Cervical Dystonia

[Krsnasmile]

Hello , it affects my neck, shoulder, arm wrist, fingers, on my right side which was already weak due to plexus injury. After reading about botox , I decided against it since it would weaken me even more. My right side is weak and i can barely use it, if and when i do, it triggers and attack and I pay for it later. I am used to do everything on my own and i really hate asking for help..with groceries or fixing something. I need to learn some humility here. I tried cbd oil for the pain and it helped whether it was auto suggestive or not. It relaxed me. The key is relaxation and avoid stress..easier said than done. It gives me some relief to hear others live with the same thing. I take it one day at a time, i stay distracted and my legs are strong so I walk and love the ocean and bird watching. A lot I can do still even if once upon a time i kayaked and played tennis and all that jazz. One must adapt and accept what i cant change and make the best of it. My condition got worst after double mastectomy from breast cancer in 2005. Hang in there and keep your spirits up.!

[Rkai]

Hello Andrée

I found your description so helpful and uplifting. Your courage and common sense reminds me to keep adopting the same principles. Like you I now live a much more limited life style with cervical Dystonia, mine triggered if I dare to relax any muscles. Thus my muscles are now automatically tense which is exhausting. The only release is through hydrotherapy....the warm water, arm woggles and a neck float enable me to be pain free.

Could you tell me what is cbd oil?

Thank you

[Krsnasmile in reply to Rkai]

Hello and thank you for your comment ; cbd oil is from Cannabidiol , part of the Cannabis plant called Hemp, which contains zero THC(psychoactive), the one I use. It s legal here in Florida. The stronger CBD needs a doctor's prescription and a medical card to make it lawful. I tried it once (Hemp oil)when my neck was in spasm and it helped me relax. Each episode brings me a certain level of panic, the feeling of not being in control of my body..so being able to something about it and knowing someone understands, helps a lot.

Hydrotherapy is my savior really, specially here ocean waters are so warm in summer, I find such comfort floating for hours and relaxing. I am not a good swimmer because my arms but i manage fine inside my floating ring where i can rest my neck when it gets tired. Yes its a real drag having this condition but after surviving cancer twice, I am trying to not complain and be so glad each day i do wake up and I do what I can to stay relaxed by chanting mantra and eating right and trying to clear my mind of worries. I want to live and not constantly complain (sometimes i cant help it, i get so frustrated) All we can do is our best, the rest we have to grin and bare. Stay strong and know that we are not alone with this, no matter what degree we have it.

[Rkai in reply to Krsnasmile]

Thank you Andrée.

Your response is so interesting. First to learn that you are in Florida. I had assumed you were from UK! Second to learn about the cbd oil...and your comment about people understanding....

So many people around me just don’t know anything about Dystonia....including some in the medical profession...it has no profile here at all although 70,000 people have apparently got it in UK. We need the equivalent of Freddie Mercury....in terms of what he did to raise the profile of AIDS round the world.

Anyway it is great to meet you through this forum .....thank you for sharing your thoughts.

[Krsnasmile]

Greetings, indeed Cervical Dystonia is a rare and very painful neurological condition and all people i know, had no idea what that was. Experts noticed that it most often happen as a result of another disorder or disease and in the USA it affects 390 out of 100,000 people. It is complex, not much is known about it scientifically. They only go by what we describe and classify it in that way..and watch and see how fast or slow it progress. Not much can be done except dealing with this by our own trials and find our own way to get some relief. Lets not forget that some of us have a bad time dealing with it psychologically, depression, anxiety and fear of going out and get embarrassed such as me going out to eat with a friend and eating with my right hand since I am right handed and thought if i was very careful i could manage picking food up with a fork...I did just that and a strong twitch made my hand jerk and the food flew and landed next to the guy and girl a couple tables down from us. They were talking and saw something from the corner of their eyes but did not see what it was....I was embarrassed but started laughing , i just could not control my laughter. After this i finished eating with my hands, never mind the utensils. Doctors like to prescribe tranquilizers and i absolutely refuse to become drug addicted on top of it.