Wellness Meeting Notes from January 9, 2023 - FSHD Society
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Wellness Meeting Notes from January 9, 2023
According to the meeting counter, there were 47 people present online which
resulted in lots of good sharing, discussion and support! Thanks everyone for your
input and many helpful suggestions!
June Kinoshita introduced this month’s meeting topic: Experience & Management of
Pain in FSHD. She reminded us (as a disclaimer) that she is not a medical professional
and isn’t licensed to practice medicine.
Pain Experiences:
• People shared a variety of pain levels from intermittent, constant, occasional.
• Levels of pain were described as mild to severe & dull/aching to cramping/severe.
• As FSHD progresses, overdoing things physically often affects pain experience.
• Areas of pain included head, neck and shoulder especially as a result of sleeping
positions. This sometimes causes headaches. Toe or foot pain may also occur.
• Lower back pain was described in the context of weakening abdominal core
muscles which cause a decrease in our ability to squat and/or lift items. Increasing
lordosis is also a factor in back pain.
• The asymmetrical aspect of FSHD is also a factor as our bodies try to compensate
for unequal muscle loss between our left and right sides.
• Several people mentioned muscle cramps that can be very painful. Cramps can be
located in back, legs or shoulder/neck areas.
• Low grade muscle aching (especially in the legs or arms) may be present.
• Numbness or heaviness in muscles can be another symptom of FSHD pain.
• Pinched tendons or nerves can also occur as muscles change during the course of
FSHD. This can be another cause of FSHD pain.
What can we do to reduce our experiences of pain? Are there things that can actually
make a difference? Group members shared many personal recommendations that are
listed below in categories.
Pay Attention to Pain
• Pain thresholds differ from person to person. However, pain is a symptom that we
shouldn’t ignore.
• It’s good to ask questions about one’s speci c experience of pain. Has the pain
suddenly occurred or has it been present for awhile? What may have triggered the
pain? Are there recent activities which may be causing pain?
• Some group members mentioned that pain can occur a day or two after overdoing
something. An example would be ignoring the initial, often very subtle sign(s) of
fipain and continuing with an activity and then waking up a day or two afterwards
with pain. Or continuing an activity because there is no pain at the time and having
pain later.
• Another question to consider relates to packing too much into one day without
taking rest breaks.
• Are we noticing signs of FSHD progression? (ie walking or climbing up stairs is
becoming slower / we are less steady on our feet / we can’t reach as high as
previously etc).
• Also, be aware that pain in one part of the body may be due to a change in another
adjacent or further away muscle.
• Share one’s observations with your doctor or other medical professionals. Even if
they may have few FSHD patients (or you are their only FSHD patient), they usually
have experience with similar conditions and may offer a helpful suggestion(s). Also,
let them now if their advice made a difference.
• Good practitioners are open to respectful dialogue with their patients/clients. If this
is not occurring, consider searching online / asking for recommendations from
others with FSHD or ask family/friends if they know of good therapists, doctors or
specialists in your location,
• Also explore FSHD Society’s YouTube channel for topics related to pain.
Bottom Line: Pain is often a component of living with FSHD and seeking help to
manage pain is absolutely valid.
Physiotherapists, Massage Therapists, Osteopaths, Chiropractors
• Several group members shared that they have bene tted by receiving bene ts
from one or more of these professionals.
• Usually larger towns have more choice than smaller or rural locations.
• Ask around for recommendations. Although FSHD isn’t well known, it may be worth
seeking suggestions of therapists etc who have experience working with people
who have had strokes or have other progressive conditions.
• One neurologist suggested (to a group member) to look for a physiotherapist who
specializes in neuromuscular conditions. This would be applicable to seeking a
therapist working in any of the above elds.
• Ultrasound treatments, TENS, and heat are all options usually available at a
physiotherapy clinic.
• Many group members have had positive experiences receiving massage therapy.
• One person found a clinic that offered lower pricing when a student therapist
provided the massage (under the direction of a licensed therapist). The student was
ful lling practicum hours (and received an introduction to FSHD too)!
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fi• Working with a new medical therapist is de nitely an opportunity to provide
educational information if they’ve not worked with FSHD clients before. It is
important to let any medical practitioner know that you have FSHD. Take an article
to share and/or type up a list of your speci c symptoms. Therapists may need to be
modify treatments and therapy (compared to treating someone who does not have
FSHD).
• Several people suggested the use of massage guns (see end of notes for websites).
• Tens machines were recommended by some group members (see end of notes).
• Applying ice and or heat to painful /sore areas may also help.
• Take advantage of heated seats if your vehicle has that feature! Some medical
supply stores sell heated cushions for cars——just plug them in on dashboard.
In Bed / Sleeping
• Getting comfortable in bed can be quite elusive when living with FSHD. Pain may
be intermittent or constant. It may be felt as achey or sharp (or somewhere in
between). It may be present when going to bed (or not) or upon arising (or
attempting to get up in the morning). Pain can even wake us up.
• Many questions & suggestions were shared.
• Taking a few minutes to do a full body stretch after laying down & after waking up is
often bene cial. Doing that provides us with time to notice if we have pain and
where it is located which in turn can assist us in deciding how to position our body
for sleep.
• One’s FSHD progression in uences choice of pillows, mattress and type of bed (ie
regular or an adjustable bed). Over time, what is comfortable may change.
• Some people nd that laying on one’s back is good for sleeping. Others are side
sleepers. Interestingly no one mentioned tummy sleeping (probably because FSHD
and neck strain are not very compatible).
• Pillows are not just to lay one’s head on——-they are useful for positioning shoulders,
arms, legs, knees or feet. They can range from regular, rm, or soft pillows to body
pillows to foam wedges (that come in various sizes).
• Given the asymmetrical aspect of FSHD, a “pillow arrangement” that works when
laying on one side may need to be adjusted when laying on one’s other side.
• A group member reminded us that using a mobility aid (ie walker or wheelchair as
needed) rather than over using our muscles to stand or walk to the point of muscle
fatigue can reduce pain when in bed.
• Google “foot cradle” or “foot drop tent” to see a variety of solutions for keeping the
weight of bedding off one’s feet. Bed boards (at foot end of bed) can also be
helpful. Night splints can assist in keeping one’s foot in a good position while
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fisleeping. A yoga block is another possible aid for resting a foot or limb while in
bed.
• All of these items can be purchased online*. Some may be available at a local
home medical store. Some may even qualify for reimbursement (with a physician’s
prescription) depending on your health plan coverage. [*Costco, Walmart, and
Amazon all have online shopping available and may offer more choice online than
in their local stores].
• Laying in bed in the morning is a good time to do some stretching exercises before
getting up.
• Using a bed rail is another aid that reduces strain on our muscles.
Over-the-counter &/or Prescription Medications
• (A disclaimer): Recognizing we are not licensed physicians or pharmacists, the
following notes are based on group members experiences using medications to
help manage FSHD pain.
• When speaking with a doctor about pain relievers, it is important to share ALL over-
the-counter pain medications, prescriptions, and supplements you are using (along
with your personal/current use of alcohol, smoking/vaping and/or recreational
drugs). Consider keeping a current list of the above to share at Dr. appointments.
• Doctors and pharmacists need this information (plus being aware of all your health
conditions) to offer solid information about possible side effects and interactions.
• Be aware that some prescriptions work for some people but not for everyone.
• Some medications that group members have been prescribed include Tramadol,
Losanapide, Celebrex, Dilantin/Diclectin, Gabapentin, and Clonazepam.
• Ask pharmacists and pharmacists questions about how the drug works, best way to
take it (and when), as well as questions about potential side effects.
• Be aware that some prescriptions work for some people while other people
experience side effects. Depending on the drug, one may have to wean off the
drug gradually if it is causing problems and/or not reducing one’s pain.
• Some group members found that using ibuprofen “as needed” is helpful. Note that
this may mean taking it every few hours regularly (for longer term pain or during a
are up of pain). At other times, using ibuprofen occasionally or for a short time is
suf cient. Please remember that ibuprofen, even though it is over the counter, has
the potential for signi cant side effects (i.e. affecting the kidney, liver, stomach, and
bleeding concerns).
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fiUse of Cannabis
• Questions about the use and effectiveness of cannabis were asked. Does it help
with FSHD?
• A few attendees shared that the use of cannabis was helpful in reducing pain
associated with FSHD.
• Cannabis comes in various forms. The availability of cannabis for medial purposes
currently differs from state to state.
• As above, there can be risks involved when using medical marijuana. It may interact
with other prescription or supplement use. It can also increase cancer risk for some
people.
More discussion = More suggestions!
• When walking distances causes muscle fatigue or sloped sidewalks/pathways are
harder to traverse, consider using a power wheelchair to guard against overuse
pain.
• Know your body, pay attention to signs of muscle fatigue, take rests as needed, and
schedule a “quiet” day before and after a busy day, if needed. Give yourself the gift
of recuperation.
• Take time to intentionally relax, to meditate, to do some deep breathing, to do
chair yoga or another activity that you nd enjoyable.
• Make time to connect with family, friends, neighbours, co-workers to enjoy some
socialization. This may be in person or via a phone visit or FaceTime or Zoom.
• Getting out in nature can be very restorative.
• Going to a warm water swimming pool (if you have access to one) can be
refreshing. Doing some stretching exercises or oating on one’s back while in a
pool can help sooth aching muscles.
• Another person found soaking in an epsom salt bath to be relaxing.
• One group member found a herbal pillow to be soothing.
• Some people recommended using topical lotions/ointments for areas of pain.
Products such as Trulieve topical gel, Arnica gel and Voltaren were suggested. The
latter is available in various strengths over the counter and a stronger version may
be prescribed.
• Someone applies a magnesium oil spray to areas of pain. Voltaren is available in
various strengths and can also be prescribed.
• A group member mentioned that we need to acknowledge (to ourselves) the
negatives of living with a FSHD diagnosis. It is a genetic condition with an
unpredictable progression from person to person. It is easy to become
discouraged as changes in mobility or pain continue. FSHD does cause limitations.
She also reminded us of the value of seeking positives in our daily lives and to
recognize the resilience that we can gain as we adapt to the changes FSHD brings
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flOur next Wellness Meeting is scheduled for Monday, February 13, wow at 2pm
(PT), 3pm (MT), 4pm (CT), 5pm (ET).
Topic: Toward Hope.
Kylee Helmke and Andrea Morales, mental health and crisis counsellors, will
share about mental health issues that can be part of living with an FSHD
diagnosis.
A reminder that there will be opportunity to visit with other group attenders by
entering the Zoom meeting half an hour ahead of the actual Wellness meeting
times! Rick Whitehead will be on hand to welcome you!
Websites shared by group members during our meeting:
(Massage gun)—-website says this product is currently unavailable but lists a similar
product that is available.
https://smile.amazon.com/gp/product/B09YGHHRHX/
ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
(Massage gun)
https://www.amazon.com/gp/aw/d/B083BY3B2T?
psc=1&ref=ppx_pop_mob_b_asin_title
(Massage gun)
https://www.amazon.com/Oster-Professional-103-Stim-U-Lax-Massager/dp/
B00107I9XM
(Tens Machine)
https://www.amazon.com/Rechargeable-Stimulator-Upgraded-Self-Adhesive-
Electrodes/dp/B06ZZ19MS3/ref=mp_s_a_1_4?
crid=37Z3OI1WH4V0B&keywords=tens+unit&qid=1673304672&spre x=tens
%2Caps%2C87&sr=8-4
fi(Magnesium oil spray) https://www.amazon.com/Pure-MAGNESIUM-OIL-Spray-Exceptional/dp/ B00Q78C1EW/ref=sr_1_1_sspa? crid=TYF9ME5IB3V1&keywords=magnesium+oil&qid=1673305323&s=instant -video&spre x=magnesium%2Cinstant-video%2C519&sr=1-1- spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEyMlVNWVdTUDlLSE VJJmVuY3J5cHRlZElkPUExMDA4MjI2MlhaMENMUkUwRjZSSCZlbmNyeXB0Z WRBZElkPUEwMzU5OTU0RUpKRVNHMU9XVDZZJndpZGdldE5hbWU9c3BfYX RmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ (An up-to-date listing of state laws about cannabis) https://norml.org/laws/medical-laws/ (A Blog by Claire-Szabo-Cassella who has FSHD) https://redscooterdiaries.com/ fi
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