I hope everyone is enjoying the weekend. I have ran into a few issues in the last couple of weeks regarding my son, and I'm not to sure how to react. Preston is 6 and was just diagnosed with Duchenne on Jan 9th. In the last few weeks he has been complaining of pain not just in his legs, but his arms, neck and back as well. From what I read...is this not to come later? We have done hot baths, massage and streches to try and releave the pain for him. Does anyone else have a suggestion? Most important is this something I should be packing him up and heading to the hospital...Any helpful hints would be greatly appreciated. Thanks

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Not being an expert on anything but I am an RN with a DMD grandson--I would feel that this may not have anything to do with DMD--it sounds like any number of things including Lyme disease.  I would have him checked.

Thank you so much. I will do that

Has he been more active than normal? Sometimes when our boys overdo it, they get pretty sore. When my son complains, I usually give him Motrin. It could also be the stress of a new diagnosis. I would also follow up with his neurologist if you have one.

I would get him checked anyway to see if it's a physical problem, like Joanne said.

I am not saying he is not having actual pain. I don't know how much he knows about his diagnosis either, but perhaps he assumes muscular dystrophy should be painful and is just being a good boy and providing the symptoms for you.This is so new to all of you.

Eg. Here is one of my experiences: Once on his first plane ride I caught Simon, then 6 years old, actively trying to force himself to throw-up in the air-sickness bag. I said, "awww, you feel like barfing?" and he said "no, but..." and pointed at a teenaged girl sitting across the isle who was throwing up in hers. He just thought it was a requirement! When I explained that it was only if you actually felt ill, he said "oh, ok then" and folded the clean bag up and went back to coloring and was fine for the rest of the flight.

He may also enjoy the attention and massages, etc.

I hope you find a solution. This is an extra worry you don't need right after the dx.

Good luck.

A.

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