I am needing information or personal experience from anyone with peripheral neuropathy. Specifically Type 1 Diabetics. My 16 year old son has had diabetes since age 11. He had trouble the first three years getting his sugars down to acceptable levels. He ran anywhere from 200 to 500 with an average around 350. He was living with his mother during this time and would go into DKA typically twice a year. When I was able to get custody of him we managed to get his sugars down to a range of 110-165 in the past year.
Earlier this year he developed a Vitamin D Deficiency. Turns out his mother had the same problem three years ago so it runs in her family. When this happened he also developed peripheral neuropathy. This has turned out to be extremely painful for him. Not a simple "loss of sensation" but full blown screaming pain in his legs and feet. His neurologist prescribed Gabapentin at first which did absolutely nothing to dull his pain. She then added Lyrica to the Gabapentin. His original dose was 600mg Gabapentin/100mg Lyrica 3X per day. Didn't work. He was in pain at 6 hours. Doctor suggested going up to 150mg of Lyrica. Slight improvement was noted but pain still returned at six hours. We tried one dose of 200mg Lyrica and his pain went away. Did the same thing on the next two doses then stepped down to 150 mg. Still at four times per day. He was doing ok until he ran out of his Lyrica. His doctor did not rewrite the prescription for the higher dose and the insurance wouldn't cover it. By the time the problem was fixed he was off Lyrica for 24 hours. Now he is back to having pain in waves so bad it causes him to cry out for over an hour at a time. I'm talking a really tough kid here that is about to go insane. This happens four to five times a day and he has no relief.
Recently has an EMG test done and have a nerve biopsy schedule after Thanksgiving. Still waiting for an appointment with pain management doctor. In the meantime, we need to know if anyone has run into this type of severe pain from Neuropathy before. I just can't believe pain this severe could all be attributed to peripheral neuropathy. He says it feels as if someone is trying to crush his knees, shins and ankles. Also having shooting pains through his thighs and calves. Burning and stinging in his ankles and feet. It is the crushing bone pain that causes him the most pain. I am very worried about this especially in light of the amount of Lyrica he is taking right now. His prescription will run out middle of next week and I have no idea what to do about it. Although it isn't working as well as it was before he ran out last time I am still worried about running out and not being able to refill the prescription.
Has anyone run into this type of severe peripheral neuropathy before and, if so, what did you do about it?View Thread