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Patients Focal dystonia

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Member Carenity • Community manager
Posted on

Hello,

Tremors are a common symptoms experienced by those with focal dystonia, which can impact many daily tasks.

What part of your body mostly suffers from tremors? Which tasks do you find the most difficult as a result of the tremors? Do you have any modifications or tips to help perform those tasks despite the tremors?

Please share and discuss

Beginning of the discussion - 4/29/19

How do tremors impact your everyday life?
1

Member Carenity • Community manager
Posted on

Hello members. Hope you do not mind me tagging you in this discussion. Feel free to comment, share, and discuss with each other.

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How do tremors impact your everyday life?
1

Member Carenity
Posted on

My head tremors due to cervical dystonia causes me to avoid haircut because I feel everyone is watching me.  My best way of dealing with this is to go right after a massage.

How do tremors impact your everyday life?
1

Member Carenity
Posted on

@Armor2 Luckily my hairdresser has been cutting my hair since I was 12 and she comes to my house for cuts/color so I just hold my head as straight as I can and it’s usually still cut a bit crooked but it’s ok bcuz it goes with my neck lol... and yes humor gets me thru a lot.. 

Shame on them.. And let them stare.. we all have something I feel whether it shows on the outside or is on the inside.. 

How do tremors impact your everyday life?
Member Carenity
Posted on

I try to ignore them which is extremely difficult because I'm a cashier at Walmart. Beyond that, they exhaust me when coupled with MS & terrible allergies. When at worst, they embarass me and cause plenty of pain. 

How do tremors impact your everyday life?
Member Carenity
Posted on
I also find that my tremors become worse when I am tired, or spend anytime at a computer even though I have tried to adjust the height of the chair, the tilt of the monitor anything to see if it works. I retired from work because I couldn't put up with the pain anymore it was taking over my life.
How do tremors impact your everyday life?
Member Carenity
Posted on

I'm truly sorry to hear that, Armor2. I try to push away thoughts of not being able to work. If that happens, I'll lose custody of my 8 year old. Her father (ex-husband) , while not physically abusive, is very detached from her emotionally.

How do tremors impact your everyday life?
Member Carenity
Posted on

I felt that was happening with your situation, and my heart goes out to you.  It is tough to know you have to work with no other options and to have CD on top of that.

How do tremors impact your everyday life?
1

Member Carenity
Posted on
Over a year ago I was noticing my head would always want to go to the left or up. It's very painful and distracting to me and those around me. Last July I was diagnosed with Cervical Dystonia. Botox has not helped, Lidocaine patches do not help. There's no pain medication available due to those who have abused them. Some days, I don't know how I can keep going.
How do tremors impact your everyday life?
Member Carenity
Posted on

I have had better results with Xeomin than Botox. Botox helped at the beginning but not so much on further injections.