Dystonia Forum
Our forum dedicated to dystonia brings together patients and relatives of patients. Let's discuss this disease of the nervous system together : symptoms, daily life, treatments... Let's exchange tips!
Ongoing discussions - Dystonia
Current topics:
-
- Do your doctors or other people take your dystonia pain seriously?
Hello one and all. I've had dystonia since 2007 - secondary since it was from a Brian injury. My dystonia is cervical, axial, right arm etc I live my life now 50 percent of the time in bed. I am tr
-
- I have dystonia and I struggle with the way people look at me
Hi everyone, I hope this post is in the right place. I have cervical dystonia and the longer it goes on, the more it impacts my daily life. I feel like people are staring at me. The people I meet t
-
- How do tremors impact your everyday life?
Hello, Tremors are a common symptoms experienced by those with dystonia,and they can impact many daily tasks. What part of your body mostly suffers from tremors? Which tasks do you find the most diffi
See all the discussions
Current topics:
-
- Cervical dystonia, worsening eye sight, mouth pain/discomfort
well after only recently finding out. I have this crazy condition, my Dr. is sending me on t another neurologist for some other problem’s, such as my eye sight getting much worse, abd they tell me m
-
- Cervical Dystonia, but now nerve pain all over lower body?
Hi everyone. I have been diagnosed with cervical dystonia and the symptoms I have had have always been centered around the neck region. However, recently I have experienced nerve pain into my legs and
-
- Do you suffer from painful or disabling involuntary muscle movements?
Hello, One of the main symptoms of focal dystonia is the appearance of involuntary abnormal movements related to the uncontrolled contraction of muscles. Do you or your loved one suffer from these i
See all the discussions
Current topics:
-
- Botox injections loosing results?
Hello everyone, I have been receiving botox injections for cervical dystonia now for going on 5 years. After the initial injections I could feel the positive results and about the 9 month mark, I f
-
- CBD for muscle spasms?
Hello, has anyone had any success with CBD for muscle pain and spasm and twitches? If so, what dosage and brand? Is it vape, edible, or sublingual? I have tried vaping, I think it was 15 mg, but d
-
- How do you manage the pain caused by your dystonia?
Hello. I've had secondary dystonia since 2007 after a brain injury. I am so confused. I spend half of my life in bed. Before dystonia I was never in bed. I don't sleep. I'm in incredible pain. Boto
See all the discussions
Ongoing discussions - Muscles / Skeleton / Joints
Current topics:
-
- What natural herbs or supplements have you tried for painful joints?
Hello Carenity members, I have had numerous surgeries on my clavicle (in fact, I have the first ever done surgery on my clavicle and I am in some medical books - have basically very minimal of my ori
-
- Getting mobile when you cant move
Any tips on regaining mobility.just getting back on your feet has so many challenges looking for ideas and support on this topic..
-
- Photo testimonial: Years of diagnostic uncertainty facing Ehlers-Danlos Syndrome
Delphine's testimonialYears of diagnostic uncertainty facing Ehlers-Danlos Syndrome When I was a child, I was already in pain. Back pain, stomach pain. I thought it was the same for everyon
See all the discussions
Ongoing discussions - Nervous system diseases
Current topics:
-
- Do you have a Bucket List?
Hello everyone, You can call me movin_on. I am diagnosed with Parkinson's. For those of you who may not be familiar with this term, a Bucket List is a list of things that one has not done before bu
-
- Applying for Supplemental Security Income (SSI)
Hello I have Spina Bifida and Hydrocephalus.I have tried applying for SSI disability but have been denied because I have to work to support myself in the meantime.Has anyone experienced this and we're
-
- Do you have a support animal?
Hello, I have depression, anxiety, and epilepsy. Does anyone have a support animal to calm you down or in this case a trained dog for epilepsy? I've had dogs practically all my life but now my b
See all the discussions