12. Pain


A. Context – background,

Pain is not the experience of all people with dystonia and those with some types are surprised anyone is in pain because they are not. However those who are in pain, particularly cervical, say the pain is extreme, relentless and nearly unbearable. 

People with dystonia vary about the pain they report. This is an area worth

            a lot of study because some feel discomfort, tightness, pressure but the

            word ‘pain’ may not capture what they are feeling .Others report intense

            debilitating pain. The pain seems especially common in those with cervical

            dystonia though that could be researched. What is it about some types of

            dystonia that cause pain and others that do not?

Pain is a key stressor, and rates of anxiety and depression may be linked to the nature of the pain.   Reasons for given treatments at clinic may be useful to study because pain alleviation may be key. Desperation when pain is not alleviated may also be a key factor leading people to suicidal thoughts.

It seemed therefore very important to ask precise questions about the experience of pain.

Mankoski pain scale

McGill pain questionnaire

a scale from Phohealth.com

0 – pain free

1 – mild, barely noticeable, barley think about it

2 – minor- annoying, with occasional stronger twinges

3 – uncomfortable – noticeable, distracting, but I get used to it and adapt

4 – moderate – can be ignored if I deeply involved in an activity but

            it is still distracting

5 – distracting- moderately strong, can’t be ignored for more than a

            few minutes but with effort I can still manage to work or

            participate in some activities

6 – distressing- moderately strong, interferes with normal daily

            activities and I have difficulty concentrating

7 – severe – dominates my senses and significantly limits my

            ability to perform daily activities or maintain social

            relationships, and interferes with sleep

8 – intense – limits my physical activity severely and

            conversing requires effort

9 –  excruciating- unable to converse and I cry out or

            moan uncontrollably

10- unspeakable – I am bedridden, possibly delirious

            and very few people experience this level of pain

Pain is subjective. People may differ in pain tolerance or in their openness to admit if they have trouble coping with it. An objective scale would be useful but is difficult to develop. Patients in an informal setting may report pain differently than in a doctor’s office. If they say that the pain is killing them a friend may just see that as dramatic sharing of a challenge. They may fear however that a doctor may be obliged to treat such a report as an indicator of intense treatable anxiety so they, not wanting that may vary how they describe it based on listener. An online anonymous survey may capture more frank reporting without fear of repercussion. The reporting of when pain is worse or the nature of its presentation may be less subjective and seems rich in potential to help understand dystonia.

Pain is a common area of research in its relation to mental health. As an indicator of the body registering a problem such as a pin pricking a finger, pain is normally seen by patients as a sign, an alert not an enemy. However dystonia pain seems so relentless for some patients that it stops seeming just a friend giving a reminder.  Patients are conflicted in understanding pain because physiotherapists and athletes often say there is, good pain and bad pain. Stretching a muscle gently but progressively over time can be useful exercise though it creates some pain.   Patients who exercise their dystonia muscles report varying effects with some saying that over time, even though there is pain as they try to move the muscle, it seems to be a good thing to keep that muscle able to make wider motions. Others report that sometimes short term, the pain of exercise results in more pain later so they wonder if it was worth it. The experience patients have with pain management may hold useful information about the nature of dystonia.

B. What seems useful to study further, areas of mystery

Pain is a general word and scales to measure it look at intensity location, and nature of the pain. . It might be useful to delve more deeply into the type of pain for what this might reveal about what is causing it or when it happens.

-if there is pain and if there is, its intensity

-its nature – prickles, electric zaps, sharp stabs, burning, dull ache

-muscle tightness, rigidity and discomfort

-pressure on the body to move it a certain way

-its frequency- tremor, shakes, spasms, or constant nature

-its effect on daily life – when it is worse or better -studied in the daily activities survey

-what is done to alleviate it – studied in the coping survey

-effect of treatments – in the surveys on treatments and alternative treatments

nociception – sense of pain

            Ability to feel pain does not seem impaired with dystonia.

thermo recepito – sense of temperature

            Ability to register what is hot or cold does not seem impaired

            with dystonia. However temperature seems a key factor in its

            management with many patients reporting that they find heating

            pads, hot baths useful. Some may use coldpacks.

            Some report the effect of very hot weather

            or cold weather on the dystonia, with cold weather

            making the body tense up and the dystonia then seem worse.

            The effect of a heat on the head or a mask on the face may add

            warmth but may also simulate a sensory trick to the temple,

            side of head or chin that seems to reduce the dystonia.

1. Comments from clinical studies and researchers

-With the exception of cervical dystonia and some presentations of post traumatic disorder, pain is not common in primary dystonia

-With hand dystonia it is still unclear where the pain is coming from. The location of the pathology is unclear.

-The cause of pain in patients with cervical dystonia is not known

2.  Comments from patient experience

It feels like the meat from the muscles around my tarps is about to fall off

It almost felt like that someone was stretching my muscle almost to  where I had no control over it

My scalp hurts like stinging bees

When I try to turn my head it feels like there’s a sharp knife in my neck

It feels like a game is being played on me, twisting me till I beg for mercy

It feels like a railroad is being hammered into my neck

It feels like I have a toothache in my neck

My body feels like a wet towel being twisted in two directions

It feels like I have a charley horse that doesn’t go away

I feel like I have been hit by a train

It feels like a key is stuck in the back of my head and slowly being wound up

When I try to turn my head, it feels like there’s a sharp knife in my neck

It feels like there is a G force pushing my neck sideways

At first when my head started to tilt a bit I was not in any pain

I carry my small children on the left side but I was having pain on my right

I could not sit without head support because of the pain

I had never had pain like that

I have no pain which is amazing compared to what most fellow patients experience

I’m in great pain 75% of the time

My foot hurts sometimes when I stand but not when I sit or lie down

The leg and arm contortions were extremely painful

The muscle cramps are like a Charley horse that stays

I hurt all the time

The pain pulled me into a fetal position

Crippling pain made it so I could barely think

The pain in my head was so bad that at night it felt like I was lying on rocks

The pain was unbearable, like I could not cope with the weight of my body

C.  How to ask

-questions chosen were based on clinical studies, biographies, patient comments


D. Question categories


amount, intensity

body part affected, body evidence

cramp, charley horse – see also movement- spasm

delay- 45 second rule



muscle tightness, stiffness, rigidity


pattern along body – see also symptom progression – change in body area

pattern, time of day, weather see also symptom progression weather

pressure pushing you, force

tingling, crawling feeling

E – Questions asked  -survey number, question number

surveys 2A and 23

F. Results of questions – percent answers per question


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)

(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)

A1             Pain

1. amount, intensity

            22.57% I am in intense pain nearly nonstop

              44.95%  I am in intense pain sometimes

              32.48% I am not in intense pain (1-3)

-pain intensity

            18.18% the dystonia does not cause me pain

            13.64% my pain is a dull ache

            40.91% I can ignore the pain for a few minutes if I am very involved

                        in an activity

            50.00% the pain is annoying but I am used to it

            45.45% the pain is sometimes so intense that I have trouble listening

                        when other people speak

            40.91% the pain so intense that it sometimes interferes with my sleep

            13.64% the pain is unspeakable and I am sometimes bedridden with it

            4.55% the pain is so bad that I sometimes fear I will pass out (23-16)

-pain experience

               13.7%  there is no pain

               24.49% there is constant intense pain

            38.27%  there is constant low intensity aching

            29.08%  there is sometimes intense stabbing pain

            52.55%  I have several types of pain

            11.73%  the pain all comes from one place

            23.47%  the pain moves to other parts of the body

            15.31% the pain is less intense when I am busy

                         doing something they enjoy

            42.35%  the pain is worse when the body is tired

            16.33%  I am  unsure how to describe my pain (2A- 21)

-pain location

            18.18% dystonia does not cause me any pain

            18.18% I have pain behind my ear

            4.55% the skin is so sensitive in the area it hurts to have cloth

                        touch it

            68.18% some body positions hurt and some do not

            22.73%  nearly all body positions hurt. I shift often to try to find

                        one that hurts less (23-15)

-variations of pain

            28.57% my neck twists so much I sometimes fear I might choke

            14.29% the pain is worse if I stretch myfinger or toes to their straightest


            9.52% the pain is less if I stretch my finger or toes to  their straightest


            14.29% I seem more sensitive to pain now such as pain from a paper cut

            4.76% I seem less sensitive to pain now such as pain from a paper cut

            71.43% I have not noticed any change in how sensitive I am to other pain                  (23-17)

2. pressure, force

-conflicting messages

            12.5% I am dealing with pressure in one direction only

            56.25% I am dealing at the same time with more than one pressure

            43.75%One way to do an action seems blocked so I am choosing to do a                                  work around answer to still meet the goal

            37.5% I am often balancing conflicting messages from my body

            25.0% I am giving new messages of instruction to counter the dystonia                                  message  (20A-30)

3. headaches


            22.16% I nearly never have headaches

            39.69% I sometimes have headaches

            23.71% I often have headaches

            7.22% My headaches are debilitating  (2A- 23)


            47.83% I have not noticed any new headache patterns with dystonia

            30.43% I always have gotten bad headaches or migraines

            26.09% I have more headaches since dystonia

            4.35% I have fewer headaches since dystonia (23-5)

4. cramp, charley horse

-muscle cramps

            9.43% I do not have muscle cramps

            28.30% I have occasional muscle cramps

            36.79% I have frequent muscle cramps

            31.13% The cramps happen unpredictably

            23.11%The cramps happen after I try to move or stretch

            38.68% The cramps are like a charley horse, very painful

            36.79% I often rub the cramped muscle to relieve discomfort

            14.15% The cramp discomfort only lasts a few minutes (2A – 3)


            22.73% I get sudden painful cramps in my toes

            27.27% I get sudden painful camps in my calves

            18.18% I get sudden painful cramps in my arms

            45.45% I get muscles cramps sometimes when I am at rest

            31.82% I get muscle cramps sometimes when stretching

            22.73% The cramps happen most when I am under stress

            27.27% I do not get muscle cramps

            18.18% I have not noticed a particular pattern to the cramps (23-4)

5.muscle tightness, stiffness, rigidity

-Do you have muscle rigidity?

            46.95% yes constantly

            34.74% yes, occasionally

            18.31% no  (2A – 1)


            64.71% I have extreme muscle tightness that causes me pain

            35.29% I am under intense force to hold a body position, with pain

            35.29% I sometimes have sudden intense stabbing pain

            47.06% I have sudden intense cramping with pain, like charley horse

            47.06%  I have constant low grade aching

            29.41% I have pins and needles pain

            23.53% I have burning pain

            47.06%  I have several types of pain at various times

            70.59% My pain level changes over the course of a day

            11.76% I am intense constant pain and it is relentless

            17.65% My pain is constant but I would call it mild

            5.89%  My pain is only occasional

            11.76% I feel no pain due to dystonia

            35.29% The movements the dystonia forces me into are painful

            47.06% The positions the dystonia forces me into are painful

            17.65% The dystonia does not seem to cause me pain (20A-15)


-do any parts of your body feel numb?

            20.0% yes often

            29.74% yes but only occasionally

            42.56% no ( 2A – 22)

7. coping with pain

-Do you try hundreds of body positions to deal with dystonia?

            52.65% yes

            47.35% no (1-15)

-Does just touching the dystonic muscle cause pain?

            30.30% yes

            69.70% no (13-12)

-Does stretching the dystonia muscle cause pain?

            21.21% yes and it feels like stretching causes harm

            39.39% yes but it feels like stretching it is beneficial

            30.30% no, it does not cause pain (13-13)

-reaction to pain

            53.94% Normally I handle minor pain like a cut quite easily

            5.88%            Normally I get quite upset over a cut. I just don’t like pain

            64.71% I think people differ in pain tolerance

            82.35% I have a high level of pain tolerance in general

            11.76% I have a moderate level of pain tolerance in general

            5.88% I have a low level of pain tolerance in general

            23.53% The pain with dystonia is way beyond anything I’ve experienced             (20A- 17)

G. Analysis

Pain seems a significant area of divergence between types of dystonia, with those with finger dystonia usually reporting no pain while those with cervical dystonia report extreme and constant pain.

The way pain operates clearly differs and bears study.

When there is pain, the injured area of the body registers it through pain receptor nociceptors that can detect chemicals like capsaicin or temperature or pulled tendons. A fibers send an emergency fast message to the brain and C fibers may send a slower message to other areas of the brain. The dorsal horn helps transmit the pain message to the spinal cord and  brain and also helps bring a motor message back from the brain of how to respond. Reflexes create many fast responses immediately.

When the area injured is no longer being injured the pain may subside but with chronic pain it continues, with studies finding that there is continued damage somewhere along this system. Since with dystonia in most areas of the body there is no evidence of physical injury at the sensory end, it is unclear what the source of pain is unless the tautness of the muscle itself is giving the pain message.  What seems useful to study is what type of dystonia has pain, to see if there are patterns. It may be useful to study if the pain is still felt at some positions or doing some motions and what helps alleviate it. If the pain however is felt regardless of activity, that may suggest that pain is itself a message, of a body in crisis, or a message in error, a constant misfiring from the body to the brain.

presence of pain

-67.52% of patients report intense pain either nonstop or sometimes Only 32.48% report no pain. It is  possible that those with hand or vocal cord dystonia have no pain and those with cervical have intense pain but this statistic does not itself capture type of dystonia

-Those who report no pain from dystonia vary from 13.7 -18.18%  This suggests that over 80% of people with dystonia do have pain though some do not call it intense.

pain over time

-This question does not capture how long a person has had dystonia. It may be that over time a person either gets used to the pain and attends to it less as crisis or that the pain actually registers differently. 50% report that they find the pain annoying but are used to it.  However 40.91% report that they find it so intense that it interferes with sleep and this pattern is not necessarily eased over time. 53.94% feel they normally handle minor pain quite easily and 82.35% say they normally have a high level of pain tolerance. This is an interesting statistic. It suggests that those with dystonia over time have dealt with pain for so long that put in perspective, other pain now seems less. There is a theory that quiet, stoic personalities who have a tendency to not report pain and to just endure it are more at risk of developing dystonia. The statistics does not lend clear support to either interpretation.

types of pain

13.64% – 38.27% -47.06% report a low intensity aching, 29.08% intense stabbing pain, 29.41% pins and needles pain, 23.53% burning pain . Study of these statistics may be hampered by personal pain experience, personal pain tolerance and disagreement on meaning of some terms for pain.  A reliable objective measurement of pain is not currently available. However the burning and pins and needles experience is less common than is the intense pain or low intensity ache.  Where there is burning or an electrical zapping pain one might wonder about neurological differences.

pain and distraction

-15,31% of patients report that they can ignore the pain somewhat when doing an enjoyable activity This is consistent with common experience that music or laughter can alleviate experience of pain briefly, possibly with higher production of endorphins. However only 15% reported this relief. That suggests the dystonia pressure and pain are in a special category of intensity in the brain. Historically any observation that patients seemed occasionally suffering less has led some observers to assume that they were just faking the symptoms and forgot to fake when they were busy doing something else.

– 42.35% report that the pain is worse when they are tired, and 22.27%

say cramps are worse when they are under stress. This may suggest that the muscle is dealing normally with stimuli but still gets tired when overused, and that normal tightness of stress may simply be added to with dystonia tightness already there.

pain and touch sensitivity

-The hypotheis  that sensation on the skin is altered with dystonia is not clearly supported. The link seems very small  Only14.29% report that they seem more sensitive to minor cuts now and 4.76% say they are less sensitive to cuts now. 71.43% report no change in how sensitive they are to other pain.
30.30% report that just touching the dystonic muscle causes pain but 69.70% said it does not.  With other medical conditions such as autism, some patients are touch sensitive and repelled by any touch, while others are comforted by a hug. One might wonder if the ability to sense stimuli in dystonia in some patients is made hyper alert and in others not.

pain and conflicting messages

-Many patients report dealing with not just one motor message with dystonia.

37.5% report they are balancing conflicting messages from the body.

 Some report the conflicting message is between normal and dystonia.

12.5% say they are dealing with pressure in one direction only

25% say they are giving messages of instruction to counter the dystonia message.

Some report conflicting messages between several types of dystonia -eg. tilt head left, tit head down, pull chin in.

56 25% say they are dealing at the same time with more than one pressure

pain and effect of exercise

-Patients report different effects of exercise.

68.18% say that some body positions hurt and some do not.

14.29% say the pain is worse if they stretch their fingers or toes but 9.52% say the pain  is less by such stretching.

60.6% say stretching causes pain though a third say that the stretching feels like it is causing harm while two thirds think it is doing some good

These reports are consistent with patient anecdotal reports that some feel exercise sessions help while others say the benefit is short lived or that they feel worse after.  The small group of people who find that sensory tricks make the dystonia worse may be reporting an experience of touch or stretch.

patterns of pain

Anecdotally patients often express frustration that their pain is so unpredictable. The surveys confirm this.

-11.73% say the pain moves to other parts of the body. 

-24.49% say the pain is constant and intense, 38.27% say it is constant and low intensity, 

-5.89% say the pain is only occasional. 68.18% say some body positions hurt and some do not.

-22.73% say that all body positions hurt and they shift to try to find a less painful one.

-17.65% report constant but mild pain, 5,89% only occasional pain and 11.76% no pain.

What people do to alleviate pain may also cause pain.

35.29% say that the movements the dystonia forces them into are painful, 47.06% say the positions the dystonia forces them into are painful. 22.73% say that nearly

all body positions hurt

– Cramps are reported by 36.79% as frequent and by 21.13% as unpredictable. Sudden painful cramps were reported by 22.7% in the toes, 27.27% in the calves, 18.18% in the arms. Cramps are reported by  45.45% to happen sometimes when at rest and by 31.82% sometimes when stretching. The unpredictability of the pain with attempts to reduce it only partly successful may have strong implications for mood. Pain seems augmented by fatigue as the physical exhaustion of trying to find less painful positions combines with the mental exhaustion of psyching oneself up each day.


-Headaches do not seem a key factor with dystonia. Though 39.69% report they sometimes have headaches and 23.71% say they often have headaches, 47.83% say that the headache pattern does not seem to have changed since they got dystonia. 26.09% say they have more headaches and 4.35% say they have fewer headaches since dystonia.

The presence of headaches is a difficult metric for dystonia since the general population also gets headaches from lack of sleep, poor posture, skipped meals, red wine or  nitrates in food. Since dystonia can lead to problems sleeping, problems eating and risk of skipped meals headaches may be linked to those causes not dystonia itself. Since pain medication when overused can also lead to headaches, the presence of a headache may not be itself due to dystonia.