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TOPIC: writers cramp

writers cramp 5 years 4 months ago #1023

  • Gareth
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Hi,

My name is Gareth and this is my first posting.

I was diagnosed with writers cramp about 5 years ago, having suffered with the symptons for about 5 or 6 years. Believe it or not, my GP decided that we should investigate the phycological route before considering the neurological! Figure that one out!

Having spent 3 years or so in different sorts of anxiety therapy the 'experts' then decided to send me to a real expert, i.e. a neurologist. Within seconds he had me diagnosed!

To cut a long story short, I have been received botox injections in my arm for a number of years and they are having an ever decreasing effect on the movements in my arm. If anything, things seem to be a lot worse currently as there is such an inconsistancy in what my arm is going to do that, to be frank, I would probably be better of just having the spasms and movements.

I am a 41 year old sales and marketing manager for a manufacturing company, and have to visit clients and sites on a regular basis, which frequently puts me in embarrasing siyuations such as siging in to offices and writing out surveys etc.

It would be really helpful to liaise with someone who is in a similar postion to perhaps bounce ideas, coping strategies etc and even to get some idea of what sort of explanations you give for what is happening.

I am also very open to the idea of other forms of treatment, experimental or otherwise, as I have 25 years left of my working life and I do not want to give in to the illness.

Many thanks for taking the time to read this, and hope it isn't too long winded!

Gareth
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Re: writers cramp 5 years 3 months ago #1191

  • JacquiB
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:) Hi Gareth, I have Cervical Dystonia, but on 15.8.12 I went to have my botox as usual. And asked my neurologist that I seem not to be able to write or hold a pen, I now also have writers cramp. He injected botox into the muscle, am wearing a tube grip on my wrist at moment, but he said we have to see how things go, hopefully well, if not I believ he is considering a splint.

I hate having to write or sign for stuff and always having to explain myself. I have been told that you could use a tennis ball and reguarly squeeze it, should help stregthen the weakness.

Anyway hope to hear from you.

Jacqui
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Re: writers cramp 5 years 2 months ago #1232

  • supadeja
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Hello, I have writers cramp also and have for about 8yrs :cheer:

It all started when i put my hand through my hand and one finger would just bend without me doing it. Then other fingers followed it - Now I only have use of the little finger and the thumb on my left hand.

I also have Botox jabs in the left arm (Do you find they hurt SO VERY MUCH? They do to me - But I also have M.S. so who knows)

I have given up with the exercises - I see no point as every Botox jab is like wiping the mind of that hand. :S

I am lucky after seeing some horrific person at one Hospital (Who is now retired) - I now see a wonderful doc at my local Hosp. Tho it still hurts like hell and I am so traumatised by the first jab I am desperate to find some way of making these jabs not hurt so much (Like a G.A. - lol)

One thing I have found helpful is a night splint! This is like holding a can of beans (bit smaller) in the hand at night and it is all cuddly like a teddy due to the sheepskin like covering.

The problems with the Dystonia in that hand/arm means it hurts cos my wrist twists and the fingers are now all trigger fingers somehow which is annoying they are like spring loaded to go closed again but the botox helps me to open them and I noticed at night when i wake but am still very dozy the hand is opened a bit!

I pray one day they will find a better way to deal with this as every botox jab thing freaks me out so much due to the pain of it. This doc when I met him was reading a book how to do it - But he did it better than the prof did whom I first saw! So I guess maybe he is very talented :-)

Hope some of my drivel helps in some way

Sue
Last Edit: 5 years 2 months ago by supadeja.
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writers cramp 7 months 4 days ago #4142

Hi,
My name is Claire and I am 44 yrs old and have suffered from writers cramp for nearly the last 2 years. I have had multiple scans etc and now see a neurologist at A local hospital. I have had 2 Botox injections into the top side of my forearm, with the last 1 just a week ago. My right hand now just aches and feels heavy. I don't honestly know if I want to continue with this. I am a teacher so you can appreciate the effect this is having on my life. I am feeling really down about this and perhaps need to rethink my career. Would appreciate any support right now
Thanks
Claire
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writers cramp 7 months 3 days ago #4143

  • supadeja
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Hi Claire. I have had this for 14yrs + now - I had the Botox jabs of hell for 6yrs. Then I just stopped - After the jabs the hand was so 'flamsy' (unuseable) Then all of a sudden it would come back after maybe 3mths and gradually close again - The agony of the jabs left me with PTSD about it - The Dr said the last time I saw him ''If it hurts you so much maybe you shouldn't come again'' This was after the third time he had hit a nerve or something - Which feels like lightening of pain going through your hand and is soooo very very painful! Suffice to say I have not been since that day and I just suffer with the hand.

When I am in bed half asleep I can open the hand like a normal hand. But the moment I wake up - It immediately closes again, It is very often achy and after all this time my arm also aches at the top. But I just cannot face those jabs anymore - They were so horrific to me and hurt so very much to achieve so very little time of not-so-normality.

There are some tablets you can take that might help you to open your hand - I have not tried them so cannot advise on that but your Neuro should know about them.

This is one really testing thing to live with - And doing normal things become very stressy - Other people do not understand the complete frustration to have to ask someone to help - Especially when it is obvious that you are getting more and more upset by being unable to DO this simple thing..... Some people don't want to take over and do things - Some people will offer to help - Some people just sit there until you are almost screeeching in frustration and then say 'You could have just asked me to... ''

It is very annoying living with this - I find it hard but - I just cannot go through the trauma of knowing a Botox jab is getting closer and closer and then going through that when it is not the injection that hurts (Bar when he hits the nerve) as soon as the plunger is pushed - THAT is where it really hurts for me. My Physio told me she saw a person who was mostly paralyzed injected in one arm - And she said they FELT the Botox... I don't know much about that obviously I was not there - But - If someone who can't feel anything at all suddenly feels it - That says to me - Botox is not everyone's friend....

I wish I was able to give you more answers - I just wanted to come back and tell you that people like you are out here and I will be an ear if ever you need me - Not sure if email works via this site - I will check - But I am happy for you to keep in touch if you would like that, if there is a private message facility on here that is to be able to swap emails etc.... :-)

In so many ways you find tricks to cope with doing certain things - Opening cans and food packets etc is somewhat impossible without help. On my left hand all I have the use of now is the thumb. Weird how all this started when I tried to put my fingers through my hair and one suddenly closed.... Little did I know when that happened - What it would become down the line....

I keep telling myself that worse things could happen to a person - But I have also contemplated amputation of this annoying thing - It is like someone else controls the hand. Like it is possessed.. If the thumb was not of such use to me - I guess I would consider that more - But - The thumb is something I need to be able to do anything - That... And the thought of the pain bit of it is another off putting factor....

I really hope that you can find ways of helping you to live with this horrible malady <3
Last Edit: 7 months 3 days ago by supadeja.
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writers cramp 6 months 1 week ago #4145

  • jude62
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Using oversized pen or pencil helps
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