The following is a transcript of a question-and-answer session, conducted over the FSH Society’s Facebook page, with Julie Hershberg, PT, DPT, NCS. Hershberg is a physical therapist who is a Board Certified Neurologic Specialist. She practices at [re+active] physical therapy & wellness and is an instructor in Doctor of Physical Therapy program at USC.
I have FSHD and have been in two vehicle accidents—-one in 2001 and one in 2014. Both accidents resulted in soft tissue/whiplash injuries affecting neck, shoulder, arm, spine and back areas. I am wondering if you know of any articles related to soft tissue/whiplash injury and recovery in people who have FSHD (or a similar conditions)? I am currently receiving physiotherapy, massage therapy, exercise and pool therapy (the latter two provided by a kinesiologist). I am the first client with FSHD that any of the therapists have seen and I’ve given them some articles about FSHD and exercising with FSHD but none address accident injury or treatment.
I reviewed the literature in this area and there has not been research regarding FSHD or similar disorders post whiplash injury. In looking at the research of whiplash in general, there is also not conclusive evidence that pre-existing muscle weakness or postural deformities contribute to pain or disability post injury. In that case, I don’t think there would be anything recommended from research for the therapists to do differently in managing your whiplash. I would just guess that it will likely take longer for you to heal due to potential pre-existing trunk and shoulder weakness.
Following both accidents, I have had longer term left neck/shoulder discomfort/pain. I suspect this is due to the shoulder strap of seat belt causing different pressure in left neck and shoulder area. It was 8 or 9 years (after first accident) before I could sleep on my left side and wake up without a headache. Now I am back to sleeping on my right side only and with FSHD progression (left leg is more affected / right leg compensating more + right leg is driving leg), sleeping on right side is putting more pressure on right hip/buttock area. This often results in tightness in adjacent muscles. Are there any specific suggestions to counter this? (I already have pillow between knees and do hip stretches. Sleeping on back bothers my neck/causes headaches still).
It sounds like you are doing all of the right things to help with the pain. Sometimes a simple kinesiotape for local pain relief on the hip is beneficial and I have used this to help people find comfort for sleep. After examination, most physical therapists can do the taping and if it is helpful, instruct you on how to do it on yourself