Dystonia

[cookeint]

Any help?

[GymBag]

parkinson.org/Understanding...

[cookeint in reply to GymBag]

Thank you. Article wss good.

[CplParkinson]

What would you like help with exactly. Understanding it or experiences?

[cookeint in reply to CplParkinson]

I have dystonia in my buttocks and hips. It is so painful and occurs daily and lasts anywhere from 2 hours to 24. Typically in tandem with off time in relation to my 5pm and 8 pm dose of dopamine. I am in pain that has become unbearable. Docs have no answers. I use hand massage, machine massage, yoga, stretching, music, meditation and laying on tennis balls. I have not been able to go out to dinner for over a year. I am at wits end. Hopefully someone will have some additional ideas.

[CplParkinson in reply to cookeint]

Mine used to be in my legs and feet and shoulders. My doc had me on amantadine 100mg. 4 times a day to help with that. After DBS, 2 years ago just the leads in took my dystonia away.

[Kwinholt in reply to cookeint]

I have dystonia in my ankle , foot neck , face at times . Very painful . Parkinson’s is very painful in itself . My dr wrote an article about the pain that goes along with this disease. I get Botox shots in my foot and leg and I also use a 4:1 ratio cbd/THC spray to injest to ease the pain . When pain is TOO. bad I may try a muscle relaxer or 1/2 pain pill but don’t like to. I also exercise and run and stretch a lot. Hope this helps

[cookeint]

Thank you do much. The only thing I have not tried is botox. I will give it a try@