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Pain in Duchenne

My son's DMD symptoms have always been manifested in muscle pain first in his legs and now pain in his neck and shoulders. Do any of your boys have this problem? All the doctors I have talked to have said it is very unusual. He is 5 years old and very active. We don't feel the need to start steroids yet but I wonder if it would somehow help with his pain. Any feedback would be appreciated.

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Permalink Reply by Darcy Tumminello on February 24, 2013 at 7:40pm

My son has the same pain but not often. We just massage his shoulders from time to time.

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Permalink Reply by Nicole France on February 26, 2013 at 12:11pm

My son is 12 and has always complained of aches/pain in his legs and hands. He has even had complete numbness with extreme sensitivity when touched in his left thigh. I read pain is not normal with Duchenne, which seems odd to me when you are talking about lost of muscle and mobility in limbs. We usually give Riley ibuprofen and have him relax in warm baths or showers. Sometimes it lasts a few hours and other times several days.

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Permalink Reply by Shawn on March 27, 2013 at 9:10pm

We've found much relief through the use of several interventions: weekly visits with a good physical therapist (who is used to working on neck/shoulder/back strains/pain/etc.) who uses a TENS unit, ultrasound, soft tissue work and extensive manipulation; bi-monthly visits with a good massage therapist for +/- 30 minutes of deep soft tissue and muscle work; hot packs (microwavable kind) resting on the area in pain - used whenever pain is strong; daily gentle stretching of the affected area; and daily gentle massage (+/- 5 minutes per day). The combination of these therapies have proven very effective for our 7 1/2 year old, Sam, who does not have fractures, just suffers from neck/shoulder pain due to poor posture brought on by weak core muscles. We often sing songs and tell jokes and laugh, too - we're firm believers in the power God has given us to overcome seemingly insurmountable obstacles! As an aside, we started Deflazacort when Sam turned 6 and haven't looked back. Although there are side effects, the Deflazacort has been a true God-send - the difference in his physical ability is like night and day. :o)