Symptoms – Appearance
A. Context
How people appear to strangers is a key factor in social ease, people with dystonia often express concern about how they appear. Some try to mask neck tilts with scarves, face anomalies with masks, and try various gestures like leaning against walls to appear in normal casual pose. Others reduce social interaction due to appearance and fear of stigma. Many fear their appearance is a factor at being hired for certain jobs.
How one appears in the mirror affects self esteem and self-acceptance. Some patients report they deal with low self-esteem daily, even not wanting to be in photographs, not wanting to be seen in webinars.
Those whose dystonia affects their speech may by physical appearance seem like the general population and easily accepted but once they try to talk notice a real shift. Their problem speaking creates frustration and they report difficult social interactions as they try to speak on a telephone, do a public speaking role, speak at a conference, talk at a drive-through.
B. Comments
from clinical studies and researchers
Dystonia is one of the most visible disabilities
from patient experience
how they may appear to others
At least with covid masks nobody can see my face twist
I am a one person freak show
My head nods so much I look like a nodding dog
I stand like the tower of Pisa
I am becoming the crooked man who walked a crooked mille
I am thinking of changing my name to Eileen
I have a dromedary walk
I have a robotic walk
I just point to my neck and say ‘damage”
I walk like a wonky donkey
I walk like the Tin Man
It is hard to look in the mirror at my bendy straw neck
My body is twisted like a corkscrew
My head is like a bent doll
When a group of us get together, neighbors may think it is the apocalypse
Dystonia has destroyed my posture
I must look like a bobblehead
Before dystonia I always felt I had a beautiful neck
My mirror reflection disgusted me at that point
Sometimes I feel like a freak
how they may sound to others
I am croaky
I sound like a cartoon character on helium
I sound like a frog
I sound like the 3 stooges
C. How to ask
Source of question ideas: – patient reports, clinical studies, biographies
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D. Question categories
appearance in mirror or to strangers
lumps, knots
sensitivity, ability to feel heat, cold, roughness
E. – Questions asked -survey number, question number
surveys 2A and 23
F. Results of questions – percent answers per question
symptoms
2A 217 symptoms 26 40 76 5
23 24 symptoms 18 24 81 3
max. no. respondents 217
total questions 64
likely type of dystonia – all
percent of all respondents doing survey 217 or 508 or 42.7%
(It is assumed for all surveys that those who did a topic in the first group were the only ones like to proceed to the second set. That also is an assumption but is likely true)
G. Results
Appearance
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one,, question 3)
Do you have tight muscles forcing odd postures?
74.26% yes
25.74% no (1-1)
Is your dystonia visible to a stranger?
80.82% yes
19.18% no (1-18)
Does your dystonia make a muscle pop out or stick out?
33.50% Yes I often see a muscle sticking out prominently
19.50% Yes I sometimes see a muscle sticking out prominently
26.50% No I see no muscles sticking out more prominently (2A -1 3)
physical appearance
33.33% some muscles are thicker, as if I am a body builder in that part
45.83% My neck muscles stand out oddly
8.33% My thighs are flabbier
58.33% My head is tilted
20.83 My body is tilted\
50.00% My tremor is visible
37.50% My dystonia is not visible to strangers- eg. vocal cords (23-1)
physical appearance – legs, feet, toes
0% My dystonia muscles look oddly big on one side of the body
33.33% The way I move may make people think I’m drunk or on drugs
66.67% My dystonia is visible to strangers (32-1)
self confidence and appearance
66.67% I am sad my dystonia is so visible
50.00% I am sad if someone mistakes my tremors for nervousness
50.00% I look in the mirror less now (39-2)
pain and facial expression
15.26% You can’t tell by my face that I am in pain
25.79% I tend to scrunch my eyes when I am in pain
38.42% I tend to tense my jaw when I am in pain
4.74% I tend to flare my nostrils when I am in pain
43.68% I try hard to not look like I am in pain (2A-25)
lumps, knots
54.72% I can feel lumps or knots in my affected muscles
28.77% The physiotherapist or doctor says they feel lumps or knots there
23.11% I do not feel lumps or knots in the affected muscles (2A -5)
H. Analysis
Respondents reported that a stranger can readily see their medical problem in 66.67% -80.82% of the cases.
The concerns seem to be
74.26% odd postures
58.33% tilt of head
50.0% visible tremor
45.83% – 53.0% muscle sticking out prominently
33.33% motion appearing like drunk or on drugs
20.83% tilt of body
43.68% say they try hard to not look like they are in pain. Such an effort may suggest shyness, fear of mocking or of negative reaction or consideration to not worry others nearby.
Some expressions of pain however are likely involuntary such as wincing at sudden pain. The way that pain is expressed on the face may be a potential metric for pain assessment however, if there is involuntary tightening of muscles when pain is experienced. Such metrics have been devised by vets examining cats to measure their pain. It is difficult to find an objective pain measurement, so responses may capture both the technical magnitude of pain and the way this person registers the pain.
38.42% say they tense their jaw when in pain
25.79% say they scrunch their eyes in pain
15.26% say an observer cannot tell by their face that they are in pain
4.74% say they flare their nostrils when in pain
Some patients report that they hold their breath, or blow air gently out to suppress more dramatic reaction. These may be subtle indicators of efforts to cope with and sometimes mask pain.
The presence of a visible lump or knot of a muscle, seems to startle patients and is a cause for many on social media to photograph this muscle for others to see. The fact of photographing it suggests a few other factors:
-the muscle being visibly odd, is proof and confirms to the patient that the condition is not imaginary
-some patients express loss, sadness, embarrassment when their physical appearance is changed
Patients express concern about what forms the muscle knots, and what may reduces them. Athletes often find muscles knot up and they need massages and workouts to stretch them. In muscle knots in the general population the cause may be poor posture, inadequate support sitting, toxin, over-exercise, lifting weights improperly, injury due to a fall. The link between that type of knot and dystonia knots may be useful to explore.
-the cause of muscle knots can be poor nutrition or dehydration. With dystonia if the person has trouble chewing or swallowing there is risk they will have those factors for muscle knots.
-a muscle knot can be the size of a pin head to the size of a thumb. With dystonia the muscle knots seem much larger. In the mirror, in photos and to the touch patients say they often seem very large.
-muscle knots are caused when the actin and myosin fibres shorten as the muscle contracts. Briefly the blood moves away from the area and less oxygen reaches the muscle. It is not clear whether in dystonia there is less blood or less oxygen getting to the dystonia muscle,
-muscle knots can be alleviated by rubbing the area gently in a circular motion or by heat and cold. These strategies also seem to reduce some of the pain of the dystonic muscle but not all of it. The knot of the dystonic muscle seems much tighter and more resistant to being reduced by massage.
Lived Experience With Dystonia 