Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
en English
en Englishes Spanishfr Frenchde Germanit Italiannl Dutchru Russianzh-CN Chinese (Simplified)ja Japanesehi Hindiiw Hebrewpt Portuguese
FSHD Header Logo
mobile-logo
  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Extraordinary Measures
          • 2021 Donor Impact Report
          • 2020 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torch Bearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • Patient Involvement
          • Join the True Cost of FSHD Study
          • Clinical Trials
          • Donate tissue
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • FSHD Connect Conference
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Clinical Trials
        • For Researchers
          • Apply for a Grant
          • Grants We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • For Industry
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Voice of the Patient Report
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • JOIN US
  • DONATE

Ask the Physical Therapist: How much is too much exercise and “pinging” in an arm

Home / Living with FSHD / Ask the Physical Therapist: How much is too much exercise and “pinging” in an arm

Posted on: Feb 03, 2017

The following is a partial 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.

How can we know when we are overexerting ourselves? I cannot “feel the burn” until it’s too late. Is this a normal response to exercise among FSHD patients? To preface my query: I have FSH muscular dystrophy but am what I call a “middle grounder” in the sense that I am not “normal” in appearance or walking, but don’t yet require super heavy-duty artillery (i.e., full leg braces or chair) to move around. In my youth, I was a dancer and quite an active outdoors person (hiking, swimming, bungee, hang gliding, cycling). But as I have lost my abilities to move around, I also seem to have lost my sense of when too much is too much. My brain still thinks of my “old normative lifestyle,” and my body just can’t do it anymore. What cues do I need to pay attention to when working out so I do not overtax the affected muscles?

This is such a great question, and I think a common one for those with neuromuscular disorders. I have seen this commonly in my clinical practice as well—though it is not a universal problem for everyone with FSHD. I think this is especially hard for the very active person like yourself—we are so used to just pushing through for the ultimate goal instead of necessarily listening to our bodies (I am the same way).

I think all of us as we age need to generally improve our ability to be attuned to our bodies. Everyone experiences fatigue differently, so I cannot give a very specific way for you to read your body. But I generally recommend people to set goals based on time and check-in. For example, swimming for 10-20 minutes and resting for one to two minutes and doing a check-in with your body to see what you are feeling.

If the attunement part is difficult, I highly recommend some of the mindfulness practices to help. The Body Scan is a great way to work on awareness of the body. There is a short Body Scan meditation practice available through UCLA (and many others): http://marc.ucla.edu/body.cfm?id=22. 

I don’t recommend doing the Body Scan as you exercise, but doing it separately can help with overall attunement to and awareness of the body. Finally, I recommend having someone—a friend, trainer, PT—watch how you are exercising. There may be some ways you are moving that are not efficient and may set you up for more fatigue or injury, and they could provide you with recommendations to improve the way you move.

Sometimes, especially in my arms, I feel a “ping” like a guitar string breaking. Is this the striae of a muscle? Is it dying? What does it mean?

Well—this is an interesting question! Thank you for asking it! However, without seeing you, this one is tough to know exactly what you may be experiencing in your arms. I have heard people describe “pings” to me in various circumstances that can be muscular twinges or tightness, nerve “tightness,” or even joint related. A physical therapist evaluation would help to determine the cause.

In general, the muscle degeneration that occurs with FSHD does not occur with muscle fibers “dying” instantaneously, so my guess is that this in particular is not a sensation of a dying muscle fiber specifically.

What the research shows is that muscle biopsies from people with FSHD show nonspecific myopathic changes, including rounding of muscle fibers, degenerating and regenerating fibers, increased internal nuclei, and, later in the disease course, increased fibrosis. I am not sure what these muscle fiber changes “feel” like to the person, but I often hear people say that they feel “tight” or “restricted” sometimes. Other people more predominantly notice the atrophy involved.

As far as the striae—the striations of muscle tissue are made by the repetitions of sarcomeres (made of the individual filaments of the muscles). These give the muscle the striated or striped appearance.

Share

Filed Under: Living with FSHD, PT and Exercise

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

Donation Address:

Department 960, P O Box 4106
Woburn, MA 01888    U.S.A.

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by