As the weeks and months passed by, he looked and felt worse and his hands and feet were starting to turn purple red and were often cold to the touch. The relationship between neurally mediated hypotension and the chronic fatigue syndrome. The NMH didn't explain all of Stephen's symptoms and he was still determined to prove that ID wrong. His mom has to bathe and help dress him. He has to be raised by a Hoyer lift to change his sheets.
Tremors are evident at the slightest movement and any movement brings agony and discomfort.
His care is now under a family practitioner-the only doctor Stephen's dad could find to take his case and make house calls. She's not a expert in anything Stephen has but stays in touch with experts, including Dr. David Bell, who has examined Stephen, confirmed his diagnosis and taken his case to the recent international CFS medical conference in Australia. Stephen's family is now emotionally and financially drained because of his illness and there are constant battles with the insurance company over services long ago ordered and still delayed, including in-home counseling, other therapy and help for his in home care. His mom and dad's biggest worry, next to trying to help Stephen get better, is how his care will get paid for as he gets older and has to go off their insurance. Stephen doesn't understand why he is so sick.