One Man’s Journey for Healing
It was late January when Lee Morrell first started to feel extreme fatigue and soreness in his muscles. Realizing these were strange symptoms for him, he went to see his doctor at Kaiser Permanente where, after a number of blood tests, he was tentatively diagnosed with rhabdomyolysis, a condition where there is dehydration of muscles caused by proteins created by the kidneys.
“It became more and more difficult to lift my arms or use my legs,” said Lee.
An unusual diagnosis, often seen in dedicated CrossFit trainers, the rhabdomyolysis was brought on by a series of overexertions (helping friends move, putting away Christmas decorations, moving heavy exercise equipment, etc). His doctor immediately prescribed a regular dosage of intravenous fluids. Although fluids typically aid to alleviate this discomfort, the muscle fatigue was not relieving and was actually getting worse over time.
With no medical history in his family to help identify what the growing symptoms could be associated with, he and his doctors were dumbfounded. They had never seen such a case and were stuck with what to do, leading Lee to undergo a number of tests with various doctors over the next several months. With still no answers and chronic discomfort, Lee was disappointed and confused with what steps to take next.
“I kind of got sick of hearing my doctors call this a ‘perplexing’ case and my potential diagnosis a ‘unicorn’,” he said.
In April, after being unable to continue working at the Saugus Union School District as Public Information Officer, Lee unexpectedly fell and, with the high level of muscle degeneration caused by whatever was affecting him, he lost all ability to even attempt to lift himself up which led to hospitalization.
“Being admitted into the hospital was a blessing in disguise as I got the answers I’d been seeking and a course of treatment needed to begin to live my life again,” he said. “When I was there, every day for almost a week, my doctors were kind of forced to deal with my case daily, so they could release me.”
The doctors discovered Lee actually had dermatomyositis, a rare disease only seen in 9.6 out of a million cases per year, and that apparently had been triggered by the rhabdomyolysis he had experienced months prior.
Dermatomyositis is associated with extreme muscle weakness leading to the inability to use the trunk muscles such as arms and legs along with a chronic painful rash. Lee now takes methotrexate once a week alongside prednisone, a hormone steroid, which has given him the energy he needed to succeed in physical and occupational therapy. He is beginning to learn again how to perform activities of daily living such as walking, cooking and brushing his hair, tasks we all take for granted far too often in our lives.
“I just want to be able to play softball again,” Lee said. “I’m almost there. I play on two teams filled with great friends and I miss being on the field, both as a player and as a friend. That has been one of the most difficult things I have had to give up…that and traveling. But I will be doing both again, soon.”
Lee shared he believes the first and foremost important action to take when you feel something is not right with your body, is to go to the doctor and get help with understanding your diagnosis as soon as possible. The second piece of advice is be your own advocate; get the answers you need and stand up for yourself. Having a chronic illness can unexpectedly enter your life without any forewarning and it can lead to an emotional rollercoaster. If any of you or your loved ones are suffering from a chronic illness, it is important to incorporate into a regime a loving social support system and search for local organizations offering resources in this time of need.
“I just want people to know that chronic autoimmune disorders are real. If you see someone parking in a handicapped spot and they don’t ‘look sick,’ they have something you don’t understand,” Lee added. He also recommended researching myositis and consider making a donation to the Myositis Association (https://www.myositis.org/) to help other “unicorns” like him.
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