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Focal Dystonia of the Hand, and what the Brain has to do with it

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Biology 202
2001 Second Web Report
On Serendip

Focal Dystonia of the Hand, and what the Brain has to do with it

Henrike Blumenfeld

The body is complicated, and often the origins of a condition are all but obvious. Focal dystonia of the hand is one disorder whose underlying cause has been found in the more recent past. Although it can be genetic (1), the form of focal dystonia of the hand I look at here is caused by environmental factors (2).

Focal dystonia of the hand is a condition characterized by a loss in motor control of one or more fingers. A single muscle or group of muscles is involved: muscles in the hand and forearm tense and tighten, with the result of making the hand (or part of it) curl (2). Musicians who have intensively practiced their instruments over a number of years are a group most affected by this condition. The reason is that focal dystonia can be caused by the repetitive movement of the fingers over a significant period of time. The condition was long known as "occupational hand cramp." (3). It can easily be misdiagnosed as simple overuse or stress of the hand (1). Although it may not be obvious at first sight of the symptoms, the level at which the problem is caused is not the hand, but the brain.

Researchers at the University of Konstanz report "overlap or smearing of the homuncular organization of the representation of the digits in the primary somatosensory cortex" (3). Given that functions such as motor control cross over from the right side of the body to be represented in the left hemisphere, they found that the distance between the representations of individual fingers was smaller in the somatosensory cortex side corresponding to the hand that had undergone continued repetitious training (the left hand in case of violin players for example).

What does all this mean in terms of the brain? Looking at the central nervous system as an input-output system, in very simple terms we can observe that a specific input is presented over and over again - in this case the stimulation of the fingers that play the violin - and as a result the organization within the box changes. More specifically, there is a one-to-one correspondence between input and internal representations of this input: all fingers are individually represented on the somatosensory cortex. But somehow, as these regions of representation begin to smear or overlap, the one-to-one correspondence is blurred.

And the result? The problem turns into one of perception and motor control. Subjects with dystonia of the hand consistently are unable to localize light pressure stimuli applied to the tips of the fingers on the correct finger(4). Further, fingers in question cannot be moved individually, and specific movements or movement sequences cannot be controlled any longer (5). We get similar effects in blind people who read Braille with several fingers at once: they develop a single representation of all these fingers on the somatosensory cortex, but are not able to determine which part of the information received in the brain comes from which finger (6). Psychologist Thomas Elbert further points out a parallel of this in all of us: our toes are generally stimulated only simultaneously as we walk, and most of us have trouble telling which of the middle toes has been touched upon application of a light pressure stimulus. Indeed, our toes are not individually represented on the somatosensory cortex as our fingers are (6).

As we can see, through some process, representations in the brain have become reorganized in a way that makes it difficult to distinguish between certain afferent inputs. These inputs enter the peripheral nervous system close to each other, say via two adjacent fingers, and have been presented to the system simultaneously over and over again. The examples are stimulation of the first and the second fingers in quick musical sequences - so quick that stimulation can be seen by the system to happen simultaneously - or continuous use of several fingers in reading Braille (6).

This continuous pairing of two (or more) stimuli, until their representations in the brain merge, is not a new idea. It has been established that if two connected neurons are stimulated at the same time, the connection between them is strengthened (7), and rules of associative learning have been based on this idea. Fittingly, Dr Merzenich of the University of California San Francisco calls focal dystonia of the hand a "learning-based catastrophe" and a "failure of the brain's learning processes" (5). Consequently, he focuses on developing techniques that will help to "re-normalize the learning system", in helping to newly distinguish the areas on the somatosensory cortex that have become blurred. Although this approach is very new, Merzenich claims some good results in training children with linguistic impairments, such as dyslexia, which show similar blurring of representations in the brain (5).

The form of focal dystonia of the hand that is caused by repetitious training of two or more inputs is a clear indicator of the brain's ability to restructure itself. Traditionally, the belief has been that the capacity to restructure is present during childhood, and that the adult brain shows little room for change (6). However, as we can see, the adult brain is still capable of rather far-reaching change, and the old view of a hard-wired adult brain is thus being challenged. Further, we have seen that the central nervous system reacts to the kind of input it receives from the outside world, and the context this input is presented in (what are other impulses presented at the same time?). According to what these inputs are, there seems to be at least some leeway for the brain to adjust, in order to process these inputs in a way that may be more efficient. Indeed, this movement towards efficiency is fulfilled in the combining of various fingers into one larger representation in blind readers of Braille. Those skilled at reading Braille with multiple fingers are quicker than readers of Braille that use only a single finger. However, focal dystonia of the hand also suggests that there may be some rare inputs (such as long-term repetitious practicing of fast musical sequences) that "trick" the central nervous system into making changes that are clearly less beneficial.


WWW Sources

1)The most dangerous medical condition of all: Focal Dystonia, Largely anecdotal site about musicians' experience with Focal Dystonia

2)Research: Recent Findings Lead to New Understanding of Dystonia , More technical but very informative article about Dystonia from theScientist, subscribe for free to access

3)Focal hand Dystonia in musicians, Short and accessible summary of ongoing research activities at the University of Konstanz. Further links on the dystonias available from this site

4)Cortical Representational Plasticity, Brief research summary on brain plasticity, repetitive stimuli and focal dystonia

5)"Catastrophic Breakdowns" in the Brain's Learning Systems, Article on Dr Merzenich(UCSF)'s research into focal dystonia, other neurological disorders, and his theory about seeing them as breakdowns in the brain's learning system

6)Radio National Health Report on Brain Plasticity, Transcript of an interview with Thomas Elbert of the University of Konstanz about focal dystonia in musicians and Braille reading.

7)Enchanted Mind: Brain Plasticity, General site about brain plasticity, the learning process, and how to maximize this process.



Continuing conversation
(to contribute your own observations/thoughts, post a comment below)

01/03/2006, from a Reader on the Web

I was diagnosed with Focal Dystonia in my writing hand in early 1999. I was treated with Botox but they gave me too much of an injection and my arm/hand was paralyized temporarily for approx. 2.5 weeks. My writing became much better for about 1.5 weeks after the injection but the pain before the progress was not worth it for me to go back for more (approx. 300.00 cdn per dose). I suffer more so today and can barely hold a pen anymore and if I do it is only for a few minutes and my arm and hand ache for a few hours following. My question is: Does stress or anxiety or depression exacerbate the dystonia i.e. nervous and excessive shaking of the hand? Is there anything else I can do to help myself?


Additional comments made prior to 2007
I was diagnosed with Focal Dystonia about seven years ago,i also had the botox injections in thirteen muscles in my arm and hand,it was the very painfull. It caused my fingers to be stationary in one position and i had to use my other hand to straighten them. I also went to occupational therepy and they treated it as carpal tunnel.I have been right handed all my life, now i have taught myself to write left handed and do just as well. I have mastered printing but my cursive writing is still alittle bad, but ledgible. My work requires alot of writing and my brain still thinks i am right handed, because i get frustrated sometimes because i put writing off as long as possible, then i get behind and have to rush to get it done. I hope that this never effects my left hand because it would definately change my whole life ... Virginia, 22 March 2006



This condition can be overcome. I have just been watching a TV1 New Zealand programme on the life to date of pianist Michael Houston. During this it was revealed how he was severely affected by Focal Dystonia for about five years. In particular this condition was aggravated through learning, performing and recording the 32 Beethoven piano sonatas in the space of about 3 weeks.


Through the interventions of a sports physiotherapist, an acupuncturist, a doctor dealing with the development of the muscles of the body, and pianist Rae de Lisle, he has overcome this to the extent that he has been able to make a full return to being a concert pianist. He had been advised to quit piano playing because of the condition, but neither he nor his supporters agreed with this suggestion, and the results of their endeavours is a happy one ... Brian Swale, 10 June 2006



Well, maybe my diagnosis of this dystonia thing has come to rest. I am not a musician, just an average 50 year old woman who is right handed and if you can call anything fortunate about my condition is that it has affected my left hand. Left index finger acts the weirdest, but my left hand just acts funky. My journey to this diagnosis hasn't been as weary as some I have juat read about. It's taken about 3 doctor visits - fisrt to a hand surgeon who then sent me to a neurologist who then ordered an MRI, and MRA and then fun of all fun, an EMG. Which at one point, I was tempted to get up off that table and stick the needles in my boyfriend who had dutifully been holding my feet down during my jerks from the electrical shocks. Yes he really loves me. My question now - what now? My dr. prescribed the drug they use in treatment of Parkinson's disease. This whole experience is starting to get on my last nerve. Any advice, words of wisdom, welcome ... Mary Wade, 1 August 2006



I would like to correspond with any others who have been diagnosed with focalized dystonia of the hand. I have been the whole gambut of meds, botox, and so forth. Nothing has helped ... Diane, 8 October 2006



Hi... not really sure if i should say anything at all here... but i was reading where u had been diagnose with focal hand dystonia in 1999. I have it to and i belive that it started in the fall of 2002 and really devloped in 2003 and it started out that i could not printed the digit 7 i can make the horizontal but not the vertical part of the seven.. i have been to the institute of health in bethesda maryland.... my question to you is this ... how and why does it start where does it come from.. and what can we do to get rid of it.... thank you ... Craig, 10 October 2006



I am a physical therapist who has worked with all types of soft tissue injuries and nerve entrapments throughout my entire 47 year career. In 1972 I discovered that by the systematic 10 minute wrapping of involved muscular groups, I could slow the chemistry of the muscles and thereby temporarily decrease their irritability. After a number of wrappings the tissue returns to normal. Muscle is contractile by nature. Its job is to move the bones, and it can only contract. Muscle lengthens only when the opposing muscle group contracts. After overuse or injury, muscles sometimes become confused and begin to contract on a reflex basis in cooperation with the spinal cord. The surrounding tissue becomes filled with fluid and can be hot or warm to the touch. A forearm often feels like a sausage instead of being soft and pliable. Healing can cause hard restricted bundles of muscle fibers to form within the soft tissue. These areas must be released and the tissue pliability restored to regain smooth coordinated muscle function.


When confronted with reflex activity the patient endeavors to perform his normal activities. Because his muscles don't respond easily, larger stronger muscles are often recruited on a voluntary basis. The brain is then involved. These larger muscles overpower the smaller muscles and result in the development of faulty movement patterns. Contracted and distorted muscular patterns often result along with nerve entrapments and strange patterns of functional movement.


These complex neuromuscular problems can be resolved by wrapping the involved sections of the body with moist medium weight terry cloth towels filled with natural ice, and then gently massaging and stretching the involved musculature. Treatment is given with the musculature resting in a plane neutral to gravity. The inherent contractility of the muscles must be respected. Rough treatment of the unhappy muscular tissue can make the condition worse. Reicing of the areas further decreases the irritability of the tissues. During the application of cold, the core temperature of the patient's body is kept warm by the application of large abdominal hotpacks or by placing the patient on full body heat.


Two weeks after the soft tissue returns to normal, reeducation of the faulty voluntary movements can begin. Frequently the most basic of fine movements must be taught first. Use no resistance. It is a bit like reeducating poilo patients after they have forgotten how to move. Relaxed movement must be taught through all ranges of motion. Sometimes the patient has never learned to do relaxed movement, and it is a foreign concept to him. Patience is required on both the part of the teacher and the student.


I love working with these complex cases and get excellent results. I use every type of technique which I have learned in my career as a physical therapist, synchronized swimming coach, ice dancer and performer. The cases are fun and mentally stimulating. I encourage you to start using cold to decrease the irritability of the muscles. Ice works quickly and effectively and is a very effective therapeutic tool ... Elizabeth Morris, 10 January 2007



Focal Dystonia of the hand question related to stress. When I am rushed or stressed, my writing hand (the affected hand) is practically useless. For unexplained reasons my hand will periodically print pretty well but writing is out of the question. The cramping is terrible and yes, I do think stress exacerbates this painful condition ... Barbara Perrin, 21 January 2007



Good contribution. Focal dystonias are typically enhanced by Anxiety/stress, and treatment may be helpful (especially when dystonia and essential tremor are paired). Retraining is worth a serious try,but exercise intolerance is a limiting factor. Botox injections can work (if dose is correct) for up to several months, but may cause rebound worsening. Med alternatives include beta blockers (e.g., propranolol) to reduce tremors and performance anxiety), certain anti-seizure meds, and antiparkinson agents may be tried. The link between dystonia and mitochondria oxidative posphorylation may suggest a role for Coenzyme Q10. Feedback would be of great interest ... SM, 4 February 2007



After having consulted with various specialists regarding the emergence of focal dystonia in my Right Hand litte and ring fingers, and after persuing your information, I was wondering if you have any suggestions regarding the alleviation/'cure' for this problem?


My problem developed spontaneously in approx February/March 2006, as a result of a 12-year period of being a typist, and consists of the said fingers 'curling' or 'bunching' up after no more than perhaps 5 words (after being capable of 130 words-per-minute). There is little pain, and perhaps an occasional aching sensation.


It can also occur with prolonged use of chopsticks, but to a much lesser degree.


It has been suggested to me that a magnetic wrist band may be of some benefit, and after consulting with a neurologist, it appears the neurological pathways are of normal conduction.


Any advice you may be able to offer would be greatly appreciated ... Kris Penny, 28 February 2007



I have been diagnosed with focal hand dystonia since 1999, I had just finished RN school and had been writing more in the last 5 years than in my entire life. I went to a neurologist and have been on beta-blockers and trialed many other medications for parkinsons and even requip without success, I have had 4 botox injections over the years and all did not improve my writing and the last left my index finger numb and still having trouble, the combination of inderal and clonazapam seem to help me write better, but I am looking for more information on treatment to help me write, I posture and hold my hand strangly to write, I perform many tasks as an RN and without shakiness but simple writing makes me shake and is begining to affect my performance. Do you have any suggestions, I also tryed hand therapy but the therapist was not even familiar with my problem and not helpful at all. Also can you suggest anyone in the seattle area that is familiar with this problem because my neurologist is not sure what else he can do for me. Any information would be helpful. I appreciate your time ... Mary Hutchins, 25 April 2007



I have been diagnosed with focal dystonia in my right hand this month. It appears it is made worse by stress, but not really fixed by calmness. My solution is to write with my left hand - the condition does not usually spread from one hand to the other!


Perhaps you could try that. It's hard, but much easier than writing with the affected hand.


There is also a relevant website: dystonia dt org dt UK ... Richard Donkin, 30 April 2007


Kinjay Kuracha's picture

Left hand coordination, less feeling strength, stiffness

My whole life I have had this problem with my left hand..
i dont even know what it's like to have 2 equally functioning hands let alone to feel in both hands..
I had adolescent epilepsy as a child and had nearly regular seizures where I'd fall to the floor and shakexceptional. Whilst taking medications for epilepsy until the age of 11 or 12 where my seizures have seized to exist..
I remember once during a seizure, I could actually stop the right side of my body such as my leg and arm from shaking for a short period but not able to stop the left side at all..
I have never had a explainable diagnosis for my hand while coming to the conclusion it was just nerve damage.. but I knew it was something else all along..
i found myself constantly trying to work around this..
Ivery even failed training courses and job trials where it involves use of my left hand not being able to explain to anyone why.. it has always effected my life. I am so glad to have found this article as i may now be able to properly diagnose the problem and try to fix this..

My left hands symptoms are:

Less sensation and feeling.
Less coordination.
Less strength aswell as in my left arm abd shoulder.
As a child I felt like it had an effect on my left leg slightly but has improved..
Stiffness in the left hand.
Wrist significantly weaker.
Cannot tell which fingers I am using without looking.
Can feel slight pressure and a slight sedation against carpet and other materials..
Cannot separate fingers well or at all without the help of using my other hand to force them apart.

As a child, I had alot of learning difficulties in school and generally found school very hard..
i remember being able to read fluently around the age of 5 but then somehow almost suffering from major enxiety and slow thought processing and difficulties reading after that.
This has improved greatly as i have gotten older.
I remember in 5th grade I was pulled aside for a reading test and was told that I was the best reader in the class which had shocked me.

I had always suffered from social and general anxiety my whole life along with severe depression as coming out as gay at 13. I have now greatly overcome depression.

Throughout my teenage years I fell into great depression and different phases where I'd smoke high amounts of marijuana and try other drugs along with a reckless attitude. I hated myself and the world. I used to harm myself. I ended up in hospital, and put myself into a psych ward for 2 weeks as i was going to kill myself..
I consider myself a different person as of today and looking back at my behaviour disgusts me greatly and choose to forget it..

I am now 24 years of age.
My left hand hasn't seemed to improved but I have just gotten used to and try to get on with it I suppose. We've ll got to live and support ourselves.. :/

These days I actually get called Smart and intelligent aswell as a highly social and bubbly being.
I am very spiritual and open minded as i feel i can understand greatly from wide range of perspectives..
i tend to have everyone coming to me for support and advise as i believe that is my soul purpose, to heal and love others..

Besides my life story..
I purely just want to help my left hand improve..
Does anyone relate?
Thankyou kindly for taking the time to read this.

EMERSON M F JOU, M.D.'s picture

Cure for focal dystonia

Here I would like to only address the issue of focal dystonia. As I commented about it way back in 2011, it is not a neurological condition but a simple mechanical strain of fascia in the hand. All the symptoms and difficulties come from strained fascia tissue
that is wrinkled and tightened, similar to tangled hair. For tangled hair, one must untangle it by combing through it gently, nothing else will help. Strained fascia can be easily released by light touch, holding the injured sites for awhile, each spot for 2-3 minutes until all spots are resolved. It usually takes 2-3 hours to resolve focal dystonia of one hand. Please visit my website, I'll be happy to answer anyone more questions.

ray davis's picture

cure for focaldystonia

My wife been a secretary for 30 years and has developed tremors in hand and her brain is having difficulty making her hand do tasks like folding clothes. Please share your thoughts. We need help.
Sincerely yours,
Ray and Lynda Davis

EMERSON M F JOU, M.D.'s picture

restless hand

Dear Ray and Lynda:

Thank you for your inquiry. Hand tremor is a more severe (or rather more extensive) form of dytonia, usually called "restless hand", as in restless legs syndrome, restless neck/chin, or eye blinking. It is caused by strain of muscles and fasciae, not related to brain. When one injury is irritated, it causes muscle contraction, this contraction in turn triggers other injured sites to contract, thus a vicious circle to become tremor. Applying Touch-and-Hold Method on the precise injured sites, site-by-site, it takes 2-3 hours to cure, a more extensive or stubborn one may take a little longer. This injury is like tangled hair, one must carefully comb through and untangle it with a comb by hand. Anything that does not untangle the injured tissue will be ineffective, and the injury stays for a life time until treated. You are welcome to contact me or read my book "NO MORE PAIN All Pain Considered - A Breakthrough"

Aloha from Dr. Jou

Jesse Eschbach's picture


Dear Dr. Jou,
I was told I had dystonia in my right hand in 1994 and have done everything possible to release it with little results. As a result, my concert career ended years ago. Is there anyone in Texas who could apply your technique or should I try to travel to you in Hawaii? I have begun to believe that this is not problem in the brain, but rather something in the fascia as you describe.


EMERSON M F JOU, M.D.'s picture

Dear Jesse:Thank you for

Dear Jesse:

Thank you for your inquiry. Focal dystonia is a rather simple matter. it usually takes 2-3 hours to cure. Being the originator/inventor of the Touch-and-Hold Method, I believe I am the only one to do it. Please visit my website: or read my book "NO MORE PAIN, All Pain Considered - A Breakthrough". I'll be happy to discuss further with you and see you in person.

Emerson M. F. Jou, M.D.

Paul Longley's picture

focal dystonia of right hand. Picking a banjo becomes out of syn

I do not have any pain. This is not painful at all. Just uncoordinated and out of sync.

Emerson M F Jou's picture

Cure for focal dystonia

It is true that focal dystonia is not painful but clumsy, yet clumsiness indicates very tender fascia tissue in the fingers upon pressing. Fascia strain is the real and the only source of dystonia, and must be released in order to recover. It can be accomplished easily with light touch as previously described.

stage 1 breast cancer bucks county's picture

Very interesting topic to

Very interesting topic to discuss. There's not much information around the web about focal dystonia of the hand so it's good that you've written about it here. Thanks for the share!

Mopati's picture

Concern on how i use my hands

I dont know if i may be off the topic but my concern is ever since i was born i have realised that i have the ability to use both my hands but not equally, that is when im eating with a fork a spoon i will use my left hand and the other hand when im not holding anything. Same applies to when im kickicking a ball the right leg is the one that i use. my question is what do you call a person with this condition? is it hereditary?

D Roy's picture

Focal Dystonia in writing hand

From few days I ma surprised that I am unable to hold pen where as previously my handwriting was quit well .But now whenever I want to write pen is automatically fallen and I am feeling pain in my writing fingers(right hand).As I am working for a bank and spend maximum time with computer but writing is necessary for my in my daily life. Kindly help if there is any treatment or exercise for me.

Serendip Visitor's picture

focal dystonia in writing hand

Dear D Roy,

I have exactly the same situation with you. I dont know what to do anymore. Tried to meet the physicist but they said theres nothing wrong with my right hand. But I know, Its not normal.

ANANYA GUPTA's picture




spinal traction philadelphia's picture

Great! This post is a lot of

Great! This post is a lot of help to those looking for valuable information about focal dystonia of the hand. Thanks for the share!

bosun's picture

Focal Dystonia

when i started learning how to use keyboard some years back i discovered that pen starts falling off my hand. Now i could not recognize how i used to hold pen neither do i have any pattern of how to hold pen. please i need help

mary frances's picture


Find a good neurologist!

D. Richard Lewis's picture

Special writing pen for focal dystonia

It seems you might have "focal dystonia." There is a special writing pen for people with this condition that will unable you to write....The pen is called: "PenAgain." there website is:

Serendip Visitor's picture

involuntary perpetual motion of ring finger 10 months

My 13 year old daughter fell off her skateboard and her left elbow took most of the fall. ER, x-rays,normal. Next day PAIN,ER,x-rays,normal. PAIN. Splint. Week later O.K'ish. Forward 1 month later pain gone except when arm is extended during lifting. She woke up one morning and the Ring Finger was moving side to side, involuntarily,approximately half and inch from center each way. No other finger. I INVITE You to try to replicate this motion. Other fingers spread or with middle and index together, Continually for 10 yes ten Months. All day All Night even in sleep. She can slow it down with concentration but unable to stop for any more than a few seconds. Then it moves even more rapidly. If held other fingers start to move. She can no longer feel the finger. Oddly enough when I try to replicate the motion a muscle in my forearm moves. Hers does Not. Primary Physician, Orthopedic, Neurologist ,Hand Surgeon, Elbow,forearm,wrist MRI's, EMG, Nerve Conduction Study. ALL Normal. The neurologist prescribed seizure medication Gabapentin or Botox. I have chosen neither and I am looking for a new Neurologist. Should I be looking for a physical therapist? Or someone else? I do Not think my daughters situation is the same as the others reported here I DO BELIEVE everyone here has deeply studied their situation and CAN offer me VALUABLE INSIGHT. So If ANYONE still follows OR for some reasons sees this post PLEASE, PLEASE OFFER ANY Suggestions. Thank You.

Jan's picture

Ring Finger motion

You may want to try a trigger point massage therapist.

Richard Lewis's picture

Zinc, Taurine, Glycine, and GABA improved my focal dystonia....

I would refer you to what I wrote in my post below: "Zinc improved my focal dystonia." What I said I did helped my condition and may help your daughter as well.....

Richard Lewis's picture

Involuntary perpetual motion of ring finger 10 months

It would seem that the neurons in your daughter's brain may be over firing...If you read my comment I have posted on this website, the one about the 65 year old flamenco guitarist, you will see the natural supplements I take to slow down the over firing of the neurons in my brain. If the neurons are over firing they can short circuit the nerves in the fingers causing them to behave in a focal dystonia manner, which would include a rapid movement of the fingers which you described.....The supplements I take are safe and include: the amino acid of: "Taurine," "GABA," which will slow down the brain's neuron activity....You should also check out: "The Musicians with Dystonia Builtin Board," for what other people with focal dystonia are saying and doing about this condition.....

Mario Ciantar's picture

problems in the 3rd finger of the right hand

I am a professional violinist in these least years I am notice that my 3rd finger is loosing concentration I could not control it any more. Is there a cure or a solution to become normal as I was? I am very worrying about this. I am suspecting that something is coming from my brain it could be?

Please help me

Thank you

Serendip Visitor's picture

New Drug available soon with little side effects.

The "Dystonia Medical Research Foundation" located in Chicago, Ill., has partnered up with the drug company making a new drug for Parkinson's disease, which is also being tested for "focal dystonia." The name of the drug is: "Dipraglurant." The new drug has very little side effects compared with what is available now. Check the "Musicians with Dystonia Bulletin Board," for any updates and other information on other musicians who have focal dystonia and what they are doing to relieve their condition.....

kofo Martins's picture

Focal Dystonia

Please notify me when new comments are posted.

Serendip Visitor's picture

Focal Dystonia writer's cramp

Diagnosed in 2011. Court Reporter. Can no longer hold pen properly and no printing or writing. Was told I had a 50 to 70 percent chance it would move to my left hand; it has.

It is now becoming generalized and I have myoclonic jerks on my left side which is the leg and shoulder; all primary being focal dystonia, over-usage, writer's cramp from my occupation.

There is no cure. Learn to compromise in your physical abilities, and take care of yourselves. That is the only present alternative.

Ravikumar's picture

Overcome Focal Dystonia

I have been suffering from focal dystonia from 2008. My right hand got affected due to excess of blog writing. As many of you, I had consulted n number of doctors, physiotherapy, acupuncture. Nothing worked out. Finally, I was prescribed the following two medicines:

1. Pacitane (2 pills/day - Morning and Night)
2. Clonam (1 per day - Night)

I dont say I am completely cured but I am definitely feeling better everyday. As per doctor's advise, should have it for lifetime. Side effects of these pills are drowsiness and slight stomach upset. You will feel like sleeping initially but would overcome over a period of time.

In general, mind should be very calm. Never think of anything. Be cool. Be calm. You surely would overcome focal dystonia

Ravikumar R

Dipanjan saha's picture


I am suffering from thumb distonia for one years or so, have consulted with doctors several times. Recently I am taking Pacitane 5mg., three pills per day, lonazef 2.5, one pill per day and Betacap 40 one capsule per day, but problem remains almost the same. Addition to that drowsiness follows all dayaround. Is there really any treatment with medicine or surgery? Pl. help.

Mary F Wade's picture

cool and calm

I am sorry to inform you BUT, being cool and calm has no affect whatsoever on focal hand dystonia. I have not been able to use my left hand to do squat, nada, nothing for about 4 years now.
thank you,

Mary Wade

Cody's picture

Trigger Finger

My mom was diagnosed with trigger finger a month or two ago. At the time she had a relatively mild case but the severity was increasing fast. The doctor talked to her about shots and surgery along with rest but i didn't like those invasive directions and she didn't want to not use her hands. I started looking for some other types of recovery and found a Trigger finger splint! I found a great trigger finger splint for only $20. My mom has been wearing a trigger finger splint since i discovered it and feels a million times better!

I highly recommend this to anyone looking to treat Trigger Finger

Good luck!

Colton Touvell's picture

focal dystonia left foot

I was diagnosed with focal dystonia in early 2011 and I have been seeing a neurologist and a movement specialist for a little over a year now I'm currently an active duty marine and I'm getting medically retired in may I have tried a ton of different meds and I went for a series of Botox injections and none has helped so far I have trouble walking and I can barley wear a shoe I'm in pain a lot of the time so they put me on pain meds but I don't want to take pain meds like I am because there are a lot of long term problems that come from it one of my doctors has suggested amputation and I have even considered it because I hate being out of commission like I am I was just wondering if anybody had any good advise for me because its gradually getting worse and I don't know what else to do

Serendip Visitor's picture

Active Marine with dystonia

Try using a PEMF pad placed on your lower back with both arms on the pad. See if there is a practitioner in your area, and check out Doc Oz and his info about Pulsed Electromagnetic Fields. Theory is that the electromagnetic current can lubricate, reinstruct or fire any of the joints muscles or soft tissues that are inflamed. I have a friend diagnosed with dystonia in her left hand. She tried the PEMF pad application, and is doing much better after about six weeks.

Mary Wade's picture

focal dystonia

Dear Cotton,

I have focal dystobia in my left hand. My dominant hand is my right hand. My left hand is a curled up mess and
i can't use it for sheeeeet. It wasn't painful until my fingers were contracting so severelyI had a hard time getting to sleep. I had botox injections and they relaxed it enough to where I was no longer in pain. I just underwent my second round of botox about two weeks ago. I'll be going to an orthopedic specialist to have some kind of contraption made to keep my fingers open. I'm surprised your doctor recommended amputation. Because the dystonia usually progresses. I have a little difficulty with walking myself as the dystonia appears to have migrated some to my leftf leg, specifically my left foot. I have to make an effort to lift my foot up when walking. It tends to drag. Isn't this dystonia a kick in the butt! Where are you stationed? My son is a Marine, not active now. Two tours of Afghan and he was stationed at Cherry Point. He was COMBAT ENGINEER. wHEN WE DO TALK ABOUT MY HAND HE LOVINGLY REMINDS me he has a sharp machete in the garage. But fortunately my hand is not causing me any pain at the present. My neurologist doesn't like my suggestions of cutting my tendons to relax the contraction. So, botox is about my only choice right now. Meds did nothing except make me sleepy. YUK! I would think amputaton would be the very last resort. But I can assure you, when my hand was causing me constant pain, the thought crossed my mind. But then there is "pain from the phantom limb". All I can say is hang in there. Have you gotten a second opinion? I'm also fortunate because I live in Houston, home of one of the best medical centers in the country.

I would be a lab rat for any trial no matter the risk.

email any time you're having a hard time. I don't work anymore and live on disability. That's fun in and of itself.



Mary F, wade

Colton Touvell's picture

I'm currently stationed in 29

I'm currently stationed in 29 palms I'm a tank mechanic my left foot has gotten so bad I can't put it in my boot and I can barley walk most of the time I've had 3 rounds of Botox and it really hasn't helped and I've tried so many meds I feel like a Guinea pig my neurologist Is the one who suggested amputation because I'm so young he thinks I would recover quickly and have a relatively decent standard of living where as now because of my limp and crutches my back and hips are shifting out of alignment he thinks it's only going to get worse have you tried anything besides Botox that helps? I'm moving back to Ohio and we have Cleveland medical center and that is about the only really good hospital we have I'm getting medically retired so everything is going to be covered I'm just glad someone else knows what it's like to have this problem I'm sorry you have it but its just nice to know I'm not alone an I've messages different medical groups and no responses so far.

Serendip Visitor's picture

I was tested with electrodes

I was tested with electrodes about 9 years ago and have weakness in my left writing hand and carpal tunnel in the right. I got to where I could barely write. The doctor told me to just make my grocery list on the computer since typing was no problem. Such a rude sexist remark was not helpful. For years I have not written checks, letters, or much at all. It is very irritating to realize how much writing is still done in life until it can't be done. I'm not sure it's stress related but have noticed it's worse when very tired or sick. I recently had to write up a family budget and some lists and suddenly realized that my handwriting is almost normal. Who knows if it will last though. The only thing I've done differently is quit typing during computer use due to getting a kindle fire touch screen.

Richard Lewis's picture

More information on zinc

I forgot to add, that you must take the zinc on an empty stomach because certain foods, such as seeds, beans, or any food containing phytates will prevent the zinc from being absorbed....and too much copper in the diet will also deplete your zinc.....

Serendip Visitor's picture

Zinc improved my focal dystonia

Hi everyone, I am a 65 year old flamenco guitarist who developed the disease when I was 49....It wasn't until about a year ago that I accidentally discovered that if I increased my zinc supplement dosage from 20mg to 75mg a day because of an enlarged prostate, that my focal dystonia in my left playing hand became less severe..I am also taking ginger, boswellia, bromelin, and coconut oil which all reduced inflammation. I also discovered when I read the "bulletin board" at the "Musicians with Dystonia" website, that there were a few other guitarists with focal dystonia, who also had a similar improvement in their playing hand when they increased their zinc....I would advise everyone to read the posts at the Musicians with Dystonia website for much more information about the results of all of these musicians who are taking the additional zinc....There are also 3 other supplements that seem to slow down the brain's over firing neurons that seem related to the focal dystonia...They are: Taurine, Glycine, and GABA. The heading under which these posts are listed is under the title of: "Rubber Band." I used a rubber band wrapped around my 4th and 5th fingers which also seemed to help me play better due to the focal dystonia....It seems to fool the brain, which is what you must do in my case......Good luck to you all with this information and hope that you all get good results.

Serendip Visitor's picture

por Distonerias


I'm also a flamenco guitarists that has been stricken with dystonia on my right hand middle finger. It happened gradually about two years ago. I thought it was due to me trying out IA rasgueo with a relaxed middle but I not fully convinced that was it. It has now gotten to the point that my middle finger curls in the moment I place my right hand over the strings and every single technique is affected. Especially tremolo and arpeggios which I had easily done before with great speed and accuracy.
I interested in the Zinc and possibly trying GABA. Do you use a particular brand?


kapil jain's picture

Diagnosed with Focal Dystonia

I have been diagnosed with Focal dystonia recently...the neaurologist told me that there is no permanent treatment for this desease...although he told me to have Botox injections once in about 3 months... Recently i have read so many articles related to side effects of botox as it may lead to Paralysis or something like that..or it may not effect at all.. so i am much afraid of having botox injections... Can anybody plz tell me if there is any alternative therapy for the treatment of Focal Dystonia ?? plz help me out guyz....

Myra's picture

focal dystonia on the right hand

In 1994, I was involved in a motor vehicle accident and almost took my life. With the good doctors and nurses, but most of all, the help and love of my Mother helped me back to almost as I was before the accident. However, with all the injuries I sustained, no one is able to tell I was put back together with rods and screws. The happened to me while attending nursing school. Wow, this really set me back, both my ankles were broken alone with both feet. I did have a head injury on the left side of my frontal lobe which healed and there is no scare that shows a surgical cut. Matter of fact, the left orbital area of my eye was broken. Glass was embedded into the skin, it was several weeks after 2 surgeries the glass was still surfacing from the windshield that put it in their. Any way, my head injury did mess my short term memory for several weeks. Now, that was a good thing, because from what I was told by my sister, who was riding behind me on the highway saw the whole accident. She said I had bones sticking out of my right knee that was pinned under the dashboard. They were unable to remove me from the side of the car because of the car being mangled. Now, all this time, there were no paramedics there to tend to any of the people involved in the car accident. Since my brother in law was a volunteer fire fighter, told the medics not to waste time removing me from the side of the car. He suggested to break the back glass of the rear of the car. He fast thinking really helped. However, due to my head injury, I began to seize. Luck for me there was a pregnant nurse caught in traffic that was out there taking control. She explained to the medics to administer O2 to me. She can hear I was gurgeling. My head injury is called a bad head injury ( concussion ) no, it is called a cerebral contusion.

When a head receives an injury such as a concussion or a contusion it does leave a lasting effect. It can be something small, but, it is a bruise on the brain. I had a bad one. Now, my so called "normal self is back." The only thing is I don' r remember that serious almost fatal car accident. My memory is back. I was able to continue nursing school and survived a divorce. However, One year later, as I went back to school, I began to notice a difference in my penmanship. My handwriting was extremely good that I would save my notes and re-write them as a way of studying and loaning my notes out to other classmates. But, as time went on, I was having so much trouble holding a pen. I must have bought hundreds of ink pens to find one that was comfortable for me to write with. I even asked instructors if I could tape their lecture. Some of the instructor didn't want me to do that. So, I didn't. I missed many notes and was unsuccessful in those classes.

I refused to give up on nursing school because of my hand writing. For years, I did so much research and saw many doctors. One doctor finally diagnosed my condition as hand writers cramp call Focal Dystonia. I knew it has something to do with muscles. I did some more research. The doctor wanted to put me on Parkinson medication. As a nurse, I knew there were some side effects this medication has, as do all meds. I did want to deal with as much as I wanted to write and as much as I needed to write. Again, back to the drawing board and found another treatment for me is injections of Botox. That is when I realized Botox serves just as much for health reasons than cosmetic ones. I also found out by accident, Valium helped relaxed those muscles. It was like wow, I found a solution. Now, both Botox and Valium didn't cure me, but since 2008 till now 2014, it has served its purpose. I don't have to take the Botox every 3 months. It lasts about one year. I do take a Valium every night at bedtime which that could be a reason I don't have to take Botox every 3 months. The down side of using Botox is one has to do the trial and error before finally finding the right dose and the right muscles used that are affected. When the Botox is first injected even after all the years I am using it, It does leave the hand slightly paralyzed. But, it has to, However, when it begins to work about 7 to 14 days, you will know. A patient will have trouble holding things even a hair brush. But, it is so well worth it for me. After the doctor finished injecting my arm she would dispose the rest of the meds in a sharps box. Then she remembered I did take a beating in the cervical area of my spine 2 times. I was involved in another car accident. It was not as bad as the first but, it certainly inflamed my cervical region of my spine, so much, that pain was controlling my life. The doc injected the rest of the Botox in the area of my neck that hurts, I didn't have to take anything for pain.

So, yes the Botox, works for me and I don't need it every 3 months. My biggest problem now, is that my current insurance is not covering that. So, bsck to the drawing board. I pray please let me get relief. We take advantage of our body

Mary Wade's picture

response to the above

Try calling Allergan, the maker of the Botox my doctor uses, and probably yours. They have a program that will pay for the botox used in your treatments. Thar's how I am able to still get botox for my left hand. Good luck.

Please feel free to contact me directly at if you have any other questions or comments.

Mary Wade

D. Richard Lewis's picture

My Focal Dystonia is 75% Gone!

I am an amateur flamenco guitarist who began to play at the age of 16. At the age of 49 I developed focal dystonia so bad that I had to stop playing. I am 65 years old now and suddenly I noticed I can play the guitar again with only a slight cramping in my left playing hand. I believe my condition improved due to the exercises that Jason R. Solomon wrote about in his article: "What Every Guitarist Should Know: A Guide to the Prevention and Rehabilitation of Focal Hand Dystonia." which you can find doing a Google search. I also believe my condition improved due to the many vitamins and anti-inflammatory herbs I am taking, like boswellia, ginger, krill oil, and coconut oil which give the brain added fuel. Since focal dystonia is neurological condition in the brain, anything that will improve the brain's performance, such as these health supplements that reduce inflammation should be taken
regardless of the focal dystonia. Experiment with these supplements to see if you get any results....Anything that will reduce tension in the body is also useful for this condition I noticed as well.

Indramal J. Fernando's picture

Focal Dystonia

This is just what I have been looking for !!

I am also a gutarist (more classical, play a little flamenco as well) who started at the age of 15.
Today I am 67,still trying to continue playing, with much difficulty because of this dreadful condition of Dystonia in my right-hand fingers.
20 years ago I dicovered , during a concert, that my ring- finger movement was suddenly behaving a little crazy!
I underwent several therapies seeing about 25 medical specialists.However,the condition very slowly worsened.
During this period my right-hand underwent 3 operations, twice for Carpal tunnel and once for Trigger-finger, after
various diagnostical tests.
Now I am taking Botox injections once in 3 months as three fingers are affected. I am not happy with the results

RobH's picture

voice disorder - similar

I have a voice disorder and I'm keeping a running blog of my experiences here: , hopefully this will have a happy ending. :)

ashish's picture

focal dystonia of hand

i have focal dystonia of hand from past 12yrs.i had taken many sedatives,tranquilizers,anti parkinsons medicines but nothing works.then practiced writing with my left hand.i think this is the only solution till date to overcome this problem.almost every indian doctor tries to make a fool of you as they know that till now no treatment is there for focal dystonia but they will not tell the patient and makes money with costly tests and consultaions.

Serendip Visitor's picture

adaptive tools

I have dystonia in my right hand and have since 1999. I just starting seeing an occupational therapist for the first time. She had me try many adaptive tools. One in particular helps the "writing bird" It is about $20. It helps with most writing but not small print like on forms. Does anyone have anything else like this that helps?

kenya1's picture


can someone please help me get the right drug for this focal dystonia of the right hand. this thing has been wth me since 2005. i cant write, use a spoon/fork,brush my teeth etc.
i have tried a varity of drugs including alter ative hrbal concoctions. please help!!!!!!!!!!!!

Jess's picture

Focal Dystonia (Right Hand)

I feel her pain:( The best medication I have found to work well for pain is called Lyrica (pregabalin). It is a drug that helps with nerve pain, it has also been found to help in individuals with fibromyalgia- a common syndrome in which people experience long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, anxiety, and other symptoms... Sorry, I am getting off track but my point is it doesn't say "helps with focal dystonia pain," but it is the most helpful medication I take. Unfortunately, this medication makes me retain fluid. I am able to take this medication once a day 200mg at bedtime without noticable edema. If she asks her Doctor about it, I bet they will try and prescribe a cheaper drup called Neurontin or its generic name Gabapentin. This drug didn't give me the results that Lyrica did but the other drug is cheaper, depending on her insurance situation, I thought I would throw that in. I wear a carpal tunnel brace at night, it helps reduce my muscle spasms and therefore I sleep better. Tizanadine is the muscle spasm medication I take, it can make you tired. During the day I take 1mg and at night 2mg. I hate to only name drugs but not much else has work for myself. I do find some relief from a heating pad around my hand at low tempatures for about 15 minutes. Oh, I almost forgot the best medicine.....go to a massage therapist, does wonders in loosening the muscles to reduce the muscle stiffness which reduces my muscle spasms.
I thought I was young...Tell her to keep strong. Medicine is progressing, doctors may not know much about the disorder but strides are being made in the right direction. Make sure she finds a movement specialist to direct her medical care and track her progress. If you have any other questions or just want to run an idea by or something that she has found to work, please keep in touch.

Good Luck.....Jess

deepa's picture


Very interesting post i liked it a lot. Great work.

Brenda's picture

Focal Dystonia

I too have right hand focal dystonia. I also have Relapsing Remiting MS. I've been told the two are not related. I'd be curious to know if others out there have both things.
I went through the gammit for diagnosis and I tried Botox shots which hurt like hell and didn't really help. I've decided that I won't go through that again. After much practice I have become very good at printing with my left hand. For some reason cursive writing is more difficult. I have resigned myself to the fact that this is a life long affliction and I am ok with it now. Wish I could use my right hand again to write but am very grateful to have a left hand to resort to. There are much worse things in life that could happen. This is annoying but will not kill me. I wish you all the best and hope that you too will accept this curve ball and adjust accordingly.
I have used the following things to help me: At work I created a template and only need to fill in the blanks for deposits, etc. I keep an MS word document opened at the bottom of my screen and use it to take phone messages instead of having to write. At the grocery store I use my ATM debit card or have the clerk run my check through the cash register. I have my husband sign cards, do envelopes, etc. If I want to enclose my own words in a card I type them up, use a nice font and after I print the message I use two sided tape to adhere it to the card. Hope these hints help you too!

Best of luck!

Sharon Sheltzer's picture

MS and Focal Distonia

I too have MS and Focal Distonia; in fact, my MS doctor diagnosed it. She did not know of any relationship between MS and Distonia but my intuition told me otherwise. I did some research and there is some information linking the two. MS affects the brain and the nervous system as does Distonia. Not that it really matters, does it? I recognize your coping approach; finding solutions to work around each new problem as it presents. I've decided not to try the Botox as I rarely see any positive reporting on the results and just today I decided to start practicing writing with my left hand. I also bought a mini laptop to take notes at meetings. I hope it doesn't stop me from typing- any feedback on that?