are a super star as well. Never give up the fight for answers for your child. CRPS has no known cure and hardly any research done on it as scientists and doctors don’t really understand it. But that doesn’t mean that we will stand by and let it take over our lives. Stand tall and stand proud CRPS fighter, you got this!!