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Focal Dystonia of the Hand, and what the Brain has to do with it
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 Dystonia2)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.
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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?
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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, comfort......is 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
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Comments
MS and Dystonia association
Hi,
I was diagnosed with RRMS 4 years ago and very recently was diagnosed with the MS symptom Paroxysmal Kinesigenic Dystonia involving my left leg and hand. My hand and foot twist and turn when I initiate movement. My fingers will sometimes splay outward but my hand will sometimes turn at the wrist and the fingers cup and bend inward toward my wrist. (Does any of that sound similar to focal dystonia?). This hand twist/turn will occur at the same time as my foot pronating outwards and my toes curling under. I am currently being treated with an anticonvulsant Gabepentin and previously Dilantin without much affect on pain or frequency. This happens practically everytime I move, walk or lift my left arm.
Mine is painful to extremely painful when it happens. I am forced to stop what I am doing when it happens. Each episode usually doesn't last longer than a minute if I don't fight it and try to keep moving the appendage . If I keep on moving I tend to get stiffer in the leg and foot and the hand bends and cramps longer.
Focal Dystonia (Right Hand)
I had a right carpal tunnel release and a ganglion cyst removed in 2008. I went into the surgery being able to write with increased pain in the right hand, wrist, and arm with cramping of the right hand. After the surgery I was unable to write at all. I put the pen to the paper but my brain isn't able to communicate with the hand to move the pen. Like many others, I taught myself to write with my left hand. When I write with my left hand, my right hand along with my fingers move around with a mind of there own. My right hand curls inward, all fingers along with hand are involved. I have a slight tremor and involuntary muscle spasms in my right hand. I returned back to my nursing job after 3 months of trying to regain control of my hand. As time progressed the job was getting harder and harder for me to perform and keep up. The pain has moved from just the fingers, wrist and hand to both hands and fingers, wrists, arms, shoulders, neck and causes severe headaches. I am at the point that the pain never stops, I am able to manage my pain at a level 3 out of 10 at best. I have been to several neurologists, a movement disorder specialist, neuromuscular therapist, and a chiropractor. I have tried many different treatments with no success. Here in Maine my neurologist doesn't have a clue what to try next. I decided to make an appointment at Brigham and Women's Hospital in Boston Mass. I saw Dr. Sharma, a movement disorder specialist. They took down my medical history, recorded my symptoms and performed the normal neuro checks. Dr. Sharma is personnally contacting each of my Dr.'s to look at the whole picture. I will keep in contact to let you know how it goes.
I just wanted to mention, if you are in pain from this disorder try lyrica. I take tizanidine a muscle relaxant which helps a great deal and lyrica which helps with nerve pain.
I have one question for Dr. Jou, the touch and hold method is that the same as releasing trigger points?
Dystonia and Restless Hands
Dear Jesse:
First, to answer your question regarding trigger point. To me, instead of trigger point, I consider it as tender(very sharp pain)point due to fascia injury. And yes, it can be resolved by Touch-and-Hold. You seem to have suffered extensive soft tissue injury in many parts of the body, as very commonly seen in women. As for your hands, it started out as dystonia, later worsened into "restless fingers, hands, wrists". They are all derived from localized soft tissue strain, more fascia than muscle. Brain has nothing to do with it. "Restless hands" is a more severe and extensive form of soft tissue injury than dystonia, more commonly seen in "restless legs syndrome", not a movement disorder. Such a mechanical injury must be treated and can only be cured mechanically, but not by any chemical means. Using Touch-and-Hold, strained tissue can be released, pain resolved and function restored within a short period of time, more time is required for "restless" conditions. Headache is also caused by fascia strain on the scalp and can be easily treated and even cured.
Emerson Jou, M.D.
FOCAL DYSTONIA
Helloo, I am suffering from focal dystonia of right hand since 2 years. I am unable to write by my right arm and Pen is often slips while writing.To cure this disease,I went to neurologist before 2 years where he was prescribed me tablet Pregabid. but that was not beneficial for me.Before three months, I was experienced pain and weakness in my right hand from right scapular region to the right fingers. So my old neurologist was referred me to another neurologist in higher centre where i took four BOTOX injections on my right fingers and forehand and prescribed me tablet Revocorn(tetrabenzine). Due to this tablet my pain was reduced and can also aggrevates if discontinued this tablets.But still iam not able to write properly even after taking botox injections, my handwriting is so bad than before also have anxiety.My exam is near in next month.Tell me what should i do. Is it curable? if yes then kindly suggest me proper treatment.waiting for your reply.
Thank you.
Bogus Claims
Some of the claims listed here are truly amazing. Have the authors not read, understood and inwardly digested the fact that Focal Dystonia of the hand is a neurological condition arising from the smearing of digital representation in the brain. For heaven's sake, read the article -
"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"
Focal Dystonia is an extraordinarily difficult condition to treat with any degree of success - I should know. Despite the best efforts of the world's top neurologists there is still no known cure for FD, as any genuine medical authority will tell you. Yet despite all the evidence to the contrary there are unscrupulous people here who claim a miracle cure - that FD may be cured as easily as a headache is cured by aspirin. Perhaps if you show them the colour of your money they will also provide a miracle cure for cancer (any type), restore amputated limbs and even provide a quick-fix antidote against death.
Please, please don't be fooled into parting with your money to these charlatans and rogues.
PS - I'm selling magic wallets. However much money you spend the magic wallets always remain full. Yours for a bar of gold apiece.
I am interested in this as I
I am interested in this as I have some symptoms. I haven't been officially diagnosed, but as with one other commentor, I lost my ability to write legibly during nursing school. I am now a nurse and daily handwritten charting is required. I have also had random and inconsistent joint pain in both my fingers and thumbs...it is so strange. It comes and goes, but otherwise it just feels like my brain has 'forgotten' how to tell my hand how to write! Since I had never heard of this condition, I have been wandering the internet for some kind of logic on this, and found this page. It is a relief to know I am not nuts! Although I have not had permanent results, I wanted to share that I have had 3 or 4 days of relief by listening to a self hypnosis mp3 related to better handwriting. Strange, but true. I have to listen again about 1 or 2 times a week, but it helps...Good luck all.
Michelle
Focal Dystonia
I have read the blog about Touch and hold therapy by Emerson Jou, M.D... I will try this.
I have had this for the past 5 yrs. Also did CTS surgery. Cannot write or type with my right hand. Currently on medications prescribed by Neurologist.
If there is any cure for this disability then please let me know. Thank you.
Managing Focal Dystonia
Hello,
I was diagnosed with focal dystonia back in 2005. For a long time I thought it would just go away. It didn't. I tried every modality I could think of to cure myself but it wasn't until I realized that since the brain is a muscle and there is plasticity in the brain, I could create new neurons in order to be able to play my flute again. Then I started to cure myself. At this point I would not say that I am cured but I have created a method to be able to play using , as my chiropractor says, neurological biofeedback. I have kept in touch with the neurologist who initially diagnosed me throughout my healing process and she is amazed at my progress. She videotaped me playing in 2005 and now as she views recent videotapes of me playing she cannot believe it. I think it is time for me to help other people. This is the first e-mail I am sending out and I hope it is being sent to the right people.Please do view my website so you may see my videos. It would give me enormous pleasure to help other people be able to play their instruments again.I can corroborate every statement in this e-mail and back it up with my neurologist.
Thank you.
Andrea Brachfeld
focal dystonia
Hallo Andrea,
I'm Guido U-A-Sai from the Netherlands (City of Haarlem) and I also suffer also from FD. This is going on for almost ten years.
I'm a teacher (chemistry) and was, according to many people, a very good amateur classical guitar player.
I've read your email on /exchange/node/1743. I found this site by Google-help.
I decided to respond when I've read especilally your email.
If I understand your email well, you have instruction films and a website available that FD-people can use.
Can you please give me further information.
I also try to cure myself in the following way. I play very very slow with the help of a metronome (slowest position).
When I want to use my (problem)thumb -- the only one, and not the fingers -- , and 'it gives me a sign that 'it's going the wrong direction', then I withdraw my right hand immediately from the guitar. I think this exercise works.
I think, giving my brains commands what 'not to do' -- thus by withdrawing my hand immediately -- would help to 'rewire' the nerval signal paths.
Years ago I decided not to take botuline injections and I still don't regret that decision.
I think selftreatment (train the brains so that it 'rewire' signal paths to the 'original' position) must be possible,
but with a lot of patience.
I hope that I'm right and that you will answer.
Yours sincerely,
Guido U-A-Sai
Focal Dystonia
Hello,
I'm interested what did you do practically to be able to play again.
Thanks,
Nicholas
FD
Dear Andrea,
I'm a cellist that also was diagnosed with focal dystonia 7 years ago. Nothing that I have done has worked. Could you please share with me what you have done that has helped you?
Thank you so much,
Nelzmar
"The Brain is a muscle"
Dear Andrea, the brain is not a muscle, neurons are not muscle cells and you cannot create new neurons in the brain.
Distonia Focal
Sou quiropraxista em São Paulo, Brasil e estou tratando a 3 meses, um violonista com diagnóstico de Distonia Focal, desde 2008. Neste curto tempo de tratamento consegui reduzir substancialmente a inflamação, o inchaço e a mobilidade das falanges, além de não ter tido (por enquanto) as contrações involuntárias, porém, sinto que preciso de maiores informações. No que vc pode me ajudar?
Obrigada.
Help needed
Hi Andrea,
I am nithin from hyderabad in INDIA , my dad is suffering from focal dystonia .
I need some inputs on how you managed to find out a method to live normally with it.
Can you please gimme your email so that i can approach you.
Thanks
Nithinraj
3+ decades coping with dystonia
Dear friends.
It’s more than 3 decades ago that I suffer from dystonia and many of its symptoms: pain, spasticity, lack of coordination, lack of skill, etc. I am also caregiver for my wife who has MS, and this gives me such a different perspective to neuromuscular problems. Despite the difficulties, I have been working since 2008 on a project, named Distoweb, which deals with dystonia and other related movement disorders (such as Parkinson's, etc.) from a positive, practical, dynamic and intuitive approach, taking into account both the physical and on the psychological aspects. The website has no banners, advertising or business opportunities. It was designed with the only purpose of sharing experiences, useful tools and understanding.
Good luck!
Fernando Hernández (Distoweb)
Focal Dystonia
I have also been diagnosed with FB for over 2years. I would like to know how you have been been managing this disease with success.
Thank you.
K. Martins
Focal Dystonia and Zinc
As I have said in my earlier posts on this site, I have found that if you take 60mg of the supplement: zinc, on an empty stomach along with about 100mg of vitamin B-6, that your focal dystonia symptoms will be greatly diminished. Other people have also noticed this when taking the above. And if you read the other information on my other posts, you might get further help....
Focal Dystonia & Magnesium + B6
I have had Dystonia since 1994 and just found out myself that Magnesium + B6 also greatly reduce symptoms. Very interestning stuff to read that a similar "reciept" have been working for other people. Magnesium will also make you feel more relaxed wich will often be a problem for us with Dystonia.
focal hand dystonia
I take magnesium, but not on a regular basis. But nothing helps my hand relax other than botox, and even that doesn't work great. I just keep trying to learn to live without the use of my left hand. Big bummer, but it could be a lot worse as far as
other forms of dystonia go. Thanks for your info and response.. God Bless...
Mary Wade
FOCAL DYSTONIA
hi i am umang from india i am suffering from problem so called focal dystonia since 2007 by birth i am left handed everything i play cricket and all other game by left hand but in 2007 during my graduation emxamination i suddenly become unable to write with my left hand i had given exam with the help of writer after than neurologist visit and doing ECG all that no improvment in writing but after my exam over during that time i started practicing to write with right hand and i got success in that in just two or three month so my problem was solved during that periode but now in 2010 i facing same problem with my right hand and now i become unable to write with my both hand and as of my job profile i required less of writing skill but please help me to improve my condition.
about writers cramp in right hand
hello mam/sir,
my name is umesh . I am right handed.I am a marshal artist I am doing marshal art last 7-8 years . when I was only 12 years old , i was crushed by tata sumo in my city Lucknow by which my left eye had been some small and my my right hand was also cracked and that time my family members bring me to set my right hand to baba ji who set my hand after setting few months i was feeling pinching in my hand. Thence
my neck pain ,writers cramp in my hand have not solved but others problems have been solved. I also do prayam like anulom vilom,kapalbati,agnisar,bastrika,udgeet prescribed by the doctor with marshal art (taekwondo).today i am 26 years old and I have completed my bca 2010 in Jan .
Please tell me honestly if any solution is available for writers cramp today beyond it otherwise my family ,friends are saying “you must start write with left hand ”
I have taken many medicines but I have no capacity to drug it.
thanks you
umesh kumar
Focal distonia and this blog
Not a complaint but an observation. I received email this morning that someone commented on this blog and the assumption is that they were looking for a response. This is the first notification that I have received since I posted my experience back in 2008 and checked the box for notification of replies. In fact, I had forgotten that I posted here until this morning’s email notification of a reply. Scanning the blog I find that there have been many replies since mine and one user who complained that no one has answered.
As for the problem that I originally posted, I do have some updates for may condition at least. The condition that I have is writer’s tremor or what I have termed from blogs like this “right-hand focal dystonia,” though this may be a misnomer (I’m not a physician). I eventually saw a neurologist since the situation has gotten progressively worse. The neurologist prescribed a drug called primidone. To my euphoria, the drug worked to control the tremor; however, I found that for me at least the bad side-effects outweighed the benefits. I didn’t correlate the effects with the drug initially, but I found that I was extremely fatigued during the day. My daughter is a pharmacist and she confirmed that it likely was the result of the primidone, and she suggested that I cut back on the dosage. Instead, I stopped using the drug entirely. My energy level quickly returned and I haven’t resumed the medication. Just knowing that it could be controlled is mentally assuring and I will resume the primidone if alleviating the problem becomes more beneficial to me than enduring the side effects.
Other comments on my condition. It is similar to many of the comments that I have read on this blog, but there are significant differences from some. First, I have no hand-cramping and have no identifiable problems other than penmanship. When I try to draw a horizontal line it may start straight but soon becomes jagged as the tremor manifests itself. Frequently it is jagged beginning to end. I can write poorly with my left hand but without tremor. Some here have reported problems using a computer mouse. The only problem here is if I try VERY fine control. Navigating the mouse for most computer activity is no problem at all. Next, and I reluctantly include this since it probably is not relevant, but I play guitar poorly. I only bring this up since there are several professional musicians who have commented here and my Internet search returned a strong correlation of RHFD with professional musicians. I used to play daily for my own entertainment/enjoyment when I was younger and did not have the penmanship malady. My playing became less frequent about 20 years ago (maybe monthly now)and my writing tremor began about 10 years ago. My unprofessional assumption is that there is no correlation. But I did notice throughout my term of playing guitar that my left hand would cramp if I barred chords for too long (guitarists will know what I’m talking about). My style was finger-picking and I never had problems with that, which involves the right (tremor) hand.
I also have found that the problem is exacerbated by caffeine and alleviated by alcohol. This is only an observation and of course not a recommendation, but it may have helped the neurologist identify my condition. For me personally, I haven’t changed my consumption of either. I’m probably addicted to caffeine and do not plan to increase my very moderate alcohol consumption. If I make any changes at all, I’ll try reducing the caffeine, and then resume the primidone if necessary. Again, for me at least, I prefer to know what does/doesn’t work and then make my choices. It is comforting, though, to finally have an accurate diagnosis and available treatment.
dystonia - primidone
I recently read your post and wanted to share that I too have dystonia. I have all the same symptoms however it effects my neck, arm and right hand. I was diagnosed with cervical dystonia at 45 and that is only half the problem. I was a massage therapist for 14 years, treating several peoople a day. I went into it for self help when I was misdiagnosed by an MD quack that stated my neck tremors were from alcohol and I didn't drink. At 25, this was a choice because even though the alcohol lessons the tremors and spasms temporarily, the following day my tremors were much worse. Deleting or reducing caffeine and sugar has helped the most. I have found that by eliminating these items for the most part, my tremors in my body are improved and my spasms are lessened and less frequent. Some days are better than others and certain daily movements are a chore at times; such as, eating soup (or anything with a spoon), my hand writing (thank goodness for computers and pads these days). I too tried Primidone. Essentially, I thought more would be better, over zealous after waiting so long for some help, took a whole pill (caused severe head pain & took a few days to recover). I'm sure everyone is different but I started at 1/4 pill and after a week tried a 1/2 pill (also, I took at night before I went to bed so the initial side effects occurred during my sleep). I finally after a month moved up to 3/4 pill and my tremors and spasms and side effects worsened. I continued on 1/2 a pill for a couple of months and worked in 3/4 again and tried to stick it out, but eventually after a couple weeks went back to a 1/2. Keep in mind, I never took medication (not even an aspirin) so my side effects from medication are probably more sensitive. Bottom line is it never got better and I stopped paying for the medication and the doctor visit's to continue the meds after a year. I recently had to contact the doctor because my typing skills in my right hand (office manager) are deteriating and my right hand can't keep up with my left hand anymore. I learned how to eat with my left hand and use my left arm for any movements that are hindered. I practice meditation, relaxation skills, keep alcohol, medications, caffeine, and sugar at a minimum and I feel this has helped the most. The person I worked for went out of business and I recently wrote my physician for a disability letter for a typing job because of my typing skills decline and he declined me; saying that I was diagnosed with cervical dystonia and that typing skills were not included in my diagnosis and I would have to be rediagnosed. Unfortunately, that job came and went and I'm in the process of trying to reinvent myself again. During these economical times, every penny I keep is important. However, I will be watching this to see if any cures come available. LB
Thanks
Hand Dystonia
I am also trying to find a therapy for hand dystonia. My right hand has gradually lost fine motor skills required to draw, write and use a computer mouse over the past couple years. I have learned to write with my left hand but having difficulty using a mouse on this hand - a new skill that I find difficult. I have had sp. torticollis in my neck for the last 20 years and have that under control - just a minor issue now. I'm not sure how the torticollis and hand dystonia have manifested in my case? I found the torticollis to be relieved by a massage therapist who specializes in energy work (AOBTA certification - www.aobta.org ). She uses a combination of Reiki, accupressure and other treatments. Botox and other drugs are ineffective. Transcendental Meditation (TM) and yoga asanas was a tremendous benefit to the massage therapies. I am considering Maharishi Vedic Vibration Technology as a friend had reported good results with his arthritis problem. I believe this is offered at TM centers around the country.
Focal Dystonia of right hand
I was diagnosed with focal dystonia today but have had the injury for about 5 years now. I used to be an avid typist, which is how I got the injury. I am fortunate that it was my right hand that was injured because I am left-handed. The hand specialist I saw referred me to a neurologist. I have an appointment next week so I'm hoping all goes well. I have to say that it's nice to hear from others that are experiencing the same problem. For years I didn't know what was wrong and felt weird. I'm glad to know that it's treatable. I'm anxiously awaiting the day that I'll be able to type with two hands again! Although my husband has always said I type with one hand faster than most people type with two lol... It's still more enjoyable typing with two!
Left hand focal dystonia?
I am 58 and have been a professional guitarist for 43 years and have been teaching for 30 years. I still teach six days per week and play almost every weekend in a wedding band and occasional club date. Recently, during simple musical passages onstage, my left hand occasionally cramps and curls temporarily. I can usually shake it off but I can see the potential for it getting worse. It feels like the spasm runs along the inside length of my left forearm right before the hand cramps. Thirty years ago I had a right hand carpel tunnel operation at Johns Hopkins where my mother was a nurse, and I have not had a problem with it ever since. I know that this is not a carpel tunnel problem.
I have not talked to my doctor yet since it just started, but will bring it up to him. Dr. Emerson Jou seems to be on a good treatment path and I will recommend his treatment to my doctor. I will bookmark this page and write again with the results.
zinc helped my guitar playing
I just left a comment on how I improved my guitar playing despite my focal dystonia by taking more zinc on an empty stomach.
Focal Dystonia of left hand
I have suffered from the curling of my ring, little and middle fingers into the palm of my hand thus causing deterioration of the use of my left hand. I have been through all the neurological and physical tests and the final diagnoses is a focal dystonia. Botox was of some help but the painful injections were not worth the very temporary relief and the long term effects are of concern to me. I have had hypnosis, osteopathy and accupuncture and nothing has helped. In fact, the condition is gradually worsening. Please give me more details of the touch and hold method.
I'm not sure why I'm replying
I'm not sure why I'm replying other than NO ONE EVER replied to me and how that made me feel. I'm not even sure what the puporse of all these cooments are as there don't seem to be any answers anywhere!!!!!!!!!! I have focal dystonia of the lrft hand. My left hand has been worthless to use in any capacity for almost 4 years. I have not been given any hope by my neurologist, none, nada, zero. So I keep looking to the internet for some glimmer of hope. Not finding much! DOES ANYBODY HAVE ANY HOPE??????????? PLEASE EMAIL ME AT fwade@pdq.net THANK YOU!!!!!!!!!!
re-no replies Focal Dystonia
I have been diagnosed with focal dystonia of the left hand...I am left-handed, however, play guitar right-handed....confusing? well....I now am convinced after reading several cases of this disease, that I will attempt to do what I can right-handed....such as teach myself to play guitar the opposite way. I have been playing for 45 years or more, mainly lead guitar, and found about 5 years ago that my hand was giving me problems that started with the barr chords. Another option I am looking into is the change of instrument....I will attempt the pedal steel guitar. I have severe arthritis, combined with severe gout attacks, at times, which incapacitate me for weeks at a time now.
Hello from Greece, my father
Hello from Greece,
my father suffers from FD at left hand . He is a musician for traditional music. he has had two botox therapies with no result...he unfortunately faces problems in order to play his instrument...what about additional therapies peros?? do you agree with botox therapies?
FD in Right Hand--Mandolin Player
I have had focal dystonia in my right hand for about twenty years. After receiving the diagnosis of dystonia in my hand I started experiencing dystonia in my vocal cords, otherwise known as "Spasmodic Dysphonia." I've tried accupuncture, Alexander Technique, botox in my vocal cords (one time), none of which have improved my situation to any appreciable degree.
I am a mandolin player and I need to hold a pick to play, which has been very difficult to impossible over the years. Writing makes the problem worse, so naturally I have switched most of my writing work to the computer, which unfortuneately has not improved my ability to play mandolin.
Even though I can barely play my instrument anymore I have been reluctant to give it up. I suppose some of my reluctance is simple denial of the extent of my problem, and also, I love my instrument and the music I used to play. I keep hoping and praying for some kind of miracle cure but the reality is that my problem continues to get worse. I've been struggling with this problem for a long time, and I suppose I should move on and find an instrument that uses different muscle groups, before I get too old to play anything.
Any progress?
Hi Jim,
I am a mandolin player that seems to be suffering of something similar in my right picking hand. Did you ever discover anything that helped? Or did you move on to a different instrument?
For me it is an inability to rotate my wrist to strike the strings while gripping a pick.
Thank you,
Scott
Reply to Scott
Hi Scott,
Sorry to hear about your hand problems with the mandolin. Unfortunately, I never found anything that was effective in treating the problem I have/had with holding a pick. I tried lots of different healing modalities but nothing seemed to work. A few years ago I decided to order an Irish concertina (it was mostly Irish music I played on the mandolin). Just last week I received notice from the maker that the concertina is ready for me. So, I will be transitioning to the concertina and selling my mandolin.
It was very had to accept that I wouldn't be able to play the mandolin. I kept denying the inevitable, which resulted in decades of denial and inability to play. I kept telling myself that one more therapy would create a breakthrough or a cure would come along. In the meantime, I wasn't really playing music or when I tried it would lead to frustration and angst.
But we are all different and each problem is unique. I wish you well with your playing challenges.
Jim
concertina with dystonia
Hi Jim,
While I've been struggling with focal dystonia in my left hand for 4-5 years or so, I'm just now finding information on it. I came across your comment about concertina. I'm 57 and been a musician since young (mainly fiddle, but anything with strings). About 3 years ago, I thought I would try a completely different instrument thinking that my brain would not recognize the different hand position and cause my forearm/fingers to contract. It worked while I was just beginning to learn for the first year, but now that I am more familiar with it, and able to play tunes, it is now a serious problem.
While your dystonia sounds a bit different from mine, I would like to hear your your experience with the concertina. If you have had problems, please share any therapies that have worked for you.
While mine is left hand, mostly on my ring finger (but certainly affects my middle and pinky), the only thing that seems to help a bit is consciously relaxing my forearm, and playing with fingers extended rather than curled. But as you might guess is not ideal. I find it is more natural to play "from the forearm", but with a consciously relaxed arm, you still have independent movement of your fingers, and it relieves a lot of unnecessary tension. A couple years ago I tried massage and acupuncture with no improvement.
I look forward to hearing your experience with concertina.
thanks
dave
Focal dystonia alternative treatment
Dear Sirs:
Today searching in the internet, I inadvertently stumbled into your webpage. Reading through the numerous messages from “desperate” individuals looking for solutions to one of the most complex of medical conditions “focal dystonia of the hand”, I felt compelled to write these lines. It is my opinion that the use of the standard medical protocol for the treatment of focal dystonia: butulinum toxin injections, otherwise known as Botox, is somewhat effective but highly toxic, as it is a neurotoxin derived from Clostridium Botulinum. I think the deleterious effects of this substance in prolong usage could outweigh the potential benefits. Clinical research has not shown this method to be statistically significance. In addition, physical therapy, in my opinion, does not offer the biochemical solutions to a “neurosomatic cortex” related deficiency. However, I have been treating this type of condition in my clinic with “hand acupuncture and auricular therapy” and other secondary therapies with great results. This non-invasive and non-toxic, localized and distant treatment has offered me an effective treatment alternative for my patients. Results from this treatment has achieved individualized movement of affective finger(s) and overall improvement in sequential hand movements, plus a significant amelioration of hypersensitivity all by inhibiting muscle contraction, decreasing spastic muscle tone, and increasing of muscle spindles afferent information to the spinal cord via peripheral sensory enervations of the hand and ear.
Hoping this new focus can bring some hopeful alternative to your patients.
Herman Vega, PhD., AP, LMHC.
info@totalrehabservices.com
Clinical Director of Total Rehab Services
14505 Commerce Way Suite 511
Miami Lakes, Fla. 33106
Focal Dystonia
Hello.My niece has just been diagnosed with focal dystonia of her left hand. Her hand has been closed since April(easter sunday.)she's 19 years old. She's in a lot of pain. She had a botox injection which hasn't helped at all. I have been trying to find answers as it breaks my heart and the rest of the family to see her suffering like this. She also has the twitching of her arm as well. Any suggestions would be helpful. I don't agree with the botox as she is still the same.
Left hand focal dytonia
I read your article and would like to find someone in Southern CA who does this treatment. Any one you can refer? Please email me. Thank you, Kathy Lopez
Parkinson's Disease and Focal Dystonia
One of my earliest symptoms of Parkinson's Disease was focal dystonia of the ring finger on my right hand and later the entire hand with the hand and wrist turning inward and curling towards the chest.
Later my left hand became involved and now my feet have started doing the same thing. It is extremely painful when it occurs. I have recently taken up Tai Chi and it seems to be helping to stretch out the tendons in my feet when they become too tight. It has also helped with my balance.
Does anyone know anything about this particular form of dystonia and if so, what is the prognosis and recommended treatment.
Focal dystonia vs Parkinson's disease
Your condition is not Parkinson's disease, but the so called "focal dystonia" which is caused by mechanical strain to the fascia tissue under the skin. It may occur anywhere in the body, most commonly seen in fingers, head(migraine), neck(spasmodic torticollis), legs(restless legs syndrome), and feet. Without treatment, it will worsen further due to physical activities. It can be easily cured by light touch, i.e. Touch-and-Hold method.
Does Anybody Know
Hello,
I happened upon this page while trying to determine whether carpal tunnel syndrome could be the cause of my problems. If anyone can try to let me know whether focal dystonia might be the cause of my problems, I would be extremely greatful.
I used to have the most beautiful penmanship. For quite some time now, and it is getting worse and worse, my penmanship is pathetic and almost illegible. Even when I concentrate and try very hard to write legibly, you can hardly make out what I am writing.
I am also finding it extremly hard to perform the following tasks:
* pumping anything in a pump or aerosol can or bottle.
* using a can opener.
* brushing my teeth (I find I have to use both hands or use my left hand instead).
* use a mouse (I find that I have to click it several times instead of the usual one to two times).
* type.
I find that my right hand and fingers have become very weak and uncoordinated. I also find that my hand tends to "draw up" at times (I don't normally have the "cramping" feelings along with this that you typically have when your hand is actually cramping). I just find that just about anything that I try to do with my right hand (my dominant hand) is extremely difficult and becoming increasingly more so.
I don't think that I have observed any "trembling" as I have read in some of these testimonials. I HAVE had some pain in my hand and index finger in the past (although not so much for quite a while now), as well as some swelling in the index finger (also, not in quite a while now). It is just an awful weakness and incoordination. The most distressing problem is my penmanship.
Any help that anyone can offer will be greatly appreciated.
Best regards,
Anita
right hand focal dystonia
Hi Anita
About 6 years ago I was diagnosed with focal dystonia. I, like you, have the most difficult time trying to accept the fact that in school I had a beautiful penmanship, of which I was proud.
About 10 years ago I noticed pain in my wrists while pushing a shopping cart and thought perhaps I had carpal tunnel issues. One day I noticed my hand would turn "inwards" while trying to write or put on mascara. Computer work was not an issue with the exception of controlling the mouse. Now, my laptop makes that much easier. Frustration sets in when I try to hold a glass or coffee cup and notice the weakness. At times I have to hold the vessel with two hands and even then my hand turns toward my chest. Very embarassing when I try to write a check in the store and my hand is determined to "tighten up". I don't know the answer. My neurologist has tried me on several medications to no avail. I have tried the left hand writing but then I read about all the people who then develop LHFC. So, what's the use??? When I read some of these blogs I realize how lucky I am. However, I have recently been having issues with pain in both hands, cramping (especially during the night) and stiffness in my feet. Doctor says it is osteo-arthritis. Don't really know if I buy that or not!
So far, after 3 weeks, her suggestion of glucosamine hasn't done anything. I will continue until I know for sure if this may help.
Thanks for listening. Kay
Carpal Tunnel and focal dystonia
I started developing a focal dystonia of the right hand in 1995. It took years to get an accurate diagnosis, which I believe occurs because of the rareness of the condition.
Along the way, I had carpal tunnel surgery. If anything, the condition became worse after the survery. I've also had two surgeries for trigger finger. If I had it to do over, I would NOT have had the carpal tunnel surgery.
In my case, writing is difficult as is typing. It is not painful. My right hand (fingers and wrist) are all involved and basically my normal right hand position is where the wrist is curled and so are the fingers. The thumb is not involved and the index finger is not involved either. Untreated when I write, my hand won't obey and will make involuntary movements.
I have been treating it with botox twice a year with reasonable success. It did take some time to get the right dosages and muscles, but it works well. My only dislike of the treatment is that it produces a profound weakness in my right hand, which makes things like playing golf infeasible.
My physician at the Cleveland Clinic, who I really like, indicate that if I train myself to write with the left hand (as I started doing) there is about a 50% chance of developing the condition in the other hand. So, I opted for botox.
Good luck!
Focal dystonia vs Carpal tunnel syndrome
The so called "carpal tunnel syndrome" is hardly caused by median nerve impingement as commonly believed, but soft tissue (muscle and fascia) injury to the hand in the area more than the median nerve territory. The so called "focal dystonia" is also derived from soft tissue injury, much the same as in carpal tunnel syndrome except more muscle than fascia involvement in the latter. It can be easily fixed by light touch, i.e. Touch-and-Hold method.
Touch and Hold Method
Hi Dr Jou
Are you able to fill me in a little more on the "Touch and Hold" method?
Thanks
Floyd
Focal Dystonia
I have been a secretary for over 40 years. In the past I could type approximately 120 wpm. I had neck surgery (C2, C3, C4 Fusion) in 2003. Since 2007 I have been trying to find out why I can't type regularly, sign my name or write without holding my right hand with my left. I have moved my mounse from my right side, since I am right handed, to my left and can manuver the mouse better. My hands don't shake except when I try to do fine motor skills such as these. Trying to cut up meat, move food around on my plaste or slicing anything with a knife is very difficult. My head also shakes and I don't know if these are connected. Last year I went to the doctor and he told me I had focal dystonia (both hands) and he suggested Botox. I declined because I had heard so many negative things about them. I have one more yeare before retirement and want to know if there is anything I can do to help me with this for my last year of secretarial work. I now type abount 40 wpm (the hunt and peck method) since my hands shake off the keys so bad. Anything would help, please.
New comment
Has anyone heard of this touch and hold "cure" outside of this blog?
touch and hold
can someone please inform me more on this method, how effective, where can you get this treatment, etc?
please contact me fwade@pdq.net
thank you
Mary Wade
Left finger dystonia
I had dystonia on my left fingers for 6 years. When I try to stand up from a chair, when I try to cross the street, or when I start running, I am frozen for about 5 minutes, my middle and ring finger curl toward palm involuntarily, my jaw is a little numb, and my right toes also curl in.When I pinch my right palm, sometimes I can control it. However I went to see a doctor this summer and got the diagnosis. I am looking for a doctor in California near Los Angeles area. Any referrals?